Jump to content
Chemistry

Chemistry: new member looking for hope

Recommended Posts

Chemistry

Hi everybody this is my 2 year story. I'll try and keep it short and detailed. 

 

I suffered from GAD (generalized anxiety disorder) and had panic attacks since the age of 5. My anxiety was triggered by my parent's divorce but i was able to overcome it twice in my life. When i was 14 i was diagnosed with IBS. I had it pretty bad so i got really down about it and probably had mild situation depression. I (unfortunately) saw this article in class one day about anxiety, depression etc and they pretty much advertised anti depressants. I always knew there must of been meds for anxiety/depression but i figured i was just too young for them. Being a typical 14 year old I thought i was a hot shot and should be old enough for anything. That night i pretty much convinced myself i was depressed and told my mum to take me to the hospital so i could try some medication (so stupid i know - they really made it sound like anti-depressants could really really help - even for IBS (LOL)) 

 

I was given 10mg of celexa (citalopram). That's right. You can just walk right into the hospital, say your depressed and you want medication and they'll give it to you. After a while i went up to 20 mg which is where i stayed for a while. This is also where i first noticed the anhedonia - which got better but not 100%. I also noticed that i couldn't "visualize" anything in my mind anymore like the tv in my mind was more vague or something. After a while though some of the numbing effects of the celexa wore off. I actually liked the numbing though because it really eased my anxiety - although i didn't know i wouldn't be able to feel pleasure to its fullest extant again. So around the end of my use i went up to 30mg for a while and slowly i went up to 40mg. Yes, a 15 year old was advised by a psychiatrist to go that high. But it was only for no more than a month or two. I surely felt a little drugged and I believe it was mostly then that i started to notice mild sexual symptoms (premature ejaculation). Once i tapered off for about a month from 20-40mgs, and all the normal withdrawal symptoms went away, i noticed PSSD 2 weeks after the last celexa. It was pretty mild, i only had premature ejaculation and minor other problems. I also had anhedonia and the TV in my mind thing too but other than that i felt pretty much normal.

So Celexa for 8-9 months.

 

At this point i was already on a low dose Elavil (10mgs). It gave me bad  bloating and heart palps especially when i tried to go to 20mg but i could tolerate 10mg but it wasn't really doing any good. My psychiatrist insisted that i stayed on it though so I did for less than a year. 

 

I eventually went on clonazepam for 4 weeks and tapered for 3. I just took it when i needed it which was like once per 1-2 weeks on average.

 

So after lets say  6 months after celexa I went off elavil and got on zoloft (sertraline). I still had the mild/moderate anhedonia, premature ejaculation, minor erection problems and the visualization thing. I continued to have heart palps, bloating from time to time (still get it now lol) and i found that my cognitive and energy was lagging too. 

 

I went on 25mg of sertraline to start with, and found that my PSSD pretty much went away. My anhedonia was better too which i think i noted but i still found music to not be quite as enjoyable than before and that it didn't automatically fill my mind with images like it used too before meds. However my sexual confidence sky rocketed even at almost 16 lol. To be honest i didn't think the meds caused my PE, i knew anxiety could do it so i thought it was just that. My first sexual encounter was not long before the meds and i realize now that i lasted MUCH longer than after. 

The PSSD only went away for about 2-3 weeks as to be expected until the delayed ejaculation side effect began to fade. In an attempt to regain that side effect i went on 50mg of sertraline but the PSSD didn't get any better despite my "depression" seeming to have improved. I didn't feel many side effects on this drug except that i would start to cry over happy things and laugh at sad things, almost like weird trigger response to stimuli. All these symptoms i still have by the way. That summer, being on zoloft i began smoking cannabis. I only smoked moderately to regularly for about 2 and a half months. It really helped with my anhedonia, boosted my libido and made my orgasms amazing. I dont feel like it would have the same effect now for some reason though. I also went on a low dose of buspar for a couple of months on top of all of this. 

So that summer i was on zoloft 50mg, smoking cannabis, and taking buspar. PSSD same as always. ultimately, i only took zoloft(sertraline) for 6 months. 

 

I tapered zoloft really badly. It was like a 3 week taper from 50mg, to 25mg to nothing. I didn't take the dosages consistently, it was just horrible. I had a bad acute withdrawal, with a lot of muscle tenseness, stress, bloating, brain zaps, etc. Most of these went away except i still have the floating stress/tenseness feeling even now. During my initial W/D i went through a lot of stress as well which didn't help of course. however, as the months went past and i started smoking less and less, i noticed more and more symptoms. fatigue, dizziness, visual symptoms, dp/dr, cognitive problems, head pressure, hyper sensitive to stress, sleep problems, light headedness,  tinnitus, etc.... over time the PSSD began getting worse, so did the anhedonia, depression started kicking in, i had sinus problems, headaches, muscle weakness, insomnia, cold feet, hair loss, etc the list goes on. 

