SleepyMagee: my sad, sad song

[SleepyMagee]

Hello SA,

 

SleepyMagee here. I'm a first-time caller, long-time listener, and I've been meaning to do this for such a long time. I'm sure you all know how hard it is to get started, especially when your story is a long and painful one. But I feel like I'm ready. The following will be an account of my history with mental illness and how the medication I was prescribed made a bad situation worse. I'll try and keep it as short as possible, for all our sake. I hope updates and eventually a recovery story will follow. So here goes...

 

In September 2009 a relationship ended. It had been on and off for most of that year, and really isn't particularly important except that precipitated my first bout of serious depression. I was 26, had very little direction in life, had been working dead-end jobs and really didn't care much. But when that relationship went south and I started to feel bad, I realised that I hadn't been particularly happy for a long time. The relationship ending was just the last straw. 

 

The suffering I felt was new and scary, but I got through it. I saw my GP and was offered antidepressants but decided against taking them. After a few months I started to feel better and exactly one year after I first noticed that something was wrong I enrolled in college and felt pretty good. 

 

School was fun and stimulating, but there was always a fear that I would fall back into the darkness, and when I had a dip in my mood about a year in, I went to my Dr and asked him to prescribe me something. Looking back I don't feel like I needed the pills. But I was really worried that the depression would get worse and it would affect my work. I really wanted to finish my studies and do well.

 

So I ended up taking 150mg of Sertraline for six months and I have to say, it was pretty good. My mood improved after a couple of months and the side-effects were minimal. The worst issue was a terrible case of the runs which lingered for about six weeks before disappearing. I had no issues coming off the drugs and I finished college, passing with flying colours.

 

Between 2011 and 2013 I was on and off Sertraline twice, for about six months each time, and had no real problems. Then, in early 2014, I felt my mood had started to dip a little and so I knew what I was going to do. I went back to the GP and asked for medication, but I thought I was clever. The old Sertraline had given me that pesky Diarrhoea, and I would like to avoid that if at all possible. Surely the answer was to just try a different medication? I'd be back to my old self in no time and avoid the runs as a bonus. Simple, no?

 

No! This is the point in the story were everything starts to go wrong and it's the watershed moment. I haven't felt right since then.

 

The Doc prescribed Fluoxetine (Prozac) 20mg and I duly took it. Within a couple of weeks I could tell that something was wrong. I started to feel very uncomfortable in my own skin- itchy, agitated, jumpy. It was very strange. I also started to have trouble sleeping. After a month or so I went back to the GP and I don't remember how the exchange went but somehow I came away with a prescription for 40mg of the drug. As time passed I felt more ill until I realised that what I was experiencing was anxiety. Eventually the anxiety progressed and turned to panic. I had my first panic attack at 3 am one night and it was caused directly and completely by the medication. I had never had any issues with anxiety before taking that drug and the only time I've had it since is when I have introduced new medication or adjusted the dose of medication I'm on. It's never been as bad as it was at that time though.

 

At the same time I was so activated that I was getting just 2-3 hours sleep a night and working full time. I remember telling my girlfriend at the time I was too tired to go see her after work. When she got upset I agreed I would head over to her place, but when I got there she put me straight to bed. She said I looked like a corpse and her apologies were profuse!

 

In September 2014 things had gone too far, and I was falling to pieces. I had missed so much work over the past six months that I couldn't take it anymore and quit my job. I haven't worked since. Shortly after that I was finally taken off the Fluoxetine and went straight on to Mirtazipine. You'll have to forgive my inability to remember how long I took to updose/downdose for these meds- it was a long time ago and my memory has been effected by the drugs (note: there is no recognition from the Doctors I saw that my anxiety and continued depression may have been caused by horrible crap they were giving me. I however, was starting to suspect.)

