cmusic: A long history and finally saying enough

[cmusic]

Thanks. But how do I know what is real and what is bogus. For example I've been told I have candida for years but I couldn't tolerate a systemic antifungal or the diet right now. I'm losing so much weight just trying to be gluten free. Adrenal fatigue is another thing they always talk about. So I don't even know what Id look for or how to filter it. And all the supplements. I've had no ability to tolerate anything - not even omega 3.

 

I have changed my diet but there is no way I can be perfect on that front. Too weak and struggling to put one foot in front of the other. I am trying to get exercise 3 times a week. I don't get restful sleep but that is what it is.

 

I'm afraid when you say get serious about treating physical issues I could go down a lot of roads that could make me worse. I know the functional medicine play book and I don't really trust it - how do I know what is actually real?

 

Thanks.

[Altostrata]

Deal with the IBS and other symptoms that are not ambiguous.

[cmusic]

Thank you. One more question - does cortisol surprise the immune system or symptoms of being sick? Is there any reason to believe I wouldn't be able to fight off infection the same as I did before? I have a fungal infection of the toenails - always have. It has gotten worse. I can't get rid of it without risky oral antifungal medication. If this is the type of infection one must be free of in order to heal from withdrawal I would be stuck. Does a person have to be free of all systemic infection to heal? I can take some steps but not something like harsh antifungals or antivirals. Thanks for the insight.

[Altostrata]

No, you do not have to be free of all systemic infection to heal. Elevated cortisol tends to elevate resistance to infection.

 

About IBS, see http://survivingantidepressants.org/index.php?/topic/2318-irritable-bowel-syndrome-gut-bacteria-and-what-you-can-do/

[cmusic]

Thanks. Funny this mentions SIBO. I recently did the breath test and it was negative. But I had changed my diet and cut gluten prior to that. Maybe that helped. Anyway will try to find a different doctor.

[Altostrata]

Use common sense first. Please read the link I posted above.

[cmusic]

Thanks. I have been tested for food allergies and actually seem to have them to oats, yeast, and coffee (which is a complete downer). I don't eat those things anymore but I wonder if igg antibody tests are the most reliable things anyway. There's a different test called MRT that may be better - there's a place around here that does it and it's expensive but may be worth it.

 

http://iwellnesscenter.com/specialties/food-sensitivities/2016-2

 

I have no idea if being gluten free is helping since I only had a slight igg allergy to it. Same level as cucumbers. It's making my life impossible as I can't have a normal piece of bread. I'm too scared to change that right now though. May try to slowly reintroduce.

 

Fiber supplements unfortunately have oats. I have been on them before. I may try to find one that isn't oats based. I have added a lot of fruits and veggies to my diet. But sugar is stimulating so fruit I have read is not great. Who knows.

 

Last there's the whole candida thing. I have bad the history if antibiotics as a kid and show many of the 'symptoms' but like I said can't eliminate all carbs and all that right now because I'm at my all time lowest weight. And you need more than just diet to get better with that and it still may not ever go away. I don't think I will go down that road right now - unless someone shows me a definitive test for it - which I haven't heard of.

 

I really just want to eat non processed, balanced and reasonable. I will say that my gut had gotten a lot better since going gluten free and changing my diet in other ways - I just wonder how much is the actual gluten vs the overall change to healthy foods.

[Jemima]

There are gluten-free breads and crackers on the market so you don't have to do without altogether.  I buy a gluten-free bread made from brown rice flour, brand name 'Food for Life", which I get at Trader Joe's, but there are several supermarket chains around here that sell it. There's another brand called 'Glutino' that I haven't yet tried, and probably others.

 

Gluten intolerance affects a lot of people and it can do a great deal of damage before any symptoms become apparent.  I'm not sure that the test you had is the right one for gluten intolerance, which is not an allergy in the usual sense.

[Altostrata]

How about getting the bowel movements regular and adding probiotics for general gut health? This might not solve the entire problem, but it might help a little.