 

Whats funny is my IBS is quite a lot better than it ever was, i barely ever think about it. However despite the initial symptoms going away, most have not. My pssd continues to worsen (possibly due to another cause - still ruling things out) and my my depression/anhedonia, memory, cognitive function, depersonalization/derealization, severe visual distortions etc continues to decline. I dont have the dizziness or head pressure as much but it comes and goes. 

 

So there you have it. All of this happened within about 2 years. I know its not much compared to a lot of people here but the effect that these pills have had on me is more than anything i could ever have imagined. I've gone from mild/moderate pssd to moderate to severe sexual dysfunction, my vision has gone from just being short sighted to being completely distorted, a lost my empathy and passion and many other things. everything today is a chore and an effort, i have very little energy, etc etc and i'm 17 months off of zoloft, and the last substance i've ever taken was cannabis so i'm technically 14 months off if you count that and the few benzos i took. I know its early but any reassurance that i will recover really helps. I've had a few good days with my energy, relaxation, cognitive function and possibly even the anhedonia (not by much though). however, the general trend has been an overall decline in function which is very scary. Could it be that this decline suggests that my body is recovering and that i will feel better somewhere down the line? I hope so. 

 

So to recap :

 

20mg Celexa, to 40mg
1 month tapper
Elavil - 10 mg. 
No more Celexa.

PSSD symptoms

Clonazepam for 1 month. 1 month tapper. took when needed for over a year. 
Off Elavil
Zoloft 25mg to 50mg about 6 months + Buspar
Smoking MJ

Tapered inconsistently for 2 weeks
REALLY bad stress (situational)

- Last Sertraline Oct 2012
- Last clonazepam Nov 2012.
- Last cannabis Jan 2013

 

Thanks for reading guys. I'm 17 years old, turning 18 next month and i'm 17 months out. 

Share this post


Link to post
Altostrata

Welcome, Chemistry.

 

I'm very sorry you've gone through this.

 

It sounds like you have prolonged post-discontinuation syndrome. There are no easy fixes for this. It takes patience and time to heal.

 

Good self-care can help you cope with symptoms. We have suggestions in the Symptoms and Self-care forum http://tinyurl.com/3hq949z

for just about anything you can imagine.

 

The good news is you're young and your body can fix itself if you take care of it.

Share this post


Link to post
Chemistry

Thank you Alto! 

 

I'm trying to accept my losses, even the sexual/emotional side for now - and to stop thinking about them. I used to accept that i would never accept it but i realize now that 1. Its possible to accept a (assuming) temporary asexual life 2. Not accepting has only made things worse. After reading what CharlieBrown has been saying about it, its helped my perspective on all of this. Not the same type attitude you'd see on other PSSD forums. I'm not happy - but i'm just trying to get through this, deciding that things will get better for me and not to worry until they truly dont. 

 

Thank god for these forums lol.  

 

I really hope it can - I know theres no guarantee... I've seen frightening posts from kids who never 'seemed' to recover that side of them. I'm just trying so hard not to even get close to thinking about that though. I think it's more common for the PSSD to get better, so i'm going to look at that for now. I just wish someone could tell for me sure whether or not i'm going to recover 100% or even 80% would be great. 

Share this post


Link to post
Nikki

Hi Chemistry.....

 

Wow....your doctor did to you what they do to most of us....Pile on meds and don't understand that as we leave one med there are wd issues. 

 

You are not alone by any means.  I am in a protracted wd state myself from Celexa. 

 

I have heard about giving time, time.

 

You may want to check out supplements and I just posted a video from a doctor in Canada on how the brain can heal itself (in the recovery section of this site).

 

Nice to meet you

Share this post


Link to post
Rhiannon

I haven't followed PSSD cases closely, but from what I've heard it appears to me that it's much more common for people to recover than not to.

 

I know with protracted withdrawal, some people take a lot longer than others to get well, but eventually by far the majority do, particularly younger people.

 

I think you have every reason to plan on recovering eventually. The hardest thing is that it will take time, and it's hard to be patient at any age, but especially when one is young. Hang in there!

 

And enjoy your healing, and the other things that this time of life can bring you as you get your energy back--hobbies, school, sports and physical strength and health, friends, moving into your young adult life, etc. The time will pass and you'll be fine.

Share this post


Link to post
Chemistry

Thanks Nikki , yeah im definitely not the only one but hey at least it didnt go on for any longer. I wish i never smoked cannabis, however it was that that eased my IBS more than any other pill, which made me realize how i should get off all meds since they obviously didnt work. So in a way im just glad it helped me get out of that whole cycle of pills. The doctor suggested anti psychotics, 100mg of sertraline and even proposed i go to a mental hospital for a month. All after PSSD. I am beyond grateful i dodged all of those bullets and got off after a total of less than 2 years.