 

Mirtazipine was prescribed because of my difficulty sleeping, and boy did it do the trick. 45 minutes to 1 hour after my dose I was nodding off. Once I fell asleep I was dead to the world for 10 hours solid. Pretty great? Eh, no. No matter how long I slept, I woke up feeling like I'd hardly slept at all. I couldn't focus, felt 'fuzzy' in my head, was always tired and was completely numb. I was basically a zombie. I had originally hoped that I would get back on the employment horse pretty quickly after my Fluoxetine experience- I was even told by the company I left to get in touch when I felt better- but I was no more functional on the Mirtazapine than I was on the Fluoxetine. I have never felt so physically exhausted in my life, and have never recovered my energy. 

 

To this day I wonder about which was worse/more damaging. I suffered more on the Fluoxetine, but on the Mirtazipine I lost any semblance of being a functional human being. Pick your poison. I suspect that a combination of the 2 drugs effects, one so quickly after the other, has done the long term damage. 

 

So I spent a year on Mirtazapine, sleepwalking through a living nightmare. I barely left the house and when I did, I was shattered for days afterward. I think it was around this time I began to insist that the pills were making me sick, and yet I was still convinced to take the maximum dose (45mg) and made to doubt my own instincts. My symptoms, I was told, were obviously depression and an adjustment in the dosage may be all that was needed to fix all my problems. I'm slightly ashamed that it took me another couple of years to admit the truth to myself.

 

So my relationship ended, I had to move out of the home I shared with my partner and move back in with my parents at 32 years of age, and had no quality of life to speak of. But I finally got off the Mirtazapine. It was hell. My anxiety returned with a vengeance and I had the worst insomnia I've ever had. It genuinely felt like I was physically dependent on the stuff. Apologies, I can't recall how long it took and how often I dropped the dose, but I do remember that by the end I was nibbling tiny portions of a pill every few days just to get some kind of sleep. At the same time I began to take Sertraline again because my Doctor still couldn't believe that all the problems could be caused by the medication. I doubted enough myself to allow it, but part of me knew that I shouldn't be replacing the Mirtazapine. At the very least I feel like it may have ameliorated some of the symptoms of withdrawal to have something else working on my serotonin. If I had gone completely CT off the Mirtazapine I may have gone insane. 

 

Although the most pernicious symptoms passed after I ditched the Mirtazapine, I never recovered in any meaningful sense, probably because I moved on to another drug and my system never had time to recover. By this time I feel like my body was just so beaten up and my nervous system so damaged that a careful, slow taper was needed, but the fun was far from over. 

 

I made one attempt to get off medication completely in 2016, but failed, but in 2017 I managed it. It was, however, a disaster. I dropped from 150mg of sertraline to nothing in about six weeks. I was assured that this was a conservative approach to tapering. It wasn't, but I soon started to feel better. June and July of were pretty good and I started to feel like my energy was returning. I thought I was free and clear.

 

In August I began to feel ill and depressed. By mid September, six months after my final dose of Sertraline, I was almost catatonic and competely suicidal. I lay in bed all day and formulated a very specific plan to end my life. Somehow, in late September, I made the most difficult call I've ever had to make. I called my sister and told her what was happening. She took me to the Doctor and from there I was referred to my local mental health services. Within a few days I was back on medication - Vortioxetine 5mg, then 10mg after 1 week).

 

At this point I had the epiphany I needed to admit to myself fully that the medication had ruined my life. The standard line is that the medication will take 2-4 weeks to have an effect. Within a few days of taking the vortioxetine I felt much better. Not weeks, days. Bingo! This was NOT depression. It was withdrawal syndrome. The dose was increased to the maximum of 20mg a few weeks later and at this point I didn't fight because I was so happy that I didn't want to kill myself anymore. 

 

I have to be honest now, and it might be something that isn't heard much on these forums - the Vortioxetine was... ok. There were no new major side-effects, and it improved my mood (undoubtedly because withdrawal was terminated), but the rest of my problems sort of just hung around. I was tired all the time, my sleep was disturbed and broken, I had occasional anxiety, I felt numb, I was cognitively compromised (confusion, poor memory, poor focus) and felt generally ill and weak almost all the time. But at least I wasn't depressed.

