Seriouslyscared: Came off 17 years of Paroxetine 40mg far too quickly

September 11, 2016

I'm going to copy and paste seperate documents that I've written over the last few months below, so it may not be totally coherent.

This first document was written in early June 2016, just after I'd crashed into a severe depression.

After being put on Paroxetine when 17 for, at the very most, mild depression, with no offer of talking therapies and the "this medicine isn't addictive" line, I'd finally had enough by last autumn, as once again after having forgotten to take my liquid Paroxetine by six hours from the usual time, I was crazy for the next two days. So after 17 years on 40mg, I decided to come off. Initially I felt so good as I reduced by 10mg/5ml increments every two weeks reaching zero six weeks after I'd started, which was far better than the previous times when I'd tried to reduce or even just switch from the liquid onto the tablets at the same dosage. I was NEVER stable on the medicine for all the years that I took it, by which I mean I was either depressed and flat or agitated/irritated/argumentative and feeling more, and the doctors weren't interested.

After the initial mild depression completely passed in the spring of 1999, my doctor immediately began to taper the medicine down from 40-30-20mg over two 2 week periods. That was a turbulent and argumentative month!!! However, after levelling at 20 mg for that summer, I was then told to try to taper below 20mg at 10mg increments again. This quickly induced too much instability, and so a 1ml/2mg per week regimen was suggested. I managed to get down to 7ml/14mg before going to University that Autumn, but reduced no further while at Uni due to the instability while reducing, even though I remember an instability all that Autumn anyway. I suspected that this inherent instability might have contributed to me being thrown into a severe depression after an external trigger event that Autumn, leading me to withdraw from University, and from which I've been gradually recovering from ever since at my parent's home. Through the years I would constantly cycle through (at various rates and frequencies, both of which increased the better I got) a pattern whereby if I was feeling a bit better/more, I could get more sensitive, which could make it more likely that I could depress again. I noticed quite by accident once, after mistakenly taking two doses within a few hours of one another and whence temporarily overdosing, that I could amplify/accelerate this process to speed up getting better after depressing, by deliberately alternating the medicine e.g. taking my next dose 12 hours after the previous dose, instead of the usual 24 hour interval. However doing this the other way round, leaving an interval of 36 hours before returning to the usual dosing interval produced the opposite affect, e.g. it tended to lead to me feeling more depressed/bad rather than less, and whence was never intentionally practiced. After having improved over the years, this improvement felt like it plateaued from 2008-2012. I felt the most sensitive yet, but I could still depress, sometimes for up to months at a time. Then in the Autumn of 2012, after the GP's never showed an interest in my depression (having "reviewed" my medicine a handful of times over the years with a simple, "you want to keep taking it, alright then" and there always being another excuse for not referring me onto any other help), they now suddenly wanted to switch me from the liquid to the tablets, something which I knew from the past would not go well. This is because on at least two previous occasions this had been tried, both of which increased the instability, for exactly the same dosage. In preparation for trying to swap over again, I started to reduce my dose to exactly 20ml/40mg, as inaccurate/lazy dosing measurement in the cup had led me to taking more, perhaps as much as 50mg, for some time. I soon reversed this reduction on the liquid, as it was making me feel different and we were going on holiday so I thought I'd wait until after we came back. It was when increasing again (not when decreasing) that I felt bad, surprisingly so, like I had done on a handful of previous occasions in the past. This was after having been established on this medicine for a long time, not when first going onto it for the first time as is warned of in the patient information leaflet. After I finally switched to the tablets sometime later in that Autumn of 2012, I was surprised at just how good I felt at first, as this was a reduction in dose, as I never did subsequently reduce the liquid again, just as was the case when I started reducing in the autumn of 2015, in other words the opposite of what happened when I increased. However as I "stabilised", or not as was in fact the case, at the lower 40mg, the instability notably increased. Here I was taking the tablets, and yet I was never as "stable" as I was on the liquid. There was no longer a +/-3 hour window within which to take the medicine without a notable increase in instability as there was with the liquid. Now it had to be taken at EXACTLY the same time every 24 hours, even with EXACTLY the same food to try to reduce the instability to a minimum. I couldn't understand how this could be until I discovered something called bioavailability. A liquid is apparently more consistently bioavailable than a tablet. This suggested potentially significant sensitivity to this medicine! Soon after this happened, and this time with no trigger, I had the greatest increase in depression since the Autumn of 1999. I'm not sure that when I started to come off the Paroxetine in the Autumn of 2015 that I had yet returned to how I felt in the summer of 2012. This had seemingly happened because of the ANTI-depressant, and if it had happened now, could it have happened before, in fact how much of all of this could be down to the medicine?!

After stratospheric instability in December of 2015 after finally reaching zero dosage (after initially always feeling better on dropping each dosage level), things have only slowly got worse. Initially my appetite collapsed, which with accompanying Gastrointestinal issues that I'd had for a number of years after I'd started to take the Paroxetine (Gastritis since early 2003, recently diagnosed Visceral Hypersensitivity since May 2013) led me to become malnourished, loosing a fifth of my body weight in three months, and dumping a lifetime's worth of accumulated fat, that had built up as I'd always had such a strong appetite on the medicine. Then the dizziness/vertigo and intolerance to movement began; I could turn my head and it would feel like my head was lagging behind. I had a rash for the first time in my life on my upper chest, where I also had a strange pain just below the surface of the chest, as well as a rash on the sides of my neck and on my upper groin. After never having felt the cold, having sweated a lot of the time I took the Paroxetine, I was now ice cold to the touch in a house heated to 21C, (although recently as I've felt at my worst, I've started sweating profusely again/feeling really hot). I started to get numbness in my peripherals and then internally, including in my gums. After never having more than the occasional light tension head ache all my life, now my head felt so thick that I needed to hold it just to release the pressure, and I developed occasional brain fog along with cold/hot patches inside my head. I also developed lower back pain and pain just to either side of the spine. This all along with an on/off racing heart, shimmering vision, particularly noticeable against a brighter background (along with a change to a warmer tint of colours at times) and uncontrollable shivering in the chest when I wasn't cold, often most pronounced after eating. Oh, and a sickness and at times uncontrollable thirst that led me to drink up to 8 litres of water in my waking hours. A head MRI and abdominal CT scan, as well as a Full Blood Count and liver and kidney tests as well as a blood sugar and Insulin test showed nothing, and I was put on a special medical diet to bring me out of malnourishment, as well as a transfusion of Vitamin B Complex.

Little did I know that this was the easy stuff, as just when I was transitioning out of malnourishment and regaining my physical energy, the constant "lower" level of instability now went to levels never before experienced in my life! A non trigger led to simply unbelievable swings of mood from an inner rage to an anxiety unlike any other. I've never been a particularly anxious person all my life. I also felt SO BAD, a bit like I had very occasionally and briefly on the medicine, usually when increasing it, except now it wasn't abating, except briefly after crying/releasing. This all happened EXACTLY as I regained my energy and also became hypersensitive, with the opposite of brain fog, my head now feeling remarkably clear/pin sharp. So now I felt the opposite of numb; I physically felt/smelt/heard too much! When taking the medicine, I'd always know when I was feeling better/more as I could smell more, hear more, touch more, as opposed to having a somewhat dulled sense of touch, heavy limbs and the like. Now I was feeling an extreme version of this, and not feeling better but a real gritted teeth psychological pain/distress/anxiety. Then exactly at the same time as I developed a hyper vigilance; jumping at the slightest noise, my heart racing at the slightest thought; my sleep, for the first time in my life, collapsed. After having slept so much while on the Paroxetine, easily 12+ hours a night and a lot more if feeling worse which then returned to the normal 8 hours a night on coming off the medicine, now I couldn't fall asleep or stay asleep, for anything more than a few short hours a night at most, waking every 30 minutes or less, sometimes in a panic with my heart racing. I just feel so awake/so alert, and so can never relax.

I have spent since the start of May in my bedroom, staring at the ceiling, unable to sleep, with the swings in mood steadily slowing to a depression, after having felt at times so much after I came off the medicine, more than I ever did when on it. When the swings were at their most extreme, I could depress and then come out of it again completely in as little as two hours, with my head often spinning/a wave like sensation passing through the head as it did, something which could take months in the past, although I would never say that I came out of it completely in the past. Every time I depress, it's as if the hypersensitivity is trying to push back, and it's when I'm emerging from a depression that I feel at my worst. When going into a depression, I can get (at least a temporary) relief from the pain/distress/anxiety that I can especially feel when coming out of a depression. It's for this reason that I'm terrified to go back onto an anti-depressant (the doctors want me to go onto Fluoxetine 20mg) as when taking the Paroxetine I would always feel at my worst when increasing the dosage, even when already established on it for years, a bit like the opposite of how I felt every time I reduced it. I've bizarrely noticed that even an anti-histamine (Cyclizine) that I'd been taking for Gastrointestinal nausea has appeared to make me feel more/make me more irritable. How I would feel transitioning onto an anti-depressant, I have no idea!!!

Some of these symptoms I recognise from the constant instability while on the Paroxetine, just massively exaggerated, but others I have simply never experienced before in my life! I genuinely don't know if I'm going to make it! The kinds of thoughts that I have everyday are frightening. I've imagined so many ways in which I could end it all, as it's simply unbearable at times! None of the doctors seem to appreciate the seriousness of it! They all dismiss this as having nothing to do with the Paroxetine, "It's been too long since you came off it, it must be some underlying issue", even though I've never felt anything like this before in my life, and certainly never did before I was ever on the Paroxetine!!! I'm scared!!!

This second document was written to my sister at the end of July 2016.

I'm so scared! I don't know what's going to happen to me. Ever since I fell into a deep depression at the end of May, things have been so different to how they were up until that point. After that week in April, which was a warning of things to come, this all started in earnest at the start of May, when I had the greatest swings in mood ever. I then frequently felt really bad in short sharp bursts, which I was crucially able to release through crying, as I critically still had my feelings. However, as the swings abated, I was aware that I was starting to repeatedly depress, perhaps in response to the magnitude of the swings. However, even when I did depress, I always then came out of it again and was feeling so much! Then unfortunately at the end of the month, mum and I had a tiff when I was feeling at my most vulnerable, after which everything changed.

Ever since I came off the Paroxetine, I'd always held onto my feelings, often feeling more than I'd ever done while on it. Now I was the most depressed that I'd been in I don't know how long. The loss of this critical release valve, the ability to cry, was devastating. Instead of the constant variety that I'd had before then, now there was just a singular flat empty muffled sensation, interspersed with periods of drawn out anxiety that I couldn't really express. When I developed chronic insomnia in the second half of May for the first time ever, I could wake from my highly broken sleep in a panic with a surge of anxiety and a racing heartbeat, and then it would all pass, as I'd expressed it. Now when waking with anxiety, it can be very drawn out, and because I can't feel, I can't really express it like I could before.