 

Often antibiotics kill off gut bacteria and this starts the whole cycle of infection, candida, etc.

[Nikki]

Hi....getting the probiotics is a plus.  I have had issues with candida and the probiotics really helped.  They help with what Alto called the "engine room" of our bodies (loved it).  It should help with the IBS too.

 

I have found that I blame alot of WD when in fact I have had a viral or bacterial infection.  There is a virus going around down here.  A number of my friends have had it.  Chills, fatigue, stomach not right, etc.

 

I hope you feel better soon:)

[tezza]

Thank you. One more question - does cortisol surprise the immune system or symptoms of being sick? Is there any reason to believe I wouldn't be able to fight off infection the same as I did before? I have a fungal infection of the toenails - always have. It has gotten worse. I can't get rid of it without risky oral antifungal medication. If this is the type of infection one must be free of in order to heal from withdrawal I would be stuck. Does a person have to be free of all systemic infection to heal? I can take some steps but not something like harsh antifungals or antivirals. Thanks for the insight.

I know a woman that tried everything, including oral med for toenail fungus. It didn't work and she's not in WD. I've heard that Neem oil could possibly help. I agree on the probiotics, too. I hope you feel better soon!

[Altostrata]

Tea tree oil in a footbath might help foot fungus.

[cmusic]

Has anyone used turmeric? It acts like an antidepressant but also does a bunch of other stuff. I'm pretty desperate so looking for lesser of evils that could help bridge me for a while. Does this help? Can the benefit wear off over time?

 

Things are getting worse and worse. Really need something or gonna be hospitalized.

[Meimeiquest]

I use turmeric in a casual kind of way, just add it to my homemade salad dressing and anything else where it might fit. I think it especially works to decrease inflammation, which some believe is linked to depression. It needs to be taken with black pepper to increase bioavailability. I went to a seminar by an integrative psychiatrist...I believe he said the dose was about 1.25 tsp. with .25 tsp pepper three times a day. In India, where it is used extensively, they put it in milk. I am not waking up any more with the arthritis in my back hurting, but that's about all I know.

 

This doctor suggested tracking C-reactive protein (CRP) as a measure of inflammation and thereby an objective measure of progress. Dr. Brogan also suggested this.

 

Good luck...I am sorry this has been such a long haul.

[cmusic]

Thanks. As a supplement it's more powerful and mixed with black pepper. Problem is it's a weak MAOI. I'd hAte to get on something like this only to find that you have to wean of it - and how would you even taper it. But if it helps it's better than a pharmaceutical I guess.

[Meimeiquest]

That's interesting...and scary! Wish I could send you a good doctor to walk through all this!

[cmusic]

I so wish too. Feels like there is nothing and no one that can help. Fear is so out if control it's bordering on psychotic. Can't process anything. Getting very scary intrusive thoughts that get stronger as I get more scared of them. It's like my brain and nerves are on fire.

 

Can't get away from thoughts about this for more than a few seconds. Wonder if it's ever going to end. Wonder if Prozac at low dose is keeping me this way or making me worse.

 

If there is anything I can do with a severely sensitive nervous system if it helps I will do it. Holding is not helping I'm getting worse and worse. Don't think I can increase Prozac because of the agitation and burning. Thinking about trying to switch it to something less stimulating and wean off that. Very very desperate here.

[Petunia]

Fear is so out if control it's bordering on psychotic. Can't process anything. Getting very scary intrusive thoughts that get stronger as I get more scared of them. It's like my brain and nerves are on fire.

 

 

I've experienced this extreme fear lots of times over the past 2 years, generally, I get some version of it every morning.  The worst of it for me was the first 6 months after I 'crashed'.

 

The only thing which works for me, when it gets this bad is to eliminate as much external stimulation as possible, by laying in a darkened, quiet room, then just focusing on my breathing.  Just watching my breath as it gently flows in and out.  If that's not enough to stop the thoughts, then I will 'chant', in my mind something calming like in/out, in time with my breath, or, 'its ok'.

