HPPD 24 years, on Klonopin every day for 13 years now

[AF44]

Hello all!

I got HPPD when I was 20 years old. It was from taking LSD. It was awful and I had a lot of tests done. I didn’t tell the doctors that I thought my symptoms were from using LSD because I was young and naive and thought I would go to jail for doing drugs. I was also hoping that by some “miracle” I had a brain tumor or something else wrong, but no doctor could ever figure it out. I resigned myself to the conclusion I had given myself drug-induced brain damage. Then, years later, I was looking up symptoms and stumbled across a page on HPPD! It was a real thing! I was so happy that I cried. Blah blah blah, got on Klonopin, worked awesome. I take 3 mg per day, every day. I’m lucky to be able to get it but scared that someday I won’t be able to have it and I’ll go literally insane from withdrawal effects and rebound HPPD symptoms. Anyway, sometimes I have “flares” of my symptoms despite being on the Klonopin. A lot of times they only last around a week-ish and I have a pretty good idea what caused them. However, for over two weeks I have had the worst flare yet and I can’t pinpoint the cause. It’s really making me miserable. It finally went mostly away and then I was started on Wellbutrin and a few symptoms are back. I have no idea. I love the Wellbutrin because I was having a terrible depressive episode, so I don’t want to stop taking it, plus the horrible “flare symptoms” started even before I was put on Wellbutrin. Has anyone ever had this happen to them?? I’m terrified it won’t go away or that it will take a long time to go away.

[Jay1]

I have had plenty of flare ups over the years, the only ones that didn't return to baseline were from taking drugs after getting hppd (like you, i didn't know what it was for many years until i found this place!). 

Try to stay calm and ride it out. 

Welcome to the forum btw! 

[AF44]

Thank you!!!

My flare finally went away and I am beyond grateful and relieved…and loving the bupropion! I go to church and am on a “prayer chain”, so it was put on there that I was having a flare up of a “medical condition.” I truly believe in my heart that all of the prayers worked. I chuckled thinking of what the congregation would think if I told them I had HPPD. They are the most wonderful people but would be like, “Huh??” I’m so glad I am on this forum and it hurts my heart to read other people’s stories and learn how much they are suffering. I suffered horribly for so many years until I figured out what I had. As a nice side story, I had been prescribed Klonopin for my HPPD my a neurologist who was kind of a jerk but was at least open-minded enough to look up the condition during his lunch break. Anyway, I ended up with a therapist and a medication prescriber. She asked me why I was on Klonopin and I told her (of course she had never heard of the condition) and I showed her that it was in the DSM. She was really cool and didn’t doubt me at all. Then one day, I was at an appointment and she looked at me and said, “I want to say thank you.” I was caught off guard and said, “Oh…why?” She replied that a new client of hers had come in with HPPD symptoms, and because of me she knew what he had and knew to prescribe him Klonopin. I was so happy that at least one person suffering from this awful condition was helped. She was a great prescriber and I miss her to this day. Anywho…love all you guys!! We will eventually figure this shit out, right!

[Hall89]

On 7/30/2023 at 9:47 PM, AF44 said:

Thank you!!!

My flare finally went away and I am beyond grateful and relieved…and loving the bupropion! I go to church and am on a “prayer chain”, so it was put on there that I was having a flare up of a “medical condition.” I truly believe in my heart that all of the prayers worked. I chuckled thinking of what the congregation would think if I told them I had HPPD. They are the most wonderful people but would be like, “Huh??” I’m so glad I am on this forum and it hurts my heart to read other people’s stories and learn how much they are suffering. I suffered horribly for so many years until I figured out what I had. As a nice side story, I had been prescribed Klonopin for my HPPD my a neurologist who was kind of a jerk but was at least open-minded enough to look up the condition during his lunch break. Anyway, I ended up with a therapist and a medication prescriber. She asked me why I was on Klonopin and I told her (of course she had never heard of the condition) and I showed her that it was in the DSM. She was really cool and didn’t doubt me at all. Then one day, I was at an appointment and she looked at me and said, “I want to say thank you.” I was caught off guard and said, “Oh…why?” She replied that a new client of hers had come in with HPPD symptoms, and because of me she knew what he had and knew to prescribe him Klonopin. I was so happy that at least one person suffering from this awful condition was helped. She was a great prescriber and I miss her to this day. Anywho…love all you guys!! We will eventually figure this shit out, right!

I'm curious, which symptoms did you get with your HPPD? Did you get the common non-visual ones, like dpdr, head pressure, brainfog/impaired cognition (feeling dumb), visual snow, ghosting etc? Also, you're EXTREMELY lucky that Klonopin still has an effect, it's very rare to not build up a tolerance rather fast to benzos. If you got said symptoms, how much has it helped them?

