I hope I can give some encouragement to someone with my small contribution. I have finally recovered 100%. No lingering symptoms, nothing. I'm back to who I was when I started this 7 year ssri journey back in 2009.
I used to hate when some people had a habit of saying something vague like we'll never be the same people and that everyone changes. That is to say that my original issues were never solved (mainly situational social anxiety), but they are unrelated to the SSRI madness I endured. The drugs never helped but they sure as hell threw my life into a mess. My original issues are a walk in the park compared to that hell you all know. And I am finally in the past two years making huge leaps in those with actual proper treatment (non-drug).
I've been a member since 2012 but I've never posted here. I used to be a regular at PP (PaxilProgress) until it shut down and also on IAWP (International Antidepressant Withdrawal Project). I see some familiar names post here, but most of you won't remember me. I stopped posting alltogether as I started improving. The downside of these forums is that as you get better, you REALLY want to put such a traumatic experience behind and move on so the forums tend to become an echo chamber of those still suffering and it can give a really negative vibe. BUT I would not have made it through without all the info here so a big thank you to Alto and everyone for still keeping at least this forum running.
This is going to be LONG, but it's my 7 years on ssris 4 of which I spent tapering condensed. It has a happy ending.
In 2009 I had a lot of school(high school in english?)&other stress and went to a doctor (cardiologist) for heart palpitations. I was quickly given a prescription for 20mg citalopram. I suffered a very harsh adverse reaction consisting of tacticle hallucinations - my limbs felt like they were stretching several meters, akathisia, anxiety and agitation ramped up to unnatural levels and complete insomnia for 3 days. I was a mess and my emotions were all over. Finally contacted the doctor who prescriped oxazepam (benzo) for "start up symptoms". Eventually it passed and I turned into a lazy but content dough boy, gained about 15kilos weight in a few months. I slept most of the time and remember once when I was out biking I fell asleep on a bench.
First attempt to discontinue ssri with doctors orders: half dose for a week, quarter for another and then off or something along those lines. Head zaps and a tic in my left eye were the initial symptoms. The late onset WD was only about to start later.
Main symptoms that only seemed to increase in the first 2 months (I'm not sure if I remember all of them):
Derealization: (felt like I was detached from the world, alone in some sort of purgatory looking the world through a glass)
Anhedonia&Dysphoria: I couldn't feel any pleasure but I also felt like there is normally a sort of endorphin cloud protecting us and with this missing everything
felt horrible. Like nerves being completely raw. Everything felt uncomfortable, clothes, air, light, sound.. just constant unreleting discomfort and pain.
Burning skin: Sort of addon to above. Awful suffering like every atom in my body was on fire.
Weird OCD thoughts: Normal things seemed scary/creepy/weird and I couldn't stop thinking about them. I remember looking at people and visualizing their intestines and skeletons and thinking how creepy this world is. Other times it was gravity.. these automatic ruminations seemed to pop up and then I just couldn't stop thinking about it.
Lack of concentration & Rumination: Ties to the above. Because I had these thoughts going on in my head ALL the time I couldn't concentrate at all. I couldn't read, I couldn't watch tv and on the worst days I remember I couldn't have proper conversations because I couldn't "hear" what the other person was saying as I was so busy inside my head.
All sorts of sexual dysfunction: Lack of any sensation&pleasure was the most noticeable.. but also libido issues - sometimes zero interest and capability and sometimes compulsive masturbation despite not ufeeling anything.
Mood: Insane&unnatural anxiety/agitation and depression beyond anything I could have imagined possible. Anger, irritability..
Insomnia: I think I slept every other night or so and waking up multiple times, a lot of nightmares and more creepy thoughts when lying in bed eyes closed.
