Reccomendations based on the drugs that caused my HPPD?

[raincat]

I have had HPPD for about 2 months. I'm wondering if there are any noticable patterns in HPPD based on what drug/drugs led to that situation, and if there are any specific reccomendations for what to try or avoid based on that. This is in chronological order. I had a bit of a history with some drugs that didn't cause me any problems, then I took a high dose of a really potent shroom strain and jesus christ I hate writing about this because it was traumatic as hell. Part of the horror of it was the fact that it caused my jaw pain to flare up very intolerably. So I was in every possible type of anguish for what felt like an extremely long time, thought I died and went to hell to burn for eternity, luckily I have massive amnesia about it. That was the beginning of my drug-induced issues, idk if I had HPPD at that point but it probably gave me PTSD, my doctor suspects that diagnosis too. (I got lucky with my doctor, she admitted that she doesn't know what HPPD is but she did her research on it and she's doing her best to help, I am currently in the processing of trying lamictal, I'm at 50mg as of a few days ago.) Then a little while after that I started taking weed edibles every day, at a pretty high dose. That was because I was in the midst of anorexia, and my health was in a dangerous place. Taking a bunch of edible weed every day was the only thing that got me to eat and get into better physical health. It was great for a couple months but eventually it didn't help as much and I was planning on taking a tolerance break. Then comes the idiodic descision that caused my definite HPPD. I had an amanita muscaria gummy, with an unknown amount of "hemp extract" listed in the active ingredients alongside the amanita chemicals, and later that day took an additional dose of edible thc. My jaw pain flared up terribly, so much so that I cried, (i have issues with teeth grinding and jaw tension that cause my jaw to be stiff, sensitive, and painful), I had tremors, panic, experienced a full on psychedelic trip, I was on the floor as a shaking crying screaming laughing mess so my dad called 911. I was taken to the ER where they kept me until 4am to make sure I wouldn't have a seizure (thankfully no seizure), (and that experience was quite terrible for sure but not even close to as bad as what the shrooms did to me), But I haven't been the same since then. I immediately went of all the drugs (except prescriptions) without tapering off, so that put me into weed withdrawal which sucked to deal with and sucked even worse because I had HPPD at the same time. The withdrawal symptoms were pretty much gone after a few weeks, but the HPPD remained. Sometimes, especially when my jaw pain flares up, I feel like a part of me is reliving the trauma the drugs gave me. It is terrifying. I try my best to fight it and tell myself I'm ok.

Anyway, the takeaway is that the drugs that caused my problems are shrooms, edible cannabis, and an amanita muscaria gummy. Is there at least some other people who had those same drugs as the stuff that caused this? I kind of lost the plot with my intentions on making this post. I'm naturally a very wordy person (autism) and I tried not to get hung up on too many details, maybe I still put too many details though.

[yarkadin]

What was the time lapse between the traumatic high potency mushroom experience and your experience with amanita muscario?  Was it a couple months as your post leads me to think?  Did you not have any HPPD symptoms at that time whatsoever?  Asking this out of curiosity...

I have heard of cannabis causing HPPD, talked to a few people years ago who had that history, but it's less common.  Most of the time people who do mushrooms or LSD get it.  I'm wondering if these latter two drugs cause some kind of susceptibility shock, stripped off the protective layers of your brain, crudely speaking, that later got aggravated and floodgates opened with the addition of this muscario you tried.

I got HPPD 25 years ago and I very vividly remember the whole experience... (I also had a trauma.)  Initially I had extreme light sensitivity, very vivid color changes but I did not see any trails... that came about a few months later without any drug usage.   Did you have any lingering visual changes at all after the mushroom experience?
 

[AF44]

Hello

May I ask what muscario is? I honestly (ironically) don’t know much about drugs. I got HPPD in 1998. Back then we just called all of it either speed, LSD, shrooms, weed or X. So anyway, I got HPPD from an LSD trip. Not a great decision, but after I had the HPPD I ended up doing shrooms at a concert. My friends were doing them and I didn’t want to feel left out. After I got back from the concert, I felt totally bent. The next day, I literally heard piano music all day. It was as if someone were actually playing a grand piano in my house. I was so freaked out. I told my mom and I remember lying on the couch with my head in her lap and her stroking my head as we watched a movie. It was the only thing that calmed me down. Thankfully that unholy piano music went away and I never touched another drug. From some of the people I’ve spoken to on the forum, and some of the posts I have read, it’s starting to seem (to me at least) that shrooms cause worse HPPD, and physical symptoms as well. And more PTSD maybe? I have no idea, as I’ve only done them twice in my life, and the first time I did them was HIGHLY unpleasant and the second time (post-HPPD) with that dang piano music…bad enough having visual symptoms without adding in full-on auditory hallucinations. 

[raincat]

On 7/26/2024 at 6:07 PM, yarkadin said:

What was the time lapse between the traumatic high potency mushroom experience and your experience with amanita muscario?  Was it a couple months as your post leads me to think?  Did you not have any HPPD symptoms at that time whatsoever?  Asking this out of curiosity...