 

I find that it also helps me to calm down by looking around at my surroundings right now and realizing that in this moment I am safe and have what I need - air to breathe, water, food, warmth and nothing is trying to harm me.

 

I don't think that changing your medication right now would help, it would probably destabilize your nervous system more.  I've been off all medication since May, and I still experience extreme symptoms, but within the windows/waves pattern, its slowly improving.  In my opinion, its got more to do with allowing time for our nervous system to become stable with whatever medication we are taking or not taking, rather than a particular amount of medication being 'right'.

 

Like me, you've been on and off a lot of different medications for years, this takes a toll and in my opinion, contributes to a more difficult experience of withdrawal.

 

I wish I could offer more help, but you are not alone.

[Altostrata]

What is the relationship of your symptoms to the time you take Prozac? Are you taking any other drugs, even over-the-counter drugs?

[cmusic]

Hi Alto,

 

It's really hard to tell. I tried taking it in the morning and thought a few hours later the burning was worse. So then I tried to split it - morning and evening - but now it just feels like I constantly have it. The hands arms head burning, fever feeling and low grade on and off, the many other things I have listed.

 

Emotionally I am getting worse. Having really really bad thoughts and images that I can't get rid of. Can't get out of my head for a minute.

 

Prozac is so long acting that it's almost impossible to tell if I'm having a reaction to it. I have tried to skip days - sometimes it feels a little better but other times it doesn't.

 

I fear trying to reduce this any further because if I worsen it may not be safe for me or my family. But if it is keeping me so severe I won't ever get better. My last cut was from 4 to 3.6 back in the middle of October but with Prozac it takes months to get out of your system anyway. I just don't see how to do this safely.

 

I really need help. It is unfortunate that there isn't anyone out there near Boston. I don't feel like I can trust myself to be safe anymore.

[cmusic]

Oh and I'm taking absolutely nothing else.

[Altostrata]

When you split it the burning got more constant?

[cmusic]

I honestly can't tell. There has not been one thing since all this started for me that has been understandable or had any sense of control.

 

I thought when I reinstated this summer the burning and physical stuff started. But before that I had some of it when I took b vitamins and who knows - maybe it was just starting anyway. Things definitely got worse physically when of out in the Prozac and tried the Remeron.

 

I thought it was getting better after lowering Prozac from 5 to 4 but again who knows. It could all be related to having or not having a cold or infection and not the drug. Or the drug could be contributing. It's impossible to tell.

 

I was taking the full dose in the morning. I would get high anxiety and burning and all that mid day - but I thought I was getting some relief at night. Now I don't get any relief. But the level in my body has also been going down steadily (because of the long half life) so thats another variable.

 

The hardest part now is that I am getting very intrusive obsessive incessant thoughts about very bad things. I feel so detached from reality that it's hard to feel like I can control myself. Keeping my attention on the real world is becoming impossible - I'm trapped in my head. The thoughts keep coming harder and harder. I don't know how to handle this.

 

It makes it harder because of safety. If the Prozac is making me like this, torturing my brain and nerves, I need to be off. But if it's holding back the worst then removing it could make me worse and that would be a nightmare scenario. So this is just - again - an impossible situation.

 

Nothing about this has been controllable or understandable. I'm not sure I know the answer.

[Altostrata]

It sounds to me like you are having an adverse reaction to Prozac. Has it helped you at all??

 

I would take it only once a day and reduce the dosage by .4mg to start.

[ang]

This may or may not be encouraging... Are you familiar with GiaK on this forum? She has the website beyondmeds.com. She found and recommended a book on chronic fatigue syndrome, believing the author's hypothesis has a lot of correlation with prolonged AD withdrawal. It is about $10 for the Kindle version on Amazon. You can see Gia's notes in the book section of this forum. Best, Meimei

I truly believe I have this chronic fatigue syndrome, my worst WD .........  but I KNOW it is a WD

[ang]

Good luck cmusic, hang in there. You may not notice it, but you have improved from the first posting.  How was your Christmas?

[cmusic]

Hello.