I managed to finish school before I "peaked" symptoms wise but not with as good grades as I would have. After that for about 6 months I saw NO windows. I dropped out of society and lived with my mom. I thought I had suffered some sort of a mental break down/early psychosis. If I left the house I had earplugs and sunglasses to avoid any extra stimulation. I quit our band and my days consisted of trying all kinds of self help remedies to find any respite and a lot of fetal position+relaxation tapes. I tried eating healthy, meditating, breathing, supplements all that but nothing seemed to make a change.
Eventually I saw brief windows... the first one I remember was when I was walking from the kitchen to my room and the carpet felt soft. It wasn't like a moment of AHHH how comfortable but I hadn't felt anything nice until then. Not even a tiniest bit of runners high from jogging or anything. These windows started appearing more and I could sort of start paying attention to tv shows especially stand up comedy which requires a short attention span. Next 6 months I improved more and found some coping ways and things that helped me but I was still unable to work, study etc.
Remember that at this point I did not know that the ssri had done this. Any doctor I visited during the beginning stages completely dismissed that possibility like it was ridiculous. I made the critical error of re-instating the very same drug that caused this as after a year I felt like I had to do something, I couldn't just watch my life slip away and a year of torment felt like 10 years.
Again I had some start up symptoms followed by the idgaf-lazy attitude and drowsiness. I still had some lingering symptoms but I felt good and could start participating in the world. I finished the mandatory military service in my country.
Second time trying to get off. Less zaps this time. But when the WD hit this time it hit HARD and sudden. There was the same calm before the storm. One evening I felt a little off and canceled meeting my friends and went to bed early. I jolted up early morning with all the same symptoms as before but to such extreme degree I jumped out of bed and ran out the door. I was so confused but sort of in that moment I realized what had happened. The SSRI. It was a few weeks - a month since I quit. I almost jumped under the metro as I knew that I could not tolerate this. Not again here in this hell. I ran around the running track of my home in this confused state sort of trying to put together what was going on. I eventually got home and took the ssri... I think I took some more and in a panic frenzied state crushed a pill rubbing it to my gums trying to get it to work. I don't remember much of this but I think it was a day or two when it started kicking in. During this time I was lying in bed constantly kicking with my feet to release the tension. I was googling on my phone and found the forums for the first time and my eyes finally opened.
This time the reinstatement didn't work fully but enough that I wasn't suicidal or in that bad of a shape. I didn't feel good but much better than the 2 times off in complete WD. My mood was unstable to say the least and I had these occasional headache/eye pain attacks when I felt like I was stabbed in my eyes/brain and had to lie in bed with the lights off. Also had some odd pressure sensations in my head.
This is when I joined PaxilProgress and started absorbing all the info I could. I was sort of functional but traumatized and so for a long time I just played video games and read/posted on the forums, occasionally going to the gym. I could have started working but I just couldn't believe this new world I had entered where the people I trusted were now completely against me (doctors, family) in the most horrible experience of my life.
This is when I started tapering properly, with the support of you amazing people. (Special thanks to brassmonkey's slide method)
Wow, time flies. I honestly don't remember much of this time. Part of it is because I was on the drug and in that hazy ssri state, part of it is because I didn't do much.. I was so afraid of what was going to happen as I got lower on the dose. I found a compassionate therapist but I'm not sure how much help that was overall. At a snail pace I tapered. And I read more, and more. I exercised and ... was a lazy ssri zombie.
The reinstatement stabilized at some point & the slow taper kept me ok. It wasn't anything like the previous attempts. I could have worked some simple job at least but.. well, I just didn't. I was scared I would crash eventually. I was one of those who wasn't going to recover, I could always think of some reason to think the damage would be permanent or at least I would forever be left with lingering issues. The recovery stories were inspiring but there was always the nagging doubt I wouldn't be one of those: my history was too messy, my symptoms too severe - my brain has to be fried and I'll forever be crippled, too many reinstatements, too many adverse effects, the recovered ones had different symptoms, I had started using the drugs when I was still developing.. etc etc.