I just don't know what's been happening since the the end of May. After about a week and a half, it started to feel like I was no longer depressing but perhaps trying to sensitise, and this process may have been continuing ever since, I don't know. This doesn't however mean that I've ever started to feel more than I have since it all changed at the end of May, it's more like a background effect. In other words the world didn't feel as alien/unreal after a while, there started to be a slightly warmer, or perhaps more accurately less cold, sensation at base level. I still frequently felt a 'bit' bad, as the depression was now burying the more intense bad sensation that I'd felt in May, but it was more constant, in other words I wasn't getting a break from it, as I constantly did in May. What had been a minority had become a majority. The 5HTP supplement unquestionably significantly accelerated this process. It provided a notable boost/lift. Suddenly things seemed warmer/less harsh. Sounds didn't sound as loud or brash. I was able to start to imagine opening the curtains on occasion. I still spent almost my entire life in my bedroom, which had not been the case prior to the end of May. However, now I was able to try looking at Facebook, however briefly, for the first time in over a month, and eventually even venturing downstairs in the middle of the night to try and watch a few minutes of TV.

All this horrific time, I unfortunately continued to look on the Internet for any info about what I was going through, and sure enough, there's no shortage of testimony. Some of the info has been useful, but unfortunately I so wish I had never come across some of it! This Welsh Psychiatrist who has spent his life researching this (and who is widely dismissed by the wider Psychiatric community), and some of the people on these websites have written simply unimaginable things! They talk of this protracted SSRI withdrawal syndrome lasting months, and in some cases years!!! There are even some who claim that they've never got over it all, although the vast, vast, vast majority do. Reading this when I've already felt as bad/anxious/health anxious as I have has been simply nothing short of devastating at times. I know that I simply couldn't survive some of the timescales that some of these people talk of. I'm a perfectionist with OCD tendencies. I have a low tolerance threshold for health issues as it is. Last year's worsening of my eyesight after the eclipse caused me no end of distress at the time.

The other thing that I've discovered was that I made the biggest mistake of my life last autumn, when I came off the Paroxetine at the rate that I did. All these websites, every single one of them, all say that the slower you reduce or taper your dose, the less likely you will have any/these problems. They all say that you should never reduce/come off your medicine without consulting a doctor first. The problem for me however was that I'd lost all confidence in the doctors. I should never have been put on the medicine in the first place, and every time I'd tried to talk to them about it, I'd just been brushed aside. So, while I knew that you couldn't just go cold turkey, I could have still looked at what the current recommended advice is for the rate of reduction, especially as it would have taken so little time! Why I didn't, especially given how naturally cautious I am, is inexplicable. Although in reality I know why I didn't, I didn't want to find something that might upset me/scare me off coming off, as I'd wanted to do so for so long, but it had simply never gone well in the past. I knew that if the withdrawal symptoms became intolerable I would slow down my rate of reduction, but they didn't, and so I continued at a rate that I now know was 4 times faster than recommended by the Royal College of Psychiatrists, and up to 6-8 times faster than recommended on some of these websites. Even Dr Clements (my GP) has now stated that he would have advised at least a 6 month taper, not an 6 week one. When reducing I knew that I might have to slow it to a 10 month taper, but because it went so much better than I'd hoped, I just kept going, thinking that I could get it over with sooner rather than later. What would one year of tapering have been in the larger scale of things! What have I done?! I hope that this mistake hasn't cost me my life!!!

Since coming off the 5HTP almost two weeks ago, everything has started to sound louder again, smell more, even some brighter colours seem brighter than I remember them to be. This of course distresses me again. I also when trying a one off 5HTP dose about 5 days after I came off was surprised by how much more of an effect it had than when I first went onto it. I've continued to forever brighten/energise since I've come off (although with absolutely no feeling) and am now wondering if I'm more sensitive than ever, whether this 5HTP was in fact a good idea after all. Whether my brain started to get used to the higher levels of serotonin, which when removed again has led to even more of this effect. I just don't know. I do know that the low level of tinnitus that I started to get when I started taking it didn't stop when I stopped it, it just got louder. Other physical hypersensitivity symptoms seem to be returning as well, with me now starting to feel some pain for the first time at night, some itchiness, more anxiety, sleeping even worse. The involuntary muscle twitches/spasms have also returned/increased. My head is also now spinning just from having some anxious thoughts which never happened before. I can physically feel some things so much! I've noticed a slight tremor in my hands. My vision seems to be shimmering more than ever at times, and my heart has started to palpitate and race more again.

This delightful Welsh doctor/some of these websites have also suggested that going onto another antidepressant doesn't necessarily help. That because your nervous system can be thrown into effectively a shocked state by this SSRI withdrawal syndrome, that adding some other medicine won't necessarily help. That all your neurotransmitter levels need to be able to get back to their normal levels themselves, and that introducing another medicine might interfere with this process. This truly horrified me when I first came across it, as I need to know that at least something can help me, especially if the doctors (including the Psychiatrists) are in denial about this. I feel so abandoned by the medical profession that did this to me, and so alone, not knowing what's going to happen, as I can't go on like this for any length of time! I've never been in a position like this in my life, and simply don't know what is to come! I'm so scared!

This last document was written after I unfortunately, in desperation, tried the Paroxetine again for just 4 days at 1mg, the second biggest mistake since last autumn's life threatening fast taper.

At the start of August, I unfortunately made the biggest mistake since last autumn when I came off from the Paroxetine far too quickly. Out of desperation from another horrible night with truly horrific nightmares of doom and no way out, I tried the Paroxetine again. Just four days earlier, after coming off the Cyclizine, as it was now bizarrely waking me up as opposed to slightly sedating me, and consequently sleeping slightly less horrifically that night, I tried some Chlorphenamine, at between 4-8mg per day. This did soften things just a little bit, made things seem a little warmer. I was also able to cry a bit after taking it, just like with the 5HTP, even though this felt much gentler than the 5HTP. Why I didn't trial the Chlorphenamine longer I'll never know.

I knew it was a risk to reinstitute the Paroxetine, but I thought that at worst it would make me feel worse, whereby I could then stop and it would be out of my system quickly. How wrong I was! I had suspected that I was becoming potentially ultra sensitive, and so I took an ultra cautious 1mg of Paroxetine each day for four days. The effects were immediate. Within minutes of taking the first 1mg, the world changed, it looked less cold, more like it used to, a bit like it did with the 5HTP, but more and quicker. I also became immediately more cautious, less willing to do things, just as in the past. No longer did I want to go for a walk. It also immediately quietened my incessant obsessively racing thoughts, which is why I unfortunately continued with the trial beyond the originally planned single day. The original intention being to try this SSRI with the shorter half life in preparation for a potential trial of the longer half life Fluoxetine. Because it appeared to work better than I'd feared, I unfortunately continued for four days. For the first three days and nights, I was as strikingly awake/alert as I had become after coming off the 5HTP. I was dipping into the lightest shortest sleeps imaginable, with frequent unimaginably horrific nightmares, like never before experienced in my life. I continued to never yawn. Then on the fourth morning, I yawned for the first time, started to feel a bit tired for the first time in weeks. I also felt better to the extent that I felt able to venture further from the house than I had for months. I even allowed myself to dare to believe that maybe this could provide some relief from this unending numbed hell. That evening, I discovered otherwise. I had just started to burn an incense candle in my room to try to aide with relaxation. Now I strangely couldn't smell it, unless I literally put the burning candle to my nose, while previously the smell had filled the room. Then I had a bath and noticed that for the first time in my life I could get in without adding any cold water. I'd always had a low heat and pain threshold all my life. I also realised that my pain threshold also appeared to have risen. No longer would it hurt to pinch my arms like it always had done. The ankle that I'd sprained earlier in the day seemed to hurt surprisingly little. This SHOCKED ME! I immediately stopped the Paroxetine. That night, I slept a little less horrifically than I had for a while, since the 5HTP. Also, the anxiety had significantly reduced. The nightmares seemed to stop. Two days after my smell had significantly reduced, I noticed my taste also reducing. The foods that I'd just started to eat again, as the one recent positive had been the return of the appetite, no longer tasted as full bodied as they had. This unsurprisingly shocked me further! Now I had four major changes in the physical senses, never before experienced in my life, from just the smallest shortest trial of the Paroxetine. Yes the senses had been too high, but now they were too low, like never before in my life! It appeared that the Paroxetine was dampening things across the board. As if the previous direction of travel, which for months had always been to sensitise, was now shockingly thrown into reverse to a place that it had never been before. When I had been most depressed in the past on the Paroxetine, my physical senses had been somewhat subdued. I always knew when I was feeling better/more in the past because I tended to smell more, feel the heat of the bath more for example. But NEVER was it anywhere close to this extent!!! I certainly never smelt/tasted less like this for example, and the heat/pain thresholds we're also never affected like this! I now realised that I felt the swings in heat/cold that I'd been experiencing for months much less, so much so that I wouldn't always even realise that I was overheating until I physically touched my chest wet with sweat. When curled up in a ball in bed in the morning, often unable to get up, I would get just the faintest hint that I might be feeling cold like I often would in the past.

These four major new symptoms however were not to be the last, worse was to come! The one side effect that almost stopped me ever taking this vile stuff when I was 17, when I never needed to in the first place and which unfortunately changed the course of my life, was the sexual one. All the time that I was on it, I was aware of it's dulling effect on the libido/sexual pleasure, and so was so pleased that when I came off it last autumn, that effect lifted. In fact the libido went through the roof. Now, for the first time in my life, I'm impotent. I can't state enough how much this horrifies me!!! The quietened thoughts also evolved into a cognitive impairment. All these years, the one way that I coped was through keeping myself entertained. My whole life I've had a sharp mind/excellent memory. I've always played mental games with myself, never been bored, EVER. Now I started to notice that I couldn't remember people's names that I've watched for years on the TV, that I wouldn't remember what I'd just done/was about to do. I would keep coming up against one mental block after another. Initially this was only intermittent, but it's now becoming more permanent. Then I realised that I wasn't observing as much as I normally would. I've always been a very observant person. If I thought of something else, then all my concentration would go to that, and I would miss all kinds of things that I would normally have picked up at the same time. Then I noticed that my mind was becoming 'softer', like it's never been before in my life, the opposite of the razor/pin sharp state that it's been in for a few months now in this constant fight or flight response. However the fight of flight doesn't feel like it's gone away, it just feels like all these new symptoms have been grafted on top of it, just as the 5HTP grafted a degree of calm/warmth onto the agitation/upset which still seemed to continue underneath in a muffled state. So the thoughts can still be faster at times for example, but when they are I then just hit more mental blocks more quickly. I can not stress enough just how distressing this new symptom is!!! We all live our lives through our intellect, our cognitive capacity, our mind, and I've always been intelligent. It's always been a defining feature of who I am. This cognitive impairment may not come across in this document, but I can forever correct this document/go back over it. It certainly takes longer to write these than it did. Also, if you've always had a good mind in the first place, losing some of it will still leave you with comparatively a lot, but I notice the difference!!! I also wonder if I might loose more if and when the faster mind of the fight or flight response slows down underneath. For me to be affected like this for the first time in my life is almost impossible for me to deal with, and causes me no end of additional stress!!!