 

I haven't written here in a very long time. It's been about a year and a half. I was getting so traumatized I couldn't keep coming to the site. Unfortunately I'm not one of those people that went away because I got better.  In fact I have seen very few improvements and a lot worsening. I have a new test result that prompted me to post here again.  I am hoping with the depth of experienced people here there might be something that can be offered that will provide hope for me.

 

When I had posted last I had tried and failed to reinstate Prozac at a very low dose. I spent six months getting off the last 4 mg input back, going off completely one year ago. I have been off everything for a year.

 

At the time I was developing all kinds of physical symptoms in addition to the emotional terror, severe depression, PTSD, ocd. The physical symptoms have progressed to the point where I can barely move or function. I have a list of about 30 physical symptoms that are just too overwhelming to try and inventory anymore.  They resemble Fibro/CFIDS and other conditions. It spans neurological, immune, muscular, everything. Constant flashing energy shooting through my nerves, can see it in my eyes like flashing, nerve pain everywhere, tension and burning in my muscles that exhausts them, sleep is completely unrestful, I get severely worse when I get a virus, can't exert myself without serious repercussions, freezing cold limbs, chills, numbness, constant agitation, brain fog beyond description, really bad low heart rate, and blurred vision, the list goes on and on.

 

I got diagnosed with fibromyalgia by a rheumatologist which I think means nothing. I also meet the criteria for CFIDS according to my doctor.  And bradycardia and raynauds. But then I went and got autonomic testing which consisted of sweat testing, breathing tests, and a tilt table along with a small fiber biopsy. I got diagnosed with autonomic neuropathy. The biopsy was ok though, hadn't visibly lost nerve density in my skin. But the functional tests were abnormal.

 

Then the neurologist ordered some high end testing that my PCP didn't even think was necessary but I wanted to do. I thought they would be negative but one came back positive. Apparently I have antibodies to something called glutamic acid decarboxylase. My understanding is that this is an autoimmune reaction to the enzyme that converts glutamate to gaba. I don't fully understand this but recall that  glutamate / gaba imbalance is core to what we suffer from. However I always thought it was just receptor down / up regulation. This test result seems to indicate autoimmune neurological disorders such as autoimmune dysautonomia. And I've read that people with seizure like activity and other disorders can have this.

 

Needless to say my entire paradigm for how I view withdrawal and my prospects for recovery has changed. If this is in fact an autoimmune condition triggered by the cold turkeys / drugs like cipro or other / and trauma it is scary beyond comprehension. I am suffering at a level of intensity that is very severe and it's been a year off the last bit of Prozac and 2  years off benzos and high dose AD's.  I have not had any real 'windows' and I cannot even imagine this being how my life will be indefinitely. I'm not even 40 and won't make it much longer if this doesn't at least get less severe.  The best I can say is that a couple of times, for brief periods, a seem to be less depressed.

 

I have changed my diet again - not perfect but mostly organic, low grains, fruits and meats and veggies. I have tried supplements with little success - b vitamins cause all sorts of problems but can tolerate probiotics and vitamin c. I meditate every day as best I can, trying to find reasons to keep going. But losing my will.

 

I'm reaching out to the people here because if anyone would have an idea of whether this is withdrawal induced and / or autoimmune and whether it can heal it would be you guys. I haven't found anyone with more insight into the real physical reasons for this suffering. So I'd like to understand if anyone has heard of this or might have a perspective on it. Doctors will not take withdrawal into account when rendering an opinion and if they tell me it's gonna stay like this I will freak out even more. I am really losing hope and I'm looking for some light here.

 

If some of the veterans could chime in here it would be huge for me. I thank you for your thoughts and hope everyone here is surviving.

[cmusic]

Anyone have thoughts or words of support?

[cmusic]

Progressing Physical Symptoms and new diagnoses - fibro/CFIDS/neuro-autoimmune

 

Hello.

 

I haven't written here in a very long time. It's been about a year and a half.