Lets hope another 2 years is all i need to full heal after 17 months so far. Thanks for posting that video by the way.

 

Thank you for the nice response Rhi. Its hard to say what the percentages are for PSSD. Some heal, some are still waiting to heal, some would have healed had they stopped taking more meds/changed their lifestyle and some simply dont seem too. I think the majority eventually do heal, but you do need to work for it i think. I hope i can regain at least some functioning back so i can live a normal life again, not asking much here lol.

 

Thanks again though, i need this reassurance from time to time, i am planning on recovering, but i do fear disappointment. Cant wait to write a recovery story one day lol.

Share this post


Link to post
bubble

Hello there,

 

I read your story and was amazed with your maturity. You reason very well and you have learnt a very important lesson while still very young.

 

You also have great observation of how bizzare (for a lack of better word) it is to live in the world where a 14 year old walks into a hospitals and ends up on a mind altering drug which is being advertised like a candy bar (which are also not health inducing by the way...)

 

You will recover! And needed reassurance is a very natural thing to do so I'm happy you came here (unlike many of us who took decades to do it).

 

best,

bubble

Share this post


Link to post
mammaP

Hi Chemistry, I'm glad you found us, this is the very best place to be for withdrawal advice and support.

Have a good mooch around, you'll find loads of helpful info :) 

Share this post


Link to post
NewMe

Welcome and salutations - have to say you surely are a mature 17 yr old - you will get through this!

Share this post


Link to post
Chemistry

Thanks guys, i've always been a little more mature than my counter parts but i can definitely say that this entire experience although extremely painful, has been very humbling and eye opening. Even though I am bitter a lot of the times about this now, if i do recover in the end, i will never forget the lessons i've learned during this entire period of my life and will be so appreciative that i went through it and got out of it. I've learned about what matters most in life, and how it can feel to be in a position where your life is potentially going to end. I am so grateful to be alive, despite me not feeling alive at all. I put myself on antidepressants as an "easy way out" because i was upset over such a tiny ailment compared to what i'm going through now... I would consider myself a spoiled brat looking back for whining about only having IBS lol but i didn't know any better and i guess now i do and thats the point. i'm fighting to get out of this so i can go back to only having IBS lol but this time i have to face my problems and there's no easy way out of this one that's for sure. Thanks to this experience i am much more considerate to people's suffering (provided that it's legitimate suffering lol) and aware of all the truths behind medicine in general and i pray i will get better so i can live a normal, healthy life again, full of passion for feelings, love, intimacy, energy, music, and all the things that made life worth living along with the knowledge and strength that i have gained along the way. Here's hoping we all recover someday.  

 

Thoughts for today.

 

Shawn

Share this post


Link to post
Chemistry
I'm going through a rough period. I'm turning 18 years old, about 18 months off. My symptoms have been progressively getting worse for about a year or so now with better periods every once in a while, although the better periods seem to get worse and worse. Its completely non-linear though but instead of getting better overall, it feels like i've only gotten worse over time. 

The main symptoms i'm worried about is the anhedonia/emotional bluntedness mixed with the PSSD, genital changes, etc. 

I'm feeling really worried things won't get better. What are the chances that i will recover at this point? I was poly drugged but for less than 2 years. I got mild symptoms of PSSD/anhedonia around the end of my use of celexa but continued to take more drugs.. only after stopping everything after 6 months of zoloft did everything come crashing down. 

also, is the fact that i started these drugs at such a young age (14) make any serious difference? Am i less likely to recover because my brain was still developing? i got off everything at 16. 

I just really need some hope here... i need to recover my emotions, feelings of love etc... thats what really matters to me... I still feel SOME things, SOME times but not always and its always quite subtle. Only had a few small windows.

Share this post


Link to post
Altostrata

Chemistry, are you taking any other drugs or supplements?

Share this post


Link to post
Chemistry

No i'm not Alto, i've only ever taken fish oil, magnesium things like that but not for very long. As for other drugs the last time i took ANYTHING was i smoked weed once, like 15 months ago... before that i didn't and i took a few benzos 17 months ago but i've been off sertraline for 18 months. 

Share this post


Link to post
Altostrata

What is your daily symptom pattern? You'll want to keep notes on paper.

Share this post


Link to post
Chemistry

I'm not sure what you mean, like just all the symptoms i go through daily, in order? 

Share this post


Link to post
Rhiannon

Chem, I remember how long 18 months is when you're 18--it's effing forever. And it's pretty long at 80, for that matter, when you're suffering. But it's not at all unusual here, on this forum, for people to still be in pretty bad shape at 18 months. In fact it's kind of a pattern for us to get people posting at around 18 months worried because they're feeling worse than ever and think they should be improving more than they are by then.