But sure enough things got better. By the end of 2014 I applied for a few jobs and got one. It was simple manual labour. I had such a low self esteem for being an outcast for so long and having a CV with a hole so big you could drive a truck through. I felt a bit like an alien among normal people. So I overcompensated maybe a bit and I guess that got noticed and I got a few raises and ended up in a managerial position despite my social anxiety. My self esteem grew, I even met a girl through work that I had a short relationship with. I was still tapering, sloooooooooowly.
While I was working I started studying again in my freetime and during lunch breaks. Basic math.. and I applied and went to study HVAC&electrical engineering. It had been 6 years since I had read any sort of a school book but I passed barely and got accepted.
It was a bit of a struggle at first considering most of my classmates came straight from high school but I did ok. It was a struggle keeping up and paying attention in lectures but I kept improving. My dose at this point was miniscule. I tapered down to the tiniest crumb my scale could weigh and then started carving it by eye.. it was eventually the size of a needle tip. When that got too hard I started halving a pill, scraping a tiniest amount with my nail and licking it. I was STILL deathly afraid of letting go. I'm pretty sure I was already off at that point, but I've always been a bit of a pessimist.. I started going out with friends and got drunk the first time in forever.
At this point I don't think I had any or at most barely noticeable WD effects.
The summer of 2016 I worked at a construction site and by the end of the summer I realized I had forgotten my "lick the ssri" habit for a week or so. I was terrified but thought maybe I'd let it go. The first month or so whenever I felt anything odd I would get the thought "Oh no is it going to start, why did I stop that" etc. School had started again.
It's now 4+ months since I've touched the ssri. Nothing has happened - it's over! I survived. Not with style but I got through. Despite being negative, despite feeding myself with all kinds of bad thoughts I recovered COMPLETELY. And I'm getting pretty decent grades. Average to above average.
My taper was quite possibly way longer than it needed to be (4 years total) but it worked. And honestly if any of you have a semi stable taper just go slooow.. I know you know all this and there are much smarter and more knowledgeable people here but I want to emphasize that.
Because in the end there is no parade waiting. Nobody in the real world except my therapist and my roommate knows I finished. There was no great celebration. Nobody cares and life goes on.
BUT inside I have the biggest party ever. I can't believe I'm here on the other side. NEVER again am I going to be there in that living hell or touch any psych med.
Like I said at the beginning I recovered 100%. During my taper I of course adopted a very healthy lifestyle, but this is the greatest part (and it's very politically incorrect, but screw it):
I don't have to live like a patient anymore. I still try to eat healthy and exercise and whatnot but it's F-ing amazing to be able to not give a crap about every small decision of what to put in my body. I don't advocate any of the following to anyone but I can pull all nighters with coffee flowing in my veins like any other student to finish projects for deadlines. I can drink coffee (couldn't have imagined during WD - even tea or coke threw me for a loop for days).
I can get drunk with my friends and I'll have a hangover, like anyone else. But nothing more. While writing this I drank a cup of coffee and smoked 2 cigarettes (habit I picked up recently, should quit). And I'm sitting here in my comfy chair and I feel great, listening to good music, completely relaxed and feeling great despite being in the most stressful school period before Christmas vacation.
I'm not sure if I should mention this and I'm not proud of it but in the summer I went to a 3 day music festival and there were a lot of recreational drugs going around and well yep... My point being that I am OK. I'm not left with any sort of hypersensitivity or "scars". I can do stupid things and it won't send me back into a wave.
There's nothing special about me, I'm not a genious and I certainly didn't do things right or with the greatest attitude but I. Recovered. Completely.
I hope so badly that this gives at least a bit of respite to anyone in a bad place right now. Tears welled up a bit while typing this as I haven't thought about any of this in quite a while. I wish I had more to give. There were some things that helped alleviate my symptoms at times but I'm sure you have a wealth of knowledge beyond mine on this forum.
Thank you for having the patience to read through this, sorry for my english (non native) and stay strong guys! Or don't .. just stay in there.