After all the emotion disappeared as I crashed at the end of May into a severe depression, I still, unlike the past, not only had all my physical senses to the full, but to too higher a level. This allowed me, when I was finally able to leave the house about 8 weeks later, to still have the associative memories from the smells that I could really smell for example, if nothing else. Now I've significantly lost these physical senses for now as well, and have so turned something from which I only got very rare breaks before into a CONSTANT hell, with NO breaks. I can't stop thinking for example, as when I try to distract myself as I'm meant to try and do, I start hitting numerous mental blocks like I never would have done before, and so it upsets me even more again. I simply do not know how to deal with this never ending crisis, from which I do not know whether I'll survive. To top it all off, my sleep is deteriorating back to how it was prior to taking this vile stuff again, but with all these other symptoms remaining/worsening. I've also noticed a reduction in my appetite again, an increase in gastrointestinal inflammation, I've started yawning uncontrollably on doing deep breath exercises, and I've started clenching my jaw for the first time in my life. All from just four days of a so called medicine that I never wanted to touch again, and should certainly never have been prescribed in the first place all those years ago for nothing more than lower bowel problems!!!

Finally after noticing that I couldn't even understand words spoken on the TV unless they were enunciated well, I then tried one of the previous pharmaceuticals that I hadn't dared take after the reinstitution. I took just half a propranolol 10mg tablet. I had been taking these on and off until the reinstitution. Now it was different. That night I slept even worse than normal. Then 2 nights later I noticed that I was loosing some more taste again, and now apparently some more of the little smell that I had left. If this is because of the propranolol, which never happened before, then what if anything can I take?!? I've also noticed that the warmth that I felt on numerous occasions after the reinstitution of the Paroxetine has reduced and my cognition/memory have improved, and my libido improved a bit. My heart is also racing slightly less than it did. In other words, it feels a bit like it did after coming off the Paroxetine again, when things temporarily improved as always, but still worse. While my mind is clearer, it's still not in the ultra sharp overdrive that it was in before the Paroxetine reinstitution. My mood has also felt a bit better at times, just as it always did when coming off in the past, except that all I've come off is the Propranolol! If I'm now this ultra sensitive, then how I can cope when things get worse again with not being able to take ANYTHING, as they surely will, I have no idea!!!

Looking back, I find it so hard to accept that I made things considerably worse when I tried reinstituting! While it was hard to see at the time, I had made some progress. I'd started to leave the house, eat more than in years, and the Chlorphenamine had taken just enough of the edge off to make things manageable. Yes I was emotionally number, so I felt like screaming with nothing behind it for example, but at least I felt like screaming. Now I'm 'feeling' much more like I used to when I felt worse on the Paroxetine, but worse; apathetic, flat, empty, except that I've been off it for over a month. I don't know if I'll ever get these things back, and can't see how I can go on like this for much longer, as things just seem to get worse and worse. I've read what other people have said on this website, and simply can't understand how they cope!!!

September 11, 2016

Welcome, Seriouslyscared.

You've written so much, it's hard to retain more recent details. I gather that after 17 uncomfortable years on Paxil, you went off 40mg Paxil over 6 weeks in the autumn of 2015. You suffered acute withdrawal symptoms until the spring. Your symptom pattern then shifted to what we might call post-acute withdrawal syndrome.

At the start of August 2016, you tried reinstatement of 1mg Paxil for 4 days with mixed results, then abandoned it. Your current symptoms are "depression" (perhaps what we would call emotional anesthesia), sleeplessness, heart racing, surges of what feels like anxiety, and post-SSRI sexual dysfunction (PSSD).

Is this correct?

What is your current sleep pattern? What is your current daily symptom pattern? What is your current drug intake? Please keep notes on paper.

September 11, 2016

Thank you for responding so quickly.

I was on that stuff for 17 years, half my life, I'm now 35. It changed the course of my life. Below is a cut and paste of some of the symptoms that I've had;

Agitation, severe Anxiety (including health anxiety) often worst in the morning, intolerance of stress, massive swings of mood from rage to depression, frequent suicidal thoughts, racing heart, palpitations, chronic insomnia for the first time in my life, vomiting, rash, no appetite leading to malnutrition and weight crashing 20% in three months, peripheral and then internal numbness followed by physical hypersensitivity, including sensitivity to light, sound and movement, hyper vigilance, dizziness/vertigo, enormous thirst, shivering, coldness to the touch/sweating at the same room temperature, lower back pain, chest pain, heart ache, involuntary muscle movements (twitches/spasms), increased salivation, shimmering vision, change to a warmer tint of vision, tinnitus after taking 5HTP for three and a half weeks, slight tremor in the hands, severe depression. After reinstitution for four days of Paroxetine at 1mg; higher pain threshold, higher heat threshold (can't tell anything as well anymore whether I'm hot or cold, including not realising that I'm sweating), significantly less sense of smell, less taste, notable impaired cognition, especially memory recall (names of people/places/events and what I was just doing/going to do)-I've always had sharp mind/excellent memory, making mistakes all the time now, can't make out words spoken as clearly, can't filter out background noise as easily, clenching jaw for first time ever, increased upper GI inflammation and reduced appetite after having gotten it back for the first since last autumn recently, massive reduction in libido. In other words, previous long term hyper sensitising process feels like it's been dramatically reversed, although still in fight or flight response, it's just more muffled like everything else.

What was so weird was the delay in the onset of the acute physical withdrawal symptoms. They didn't start until 2 months after I came off, in February, although I had had psychological ones from the beginning last October, although not too bad in my opinion. Then the psychological ones went through the roof in May, as the physical ones lessened. Been in acute psychological withdrawal ever since in my mind.

I had no PSSD that I was aware of prior to the reinstitution. I've never had reduction of smell/taste, increase in pain/heat thresholds, or cognitive impairment/memory loss prior to reinstitution. This is what I find the hardest to deal with.

My current sleep pattern is as atrocious as it has been since mid May, but worse. Very little highly broken sleep at night. Maybe 4+ hours at best, hard to tell, after being life long deep sleeper.

Current daily symptom pattern that comes to mind. Apart from being aware of the lower physical senses all the time, the impaired cognition has been the hardest to deal with. Also, wake up with anxiety, although less than prior to reinstitution when it could be simply horrendous. Jittery head, frequent distress, racing heart/palpitations, continuos tinnitus, some aches and pains, especially at night, head getting thicker again, constantly hear/feel my heart beat/blood pulsing through my veins, especially in the legs, especially while in bed, hands/feet flushing while standing up, eyesight flickering from darker to brighter, most noticeable in darker light now.

The reinstitution didn't produce mixed results in my book. Any gains from less horrific nights were more than outweighed by this whole new symptom cluster. It was as if the hypersensitivity/hyper vigilance was artificially dampened, but is still there underneath. Before then I was going out everyday, after having been bed bound for 8 weeks, even on the worse days. Now, rarely go out, even on the less horrific days. I am terrified that I may have thrown away any "progress" that I was making before, and that I'm now so sensitive that I can't even take a beta blocker/antihistamine anymore to try to give me some relief.

Current pharmaceutical drug intake; Omeprazole 30mg daily for long standing gastrointestinal issues that developed on the Paroxetine., the rest are vitamin and mineral supplements mentioned in my signature, also omega 3.

I've read on this site and others that the best thing to do is radical acceptance. The problem is I've never been good at accepting health problems because of my OCD perfectionism, so I literally don't know how to cope with this and am fighting it all the time.

I don't know how much more of this I can take, and have spent a lot of time recently contemplating/planning suicide.

Thank you for listening.

September 12, 2016

Hi Seriouslyscared,

I read through what you have written and I'm so sorry this has happened to you. I'm pretty sure I understand what you are going through because there are a lot of similarities between our stories. My drug damage comes from different drugs, but we have similar timelines, I also had a delay in experiencing an onset of secondary new and worse withdrawal symptoms after 'tapering' off lexapro over 6 - 8 weeks.

I also tried reinstating a small amount after being in withdrawal for over a year, the result for me was also bad and in hindsight I realized it set my recovery back. Symptoms returned which had disappeared.

Your symptom list is very familiar to me, having experienced it myself, but it does get better.

I want to write that again, because that's what I was told over and over again when I first found this site..... it gets better. It does, sometimes much too slowly, but improvement and recovery does happen.

I've been drug free for over 3 years now and was suicidal at one stage, it was so bad and I couldn't see any hope. But now, I'm glad I chose to keep living because even though I'm still on my recovery path, and still have some bad days, I've also experienced feeling well again and happy and can now see some hope for the future. Life might not feel like its worth all the suffering right now, but its not always going to be like this, you are going to get better.

You wrote that you have a difficult time with acceptance, this has been my steepest learning curve too. I've always been a problem solver and fix-it kind of person. If there was a problem, there had to be a way to fix it.... fast. But this is different, we recover, but the solution is time, along with taking care of ourselves with a healthy diet, lifestyle and minimizing stress.

There are a lot of us here who are in protracted withdrawal after CT or a too fast taper, you are not alone.

You are getting about 4 hours sleep now, I know that seems like its not enough, but it is and over time your sleep will improve. I went from getting about an hour of broken sleep per night and frequent wakings into panic states to where I am now at about 6 - 7 hours of fairly good quality sleep. I used to be a solid 8 - 9 hours a night person.

Others will share their own tips and stories and offer suggestions about your specific situation, but for now here are some links which I hope will be helpful.

What is withdrawal syndrome?

Here is the link to our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover. Especially read the topics pinned at the top.

Acceptance

For those who are feeling desperate or suicidal

You can use this thread as your ongoing journal to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. Its a good idea to bookmark it or follow it, so its easy to find again.

I'm glad you found us, there is a lot of friendly help and support here.

Petunia.

Edited September 12, 2016 by Petunia
added another link

September 12, 2016

Hi seriouslyscared and welcome to SA,

There is a lot of very good information on this site. The best way to search for exiSting discussions is to use a search engine. I use google and type in survivingantidepressants.org + topic.