 

Unfortunately nobody can tell you exactly what your pattern of improvement will be, what will change when. But I've been working around withdrawal forums for over four years now and I've followed hundreds of stories. Sadly, a lot of people are still suffering at 18 months out. Most of those people, definitely the majority of them, find they begin to improve somewhere between there and two and a half years. And the majority of them end up feeling much, much better some time over that next couple of years.

 

Your body and brain are doing a massive amount of growing and changing right now, and your brain is trying to heal itself and stay stable on top of that. There is a LOT going on. It's not like healing from the drugs is the only thing your CNS has on its plate right now. 

 

I would suggest that you maybe shouldn't do all the experimenting and fun stressful crazy stuff that other people your age are doing. It's probably best for you to maintain a more controlled, gentle, low stress, very regular and routine lifestyle with a healthy diet, as much sleep as you can manage to get, exercise that's not too intense, and as much nurturing and positive social interaction as you can get. Probably keep the drinking down as much as you can too. (I'm not saying you drink, you haven't mentioned it, but I'm sure a lot of your friends do, it's a normal part of social life at your age.)

 

It sucks that you have to act like you're 50 for a while, but I really think that if you can minimize the stress on your nervous system it will help with the healing process.

 

Your brain is still developing and will not settle into its adult configuration for another five to seven years or so. So there's a lot going on there. I always say that people recovering from psych meds need to grow a new brain, and they do, but in your case you're growing a brain already PLUS growing a new brain. So give your nervous system as much stability and care and support as you can.

 

Hang in there. I've seen a lot of people go through this process and I think your chances are good. But it's going to take a while, maybe another year or two, and you may have some lingering problems that will gradually fade over time even after that. Don't let the time frame make you think it's hopeless. It's not hopeless. Your odds are really good. It's just slow, way too damn slow. 

Share this post


Link to post
Altostrata

What Rhi said.

 

About notes: Sometimes symptoms follow a daily pattern. You don't have to keep an hour-by-hour record, just notes of when you feel a symptom, what it feels like, and the time and duration.

Share this post


Link to post
Chemistry

Thank you for that message Rhi, really made me feel a bit better. That feeling is exactly what i'm going through, not only me but the people who love me are thinking the same thing "why isn't it better by now? it should be..." and i'm worse than ever. I wish i had more signs of improvement but unfortunately the past year has been mostly down hill, with some moments of relief. However, what gives me hope is like you said, the stories of people who got better.

 

Personally i'm not entirely worried about the "when" i'm going to get better, so much as the "if" i'm going to get better. Part of me worries about permanent symptoms, and i'm not talking about headaches, i mean more like PSSD and anhedonia and my visual symptoms. If any of those went away i'd be way better off. The worst part i think about this experience is the uncertainty and although i hate to argue "well what if i dont get better" since i know nobody can tell me for sure, sometimes i have to bring up my concerns. 

 

Its nice when someone reads my progress and history and tells me theres still time to get better, that the chances are i will. That really gives me hope... I also wish i didn't take this drugs as a young teen since i feel like my hormones are probably all out of whack. But lets be honest, even if there was a 1% chance this was permanent for me, i would still think about it sometimes lol especially at times like this where it just seems to get worse and never better. 

 

I really really hope i see some signs of improvement within the next year, especially when it comes to anhedonia...If the pssd only gets 50 % better in my life time, i can live with that i just need some life in me. 

 

I also really appreciate your advice and its that exact advice that i've been following for the past 6 months or more. I've been taking it really easy and ironically my symptoms appear to have only gotten worse although i understand this might just be part of it. I dont drink or do any drugs whatsoever.. my friends will sometimes  smoke weed around me but i literally jog away from them so i dont smell it and they're fine with it and just find it funny lol. I just say that i dont want to be tempted back into it and they understand and everything's fine. But that rarely happens. I can still have a pretty good time out with friends since i have no inhibitions and i can make people laugh. But i dont feel much of the excitement or fun as much anymore and i dont laugh nearly as much... But at the end of the night i still feel "better" that i went out and had a good time. 

 

In terms of a daily record, i should start taking notes. I think my patterns are almost random.. I have periods where the afternoons are better and the nights are worse, and then a few weeks where its vice versa. I go through waves and windows during the day, usually concerning my depression. When the sun goes down i still feeling down myself. In the mornings i usually feel pretty good all the way up too a few hours after lunch when i crash... then i either get better then crash again, or just crash until before bed time when i feel better. I think i feel my best in the morning, somewhere in the afternoon (sometimes) and at night. 