 

So I formulated a plan. I would take my time, stabilise, educate myself and prepare for the end goal, my final tapering and withdrawal from the medication. And this time I was determined to do it for good. SA has been invaluable for mesince then.

 

I began to taper in June18. I went from 20mg to 10mg overnight. No problems. In September I went from 10 mg to 5mg. No problems. In January this year, I believe it was the 5th, I stopped taking the medication. No problems... for 2 months. And then withdrawal began. I am almost 7 months free of the medication now, and the short version of the story is that things are going ok. Not great, not terrible, but ok. I'm think I'm about where I expected to be. I guess I'll keep you updated if I can as my recovery progresses, but this isn't the time or place. But I will say this- the waves and windows are REAL, folks!

 

So, thats the end of my sad (and very, very long) story. If you made it this far, thanks for reading and don't be afraid to ask me anything.

 

Sleepy

[Gridley]

Welcome to SA, SleepyMcGee.  I'm glad things are going okay 7 months out.

 

Yes, the windows and waves are very real.  

 

 The Windows and Waves Pattern of Stabilization

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain it really well:

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium (magnesium glycinate is a good form) and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can ask questions, post updates and connect with other members.  We're glad you found your way here.

[SleepyMagee]

Well I'm back. Of course my introduction wasn't the end of my story. I've been medication free for 7 months, and 5 of those have been spent in withdrawal, so I thought I should post an update about how my withdrawal and recovery are progressing. 

 

I took my last dose of Vortioxetine in early January. I had been holding at 5mg for four months and had minimal complications with that reduction, so I decided it was time to drop the meds for good. 

 

At this point I would like to acknowledge that my taper did not follow recommended guidelines. That's just the way it is. I tapered over the course of around 7 months and don't regret not doing a slower taper (yet). I had no liquid form of the drug available to me and was not confident enough to try and create my own solution, so here I am. If I ever got desperate I would consider reinstating with either a 2.5 or 1 mg dose by cutting the pills. Thankfully I've never come close to that point during my withdrawal, though it's been far from plain sailing. I don't recommend that you do what I did.

 

Withdrawal for me did not become an issue until around 6-8 weeks after my last dose. While I was still taking the Vortioxetine I had a myriad of side effects, chief of which was complete physical and mental exhaustion. I had learned to live with it in a certain way, though I was generally non-functioning because of it. On my better days I could certainly do most things that other people do, but if I had an active day I could be pretty sure that the next day wouldn't be active. I perhaps had the occasional burst of energy that would last a few days at a time but generally I would just have one to two days a week where I was feeling energetic enough to do something productive. The rest of the time I was idle. I would sleep 8-9 hours per night but it was usually broken and filled with vivid dreams. I never felt particularly refreshed in the morning and a two hour nap in the afternoon or early evening was the norm. On my good days I estimate I was operating at around 60% of pre-medication levels. A regular day would be 30-40%. There were other side effects but compared to the fatigue they were small potatoes before I started withdrawal.

 

So I noticed some sleep disruption and grumpiness a few weeks in to my withdrawal. It wasn't so bad. I honestly expected to feel worse, sooner. But in March this year I slid in to my first significant wave of withdrawal symptoms. I began to feel antsy, anxious, very tired, irritable and my sleep fell away to just 4-5 hours of broken rest, filled with very vivid and bizarre dreams - undoubtedly a function of a change in my serotonin levels. Each morning I felt terrible. I would feel like my brain had been fried and would have brain zaps as soon as I woke up, though they disappeared soon after I got out of bed. For the rest of the day I felt like I had a cross between a hangover and a flu, though that doesn't really accurately describe how ill I felt. Hangovers go away, flus get better. This didn't. The good days disappeared completely and my energy fell off a cliff. I was either in bed or on the sofa all day, every day. I developed constipation, anhedonia, and had short, intense bouts of depression that usually only lasted for a few hours before clearing up. This first wave lasted for around three weeks before I started to brighten up. Some of the side effects lingered though - I was still constipated and would be for quite a while to come, I still felt pretty 'frazzled', which is how I describe the horrible hangover type feeling in my head and body, and my sleep was still very broken - but my anxiety went away and my energy improved a little to around 40% pre-med on average. 