For example: survivingantidepressants.org insomnia found these 2 topics:

http://survivingantidepressants.org/index.php?/topic/53-tips-to-help-sleep-so-many-of-us-have-that-awful-withdrawal-insomnia/

http://survivingantidepressants.org/index.php?/topic/2782-withdrawal-insomnia-success/

September 12, 2016

Seriouslyscared welcome

Well done on finding sa

sure can relate to your opening story in many ways.

Some of these symptoms I recognise from the constant instability while on the Paroxetine, just massively exaggerated, but others I have simply never experienced before in my life! I genuinely don't know if I'm going to make it! The kinds of thoughts that I have everyday are frightening. I've imagined so many ways in which I could end it all, as it's simply unbearable at times! None of the doctors seem to appreciate the seriousness of it! They all dismiss this as having nothing to do with the Paroxetine, "It's been too long since you came off it, it must be some underlying issue", even though I've never felt anything like this before in my life, and certainly never did before I was ever on the Paroxetine!!! I'm scared!!!

Could have written this myself.

Arent the doctors so ignorant ...if only they would try some of their own medicine. Yet when invited they refuse!! Pity they cant see what might be unsafe for them is in fact unsafe for others too!

I can assure you this has nothing to do with you and everything to do with the drug withdrawal.

I'm not going to sugar coat this but imo you may well be looking at a long journey of recovery and we are talking years. But as i found and Petu found it does get better in time. You are not alone this site is full of people in the same situation as yourself.

They all say that you should never reduce/come off your medicine without consulting a doctor first.

Dont worry this is a silly statement because doctors are clueless. Its because of their ignorance we are in this position.

Even Dr Clements (my GP) has now stated that he would have advised at least a 6 month taper, not an 6 week one.

But even a 6 month taper would have been too fast and how would dr Clements taper for those 6 months would he have suggested alternating and skipping doses? You most likely would have needed to taper for about 5 years. Check out member Brassmonkey and look at his tapering timeframe or member Songbird. imo if you had tapered for 6 months you would be in a very similar place to what you are in right now. Besides if mr so called 'know it all clements is so retrospectively clever what was he doing sitting back leaving you on this chemical for so many years watching the prison bars of addiction by stealth thicken and not do a single thing about it. Perhaps, no doubt, too hypnotized by and addicted to the pharma prescribing kickbacks! (Did you know that paroxetine has a 2012 3 billion fine attached to it gsk found to have hidden the fact paroxetine is highly addictive and paying doctors prescribing kickbacks). GSK have also managed to hide withdrawal symptoms by pushing what Breggin called a 'massive and cruel hoax' by deceiving doctors and the public into believing that when they witness wdl symptoms they are seeing a 'relapse'.

When reducing I knew that I might have to slow it to a 10 month taper, but because it went so much better than I'd hoped, I just kept going, thinking that I could get it over with sooner rather than later.

This is the trap we have all fallen for. Dont worry if our doctors havent a clue how can we be expected to know.

Thanks to pharma the true natue of these chemicals have been hidden.There has been a large betrayal by the medical profession to patients concerning this. The wdl symptoms are delayed (sometimes for months) and so one must drop and then hold waiting for a good month to see if the neurological coast is clear before dropping again. This is a process that can take years and gives the brain and cns time to heal and adjust to the new lower level.

What would one year of tapering have been in the larger scale of things! What have I done?! I hope that this mistake hasn't cost me my life!!!

You can get your life back but you will have to be patient.

If I'm now this ultra sensitive, then how I can cope when things get worse again with not being able to take ANYTHING, as they surely will, I have no idea!!!

What ever will be offered by a doctor will be assumed to be safer than it really is and may in fact put you in a worse position.

Wishing you strength for the journey ahead ...yes this is scary stuff but you can make it.

Hang out at sa there is a wealth of info on coping and surviving and healing from this.

Hang in there

nz11

ps you might like to read the book by whitaker 'Anatomy of an epidemic'

I believe the Welsh doctor you speak of is Healy and i recommend his book 'pharmageddon.'

September 12, 2016

Thank you for all replying!

What I find impossible to accept at the moment is how things were just going that little bit "better" at the start of August after I'd crashed in May, and then I threw it all away by unnecessarily trying a reinstitution. Dr. Healy suggested somewhere on the web that Chlorphenamine might help, and sure enough it started to take the edge off just a bit. But because I was still having unspeakable nightmares/horrific morning anxiety, etc, I did what I did, and it's been downhill ever since, with all these new symptoms that I'd never had before, and now I feel like I can take NOTHING to alleviate this hell, not even a propranolol, as I seem to have sensitised even more, while losing so much more. I had hoped to try melatonin, curcumin and theanine.

I know that cognitive impairment/memory loss, and loss of libido are common withdrawal effects which I didn't have before the reinstitution, but have you come across anyone describing loss of smell/taste, or changes to heat/pain thresholds, as in this reverse sensitisation process? Does it all come back? As I said, I've always had an excellent memory/mind, and it's just so distressing to have this impaired. I'm guessing a good chunk of the daily distress/grind that I'm suffering is my inability to deal with/accept this, and yet I don't know how.

I'm also worried what this is doing to me physically, having my heart forever pounding/palpitating away, sleeping so badly yet often having so much energy/feeling wired, etc. Am I going to burn out?

To give you an idea of the delayed onset of this horror, a month after I took my last dose I went abroad on holiday! It wasn't a good holiday, but that would simply be unthinkable now!!! I've also wondered if the starvation diet that I was on at the time, eating between 500-1500Kcal once every two days for nearly four months with my weight crashing, may have insulated me from the worst of what was to come, as it only really hit me once I transitioned back out of starvation. Could I even have continued to unknowingly 'take' some Paroxetine through all that fat that was dumped in such a short space of time? I was in a starvation diet because my appetite collapsed after I withdrew, but also because I unfortunately stopped at the same time the Sucralfate liquid, which contains aluminium, and which you're not meant to take for longer than 3 months, but I took for 21 months. I wanted to actually be able to eat a Christmas meal this year for once, as opposed to just more rice/hard boiled eggs, etc, and so I reasoned that if I just ate once every two days, maybe the inflammation would be low enough to allow me to eat something nice without becoming bedridden. I took it because after my previous reduction in Paroxetine in early 2013 and significant increase in depression, my GI problems got MUCH WORSE. The constant upper GI inflammation was only controlled to a degree by this Sucralfate. I still couldn't eat any warm/hot food or drink anything other than water, and the more I ate, the more unwell I got, by which I mean feeling constantly nauseous, achy joints, itchy eyes, exhaustion, enormous sleep, etc. So I had a significantly impaired quality of life just from this unexplained GI stuff. All the doctors were baffled. The problem was that the longer I took this Sucralfate, apart from feeling even more crackers than usual because of the way that this and the Omeprazole made my stomach feel, the more neurological symptoms I started to get, which always lessened/went away when I came off it. These included a coldness/numbness in the peripheries, with pins and needles and eventually a strange head. These symptoms were very similar to the physical symptoms that I had earlier this year, and so for a long time I misinterpreted them as being from the Sucralfate, thinking that maybe I was now dumping all this aluminium that may have built up in my system over nearly two years. Some of this upper GI inflammation has lessened after I came off the Paroxetine, and increased after the reinstitution! I've had significant upper GI problems for years, which I never had before I was prescribed Paroxetine.

Looking back, what I find really galling is that I NEVER needed to be put on Paroxetine. I was an extrovert in my childhood, always performing, and went to University to study Acting. I never went to my GP about depression, which at the very most might have been mild situational depression, I went about lower bowel discomfort, something which I subsequently discovered runs in both sides of my family. They were never put on antidepressants for it, and I certainly shouldn't have been! When I went to Uni for those three months, it was the happiest time of my life, I was just starting out in my new independent life. I was also reducing the Paroxetine, and it has always been when I've done that that I've fallen into a depression, and this was truly severe, like nothing before in my life!!! I came back home, and have lived here ever since, never having had a partner or a job, fluctuating between agitation/frustration and felling a bit more and depression. I did get better over the years, but still nothing like before I was put on it. When I wanted to talk about my increasing suspicions that maybe the Paroxetine was playing a part in this, as opposed to this just being my depression, no doctor, including Psychiatrists, were interested. They had no interest in talking about the medicine that I'd been abandoned on or anything else. Even now, my GP who wanted me to take Fluoxetine, said I might need to stay on it for the rest of my life. When I try to talk to the doctors/psychiatrists about what I've now learned to my horror, there's a barely concealed contempt for my delusional arrogance that I could know what's going on to me better than they do. The psychiatrist even wanted to discharge me, saying that if I don't want to take the medicines for the "return of the depression", then why do I even bother seeing her?! She said there's no such thing as protracted withdrawal and that a "discontinuation syndrome" could only have lasted a few weeks! If only that were so!!!

How did you get through the worst of it near the beginning? Every day is a struggle, a grind of existence/survival, and it never feels like it's going in the right direction. Even when it was, although I couldn't see it at the time, I threw it away and now have lost so much more. I don't see how I can cope with this/survive this, especially if it gets worse again, and now I can take NOTHING.

September 12, 2016

As NZ said: "Hang out at sa there is a wealth of info on coping and surviving and healing from this."

Anger about what has been done to us is a normal, and understandable, reaction. However, we can't change the past and need to learn what we can do now to improve things. Many members find that accepting and distracting can be helpful. Here are some links to things that might be helpful:

September 12, 2016

If you look around at other Introduction topics, you will see you are experiencing a not unusual case of post-acute withdrawal syndrome.

What exactly were the symptoms that caused you to go on omeprazole? If paroxetine was the cause of those symptoms, perhaps you can go off omeprazole now? See That acid reflux pill may be causing your health problems

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you.

Also read

Waking with panic or anxiety -- managing cortisol spikes

Irregular heartbeats, palpitations, tachycardia, bradycardia

Do psych drugs stay In body fat for years? Released by exercise....

And other

Important topics about symptoms, including sleep problems

September 14, 2016

Thanks for responding again Allostrata!

I hear what you're saying, it's just that it doesn't feel very POST acute at the moment, especially considering that it didn't really become acute in my mind until 6 months after I'd come off the Paroxetine, for whatever reason.

I've been taking PPI's on and off for years due to upper GI issues that started a few years after I was put on the Paroxetine, but became at lot worse after my previous reduction in Paroxetine in early 2013 and subsequent significant increase in depression. I've NEVER had reflux. This was always to reduce the constant sensitivity/hypersensitivity that I had, originally in my stomach (what the doctors called Gastritis), and then in my oesophagus and mouth as well (what the doctors eventually called Visceral Hypersensitivity, and for which I was prescribed another antidepressant, Nortriptyline 10mg, which I've never taken).