Share this post


Link to post
Rhiannon

Well let me repeat, I'm not making this up, it's really normal for people to be feeling either still bad or even worse at 18 months out. In fact that's often kind of a crisis time for people. I don't know why but I suspect it has something to do with the way the brain heals.

 

Sometimes during the healing process we actually feel worse for a while instead of better. I've heard people talk about a Rubiks cube analogy, although I don't know the original analogy (maybe somebody will jump in with that here). But I'm thinking it's something like, things might be kind of okay but the brain wants them back to all the way okay, so they have to be sort of taken apart before they can be put back together properly sometimes. And during that time when they're taken apart it can be kind of rough. But a lot of people report that after those periods they notice an increase in healing.

 

I just really think that given the history you've described, first, your current course is not surprising, and second, you're going to recover completely. Really the only concern I have is that you make sure not to let anyone talk you into going back on psych drugs, because people who do that, especially when young, usually don't have a very good course in the long run.

 

I wouldn't say this if I didn't think it were true. I don't mince words much. I suppose you could be the very very rare exception and only regain 50% of your former health and function, but really the very few people I've seen who didn't get back to at least 85-90% (and there aren't many of them) were older folks.

 

Just keep going and hang in there. And keep us posted and please come back and tell us when you're feeling better, usually people just sort of disappear into their lives (can't blame them) but I'd really like to hear from you, regardless of what happens. Your experience will help many other people.

Share this post


Link to post
Nikki

Chemistry in re-reading your post it reminded me very much of what my daughter went thru.

 

I was divorced when she was about 13.  Shortly afterward she started having panic attacks.  This was followed by IBS.

 

She had the IBS for a number of years.  At 15 she was given zoloft an didn't like it.  She tried Elavil and didn't like that.

She finally settled on Imipramine and was on it for a long time.

 

She was also given Klonopin.  Alot of likenesses here.  She didn't smoke pot but she drank.

 

In 2013 she decided to get off Imipramine.  She did it quickly and she had WD.  She lost a job at the RitzCarlton due to the WD.

 

It took several months (well more than that) to finally level off a bit.  She still took Klonopin for panic.  The panic was there before she took meds and there again as a result of getting off meds (WD)  Protracted WD.

 

A year has gone by now.....no meds. She said they affected her in a negative manner and she does not want to take another AD as long as she lives.  The doctor she was seeing drew a picture of the brain and how the transmitters work to demonstrate that it would take her brain about two years to get back to normal state.

 

In the meantime, she works and goes to school.  Very busy and happy about being busy and focused.  Sees a good future for herself.  She let go of her friends who abuse alcohol or drugs. 

 

The reason I am telling you this is because she is doing okay and someday you will too.  She only tried Zoloft for a week or so and Elavil for a few days.  You were on the drugs for awhile so it may take more time for you to heal.

 

You are young so you have so much more to look forward too. 

 

Nikki

Share this post


Link to post
Chemistry

I just wanted to say thank you Rhi and Nikki so much for your messages. I have been reading them over and over. These are the sort of things i need to hear even after explaining my situation/history. If i ever do get better you can absolutely count on me coming back. I have so many symptoms if i ever recover completely i'll cry every day  LOL. I would have so much joy and appreciation for the life and second chance i would have gotten.

 

I hate it when people just disappear, sometimes i just think maybe they are doing better, but also its possible they're not and thats why they dont bother coming on anymore. But generally i think most people do slowly get better. I hope i will become one of those people soon..

 

It is my birthday tomorrow, i will be turning 18. I told myself that by my birthday, i will finally turn a corner in W/D.. I know i shouldnt put any "dates" on my recovery but i hope that will be true. I'm coincidentally going to the doctor's also, to ask to see a specialist about one of my more unusual symptoms related to my reproductive organs. I dont like seeing the doctor honestly, i just wish/hope EVERYTHING would just sort itself out on its own. I dont want to swallow any more pills or do anything, i just want to go back to normal.... I haven't felt normal in so long.

 

My visions really been bothering me lately. Things just seem to keep getting worse and worse, the idea of getting "better" seems to foreign at this point lol. I will keep everyone posted about my progress, if i ever recover i know i will be a huge inspiration to at least one person since its not like i have a mild case here. I hope things stop worsening, i hope my symptoms begin to plateau and then eventually, i hope i start getting better, instead of worse. 

 

Thank you for the hope guys, this is exactly what i need at this point. 

Share this post


Link to post
Chemistry

Also, Rhi - are you familiar with PSSD cases? have you followed many of those? Just wondering.

 

EDIT: Never mind Rhi, you posted that you haven't followed them closely a month ago haha! sorry! 