I have heard of cannabis causing HPPD, talked to a few people years ago who had that history, but it's less common.  Most of the time people who do mushrooms or LSD get it.  I'm wondering if these latter two drugs cause some kind of susceptibility shock, stripped off the protective layers of your brain, crudely speaking, that later got aggravated and floodgates opened with the addition of this muscario you tried.

I got HPPD 25 years ago and I very vividly remember the whole experience... (I also had a trauma.)  Initially I had extreme light sensitivity, very vivid color changes but I did not see any trails... that came about a few months later without any drug usage.   Did you have any lingering visual changes at all after the mushroom experience?

On 7/26/2024 at 6:07 PM, yarkadin said:

What was the time lapse between the traumatic high potency mushroom experience and your experience with amanita muscario?  Was it a couple months as your post leads me to think?  Did you not have any HPPD symptoms at that time whatsoever?  Asking this out of curiosity...

I have heard of cannabis causing HPPD, talked to a few people years ago who had that history, but it's less common.  Most of the time people who do mushrooms or LSD get it.  I'm wondering if these latter two drugs cause some kind of susceptibility shock, stripped off the protective layers of your brain, crudely speaking, that later got aggravated and floodgates opened with the addition of this muscario you tried.

I got HPPD 25 years ago and I very vividly remember the whole experience... (I also had a trauma.)  Initially I had extreme light sensitivity, very vivid color changes but I did not see any trails... that came about a few months later without any drug usage.   Did you have any lingering visual changes at all after the mushroom experience?
 

Sorry for responding late, I was gonna do it earlier but I had an unpleasant psychological and physical reaction when I started reading your reply for some reason. So it’s a different day now and I made sure to wait until I’m under the effect of my calming night meds.

 

It was indeed a few months between the shroom trauma and the using amanita muscaria and weed at the same time. I think I probably had some HPPD symptoms before then/after the shroom trip, just like what you described. I already had sensory sensitivity (including light sensitivity) and environmental sensitivity before because I’m autistic, and HPPD has made all those sensitivities worse. I still have those same aspects of the perceptual stuff now, but it’s increased in intensity and there are some new features. Now that I think of it, I do remember looking at the DSM’s criteria for HPPD before it got worse but I wasn’t sure if I met the criteria for it being distressing. I was definitely very distressed every day but I didn’t attribute any of it to the perceptual differences I was having because I’d already been severely mentally ill for a long time before I did any sort of drug, and I was also in a period of denial about how the bad trip affected me because people keep saying that these kinds of reactions don’t happen, and that bad trips are always good for you.

 

TLDR: I had lingering perceptual differences right after the trip, then being on weed almost 24/7 probably did something to it, then having amanita and weed at the same time and the resulting reaction definitely did something to it.

[raincat]

On 7/27/2024 at 12:05 PM, AF44 said:

Hello

May I ask what muscario is? I honestly (ironically) don’t know much about drugs. I got HPPD in 1998. Back then we just called all of it either speed, LSD, shrooms, weed or X. So anyway, I got HPPD from an LSD trip. Not a great decision, but after I had the HPPD I ended up doing shrooms at a concert. My friends were doing them and I didn’t want to feel left out. After I got back from the concert, I felt totally bent. The next day, I literally heard piano music all day. It was as if someone were actually playing a grand piano in my house. I was so freaked out. I told my mom and I remember lying on the couch with my head in her lap and her stroking my head as we watched a movie. It was the only thing that calmed me down. Thankfully that unholy piano music went away and I never touched another drug. From some of the people I’ve spoken to on the forum, and some of the posts I have read, it’s starting to seem (to me at least) that shrooms cause worse HPPD, and physical symptoms as well. And more PTSD maybe? I have no idea, as I’ve only done them twice in my life, and the first time I did them was HIGHLY unpleasant and the second time (post-HPPD) with that dang piano music…bad enough having visual symptoms without adding in full-on auditory hallucinations. 

Sorry I didn’t respond sooner, looking at the replies kinda freaked me out at first for some reason so I’m at another day now and I’m on my calming nighttime meds.

Amanita muscaria is a type of mushroom that has psychoactive chemicals. It’s not shrooms. It does some stuff with your brain that is similar to alcohol. I’ve had it before the bad trip on shrooms got my brain all weirded up, I’d say it’s pretty similar to being drunk but I think I felt more energetic and I don’t recall having any issue with coordination. But my reference for feeling drunk is the time I drank half a bottle of wine, as a very small person with no alcohol tolerance. That made me too drunk to stand. It was fun until I got a hangover that lasted days, Haha.

I’ve wondered if the fact I was at seizure risk at the ER with both weed and amanita in me is directly linked to my perceptual differences and anxiety getting worse afterwards, since HPPD is thought to be related to seizure activity in the visual cortex.