I've been taking Omega 3's, either through eating oily fish or supplementation, for months now, and have repeatedly seen anecdotal evidence that it helps. I've also been supplementing with Magnesium and others mentioned in my signature for years. A hair mineral and toxic element analysis that I had done last year before I came off showed low levels of Magnesium, as well as raised levels of Aluminium, which is why I had the test done at the time.

I'm so reluctant to try anything new on top of what I'm already taking now, after this disastrous attempt at reinstating the Paroxetine, and subsequent response to even a Propranolol now. I fear my nervous system might be so sensitive now that I don't know what I can take! I had wondered about Curcumin, as well as Melatonin for the sleep and also Theanine. Are there any relatively 'safe' supplements that I could try, like the aforementioned or others, or would it just be best to lay off for now? Also, have you come across any others who had reduced smell/taste and changes to their pain/heat thresholds?

September 14, 2016

Welcome Seriouslyscared.

For what it's worth, I somehow managed to skip the acute phase and go directly to the "post acute phase" myself. I hit my worst phase many months after quitting.

I am getting better

September 14, 2016

It is unfortunate that you had an adverse reaction to paroxetine that was treated with another drug, omeprazole.

Omeprazole is not an insignificant drug. It can reduce absorption of B vitamins, which are essential to nervous system functioning and healing.

Please read the links and consider reducing omeprazole.

October 2, 2016

How I wish I'd NEVER tried the Paroxetine again, even though it was for only four days at 1mg eight months after I came off far too quickly. I've only been going downhill ever since, with a seemingly endless list of new and returning symptoms. Now it feels like I'm in a different universe from the already hellish one that I was in before I tried it again.

Since I last posted, the cognitive impairment, which I'd never had before in my life, has gotten worse. Then I had some derealisation with perceptual distortions for the first time in my life. Then my sleep, which collapsed in May and had remained relatively similar ever since, is now deteriorating again, like halving. And now the severe upper Gastrointestinal problems I had for the last few years on the Paroxetine, and which had improved markedly the longer I'd been off, have returned with a vengeance to the strongest level in years. Everything from the stomach up can become ultra sensitive/burning on eating ANYTHING, at worst even when only drinking water, producing a nausea so strong that the thought of food is sickening, and I just feel like throwing up.

I know that nutrition is foundational to improving, and if I can't eat anything/very little without feeling constantly ill like I did in the past, then I could be heading back toward the starvation diet that I was on earlier this year (for different reasons), and given how sensitive everything now seems, that doesn't seem like a good idea!!! So much for reducing the Omeprazole!

January 5, 2017

After I threw my recovery away at the start of August by attempting a reinstitution of Paroxetine, the following three months were hellish, especially September. However, as October progressed, I started to get signs of a reduction in the rate of falling, and at the end of the month even felt like I was on track for a window. The only 'good' thing that came about as a result of the reinstitution was an increase in the ability to cry, after having been totally numb in the prior 10 weeks after I crashed. This allowed me, as had been the case over the many years that I suffered on this poison, to deal with how I was 'feeling', and to perhaps start to get a bit better.

Then the most stressful event imaginable happened, my life long alcoholic father came home one day and really hurt me 'emotionally'. If it hadn't been for him, I would have escaped this poison in the late 90's and had my life (when I was ironically tapering much slower, after having been on it for less than a year, than I did when I came off it after 17 years in 2015). If it hadn't been for the trigger event just before the new millennium, I wouldn't have been thrown into a severe depression which took another 8 years to reduce to a level that reminded me somewhat of the life that I had before I was drugged by the doctors. Although I never got 'better', and the constant side effects of the poison only worsened over the years. So when all these years later, when I was already in the state that I was in, something happened again, it threw me so hard, and it's been downhill ever since.

For the first week, I was crackers, in what my mum described as a manic type state. I was also smothered and numbed by the pain of what had just happened. The DP/DR also got much worse, and I started to get visual disturbances in my peripheral vision for the first time ever. Then overnight, everything got much louder, and the PSSD that I'd developed for the first time after the reinstitution morphed into the MUCH worse PGAD! This I immediately recognised as very serious indeed, as I'd learnt in the early 2000's that abstaining from any sexual indulgence would always help me get 'better' quicker, by which I mean feel more, not be as severely emotionally numbed. It would also allow me to feel less 'cold' emotionally, less horribly alienated, less distant from the world, something which I now know is called DP/DR. If I ever did sexually indulge, my constant agitation/instability would go up, sometimes through the roof, and sure enough I would soon be thrown back into a severe numbness. This was a pattern that repeated pretty much for all the 17 years I was on this poison. So when finally coming off this poison in the autumn of 2015, I knew I had to abstain absolutely, so as to not push the now stratospheric instability higher still. However, after having felt very little sexually for all these past 17 years, I was now astonished at how much I did feel, and consequently ended up having a couple of 'accidents', which happened uncontrollably at night while sleeping. These accidents unsurprisingly threw the instability to extraordinary levels, where for the first time in my life I thought I might truly loose control of my actions. This process continued for the 6 months before I psychologically crashed at the end of May 2016, with the heightened sensation always highest when I felt like I was falling; so when I first came off the poison, for the few weeks before I crashed six months later, when I came off the 5HTP that I unfortunately took after I'd crashed unable to cope with the unspeakable horror of the acute phase. Then I disastrously took the poison again for 4 days and very quickly developed PSSD. I was horrified, as the one side effect that almost stopped me taking this poison in the first place in 1998 while under 18 was the sexual one. Now the heightened sensation had been thrown into reverse, just like everything else. However, if I WAS to have a sexual dysfunction, PSSD was still infinitely preferable to PGAD, firstly for the obvious reason, and secondly because at least I didn't have to worry about any destabilising accidents.

Sure enough the PGAD has made me much more irratible, which has self perpetuated this worsening of symptoms ever since. When I got the louder noises and PGAD, I regained the ability to cry, just like at the start of August, when retaking the poison took the pressure off the acute phase and aloud me to cry again. My cognition also curiously improved somewhat. A week and a half after getting the PGAD, still unable to process the traumatic event that had happened, and frequently highly agitated, I was thrown into a severe numbness, just like I remember in the early 2000's. Then as the noises got louder still, so did the tinnitus for the first time since I'd developed it after having taken the 5HTP. Then I got ear pain, which felt like an ear infection, with a strange fullness to the ear canals, which made sleeping even more difficult as I couldn't wear the ear plugs anymore. I also started to get aches and pains for the first time in a meaningful sense; first in the muscles, then in the joints when all the joints started clicking, even in places that I didn't think I had any joints! I also developed itches of an incredible level at the same time. I also started to get discomfort for the first time ever in the bowels (all my previous long running gastro problems that started a few years after I'd started taking the poison were always in the stomach or above). Now, as well as the pains, I was also visiting the toilet far more often, especially to urinate, which would happen even more often if the PGAD was more frequent/stronger. Also my toes and fingers would tingle (again more so if I had the PGAD) and my sense of touch was heightened, and I felt the touch of cold more for example. Taking a Curcumin supplement twice, and a B Complex supplement once a fortnight later, both times took some of the pressure off the ever worsening psychological symptoms, made me feel a bit more 'normal'. However, as ever, this effect was short lived and I paid for it down the line, as if they were further destabilising/sensitising my nervous system. The coldness to the touch/parathesias have also increased markedly, so that if I eat/try some light excercise on an excercise bike, I can get really cold again, just like I did earlier in the year before I crashed. And finally, the sense of doom/morning anxiety is also showing signs of returning, after having notably lessened/even vanished after the reinstitution at the start of August, along with the flickering vision going through the roof at times, along with the heavy head/dizziness also returning more strongly. In other words, the desensitisation that occurred after the reinstitution feels like it's reversing, and becoming more sensitive than it's ever been! Due to the increased bowel issues, I thought that I'd finally start tapering the Omeprazole. I'd been on it continuously now for over three years after my upper gastro problems became severe after the previous attempt to reduce the poison in early 2013. For all the years that I took the PPI's, on and off from 2003 onwards once my gastro health was impacted, they always made me more agitated still. I never knew why this was, and of course the doctors didn't believe it. So for example, if I selfishly indulged sexually AND took the PPI, I was almost guaranteed some horrific arguments, and the subsequent severe numbness. Id been reluctant to come off the PPI up until now for two reasons; I still periodically felt the upper gastro problems that I'd felt permanently for the three and half years prior to coming off the poison, and due to past experience with coming off other pharmaceuticals, I was concerned that if I came off it I might not be able to go back on if I needed to. I'd also wondered whether the long experienced increased volatility when on the PPI might indicate a psychoactive property, and wondered what tapering off it might do to my batterered nervous system. Still, I dropped from 30-20mg, and felt notably more 'normal' again for the first few days, just as I had when tapering off/stopping all these other psychoactive pharmaceuticals previously. Then a few days later, just as previously, my agitation went up markedly, and now I'm starting to get all kinds of physical symptoms from the slightest triggers/no triggers at all. I don't know what to do, whether to try to go back up to 30mg or now stay where I am for the foreseeable future?!

Since I crashed at the end of May, I had these two fairly stable blocks; first the horror of the acute phase, mitigated somewhat by the 5HTP, and then the second block after I'd thrown away my recovery and gained a shopping list of physical symptoms, while also taking the edge off the psychological effects of the acute phase. Now everything's swinging about/developing like never before. Just having some coconut water the other day produced a temporary lift for the first time ever, followed by increased DR, dizziness and the like. I can't keep sensitising for ever!

I know what I'm meant to do; meditate, change the channel, etc, and I was starting to do these before my dad threw me so hard. It's just that it's very hard to come to terms with the fact that all these years after he destroyed my life in the late 90's, he could have hurt me again so badly when I'm in such a desperate state, and was on course for my first real window since I crashed. It's also rather hard to change the channel with PGAD! The other thing is that I never gained that independent life experience before this poison destroyed my life in the late 90's, my mum became my long suffering full time carer as the years of severe depression/agitation dragged on, never mind the eventually severe gastro problems, and I never did get 'better', which is what the Psychiatrists said I would need to do before attempting to taper again, eventually they just forgot about me. Before I was drugged, I was a late developing confident, outgoing sensitive soul, who was a good dancer and had just started University studying Acting. I've said before, when I came off the poison in the autumn of 2015, in amongst the extraordinary instability/agitation, I felt more than I had since the 90's. What my father did then was incredibly painful, but I now believe/realise that if I hadn't had the constant instability of the original taper, I probably could have dealt much better with that event, and wouldn't have been thrown into a severe depression at the time, the likes of which I'd NEVER experienced before I'd ever been drugged, and he'd been hurting us all our lives. In other words, my stress tolerance was destroyed very early on, and now it's in pieces. In amongst all the severe depression/agitation of the early years, with the severe agoraphobia that I'd never had before I was ever drugged, I somehow managed to hold onto my optimism, but as the years ground on, and I never did get 'better' in the true sense, this drained away, and all the learned avoidance behaviours and negative coping mechanisms became so ingrained that I don't know how I'll change them now!