 

Lamotrigine took away my occational hallucinations and 90% of my non-visual symptoms, also improved my static, palinopsia etc with like 10%. But after two years i built up a tolerance and it lost it's effect, increasing the dosage did nothing either.

 

Anyways, i got prescribed Klonopin by my doc (1.5 mg) and it worked as well as Lamo, even improved the visuals like 10% more than it, but after only 6 weeks i felt how it gradually were losing it's effect, so at week 8 i upped it to 2 mg, and now i've been on it for 4 weeks and once again gradually feel how this dosage is losing it's effect, so i'm living on borrowed time.

 

But i will soon get an appointment to my doc and we will try Keppra instead, since quite a few here has had some success with it, and since Lamo worked so well for me, hopefully it will as well. If it does work, i don't look forward to weaning of the Clonazepam though, but from what i've gathered it doesn't have to be very painful if one decrease 5-10% around every 3-4th week, especially when one hasn't been on it long term. 

 

Anyways, you could try to add Lamotrigine to your mix, a low dose might improve your symptoms even more. Also, did you start at 3 mg right of the bat or?

[AF44]

Oh I found you! I got static, DP/DR (which is the worst in my opinion,) tracers, afterimages, total cog fog (ended up losing my job at a bank because I couldn’t concentrate on anything) head pressure, floaters-you name it, I had it! I stopped all drugs and drank a lot to cope, but of course alcohol just made all my symptoms worse. After the neurologist grudgingly admitted HPPD could be a “thing” and Rx me Klonopin, he said the only other thing I could do was to go to a mental health clinic, which I did. (BTW, the Klonopin was absolutely a miracle drug, it took 99% of my symptoms away. I remember telling my mom, “I can see clearly for the first time in like 20 years.”) But suddenly I was told I had Bipolar Disorder and put on lamotrigine, sertraline, continued with the Klonopin at 1.5 mg. I did ask to go up a half mg. because it seemed like the effects were wearing off a bit, but then I was fine. I was on 1.5 for years on end before the zillion prescribers decided to try all sorts of different meds for my “Bipolar” which just made everything worse. (Especially antipsychotics! Tried to add those to help my depression. Needless to say, they did not work. Never take an antipsychotic.) One of my many prescribers said I had “manic panic”, meaning my anxiety was actually mania and not anxiety. He says, “I’m going to double your dose of Klonopin.” I tried to tell him that I only took 1.5 and it was for HPPD. I’m pretty sure he had no idea what I was talking about. So he doubled me up and I basically just kept taking the 1.5, then started taking 2 mg for a while, then 2.5, now 3. I have a hoard of extra Klonopin lol. I admit sometimes it seems like 3 isn’t quite enough on some days, (like if I had way too much coffee or didn’t sleep right or had a “flare”) so on a bad day I will take an extra, but pretty much 3 mg is fine. I love the phrase you used, “Living on borrowed time.” That’s what I feel like. I am 44 and I have been on Klonopin since 2009. I can’t even math right now, but that’s a long time. I’m TERRIFIED that someday I will not be able to get it anymore, since it’s a Schedule  IV substance and they are cracking down hard on opiates, benzodiazepines, etc. Do you live in the U.S.? If not, how easy/difficult is it to be Rx benzos? I feel like because of the amount I take and how long I’ve been on it, the withdrawal effects would be like living in the 7th circle of hell. Anyway, sorry for such a long reply! I’m glad you replied to my post, it’s nice to talk to people directly

[Hall89]

It's crazy that it had such a good effect on your visuals, snd god do i envy that it still works for you! Consider yourself EXTREMELY lucky when it comes to that. And yeah, antipsychotics is poison, they really are some of the worst psychiatric drugs there is, and in my opinion,any doc that prescribes them for anything but psychosis/schizophrenia and sometimes bipolar should lose their license.

 

I live in Sweden and i won't have to worry about getting my Klonopin, because my doc is great! It is however extremely difficult to get it prescribed here, but since she's aware off that i will check out the day that this can't be medicated anymore, she did some reading and asked me if me if i wanted to try it and see if it might work long term, sadly it didn't and now i'm dependant off it, so if Keppra works, i will have to wean of it. I wish that i was on your kind of borrowed time instead, because i have no problems getting legit pharmacy Klonopin in blisters from the black market if i for some reason couldn't get it the legit way anymore. 

 

I'm curious, are you still on Sertralin? If not, how long were you on it? Or are you only on Wellbutrin and Klono now? Have the symptoms that flared up when you got on Wellbutrin gone away?