Share this post


Link to post
bubble

Happy birthday (and lots of healing :)

Share this post


Link to post
Chemistry

Thanks Bubble! hanging in there. Main thing is my vision keeps getting worse, the distortions actually interfere and they're always there. I'm doing okay though, holding on! Thanks again! :)

Share this post


Link to post
Petunia

I hope you had a nice birthday, belated happy :)

 

What kind of problems are you having with your vision?  What do you mean by distortions?  I have some vision issues and wonder if its similar.

 

Please would you add your drug and withdrawal history to your signature, it makes it easier to understand your situation when replying to your posts, instructions are here:

 

http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

Share this post


Link to post
Chemistry

Thanks Petu :)

 

i've been having so many issues with it honestly, i believe its its own separate condition. I only know one other who might have it as bad as me, or close and thats OliviaS... we both might have gotten it from smoking too much weed along with being on medication which might make us HPPD sufferers. HPPD can get better on its own but not always (of course....) 
I have visual static/snow (vision looks like TV static, 24/7, worse at night), bad afterimages (if i look at something then look away the image stays in my vision, so i see everything twice basically) this is the worst symptom, makes life harder... especially when using a computer... severe floaters, i'm seeing one on screen right now, halos, starbursts from lights, etc... I see my nose and eye lashes/brows all the time now, whereas before i could never see it. Apparently your eyes can always see your nose but because your brain filters it out, you dont - well not for me anymore. My brain doesn't filter anything out anymore and thats the problem. My vision has also gotten blurrier i think, but my nearsightedness isn't any worse if you know what i mean. 

I have several more but those are the main problems with my vision. My eyes are okay, this is a brain problem. I'm not sure if it'll get better, like i said for some it does, for others it persists. I think the visual centers for the brain is the least plastic, so maybe its not permanent but simply really long lasting. However some people who got this from LSD, mushrooms, etc that sort of HPPD can literally last forever, however like i said, it can get better or go away completely... for me it gets worse  and worse over time... at this severity i dont even know if it'll ever get better... but i have had a few days where one or more symptoms seemed better so who knows.... I also dont think its a coincidence that my vision gets worse and worse over time so does my other symptoms of pssd.......

 

i just hate hate hate how it seems like my problems are all permanent, people in normal withdrawal, even in protracted withdrawal can all be assured its going to get better/go away, but my pssd, anhedonia, visual symptoms... how will my brain recover from all of that when there are some people out there who have only one of these three things and they dont. I know those cases are pretty rare but its still so scary...... i dont want to lose hope though. 

 

Sorry i'm just really fed up with my vision today... driving me crazy... i also have  tinnitus, this can go with the whole visual syndrome, i sleep with a fan, its not that bad.

Share this post


Link to post
Altostrata

Stay calm and try to distract yourself with things that are calming.

 

What is HPPD?

Share this post


Link to post
Chemistry

Im trying Alto, just doing that now. Need to take it easy.

 

HPPD is a visual/perception disorder that is triggered mainly by LSD, mushrooms, etc basically any hallucinagenic drug. Its not very common but it consists of many visual distortions which ive listed but HPPD also has other characteristics that i dont have like bad colour perception or objects looking like theyre moving of breathing. Theres another rare condition called visual snow syndrom which basically describes all my symptoms, visual snow, afterimages, tinnitus, floaters etc etc. the main symptom is visual snow but everyone is different and will have visual snow + a variety of other symptoms.

But visual snow usually isnt triggered by drugs, whereas HPPD is... Theyre very similar conditions except HPPD can get better on its own approx 50% of the time but VS is usually permanent (unless treated in some way, better lifestyle, medication, or treating some other condition thats causing the visual snow(withdrawal wink wink)). Not much research has been done though.

 

I personally hope i have sort of a mix between the two conditions, caused by ssris with a mix of weed and that itll improve as time goes on. Perhaps this is just wishful thinking, i know many who have gotten this from ssris, some do get better, i think it take many years for others. Like i said my case is pretty severe for someone who got this from ssris and weed, i dont think anything else likely caused these problems considering all my other problems are drug related. Also my case is progressive, as in its only been worsening with time. So has my other symptoms. Best case scenario, is things will finally reach a plateau and then get better. But since im this bad at 18 going on 19 months off, im not sure ill ever see normally again. But any improvement is welcome.

 

For me what really matters is my anhedonia. After that Pssd and my vision both need to get better to at least some substantial degree, then i can be happy lol.

Share this post


Link to post
Petunia

Hi Chemistry,

It really would be helpful if you put your drug and withdrawal history in your signature, that way, we don't have to read back through your thread to find out what medications you were/are on and for how long etc.  It just makes it easier to post relevant, helpful suggestions.

 

You wrote that HPPD is triggered by LSD and mushrooms, have you used these?