 

Here is a link to my introductory post and history...http://survivingantidepressants.org/index.php?/topic/3677-cmusic-a-long-history-and-finally-saying-enough/?hl=cmusic

 

I was getting so traumatized I couldn't keep coming to the site. Unfortunately I'm not one of those people that went away because I got better.  In fact I have seen very few improvements and a lot worsening. I have a new test result that prompted me to post here again.  I am hoping with the depth of experienced people here there might be something that can be offered that will provide hope for me.

 

When I had posted last I had tried and failed to reinstate Prozac at a very low dose. I spent six months getting off the last 4 mg input back, going off completely one year ago. I have been off everything for a year.

 

At the time I was developing all kinds of physical symptoms in addition to the emotional terror, severe depression, PTSD, ocd. The physical symptoms have progressed to the point where I can barely move or function. I have a list of about 30 physical symptoms that are just too overwhelming to try and inventory anymore.  They resemble Fibro/CFIDS and other conditions. It spans neurological, immune, muscular, everything. Constant flashing energy shooting through my nerves, can see it in my eyes like flashing, nerve pain everywhere, tension and burning in my muscles that exhausts them, sleep is completely unrestful, I get severely worse when I get a virus, can't exert myself without serious repercussions, freezing cold limbs, chills, numbness, constant agitation, brain fog beyond description, really bad low heart rate, and blurred vision, the list goes on and on.

 

I got diagnosed with fibromyalgia by a rheumatologist which I think means nothing. I also meet the criteria for CFIDS according to my doctor.  And bradycardia and raynauds. But then I went and got autonomic testing which consisted of sweat testing, breathing tests, and a tilt table along with a small fiber biopsy. I got diagnosed with autonomic neuropathy. The biopsy was ok though, hadn't visibly lost nerve density in my skin. But the functional tests were abnormal.

 

Then the neurologist ordered some high end testing that my PCP didn't even think was necessary but I wanted to do. I thought they would be negative but one came back positive. Apparently I have antibodies to something called glutamic acid decarboxylase. My understanding is that this is an autoimmune reaction to the enzyme that converts glutamate to gaba. I don't fully understand this but recall that  glutamate / gaba imbalance is core to what we suffer from. However I always thought it was just receptor down / up regulation. This test result seems to indicate autoimmune neurological disorders such as autoimmune dysautonomia. And I've read that people with seizure like activity and other disorders can have this.

 

Needless to say my entire paradigm for how I view withdrawal and my prospects for recovery has changed. If this is in fact an autoimmune condition triggered by the cold turkeys / drugs like cipro or other / and trauma it is scary beyond comprehension. I am suffering at a level of intensity that is very severe and it's been a year off the last bit of Prozac and 2  years off benzos and high dose AD's.  I have not had any real 'windows' and I cannot even imagine this being how my life will be indefinitely. I'm not even 40 and won't make it much longer if this doesn't at least get less severe.  The best I can say is that a couple of times, for brief periods, a seem to be less depressed.

 

I have changed my diet again - not perfect but mostly organic, low grains, fruits and meats and veggies. I have tried supplements with little success - b vitamins cause all sorts of problems but can tolerate probiotics and vitamin c. I meditate every day as best I can, trying to find reasons to keep going. But losing my will.

 

I'm reaching out to the people here because if anyone would have an idea of whether this is withdrawal induced and / or autoimmune and whether it can heal it would be you guys. I haven't found anyone with more insight into the real physical reasons for this suffering. So I'd like to understand if anyone has heard of this or might have a perspective on it. Doctors will not take withdrawal into account when rendering an opinion and if they tell me it's gonna stay like this I will freak out even more. I am really losing hope and I'm looking for some light here.

 

If some of the veterans could chime in here it would be huge for me. I thank you sincerely for your thoughts and hope everyone here is surviving.

Edited April 14, 2015 by Petunia
added title from merged topic

[InvisibleUnless]

i neither feel qualified nor experienced enough to suggest the root of your issues, but i do know that issues like auto-immune neurology (or, neuropathy, if you wanna put it that way), fibromyalgia, and psychotropic withdrawal all share symptoms and some measure of causality and thus a clear distinction, causally, might be impossible, and withdrawal can trigger either of the other of those three.