 

This reprieve lasted from the end of March, through April and into May, and during this window I had good days and bad days. There didn't seem to be any rhyme or reason to it, no way to put my finger on anything and say for certain that it was getting better. But things were certainly better than they had been in March, so I was grateful that I had made it through the first wave. I knew it wouldn't be the last and I was right.

 

The second wave came around a week into May and was much the same as the first, though perhaps not quite as intense. All the usual symptoms returned and I was laid up for another few weeks before I began to feel better.

 

Then I had the first really encouraging period of my withdrawal. June was wonderful! I started to feel better at the end of May and the improvement continued throughout June. My energy actually started to return and my sleep began to improve. I was more energetic, emotionally free and motivated than I have been since before I started on Fluoxetine 5 years ago. My constipation resolved and hasn't returned since. It was absolutely glorious! I can't say I was anywhere near full recovery, but I had 60% pre-meds energy almost every day, and compared to the waves I had just experienced that made me feel almost like Superman. I will admit that I got a little bit too excited by the improvement and a little carried away. Part of me knew I wasn't out of the woods, but another part of me hoped that this might be a turning point.

 

Almost as soon as July arrived, my gains went. It was a slow decline to a state of fatigue and anhedonia that was neither hard to deal with or any better than I had been before withdrawal. Just sort of meh. But my condition continued to worsen and about two weeks ago, towards the end of July, I started another significant wave. This was the worst in one respect - I felt very ill, all day every day for the last two weeks solid. The most 'frazzled' I've ever felt and an accompanying anhedonia and emotional numbness that is familiar to me from all my years experience with antidepressants. It was pretty hellish and for the first time in my withdrawal I really felt like I had to struggle to cope with it emotionally. My feeling of numbness may have been a blessing in disguise because if I had to deal with it while I had my full range of emotions I may have fallen into a depression. But I hung in there. My determination is strong, and I will not go back onto these awful meds unless I'm at the end of my tether. It feels like I have quite a lot of tether left to give, and I'm really proud of that!

 

I got rewarded for my patience in the last couple of days. On Sunday I had my first energetic day since June. I got up early, had a busy day, didn't nap, had a wonderful time with my family and felt relatively normal. Yesterday I was pretty tired but nowhere near as bad as I have felt recently, and I must remember that I probably needed to recover a little from my exertions on Sunday. It's now just after midday on Tuesday 6th August 2019, I've been up for four hours and I feel pretty good. On a day like today my biggest worry is the fight against boredom, but I'll take each day as it comes, moment to moment. It's too early to say that the wave I've been having is over, but if it isn't I am still grateful for a few days respite from it and I mean to enjoy it. I also won't assume that withdrawal is over just because I manage to have a few weeks of energy. I'll be better when I'm better and I'm committed to getting there no matter how long it takes.

 

Apologies again for the length of this post, but I'm meticulous and perhaps it will help some of you to know the gory details. My next update might be an account of the coping techniques I have learned and how they have brought me confidence that the depression that caused all this trouble is under my control and no longer to be feared. I hope this post finds you all well, and don't be afraid to drop a reply with any questions or comments.

 

Peace,

 

Sleepy.

[Sassenach]

Hi Sleepy

 

Thanks for posting this.

I can really relate at the moment.

State of mind and determination are so important.

You are right, no way of knowing if this is the last wave for you, but I hope so.

Stay strong.

 

Sassenach

[SleepyMagee]

Thank you, Sassenach.

 

Yes, I'm finding myself stronger than I thought through all this. Or maybe it's just plain pigheadedness. Either way I'll make it. If it takes another month or another year I'll get there.

 

I hope my experience can be of use to others, just like the brave forerunners on SA helped me.

[SleepyMagee]

Hi folks! It's been a while. Plenty of time for me to reflect, to let my body make the changes it needs to make, and for me to work on myself. This is update number two and I hope it won't be as TL;DR as my intro and first update... but who knows. Much like recovery, my updates will be as long as they need to be.