January 6, 2017

I recently started tapering Omeprazole, which I've unfortunately been on for three and a half years now due to severe upper gastro problems that started after I last tried to reduce the Paroxetine.

After having come off long term Paroxetine drugging far too quickly in the autumn of 2015, I'm now in PAWS, with an ever sensitising nervous system. After a recent traumatic event, this has all got much worse, and I started to develop lower gastro problems for the first time, so thought I'd finally try tapering off the PPI.

I always got more agitated still when taking the PPI in the past on top of the Paroxetine, and wondered whether it had psychoactive effects of it's own. It also made me feel LESS depressed when on it in the past, by which I mean less numb/feeling more (agitated).

Now on having tapered from 30mg-20mg in one go, my stomach has been OK, but my other WD effects have gotten worse; increased agitation/irritability leading to worsening of all the other physical WD effects. Has anyone else experienced anything like this while just on a PPI?

I don't know what to do now, should I try to titrate back up to 30mg or leave it at 20mg for the foreseeable future and hopefully ride out this notable worsening of the WD?

Edited January 7, 2017 by scallywag
moved from PPI tapering topic

January 7, 2017

SS -- I've moved your post/question to your introduction topic so that all your information, questions and answers are in one place.

Did you read the topic on Tapering off stomach acid blockers or PPIs?

If not, please do so and come back here with questions about your situation.

January 7, 2017

I've had that happen to me, when I go from 30-20mg my other symptoms get worse. Mainly because extra rebound acid agitates my system. So I keep going back to 30mg. Its extremely hard to change any drug once you are so destabilized from an SSRI.

January 7, 2017

I feel like once the system dampens down than drugs are so much easier to taper. But we obviously don't want to be on any drugs anymore so it's an annoying problem to have.

March 13, 2017

My continued inability to deal with the traumatic event of last November, along with suspected destabilisation from dropping the Omeprazole from 30-20mg, led to something fundamentally changing in mid January. By destabilisation I don't mean any gastro symptoms (at least at the time), I mean feeling more agitated, frustrated, crackers even, along with other symptoms like the world looking too bright, and feeling unusually bad, with the return of morning doom and gloom and horrific dreams, a bit like when after I crashed from coming off the Paroxetine far too quickly, just not as bad. I also lost weight really quickly, between 3-5 KG in just a few days with no change in diet.

After this destabilisation, something changed, and then for the first time since last August (when I disastrously retried a tiny bit of Paroxetine for four days) I started loosing things again. First my taste and smell starting reducing, again, after I'd in fact regained some of them after the resensitisation that seemed to happen to a degree last November after the traumatic event, when I gained one of the worst of all the symptoms, PGAD. Then I started noticing my hair becoming much weaker. I've always had good hair health all my life, now it was starting to come out much more easily. I first noticed it after washing it, but soon just running my hand through my hair would collect dozens of loose strands, and it's accelerating all the time. Just scratching my head seems to collect a number of strands on my scratching finger. I keep finding hairs all over the place; on my pillow, in my food, etc. I may soon just shave it off for the first time in my life and see if it grows back. It's far too long anyway, having not been cut since last April just a few weeks before I crashed. I've rarely left the house since then. The hairs elsewhere seem to come out much more easily too, including my eyebrows and all over really. I've also started to notice a number of grey hairs in my beard for the first time in my life. I'm 35. Then my digestion seemed to go down hill for the first time in my life. All the significant gastro problems that started in 2003 as a result of the Paroxetine were always in the stomach or above, never in the bowels as now. I'm producing far more wind now, and the internal noises can be near constant for sometime after eating. So I cut out all dairy, gluten, sugar (including fruit) and sugary drinks, which only ever included vegetable or fruit juices and Coconut water. I would never add sugar to anything. When I try just a tiny amount of fruit it all seems to get worse again, so I've wondered whether I could have Candida or bacterial overgrowth. This is ironically why I tried reducing the Omeprazole, because I wanted to increase nutrient absorption, and reduce the risk of any gastro imbalance/infection. I've upped the Probiotics. Now I fear I may be stuck on the Omeprazole for a long time. I've also started going to the toilet much more often and anything that I drink seems to just go straight through. I've also noticed my hand eczema getting much worse, which incidentally I also don't remember having prior to all the upper gastro problems starting in 2003, in other words prior to the poison. Also I've noticed my fingers looking strangely shrivelled/darker, like I've seen some old people have in the past, as if the circulation may have worsened. My nails have also become brittle. A recent full blood count brought back all the parameters in range, but compared to last July the immune results had halved, and were now just above the bottom of the range. My cognition worsened again, after also having improved a bit after the shock of November. Also all the muscle/joint/nerve pains that I'd acquired after the traumatic event seemed to lessen significantly as well, as it now felt like I was desensitising again.

Then I tried, stupidly, to confront the person who'd been involved in the traumatic event, in the hope that this could resolve things, or at least allow me to try to move on. Big mistake. My sleep massively worsened again and seems to have remained even worse this time, as opposed to drifting back to the already terrible baseline of prior, loosing I would guess a third or more of what little I had. The terrible mornings have come back and stayed this time, with me feeling so bad at times that I can't imagine how I can go on like this. The pains have also started coming back, although I've continued to loose more and more taste and smell. Eating some less strongly flavoured foods, like some vegetables for example, I can only now tell apart if I look at them. Otherwise there's nothing. Even some some animal meat I can barely taste anymore. It was never this low last autumn after trying the Paroxetine again. I may as well be eating cardboard, and eating is such a chore now as a result, with my appetite not exactly brilliant some days. I've been drinking water for most of the time since 2003 due to all the Paroxetine induced upper gastro sensitivity, but the little else that I now drink, mainly low sugar, chlorophyll rich, greens powder juices, also just taste of water, in other words almost nothing. I've tasted absolutely nothing in water since last August.

I do wonder when I'm ever going to see some improvement, as opposed to this ever worsening list of symptoms, which I deal so terribly with.

March 14, 2017

I forgot to mention that the shivering, sometimes violently, has also returned after eating. In the past this only used to happen after having sugary drinks, which I stopped a couple of months ago. Now it's happening after bone broth, for example. I've also started feeling really bad after eating sometimes as well, like the mood just lowers so much and I can feel terrible or worse, and then after a while it can start to pass again. This was once again a particularly notable symptom before I crashed at the end of last May. When after about 30 minutes plus after having some more of those sugary drinks at the time that the doctors had put me on because my weight was crashing, I could start to feel really, evenly shockingly bad, then I would break out in crying a deep pain, and it would pass, and the mood would lift again, and life seemed worth living again. At the height of this period prior to crashing, this happened sometimes dozens of times a day, as it started to happen without eating as well.

March 14, 2017

I forgot to mention that the shivering, sometimes violently, has also returned after eating. In the past this only used to happen after having sugary drinks, which I stopped a couple of months ago. Now it's happening after bone broth, for example. I've also started feeling really bad after eating sometimes as well, like the mood just lowers so much and I can feel terrible or worse, and then after a while it can start to pass again. This was once again a particularly notable symptom before I crashed at the end of last May. When after about 30 minutes plus after having some more of those sugary drinks at the time that the doctors had put me on because my weight was crashing, I could start to feel really, evenly shockingly bad, then I would break out in crying a deep pain, and it would pass, and the mood would lift again, and life seemed worth living again. At the height of this period prior to crashing, this happened sometimes dozens of times a day, as it started to happen without eating as well.

I have experienced similar symptoms. I am not off of Paxil however I do have some strange reaction to eating sometimes. Sugar can set me off . Carbs. IM investigating Histamine intolerence as well. You mentioned both broth...is that fermented? Could be a histamine response not sure. I wonder if Paxil has an impact here.

March 15, 2017

The bone broth is cooked once a week, bottled, then refrigerated and consumed over the next week. I've noticed that the more of it I consume, the more the shaking, with the first few small glasses not producing a response. I've also noticed this can vary. So on a less horrific day, I can consume more without necessarily shaking, but if the daily grind is worse than usual, then I can shake more readily, sometimes without consuming anything.

On a seperate note, I forgot to say in my post of two days ago that when my hair health suddenly weakened, my hair just seemed to die, as it were. All my life I've had naturally oily hair, so that without washing, it soon became greasy. Now, it's as if all the moisture/vitality has gone, it's very dry for the first time ever, much flatter than it used to be, and also very brittle. The scalp has also become much dryer and tighter. This happened at the same time as my skin became drier, especially on my hands with the nasty eczema. Snapping one of the many hairs in half that keep falling out is very easy, when previously it was always hard. I think I'll shave it off soon, and then try and moisturise my scalp, see if anything grows back.

As I also mentioned a couple of days ago, as distressing as all these physical symptoms are, nothing beats the mood, with the horrific mornings or sometimes even day times as well. I know this all feeds back on itself, but when I sometimes get a short lived uplift in mood, all the constant worries and rumination can melt away to an extent. Sure enough, it all returns, but it shows that this isn't just my inability to cope with this. I'm still dead inside with severe depression, alternating only with agitation/crying spells, the latter of which I welcome as it can sometimes help to 'break into' this hell, as has been the case most of the time since I crashed in May last year, but the mood can vary. These recent traumatic events have unfortunately been game changing and cumulative. I feel like my non existent stress tolerance just keeps lowering further.

July 11, 2017

Ss,

Wow, where to begin, bonny lad!

I am not a doctor, but I have personal experience of the prolonged suffering of gastric discomfort over about 60 years. I am 72.

Personally, I would not worry too much about side effects of Omeprazole if it gives you some relief from, say, gastric acidity. Anyway, at least not until you are a good bit older.

I was on Omeprazole from when it came out decades ago until last year. Tagamet and Cisapride had no effect whatsoever.

I did, however, have a gullet operation for gastric reflux in 1986 at the age of 41.

An NHS laporoscopy examination of your gullet and stomach will identify any obvious physical problem with your gut.

I had those about 6 times. Pursue your GP for one, if you have not already done so.

I think most doctors thought my problem was stress/chaotic shift pattern/depression - "no ulcers, a little inflammation" being the usual findings. Probably they were 75% correct.

I got stomach problems a lot less after the operation, but the advent of PPIs and the taking of a daily dose of the older antidepressant Anafranil (chlomipramine) eliminated the problem almost 100% for years.