 

i found your post very interesting, though horrifying---im quite sorry its taking such a toll, and i can empathize with wondering how long one can bother continuing when its that severe for that long.  but, interesting because i suffer from auto-immune issues (covering everything from canker sores and reynauds to digestive problems to muscular problems), protracted withdrawal issues, and am going to be seeing a rheumatologist on multiple professional recommendations because many of my symptoms even predating withdrawal can fall into the fibro family.  (my sister was recently diagnosed with fibromyalgia and severe sleep apnea as well, so perhaps a puzzle is being assembled here.)

 

my withdrawal experience has not focused more on the mental than the physical, or vice versa, and the comprehensive level of coordinated and disabling symptoms do seem to suggest there is more than one factor at play for both you and i.  i think it might be that we have certain biological susceptibilities, either in pre-extant conditions or the potential therefor, and the trauma and complication of withdrawal can trip some serious wires and bring the ceiling down.  and, in such cases, treating and healing from the withdrawal does not necessarily re-establish the previous equilibrium---we are left with more to treat or cope with.

 

i really wish i had better advice in terms of treatment and recovery, but science knows next to nothing coherent about withdrawal, most auto-immune diseases, and neurological based problems like most seizures, and, while ive been experiencing all these things, i havent found anything curative or that i would recommend as a good idea for anyone else to try.  im sure some other people on here are more studied and experienced and can at least make some recommendations.

 

 

throughout all this, ive kind of been trending towards the supremacy of imagination and conceptualization when it comes to life experience and illness.  maybe im just batty, or maybe this is all our sustained illusion and exercising more healthful decisions is a 'spiritual' issue as much as it is a matter of physical tangibility.  i say this just because i feel there is a chance you can recover, mostly or fully, but that maybe an important aspect of that recovery is your own self-conceptualization.  sometimes i wonder if all illness is a metaphor, in expression or experience.  i dont mean to pontificate, i really have no idea, but i wanted to at least offer my support in all of this, and explain why i think there is hope.

 

speaking of the spiritual, you mention a lot of dietary changes and such, and your thread mentions holistic medicine and someone also mentioned acupuncture, back in 2013.  have you ever tried acupuncture, and did it help at all?  (and were you ever given any meditative lessons or herbal remedies/treatments, aside?)  acupuncture and other eastern methods are one of the most effective ways to help regulate your immune system and brain functioning for a lot of people struggling with some of these issues (fibro, neurological upset, etc).  seeing someone you can be very specific with regarding your conditions might involve a custom-tailored regimen aimed at balancing your personal system.

 

i know the science is pretty solid on a lot of eastern methods, but i considered it a sort of last-ditch effort in my own withdrawal, and did not pursue it after the first session because of the cost and how little it seemed to help at the time.  but i consider it a valuable tool to look into for most people, and it often takes multiple sessions to really kick in.  i feel like your system is probably in extreme disarray, and a lot of external factors will probably not be capable of bringing true balance (drugs and foods and such, even if they can help provide biological supplies for recovery and toxic-removal).  we can regulate our own hormone levels, neurotransmitter activity, blood pressure, etc to various degrees, given the training and mindfulness, and i think one of your best allies is your own self.

[DLB]

I read a lot of your previous posts and I can tell you that I have come down with an autoimmune disease at the exact time the paxil pooped out on me. I now am blessed with psoriatic arthritis and now slight psoriasis that no one in any side of my family have or have had. It is mostly genetic. So there is some kind of autoimmune thing definitely happening with these poisons. I never got sick for ten years on paxil and before paxil for thirty years I would get cold sores a few times each year EVERY YEAR of my life so I think this poison basically ramps up our immune system to a point where things can go wrong. I have a question for you, I read some of your old posts and you complained about hands being overly sensitive, I never had a problem with picking hot cups of coffee or tea and now I can't because of how sensitive my hands are to that. Also if I need to open a twist top of a beer or something like that the rough edge makes it real painful and I need to use a cloth to hold it. Also I recently realized all my callouse on my hands are gone and I am a blue collar worker in construction who had callouse so tough I used to stick needles in painlessly just to freak people out. Now those areas are soft as baby's butt! Does this sensitivity get better? Thanks