 

I haven't used LSD, mushrooms or weed, only prescription meds and I experience some of the visual distortions you mentioned.  I get after images, starbursts from lights, blurryness, sometimes, things seem to be moving.  I also have tinnitus.  I've noticed that these symptoms are related to the kind of light I'm being exposed to.... worse in artificial light, especially florescent, better in daylight.  Also worse when I'm in a wave, better in a window.  For me, these symptoms have improved generally as I've been recovering.

 

I think that as long as you stay away from drugs which alter your brain chemistry (weed and prescription), you will recover eventually, including your vision.

Share this post


Link to post
Chemistry

Hey Petu, Sorry! i kept forgetting to add my history in my signature lol I just did it now hope that helps.

 

Oh nono never used anything like that, only medication and weed (for a few months). Never drink or anything like that. HPPD is usually triggered by these drugs, anything hallucinogenic, but that doesn't mean it can't be triggered by anti biotics, anti depressants, etc... 

 

Really! yeah mine are terrible, i get afterimages on screen, and i get them when i look at things on the wall (like i see a portrait twice or something). Its really bad i know. I really hope it does improve some day however the main thing is the anhedonia and then PSSD. If those two got better life would be amazing :) 

 

Thank you. I hope so Petu. There seems to be no guarantee, but i can only assume once i'm out of protracted withdrawal that my vision will get better. 

Share this post


Link to post
Rhiannon

Hey Chem, just stopped by to say hello and hang in there. If it's any consolation I have seen people who were worse off than you are now, who got much better, even with older and less plastic brains. I still think your chances are excellent.

 

Just coddle that magnificent brain of yours that's trying to do its normal development/maturation tasks and heal at the same time. You'll get there.

Share this post


Link to post
Chemistry

Hi Rhi, I appreciate your message. Its nice to know that people still recover even when its still bad or worse. At almost 19 months off and still no improvement in my pssd as far as i can tell i do have my moments where i get worried. I haven't seen anyone who didnt see any improvement for over 2 years and still got better in the end. If there are such cases please let me know. 

 

Thank you for the encouragement, I know my chances are really good i just need to see some changes in the right direction so that i feel more confident. The fact that summers coming along definitely helps my mood a bit. My next approach is reducing stress levels. I believe it is the constant charging of my nervous system that may be slowing down recovery. i need to just relax as much as possible even though i know i physically can't, if i dont add to the w/d stress, i think it could help the anhedonia/pssd.

Share this post


Link to post
Rhiannon

Yep, keeping down the stress is very important.

 

Also good diet, exercise and sleep habits (stay away from sugar, refined grains--actually I'd keep an eye on all grains, especially anything with gluten--and caffeine and alcohol).  Gentle to moderate exercise is better than vigorous. Keep a regular schedule of sleep and waking if you can. (Unfortunately most teenagers don't get to sleep their natural schedule, which is late, unlike school schedules.)

 

I've known quite a few people who didn't feel better until after two years out. If you look around you'll see them here on this forum. 

 

Generally, just keep in mind that you want to be as gentle to your nervous system as you can. You definitely don't want to be stimulating or stressing your nervous system. That's why I said earlier, you can't really enjoy the usual lifestyle of folks your age, you need to live like an old person for a while, to coddle that brain and nervous system of yours.

 

I'd also look into probiotics and a paleo type diet if I were you. Chris Kresser seems to be a good source for info on that sort of thing. Don't make any radical or sudden changes, just small and gradual tweaks.

Share this post


Link to post
Chemistry

Thanks again Rhi for the advice and the supportive messages.

 

I've been trying my best to stay as calm as possible, whilst doing a bit of exercise, and sleeping earlier etc. It doesn't really make any difference (so far) except my general "moral" goes up and i can sometimes find myself doing something and somewhat enjoying it. Not to the extant where my anhedonia is any better etc, but i can do something and just sort of be in the moment of it and feel entertained or preoccupied. This is something that i feel is important, because i makes me less depressed, brings my "mood" up, makes me less irritable, etc and gives my CNS the chance to heal.

 

I just have this symptom where no matter what, i can't shake off this residual physical stress, this physical tense feeling. I have to keep reminding myself to lower my shoulders, take a deep breath, relax, etc and its extremely easy to fall back into it. Its almost like my body has been in a constant state of stress for 19 months now. Obviously there are times where i can feel "relaxed" but its never a completely relaxed state if that makes sense. I suppose this is perhaps why my CNS has had a hard time repairing itself and whenever this symptom gets better i'm sure that'll be a turning point for me.

 

I've known quite a few people who didn't feel better until after two years out. If you look around you'll see them here on this forum.