I found Omeprazole to be the only "miracle" drug, ever, in my life for the relief of heartburn/gastritis/reflux. Millions of people are on it for that very reason.

One disadvantage of it is that it inhibits the absorption of important B vitamins. (As our knowledgeable Altostrata points out).

This fact is more important for elderly patients who are usually already running low on these vits. The situation worsens if they are on PPIs, and as with me and countless others, have been on them, for years.

All in all, I found Omeprazole the most benign of drugs for years until I became aware of the vit absorption problem for the elderly only last year, and firstly on this 1st-rate site.

As I have got older with my depression and anxiety, I started to realise that all the fears about "this food or that food" - all this looking for answers and flitting from one fad to another hoping for relief were pointless - wild goose chases. When the depression subsides, everything else works better. One stops blaming the shampoo and the time of day you ate the greasy fish supper. How you have your illness treated, or how you live with it is another matter.

"Newcassle" is well-known to most Brits as a town of hard men and women. I am guessing here that your passion for art/music and dancing may be a point of conflict with an alcoholic, almost-certainly "macho" father. My mother was not an alcoholic, but she "raised me" single-handed during my formative years 9-19. Quiet introverts are easy meat for bullies of any type.

Final thoughts. Your magnesium supplement? I now take the Malate form of the mineral. I found that citrate gave me gastric discomfort.

Also, try and refrain from chopping and changing your medication and supplements. Most on here will advise that as a start.

Wishing you better times, soon.

July 16, 2017

It's pretty hard to accept that all this symptom chasing for all of my adult life, when I never did have a job, learn to drive, have a partner, have any kind of real life, was pointless! That the doctors are largely clueless, and not just the psychiatrists.

The PPI's were originally prescribed in 2003 when I developed what was described as chronic gastritis after 4 years on the Paroxetine. I never did have reflux or ulcers, just a very sensitive stomach. So I've had a restricted diet since then (rice, boiled eggs, lots of yoghurt) drinking little else than water, all to dilute the acidity. This was severe for the first few years, then waned as the decade went on. By 2010-12 it was just a few weeks a year.

Then I tried to reduce the Paroxetine a bit. Was soon thrown once again into the greatest increase of depression since I first tried to reduce, in 1999. Serious SI happened again. Then a few months later, the gastro distress went severe. Now I had chronic fatigue like levels of exhaustion after eating, an horrific nausea, a constant low temperature, achy joints and muscles, burning lips off and on, sneezing all the time, terrible brain fog. All could be turned off by starvation. The upper GI sensitivity was now extreme, and all the way up into the mouth, with the mucosal membrane peeling off, throat burning, sometimes after just having water. All hot/warm food stopped, the foods I could eat were restricted far more now than with the gastritis. So off I trotted to the clueless doctors again. This time they gave me an antihistamine and an aluminium containing liquid Sucralfate. It's the latter, which while helping to cool my burning upper GI tract, slowly poisoned me. I developed peripheral numbness, dizziness and eventually became ice cold. All could be stopped by ceasing the aluminium liquid, but then I was bed ridden again, with no life whatsoever. Eventually things started to get so serious, I was ignored/messed around by the GP's for the umpteenth time, that I just came off the Sucralfate AND the Paroxetine on my own in the autumn of 2015, and the rest, as they say, is history. Interestingly, when I did come off the Paroxetine, at EXACTLY the same time, my upper GI hypersensitivity reduced MASSIVELY, at least for a while.

On the few outings beyond my home town over the years, Scotland was always one of favourites. The 17 years of nature bathing which I instinctively knew to do were always at their best in the Scottish highlands. And on the way back, we would always pass through South Queensferry, such a beautiful waterside setting! I would love to one day be able to see it again!

P.S. I always hated taking the Omeprazole. It seemed to almost have a psychoactive effect on me, always making me even more agitated, more argumentative than I already was for all the years I was on the Paroxetine.

P.P.S. The one thing my dad has never been is macho!

July 16, 2017

Thanks for writing again, Ss. Was wondering how you were doing.

All sure sounds a lot worse than much of my time of gastritis and other afflictions. At least I was able to work 1964-2002. You do seem to have been bombarded with a hefty salvo of ailments . Seeing off the depressive illness might help, though. I always found that when I was more mentally fit, all the other nasties diminished or disappeared. We are all different, though, and it would be wonderful if you could find a solution.

I do find the response to your taking of the PPI, surprising. But then "I am not a doctor". My mother was on the omeprazole, too, with apparent benefits much of the time. She was a petite, feisty woman of urban background and lived to be 93.

I do find my times living in a natural environment - mostly camping - over the past 52 years - curative. I can hear myself saying to my wife on our last outing a couple of years ago "this is where I feel best." Being so out of touch with nature, and with our finger not on its pulse like it used to be a few generations ago, has to be bad for us after having constantly lived within its major influence (for better or for worse) for millions of years before the Industrial Revolution.

Bad guess about your dad! Based on too small a sample! I did live beside and work with a few stereotypes, though.

Best wishes and good luck & carry on carrying on.

peng.

July 16, 2017

An update from March. At the start of that month was when I finally 'numbed out' from the trauma of last November. I'd had severe ahnedonia before while on the Paroxetine, especially in the early years, but NOTHING like this. It's extraordinary. Watching unpleasant news over these last few months, with attacks in the UK and so forth, is simply no different than if I was watching Bambi. I just couldn't care less! I also totally buried myself away in the house, not leaving it for months.

I now realise that I've had PTSD, not just as a result of going through this horror, but for YEARS preceding it. All that constant zombified agitation took it's toll. THIS is why I knew last year just how badly I would cope with withdrawal. That I would be one of those people who would freak out at every new symptom. It's just that the PTSD is now severe. This isn't just the constant fight or flight that I'm now in, the slightest most inconsequential triggers can set me off, leading to even more stress, more symptoms. It wasn't anything like this bad last autumn before the trauma.

The problem is I never grew up, I'm still a child. I had an alcoholic absent hurting father and a neurotic, controlling but loving mother. Perhaps unsurprisingly I developed OCD perfectionism in my mid childhood, although there is a history of it on my neurotic mother's side. Being a late developer, I was just on the cusp of adulthood, of flying the nest. Then I go to see a GP about nervous bowels, am given Paroxetine needlessly, and within the year, when trying to come off for the first time and with a traumatic event, my life is over. I believe the doctors when they say I need to stay on the antidepressant 'until I get better'. For the next 16 years I don't really do anything much, just somehow keep going. Then when the gastro problems became increasingly severe no I was literally poisoned with another drug, I finally came off. I'm repeating my earlier posts aren't I?

July 17, 2017

To get back to what's happened since March, after eating I would be totally out of it, after shivering after the first meal. The thousand yard stare had returned. This was incredible zombification. I was so numb that I'd totally lost the ability to cry. I just slept a few highly broken hours, got up (eventually), often after feeling really bad, tried to force down some food, stared blankly at the TV, repeat. Day in day out, week in week out. All the while my bowels continued to worsen. The industrial quantities of (apparently) foul smelling wind, the intestinal bubbling and constant noises, etc. Then I started to get some nasty hand eczema. The already dry wrinkly skin started getting really irritated. This all freaked me out of course. And yet when I tried momentary liposomal glutathione or Vitamin C, it could temporarily break the enormous smothered numbness, allowing me to cry for a short while, often within minutes of taking them. It's just that as ever, I lost even more smell, taste and sleep doing so. One day when this happened, I coughed hard (like I used to when on the Paroxetine), and suddenly the world seemed brighter. The colours were already drained since the re-trauma of mid February, now everything looked artificially brighter as well.

At the start of May the ever worsening physical problems after eating were now leading to real weakness. I was loosing my strength. I'd always been physically able to exercise up until now, I just felt too horrific to be able to do much. Then I changed probiotic. The effects were felt within days. My eczema started to clear, the brain fog went to previously unknown levels; I was having what I now know to be die off. I would cough uncontrollably after eating. My shivering after eating reduced markedly. I started to get things stuck in my head like last summer, with birdsong in the back garden just on an endless loop in my head. The PGAD was literally seen everywhere now. Before my brain could make sense of what it was seeing (as all cognition takes so much longer), I would see sexual imagery in chair legs for example, or between the branches of trees, etc. My missing of words in sentences, hearing similar words to what was actually spoken, not being able to understand accents anymore, went through the roof. And yet at the same time, as I saw the world through a fog, even though I have a terrible working memory, I was and still am bombarded with memories/flashbacks from the past. These memories, usually from before I was drugged, are thrown at me like darts. Just endless childhood memories that I haven't had in ages. It's almost as if my brain is regressing to before I was drugged. I also felt a change in mood. I wasn't so unbelievably smothered anymore, going out didn't seem so impossible. I finally somehow got to the dentist, as my teeth were getting increasingly bad. I didn't dare have local anaesthetic, as a number of teeth were patched up. Bizarrely my teeth were far less sensitive than they always have been my whole life, a bit like everything else. I also noticed however that while I could get out every week or two, things were still clearly not the same as before I numbed out in March. There was still a real disembodied detachment. My arms and legs and chest felt tense/numb.

July 17, 2017

As I was able to do a bit more, I finally Skyped a nutritional therapist, a real achievement in itself. I knew I was malnourished, watching the cartilage getting stripped from my body, after having lost all my muscles. My bowels were so bad now that I had to try and do something to slow the decline. I'd already simplified to a soup only diet, which was far too meat and fat heavy. But then I didn't know what else to do, having cut out a lot of the complex carbs due to them also worsening the bowel distress (after having cut out all sugar at the new year). I was severely calorie deficient, so had to up my protein and fat intake, which is hard to do when you have no appetite/returning upper GI hypersensitivity. And yet when I stopped the Oregano oil that had tempered some of the bowel problems/wind, things got so much worse again. The bowels were really sore now after eating. Lying in bed was uncomfortable. The urinary frequency had shot up. This led me to make a terrible mistake; I took a tiny amount of Lugol's Iodine, having read somewhere that it can kill off intestinal pathogens. It did lead to a temporary reduction in bowel distress but it also made the toxic load shoot up. Apparently it can force toxins out of the cells in your body as well as lead to candida die off. With exhausted detoxification pathways, this simply overloaded my weakened state. I started to feel really nauseous, sweating profusely for no apparent reason, feeling my veins burning followed by feeling ice cold. I would get notably more sick after having a salt bath, something that had never happened before. The nausea could be overpowering at times, making eating even more difficult. I would start coughing really badly, this time from the toxins circulating in my system. Black bits started to come up in the boils that were popping up on the hands again, just as they did when I violently detoxed early last year, soon after I'd come off the Paroxetine. I'd significantly increased my inflammation. I'd start to feel really hot after eating, not just out of it as always, but nauseous. The urinary frequency went to levels never seen before and it was burning now. Even though j was drinking 6-8 litres of water a day, it could still be really dark/brown at times. Now the bladder and associated plumbing can also feel really tender after urinating. Then these toxins could lead to a horrific depressive cloud coming down on top of me after eating, something I've never experienced before. The mood can deteriorate so quickly, I start to wonder how I can possibly go on like this. I immediately want to hide away in a darkened room, the world looks much more ominous, much darker. This can go on for an hour or two, then it passes, I need to urinate dark cloudy urine, and then I can feel less bad again. It's like I'm literally 'feeling' the toxins. It's shocking! I've just had a urine sample sent to the GP's, there's some protein and white blood cells detected in it. Now that I've inadvertently released these toxins with my body evidently unable to remove them, I've started taking liposomal glutathione and normal vitamin C to try to quell the inflammation. They do seem to cool me down somewhat, reduce the nausea temporarily, before it can return even stronger. They also of course shift the needle, just as these toxins seem to do, so I smell and taste even less, my sleep gets even worse, I become more irritable again, etc. I have also retried a tiny amount of chlorella, something that made the detox so much worse last year. Like last year a tiny amount, way less than a gram can still make my head spin, feel thicker, can make the world look different, and yet it still seems to mop up some of these toxins before then perhaps inducing more to be released. I really don't know what to do!