[cmusic]

Hi DLB - Thank you for your reply.  Yes.  I definitely think that all of the drugs have caused my immune system to ramp up.  I've known it for sometime but no one would listen.  Now that there is evidence, it's different.  I still have sensitivity to touch.  Even the softest sheets feel like sandpaper to me.  Some days it is more tolerable than others, but minimally.

[Help777]

Hi cmusic,

I'm curious to know how you have been doing?

[FunkyBaboon]

Hi cmusic,

 

Like Help777, I am also interested to see how you are getting on these days. I have found your thread and I've read through the entire history and can sympathise because I've have suffered with / am suffering with some of the symptoms you mention, all since a fairly rapid tapid from Citalopram some three years ago. I know this is your thread and I don't want to hijack it too much but I want to give some context as to how I can relate to what you've been through.

 

At my worst I was completely unable to work because I couldn't sleep at all and I was in a state of constant fear and panic; I think the world "inconsolable" describes how I was at this time extremely well. I ended up losing sensation completely in my hands, feet, face, mouth and throat and I also lost the ability to swallow. I experienced severe burning pain in all of my nerves and when I did manage to start getting some sleep I would often experience severe burning in my fingers and toes when falling asleep and then wake up with a massive adrenaline jolt feeling like I had stopped breathing. I only managed to get sleep in batches of about 2 to 3 hours (often with the aid of a tranquilizer like zopiclone) and would often make up with my hands and feet in spasms - fingers all twisted up and locked in place and I would have to use the other hand to unclench the fingers on the other hand. I was really scared I had MS because one of my fathers colleagues who suffered with the very aggressive primary progressive form of MS often had that problem upon waking.

 

I had other symptoms indicative of autonomic dysfunction too. I had orthostatic intolerance and would almost black out just standing up from sitting or lying. Just walking across the room would trigger my heart rate to raise to around 180 bpm. My breathing became very shallow it was almost as if my body had given up trying to breathe. 

 

At the time the doctors had absolutely no idea what to do with me. They tried me on all sorts of medications, many of which made things worse, and I was pretty much constantly in and out of hospitals having a plethora of scans, blood tests (including autoimmune), nerve conduction studies. I had also not found SA by this point and so felt so alone and scared for my life and for the future. Most of the tests came back negative but they did diagnose me with Raynaud's phenomenon, which I had not suffered with prior to withdrawal, and they were teetering on the edge of diagnosing me with chronic fatigue/fibromyalgia.

 

Luckily I later found SA and began to understand that it was likely that what I was experiencing was iatrogenic and as a result of my too fast a taper from Citalopram and it is probable that some other poor choices I made during that same period worsened things too. By this time I was already on another antidepressant (Nortryptyline) but at least I was educated in how to approach the taper from this in a much more conservative manner.

 

Fast forward to now and things are much improved but I am left with quite a few problems. Some are persistent and others seem to flare up, seemingly provoked by periods of particular stress or anxiety. My Raynaud's is pretty much permanent and my hands and feet are always cold and pale and Raynaud's attacks seem to be pretty much constant throughout winter. If my sleep quality deteriorates then I can start waking feeling completely unrefreshed as if I haven't slept at all and this seems to trigger a resurgence of CFS/fibro symptoms such as fatigue, orthostatic intolerance and numbness in my hands. I've also recently had a sleep study and been diagnosed with mild sleep apnea and now sleep with a CPAP machine each night.

 

I'm still on 10mg of Nortryptyline at the moment and petrified about reducing again because it seems to worsen all of my long term problems somewhat every time I drop.

 

I notice that you mention Raynauds as one of your diagnoses. Did you suffer with that prior to withdrawal or is this something that was brought on by withdrawal for you? 