 

It's been over a year since my last dose of the medication and there have been some developments but if I had to describe what's been happening since my last update I would have to say, well, nothing really!

 

I haven't recovered yet, but I certainly haven't slipped back. So let's get into it.

 

Update number two was in early August, and I had just levelled out a little bit after a nasty wave through most of July. August continued like that and I felt ok for the rest of the month and into September. My birthday is on Sept 13th and as a present I received a little miracle. A couple of days before my birthday I started to feel really good. Like, REALLY good. The best I've felt in ten years or more. I had energy to burn, I was sleeping well, I was productive and motivated and I can't really point to any negative symptoms of withdrawal. I felt like I could do anything I put my mind to.

 

It was amazing and lasted for about ten days. I didn't even really mind when I started to feel tired again because my body was definitely making adjustments. Of course I levelled out again and was in Withdrawal Normal for a couple of weeks. At the end of September I had another short wave, this one characterised by short-lived bouts of depression. My mood would drop without any warning and then a few hours later I'd feel fine again. That lasted for a few weeks before it levelled out again and I've been in a pretty steady, if uninspiring state ever since.

 

I got sick twice between the start of November and the New Year (something I have experienced before when adjusting to meds). I don't know if my immune system was activated or what, but it felt like I had a virus and it felt like it took forever to clear. 7-10 days on both occasions. My mood has been ok. Good days and bad days, though the good days outweigh the bad days 2 or 3 to 1. One of the most encouraging things about my withdrawal is how well I have been dealing with my depression. It might knock me on my ass for a while, but I treat myself with more care than I used to when that happens and I'm no longer afraid of falling back into a long term slump.

 

I am, for the most part, just as tired as I have been throughout this whole process. About 50-60% on any given day - sometimes better, sometimes worse. I suppose that averages out to be a little better than what it was when I was on the medication. My sleep has improved somewhat. I get around 7-8 hours a night. Sometimes I dream and wake up a couple of times, sometimes I sleep through. My digestive problems seem to have resolved for the most part. I am now, shall we say, 'regular'; and eating more fruit and veg has definitely helped. I haven't had any anxiety for months, which is one of the best parts of all this. There is still a certain cognitive impairment, especially for a few hours after I wake up, and I am still prone to early morning brain-zaps, especially if I wake up from a vivid dream. These usually resolve after a few minutes. 

 

So the long and the short of it is that I have stabilised pretty well. Lack of energy is still my biggest issue and no matter how I try to look at it I can't attribute that to anything other than the medication. It has improved somewhat since I dropped the pills and hopefully will continue to do so. Things aren't at all that bad, but having a few months without any major waves or windows brings it's own problems. I'm not sure if anyone has mentioned this before, but after almost a year of ups and downs it can be quite frustrating to hit a period of nothing, and in my weaker moments I worry that my body has given up trying to get better. I know that's not the case in my rational mind - the old boy has worked hard in the last year to make some real improvements and has suffered greatly in the process. If it wants to have a rest before it goes back to work I should be happy to let it do so. Yet there is still a part of me that wants to see some kind of a change after a few months of steadiness - then at least I'd know that my system is working at making things better. But these things will take as long as they will take. Patience is the key.

 

Speaking of patience, I mentioned that I would talk about some coping strategies. I'm not religious or even very spiritual, but my depression has always had an existential component. In the last few years I have meditated and read a lot of both eastern and western philosophy and through that I have gained some valuable insight into myself and the world in which I live. There is no reason for me to tell you to look into any particular discipline, because finding out for myself was part of the process for me and I feel it should be for you to. I also never miss an opportunity to spend time with my family and friends which wasn't always the case. I've tried to make adjustments in my diet and lifestyle - bit by bit, of course. There is no rush. And most important of all, I've learned to be kind to myself and let things be as they are.

 

I suppose that's all for now. Hopefully the next time I post I'll have more positive news. In the mean time, I hope this post finds you all well.