Thats really encouraging. Were some of these cases suffering from PSSD or are we talking just normal protracted withdrawal? I was referring to pssd sufferers, either way its just good to know that theres always hope. However, i know if i dont see any improvement after 24 months, that my chances of getting better will probably diminish as time goes on... since i've searched a lot of cases and most people either dont stay drug free long enough, and those who do get better in the end, START to see some level of small improvement within the first 2 years. So far it has been general worsening but maybe some signs of hope/tiny windows that would happen sporadically. Like for example LossLeader posted at around 19 months that he finally started to experience SOME relief from the PSSD... very very small but still finally some improvement. Thats what i need and i need it within the next 6 months or else i will feel very hopeless to be honest. However this isn't to say that if someone is suffering with no improvements with their PSSD at lets say 30 months out, that theres no way itll get any better or even go away completely over the years - especially if there was some sort of adverse reaction or poly drug use, etc... I'm just saying I personally haven't seen a case like that. So i can only go by other peoples experiences. Like i say, if there ARE cases like that, please i could really use that hope lol. With PSSD/anhedonia of course. Protracted withdrawal i'm not too worried about.

 

Funny thing though is lately i've been very confident/positive. Its almost as if i just "know" deep down its not going to be permanent for me. simple as that. I've had so many people tell me its not throughout this experience that its pretty much been in grained in me now which is a great thing. this is why people shouldnt go on most PSSD forums for too long, they're very negative a lot of the time and will make you feel hopeless. I've also noticed a certain trend with the "permanent" cases.. a trend that i do not necessarily follow (which has brought me a lot of hope). I didn't have a severe adverse reaction going on, many with PSSD did. I noticed that 66% of PSSD cases noticed symptoms within the first 2 weeks of being on the drug - which to me suggests an adverse reaction. That statistic was taken from the polls on the yahoo forum, hundreds of people replied since 2005. 74% or something noticed symptoms within the first month. something like that. I think its these cases that tend to have long term problems (not always) and then a portion of them eventually give up and try supplements, other drugs, etc, usually after 2 years of waiting - which of course may further complicate and lengthen the healing process. this give the illusion of "a high number of permanent cases" when really it may not be like that. It seems a lot more people (i'd say 50%) are willing to try another drug/supplement to "treat" their pssd after 2-3 years of waiting. I can't take those cases as real "permanent cases" because of this fact.

 

It also seems to me that the people on sites like this or PP where people are well informed NOT to go back on medication, seem to improve the majority of the time, where as on other PSSD sites it seems like its the opposite. Coincidence? I dont think so. However, even on PP there are some "permanent" cases. However it does seem to be quite rare. This is obviously going to be scary to anyone suffering from this problem, including me who's still suffering this far out. I'd love to get better not only to get my life back (after only being alive 18 years), but also to give hope to other sufferers, especially at a younger age. That would really be so rewarding.

 

....Okay can't think about this because if i do i'll probably cry lol. In a good way! but also in a bad way too LOL.

 

Sorry for the long message - just felt like rambling. :)

Share this post


Link to post
Chemistry

I'm starting to wonder how common it is for things to get worse before better. 

 

I know a lot of people with W/D say this is all an up and down experience... up and down up and down... But eventually the ups are better and the downs are more tolerable... Something like that... Some people recover slowly, with no windows...

 

I feel like i'm the opposite of those two things. I feel like i wasn't all that bad when i got off zoloft. I suffered the initial shock of coming off... which gave me more physical symptoms. After about a month of that... I just never fully returned to normal... as the months went on... things just got worse and worse. I had some better days sure, but ultimately functioning, pssd, anhedonia, vision problems, etc... just slowly progressed... Even now at 19 months off... I get new symptoms and the constant symptoms just worsen. Its very frightening you know?

 

I wish i had a really good window.. Then i'd know for sure i'd be okay. But so far at 19 months out... If i dont see anything positive happen soon i will begin to lose hope. I fear these drugs have affected my development. I fear i will not be able to go back and fix my brain's altered state. I really hope my body can rebalance itself. I'm trying to  stay positive.

 

So basically - it is fairly normal or even possible that this far out, one can be this bad, worse than ever? I've never had so many symptoms of PSSD and if i have, they've never been this bad.  Like i've literally never been so deep in withdrawal and i'm scared that i'm going to keep sinking and sinking never to reach the shore... 

 

Sorry for the negativity... Any reassurance is helpful. 

Share this post


Link to post
mammaP

Hi Chemistry, there is no set pattern for withdrawal, everyone is different.  There are many

people who are sick for quite a long time before starting to feel better  :( .

 

Windows will come, one day you will realise that you actually enjoyed something, or felt

something different and positive. A rainbow, the moon, rain, anything, and it will be an

amazing moment for you. Then there will be more moments and longer windows. It 

WILL happen, I hope it happens very soon for you.

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×

Important Information

By using this site, you agree to our Terms of Use.