 

The physical symptoms have an extra special hold over us because they are a constant reminder that something is wrong with you and can trigger the cycle of worry and anxiety over our condition. Whenever I have a Raynaud's attack it triggers memories of how I was at my worst and starts a negative thought cycle in me resulting in my worrying if my body will be like this permanently and will I always suffer with these problems. I also worry that it could just get worse and worse as I reduce the dose I am on further.

 

How are you doing these days? Have things improved in the past year? I really hope you are starting to experience some relief from the absolute hell you have been through.... 

 

Funky

[LaurafromCT]

I just found this topic. I hope you are ok and found some answers and relief.

[SolarPlexus]

On 1/31/2013 at 10:37 PM, cmusic said:

Hello everyone

 

I wanted to share my journey through hell that has been going on for several years. I have been on AD's since 03, but in 2010 when I crashed and have not been the same since. I have great life, a wonderful wife and 2 great boys, a good job, and supportive family and friends. But I can’t enjoy any of it – my life at the moment is simply a struggle to get through each day.

 

In 2002, my doc gave me Zoloft for what was a persistent but manageable level of anxiety. Supposed to take the edge off and is safe and can be used indefinitely. Between 2003 and 2010 I was on Zoloft, Lexapro, and Prozac (with Xanax as needed). I went through those years ok, except for increasing GI issues.

 

I crashed in 2010 after trying to switch from Prozac to a tricyclic (because of GI issues). I was on the couch in acute panic, crying hysterically, couldn't stomach food, with insane levels of anguish and fear and depression. I thought my life was ending. My psychiatrist told me to triple my benzos, and as a result I didn't go off them for over a year.

 

Currently every day is a significant struggle.. Anxiety and depression are magnified to levels that basically incapacitate me in the mornings. I cry every morning with an overwhelming sense of doom, a dread for living the day, can barely stomach the smallest amount of food from nausea, GI distress, etc. I return to somewhat normal at night, only to become Mr. Hyde again the following day.

 

It's pretty clear to me that SSRI's no longer work for me. Every time I increase the dose or change meds to try and help, I seem to get a month of releief then the intense anxiety and depression begins again. It's almost like I'm adapting to the meds.

 

I wasn't sure it's appropriate to reach out to you directly, but I wanted to try. I can certainly offer my history on the forums as well, was going to post this on the tapering page if appropritate. I'm just looking for some level of confidence that the issues I'm going through could be attributable to the drugs, and getting off is something that in the long term could make me well again.

 

 

• In everyone's experience, is it possible for a person to experience the equivalent of withdrawal while still on meds (as they cease to be effective)? Are acute depression, anxiety, maginified emotionality, loss of interest, no appetite and nausea all considered withdrawal symptoms? (even if you had these while still on)?

   

• My PDoc said I could just get right off the 30mg Prozac because of the long half life and built-in taper. Byt I read here that a slow taper is the only way to go. I've been off for a week and I don't feel good, but I also don't see how adding back a small bit would help (when I felt almost the same while I was still on the drug). Honestly I'm at a loss... and thinking I'm goign to try to just power through this as best I can.

My hope is that I can get off and get through whatever bad period there is and get better to a sustainable point where I can live my life. My fear is that I'm somehow damaged beyond repair and that getting off the meds will leave me in this state indefinitely.

 

I have been to holistic clinics where they measure your neurotransmitter levels through your urine (surprise my serotonin was low). I'm taking a very expensive regimen of supplements. I've managed to keep my job but it's been smoke and mirrors and is getting harder. I have lost the ability to feel joy, have barely any motivation to pursue interests or live the day, and feel like I'm losing my family and my life. I'm literally terrified.

 

Any thoughts or ideas anyone might have on my questions above would be appreciated. Or even just validation that I'm making the right decision.

 

Thanks and good luck to you all.

Hello! Thanks for this info! What are the holistic clinics where they measure your neurotransmitter levels through your urine? Thank you for your kind input!