[AF44]

Hi, I found you again! I totally cracked up when you said any doc that prescribes antipsychotics for anything other than schizophrenia or psychosis should lose their license I too have a prescriber (many before her as well) that have agreed to let me have the Klonopin. I wonder if it is because I have been on it for so long that they figure the benefits outweigh the risks of taking me off of it? Also, it helped that a neurologist was the first doctor to prescribe it to me. Apparently he is well known and well respected in his field. I also had a second neurologist check me out, and she agreed I should stay on it. I’m glad you have only taken Klonopin for a short amount of time. That way it will be easier to wean off of. Compared to me, who has been on it forever. I currently take sertraline, Klonopin, lamotrigine, Buspar, Depakote, and bupropion. It seems like I didn’t have a problem with the bupropion. However, my horrible “flare” had died down a little, so I don’t think the bupropion had much to do with any of that. I am on all of these medications due to being diagnosed as bipolar, but I honestly don’t think I am. I think I had depression, Borderline Personality Disorder, PTSD and anxiety when I was a teen. Then I fell in with a really abusive guy and he was the one who I was dropping acid with like, every weekend. I didn’t really have a problem until that damn day in August. It was August 5th, 1998 and I was 19 years old, about to turn 20 beginning of October. That’s how well I remember the day I got HPPD. However, I was also taking an antibiotic for a UTI at the same time, (Ciproflaxin) which is horrible (read up on it) so I always wondered if the combination of that antibiotic while on the LSD that day had something to do with getting HPPD, or if I would have gotten it anyway. I am scared of the day when I might be forced to stop taking Klonopin, but my husband, who is awesome and somehow “gets it” even though he’s never even done LSD or anything stronger than smoking pot a couple of times when he was younger, promised me he would do everything in his power to make sure I can still get it. He’s so funny, if I’m having a bad day once in awhile I will tell him my eyes are bejiggedy and he tells me to just relax and don’t worry about housework or dinner or dinner or anything I hope you have someone like that in your life? To me you speak like a young man, but for all I know you’re an old broad like me

[Hall89]

Yeah, they really should, their list of side effects is almost as long as the bible and being on it long term actually decrease the amount of grey brain matter in the brain. Heck, 1 in 10 gets diabetes from Abilify, it really is poison. I have a brother that's schizofrenic, and i see first hand all the side effects he's struggling with, but it's better than the alternative, which is being in a psychosis.

 

Yeah, i'm sure that you won't have to worry about being cut off, you've been on it for so long, so doing that would be malpractice on the doctors part.

 

I'm no doc, but if i were you i would cut them all except the Lamo, Klono and maybe Wellbutrin, depending on how it affects your HPPD the coming months. But combining Buspar and Sertralin, is not good, since they both affe t the serotonin receptors, which increases the chances of getting serotonin syndrome, hppd and even medically induces psychosis. And since you're already on Klonopin and Lamotrigine, i see no reason to why you should be on Depakote/valproate, i mean, being on 3 antiepileptic drugs when you don't have epilepsy makes no sense. Imo, the less psychiatric meds thay you have in your body, the better, especially antiepileptics because of thei affect on memory etc.

 

Sorry to hear about the abusive asshole you got in to a relationship with, but i'm glad that you have such a supporting husband as you do now!

 

My case is kind of ironic, because i got my HPPD (same severity as yours) from cannabis alone, which i turned to for self medicating chronic back pain and insomnia. No history with any other drugs than alcohol a few times a year. I was however on an SSRI, which i believe increased the chances of getting this debilitating nightmare of a disorder. But it's ironic, since i only did it like 8 times, so i must've had a real vulnerability for it, since there's people regularly using psychs, smoking weed and are on psychiatric drugs as well for years and don't get it. But i quess that some of us has to draw the very short straw. Honestly, i would rather have taken my chances with cancer than this or be paralyzed from my waist down and no ability to speak. Severe HPPD is imo without a doubt one of the most agonizing non-lethal neurological disorders there is.

 

PS, i'm a 33 year old male, got this february 21 2021, a date that i never will forget.

Edited August 19, 2023 by Hall89

[Hall89]

And i'm curious, does it still give you as good effect as the first months, that is, keeping your mind clear, head pressure away, dpdr etc, except when you have the "flare ups"? And which symptoms do you het with these flare ups? Sorry for all the questipns

[AF44]