I was able to see a naturopath for the first time recently and she was shocked by my state, by my rate of hair loss, saying that she'd never seen these black bits come up in the hands before although she had heard of it, suspecting a heavy metal detox. The nutritional therapist recommended a urinary organic acids test via Great Plains Laboratory in the US. The results were not good. The metabolites in the urine showed sky high oxalates, significant candida overgrowth, bacterial overgrowth, some elevated C.Difficile levels, highly reduced glutathione levels, no NAC levels, no vitamin C levels detected, severely reduced B vitamin levels, problematic fatty acid oxidation, that I was in a Ketone starvation state, and that my amino acid metabolites weren't good either. In fact very few of the results came back in range. She says that I have to go on long term liposomal glutathione, vitamin C as well as at least B2 supplementation, as well as trying either a candida cleanse or a more systemic approach via something called Kib500. I don't know whether I'll be able to do any of these things, and yet without them I might just keep getting worse. I could take the Oregano oil/grapefruit seed extract before I released all these new toxins, now it seems to overload me. This is why I feel so helpless/worried.

And finally I was somehow able to see a Consultant Immunologist and a Consultant Gastroenterologist. Both of them assured me that there's no such thing as candida overgrowth (except in end stage AIDS) and that leaky gut is just a modern myth. After having my life destroyed my doctor incompetence, to come against these views just re-traumatises me again. I'll never see another psychiatrist in my life, but I still thought I might be able to turn to other specialisms. When I told the GP that had poisoned me with 21 months of aluminium before I finally came off myself, that I couldn't consume anymore sugary food/drinks, he suggested milk!!! What do these people learn for so many years???

July 17, 2017

Hi SS-- your recent statement "P.S. I always hated taking the Omeprazole. It seemed to almost have a psychoactive effect on me, always making me even more agitated, more argumentative than I already was for all the years I was on the Paroxetine." started me researching.

First off SA does not recommend the use of PPI medications because of their side effects and the trouble people have getting off of them Please read the following thread and related links. http://survivingantidepressants.org/index.php?/topic/2533-that-acid-reflux-pill-may-be-causing-your-health-problems/&

Secondly recent studies, as in the past two years, have shown that there is a link between taking SSRIs and PPIs at the same time and a significant increase of contracting Serotonin Syndrome, highly increased risk of stroke or heart attack and a laundry list of other side effects.

Although PPIs are not SSRIs they have a profound affect on neurotransmitters. They are metabolized by the same enzymes. Those enzymes show a preference for the PPIs causing the blood concentrations of the SSRIs to shot up. So in a backhanded way PPIs strongly affect the reuptake of neurotransmitters. Causing, as you noted, an increase of psychoactive symptoms.

It should also be noted that similar findings were listed for benzos.

So the conclusion is, if your are currently taking any SSRI, SNRI or Benzo do not take a PPI.

July 17, 2017

I long told doctors of my dislike of taking the PPI's at the same time as the Paroxetine. They didn't believe me when I talked of the psychoactive effect. I was only prescribed them to mitigate the increasingly severe gastro side effects that I now know were all caused by the Paroxetine. So when I came off the Paroxetine far too quickly I did so when also on a higher dose of the PPI. This also applies to the four days of an attempted reinstitution of the Paroxetine at a very low dose last August, which was a disaster. Also the antihistamine I'd been given to reduce the awful gastro induced nausea masked the withdrawal effects until it was too late to potentially reinstitute successfully. To say nothing of the effects of the severe detox that followed coming off the Paroxetine, that sent me off on a wild goose chase which also blinded me to the true reality.

What I can't understand is why I STILL have psychoactive effects from the PPI. Maybe it's just the hypersensitive state that my nervous system is now in so that any change will effect me, but reducing from 30-20mg of Omeprazole really ramped up the withdrawal again in the new year, with massively increased agitation, changes in sensory sensitivities, the return of horrific nightmares, etc. My stomach however was largely unchanged.

I see you did a more than 5 year taper. I can't imagine I would be in the desperate state that I'm now in if I'd know to do that!

July 24, 2017

Just to reply to Peng. I have no doubt that PPI's can help some people, a bit like SSRI's might even help SOME people, just not me. You sound like the kind of person who has benefitted from PPI's, given your description of everything tried before then.

Just to be clear, I had almost no depressive illness before I was drugged, just mild situational depression at most for which I never went to the GP's about. It was the Paroxetine that I now know induced the severe life shattering depression when I first tried to come off it in 1999. Then I was just left on it for another 16 years ('showing I needed to take it') until I finally disastrously took myself off far too quickly, long ago having lost any trust in the doctors. I now know that my entire adult life's destruction was largely down to the drug. Obviously my childlike mentality wasn't great, with the preexisting OCD perfectionism and immaturity, and this was the case before I was drugged when I was after all still a child, but I was LIVING life, enjoying life, had my whole life ahead of me. Whenever I now try to tell a health professional that it was the drug that massively exaggerated the problems that I already had before I was drugged, as well as throwing me into the most severe depression imaginable, I just get a blank stare, as if this simply just doesn't compute, being repeatedly politely told 'what does it matter what led you to where you are'?

A few years into the severe depression all the gastro sensitivities began, interestingly at the same time as the severe numbness was just starting to reduce slightly, as I was just starting to 'sensitise' more generally as I would call it. I now believe this was down to significant receptor down regulation, rewiring around the enormous chemical imbalance that the drug induced severe depression had caused. It's just that this adaptation had significant physical as well as psychological consequences; I became much more volatile as the years went on as I cycled much more frequently between numbness and 'feeling' more (crackers). I know that this is all just a theory. Anyway my diet was hugely restricted to very bland simple foods and water, and I was now pretty physically unwell. That's when the PPI's were thrown at me. My carer mum quickly learnt to know when I was taking the Omeprazole (it became intermittent) as I was always even more crackers/argumentative when doing so. She would say 'you're on the Omeprazole again aren't you' due to me being even more snappy than usual. The same effect would happen after what I would term an indulgence, a plesureless sexual release with the anorgasmia that existed for the entire time I took it, rather cruelly replaced by PGAD now. Combine the two and an almighty argument was all but guaranteed.

There are plenty of people in Newcastle who fit the description of the hard man, it's just that my dad was never one of them. He was born in Edinburgh, grew up in Nottingham and eventually settled here marrying my mum, a child like naive loving judgemental mother fleeing the Soviet Bloc.

Edited July 24, 2017 by Seriouslyscared

July 24, 2017

Hi again, Sscared,

Thanks for your last well-written post. You certainly do not have to worry about your clarity, coherence and writing abilities. Better than nothing in your situation, I reckon!

Yes, the PPI thing is a surprise to me. I did not know it had mind-altering capability. Certainly the albeit limited number of folks I have heard of personally have not reported those side effects. Such a pity it could not help you with the stomach discomfort - I know how decades of that felt and so wanted to support you by giving you a tip.

Never mind, back to the drawing board.

Best of luck with your next tactics - thinking of you.

July 24, 2017

PS.

Just found this on drugs.com, in the section for professionals - omeprazole - side effects.

Psychiatric

Common (1% to 10%): Insomnia
Rare (0.01% to 0.1%): Agitation, confusion/reversible mental confusion, depression, aggression, hallucinations
Postmarketing reports: Anxiety, apathy, nervousness, dream abnormalities, psychiatric and sleep disturbances^[Ref]

Confusion, agitation, aggression, depression, and hallucinations occurred predominantly in severely ill or elderly patients.

^{Clearly, many symptoms like these appear to be rare. Maybe you are just unlucky. Certainly, most on here know that insomnia will cause us to feel like death warmed up and will run our defences down until we become extremely vulnerable.}

^{My GP once said to me "stop looking for rare causes of your illness!" As a scientific person, I had to agree that on the balance of probabilities that is a reasonable request. However, our illness/es tends to make us want to look for a culprit or rogue wearing any garb, in the entire population.}

July 24, 2017

I think that quite a few of us are unlucky, otherwise we wouldn't be where we are.

Omeprazole did provide some symptom relief from the gastro sensitivity caused by the Paroxetine. It's just that it always came with a price, ramping up the agitation even more than the norm. But I was left with little choice as the gastritis would just sap the energy and life force from my body, as well as make me feel sick. I just wish I'd looked for the root cause of the gastritis in the first place, as with the rest of it. Instead I listened to the doctors, who I can now see again and again know so little. I did see some of this when on the Paroxetine as well, it's just that I was simply a different person when on that drug; in mass denial, deluded, avoidance behaviours through the roof, etc. The mass denial and delusion stopped almost immediately on coming off the Paroxetine; I became much more blunt, to the point, in a way that I had never been while on it. Others seemed taken aback by how forthright I suddenly became, as my old self started reasseting itself (I used to be so open, sensitive and downright blunt at times before I was drugged). I remember exactly the same effect happening when I was tapering in 1999, which all massively reversed when my life subsequently collapsed and I was shunted straight back up to 40mg. Had I acted in this manner while on the drug, I would never have allowed the doctors to have walked all over me/forgotten about me for so long, one of the ultimate ironies of the drug.

December 6, 2017

I can relate to your story. Paroxetine has also caused me a lot of grief with mood swings being the biggest issue.

Seriouslyscared: Came off 17 years of Paroxetine 40mg far too quickly

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