No I really like talking to you! I totally agree I’m on too many meds. The prescribers just keep throwing them at me like candy! I have tried to get off the Depakote and sertraline and the withdrawal effects are a total nightmare! It’s so bad I just end up going back on them. And I was wondering at one point about the Buspar and the sertraline giving me a chance to have serotonin syndrome. I worry about that because years ago I was prescribed yet ANOTHER med called Trazadone. It’s an antidepressant but also used to treat insomnia. I was on 150 mg and all of a sudden I started feeling totally effed up, and I went online and my symptoms were the same as serotonin syndrome except not as bad cuz I wasn’t on it for very long. I went to an urgent care doc who said stop taking it and asked me if I had enough Klonopin to help my symptoms subside. It took like a whole week for me to feel normal. I wish I had never taken any psych drugs except the lamotrigine and Klonopin. Once you start taking all these crappy meds, it’s like you’re trapped and there’s no way out. I used to be sharp as a tack and now I feel like a stupid clod because I can’t think straight half the time. I get tired and fatigued very easily because of all the meds. 
That’s weird that you got bad HPPD from weed, although I have totally heard of that happening. I used to smoke weed in high school and I noticed that even when I wasn’t high, I totally had dr/dp a lot. It was annoying and a little scary but I didn’t think too much about it. 
We are so alike in our thinking! I told my husband that I would rather have a debilitating physical illness or chronic horrible pain rather than HPPD. It’s so freaking horrible. 
Oops, my friend is here for dinner so I have to go but I love talking to you and feel free to message me any time! 

[Hall89]

Yep, SSRI withdrawals can be a nightmare, so just like benzos, it should be done slowly. But when it comes to SSRI's, a study showed that it's the lowest therapeutic dose that gives 70-90% of the effect, depending on which one it is. So it has to be done real slow when coming down to the lower doses, a method that many uses is to decrease 10% of their current dose every 3-4th week, which is best/easiest done with a liquid form.

 

As said, i had been on Celexa (20 mg) for 13 years when i got my HPPD, and when i a couple of months after the onset read that it generally worsens HPPD, and in very rare cases can cause it, i started weaning of it, cutting pieces of and using a precision scale that can weigh mg. Today i'm at 5 mg, but i feel that i could've dropped the first 10 mg over two months, because it was when i got below 10 mg i started to get real rough. I actually paused it in december, because the drop from 5 to 4.5 mg was HORRIBLE, so i backed up. But this was all done during the time that Lamotrigine kept my worst HPPD symptoms away and i was functional. So for now i won't touch it. If Keppra works, which my life kinda depends on, i will have to wean off the Klonopin, and then i'll continue the SSRI taper, but as said, it all hangs in the balance on Keppra - that it can give me a similar symptom relief that Lamotrigine did. God it's frustrating that my body built a tolerance to it, and now gradually doing it against Klonopin as well, so you're lucky there.

 

Jesus! When it comes to docs and psychiatric meds, it's like >90% of them don'teven have basic knowledge about them. It literally takes a few min to check the interactions at drugs.com, and thanks to internet and our access to pubmed, we can learn more about it than what many of those know, ChatGPT 4 is also a godsend.

 

Yeah, you should really just be on Lamo and Klono, the rest is definitely affectingbyour cognition. But remember that Klonopin has an affect on this as well, but in your case it's better than the alternative, because the impaired cognition/brainfog that you, i and many others get with it, makes one feel as dumb as a fish. I could literally not ecen get through the alphabet in my mind before i got on Lamotrigine, and pre-HPPD i was a straight A student.

 

I enjoy talking to you to,  i will answer your DM later!

[AF44]

Oh I guess I’m not as bad at threading as I thought I was I’m really interested in your thoughts on Keppra and what symptoms does it take away? Is it an SSRI? I keep hearing about Keppra and was considering trying it but I swear, the thought of adding another med to my “cocktail” makes me want to jump off a cliff! I’m super sensitive to most meds anyway. I agree about the tapering thing…wth?? Every prescriber that has tried to taper me off of a med is insane. Half of them should be their own patients. When I wanted to get off my 100 mg sertraline, I had a prescriber that said, drop down to 50 for a week, then stop taking it. What!? I tried to do what she said and it was awful. I couldn’t tolerate the withdrawal effects, especially the head zaps. Felt like being poked in the head with a cattle prod zapping me every 10 seconds. I had to go back on the 100. 
Haha dumb as a fish! I love it! Cuz that’s what it feels like half the time. Every doc I’ve dealt with has said long term effects of klono can cause early onset dementia. I looked right at them and said, “I’d rather have dementia than HPPD symptoms.” 
I’m so frustrated, like you are, that I can hardly think straight anymore. Like you, I was basically a straight A student, quick with math and numbers, I could spell anything correctly, and I read like a crazy person. (I still read like a crazy person but my eyes tire and sometimes I get those weird like, reflection things under the words. Do you know what I mean?) 

I am always on all the medical websites and I feel like I know way more about this shit than the docs do! (Regarding meds.) But they don’t like it when you tell them stuff cuz they get all offended, like you are hurting their pride by saying you know more than they do. Which is true most of the time. What is ChatGPT 4? I’ve never heard of it. Do you know when and if you will be Rx Keppra? I’d like to find out if it helps your symptoms.