[AF44]

18 hours ago, raincat said:

Sorry I didn’t respond sooner, looking at the replies kinda freaked me out at first for some reason so I’m at another day now and I’m on my calming nighttime meds.

Amanita muscaria is a type of mushroom that has psychoactive chemicals. It’s not shrooms. It does some stuff with your brain that is similar to alcohol. I’ve had it before the bad trip on shrooms got my brain all weirded up, I’d say it’s pretty similar to being drunk but I think I felt more energetic and I don’t recall having any issue with coordination. But my reference for feeling drunk is the time I drank half a bottle of wine, as a very small person with no alcohol tolerance. That made me too drunk to stand. It was fun until I got a hangover that lasted days, Haha.

I’ve wondered if the fact I was at seizure risk at the ER with both weed and amanita in me is directly linked to my perceptual differences and anxiety getting worse afterwards, since HPPD is thought to be related to seizure activity in the visual cortex.

I see. So you are on 50 mg of lamotrigine currently? Is it helping you at all? I take 300 mg but not for HPPD (I was diagnosed with bipolar disorder, though I have my doubts about that.) I was prescribed Klonopin for the HPPD. It seems, though, like my lamotrigine also helps a lot with the HPPD. Since I’ve been on Klonopin for so long, I’ve built up a tolerance to it over the years so I still have symptoms, albeit nowhere near as bad as they were before I started taking it! But it seems when I take my afternoon lamotrigine, it helps calm my symptoms down even more. 
Hm, speaking of seizures, when I was 21 I had a grand mal seizure out of absolutely nowhere. I’m not epileptic and never had one since. (I had the seizure a year or two after getting HPPD. I was on no medication at the time.) So maybe it does have something to do with seizure activity in the visual cortex. 

[raincat]

On 7/29/2024 at 6:53 PM, AF44 said:

I see. So you are on 50 mg of lamotrigine currently? Is it helping you at all? I take 300 mg but not for HPPD (I was diagnosed with bipolar disorder, though I have my doubts about that.) I was prescribed Klonopin for the HPPD. It seems, though, like my lamotrigine also helps a lot with the HPPD. Since I’ve been on Klonopin for so long, I’ve built up a tolerance to it over the years so I still have symptoms, albeit nowhere near as bad as they were before I started taking it! But it seems when I take my afternoon lamotrigine, it helps calm my symptoms down even more. 
Hm, speaking of seizures, when I was 21 I had a grand mal seizure out of absolutely nowhere. I’m not epileptic and never had one since. (I had the seizure a year or two after getting HPPD. I was on no medication at the time.) So maybe it does have something to do with seizure activity in the visual cortex. 

Yes, it's helping a bit, and I think it will help more if I increase the dose. I also have severe mood issues and am very emotionally reactive with uncontrollable outbursts, which it's supposed to help as well. I've heard of people getting seizures after getting hppd, that is a fear of mine. The seizure itself would be scary to go through if I'm consious, and the tension would certainly make my jaw pain flare up intolerably, even if I'm not consious during the seizure I'm sure it would still hurt really bad afterwards. I have so much fear surrounding this pain. I get intrusive thoughts about terrible things that could happen to make it flare up like crazy. But hopefully the fact I'm on a seizure medicine will prevent that from happening, if I happen to be a person who that would happen to.

[AF44]

35 minutes ago, raincat said:

Yes, it's helping a bit, and I think it will help more if I increase the dose. I also have severe mood issues and am very emotionally reactive with uncontrollable outbursts, which it's supposed to help as well. I've heard of people getting seizures after getting hppd, that is a fear of mine. The seizure itself would be scary to go through if I'm consious, and the tension would certainly make my jaw pain flare up intolerably, even if I'm not consious during the seizure I'm sure it would still hurt really bad afterwards. I have so much fear surrounding this pain. I get intrusive thoughts about terrible things that could happen to make it flare up like crazy. But hopefully the fact I'm on a seizure medicine will prevent that from happening, if I happen to be a person who that would happen to.

It’s interesting that you heard of people getting seizures after getting HPPD. I’d never had a seizure in my life until after I got HPPD. It was really freaky. My (ex) husband and I were both in the shower together (TMI but I’m glad he was in there!) I bent over to pull the thing up that makes the shower start and I remember everything feeling weird. I was hot and I said to my ex, “I think I’m about to faint.” That’s really all I remember until I came out of it and everything was spinning. I burst out of the shower and got dressed and started crying. My ex said when I had stood back up, I fell back against him and was “doing the fish.” He said it freaked him out cuz my eyes were wide open and the water was hitting my eyeballs. I’m glad I wasn’t alone in the shower because I could’ve broken my damn neck falling! 
Is your jaw pain due to TMJ, maybe? You should get checked for that. I’m glad the medication is helping!! 

[AF44]

1 minute ago, AF44 said:

It’s interesting that you heard of people getting seizures after getting HPPD. I’d never had a seizure in my life until after I got HPPD. It was really freaky. My (ex) husband and I were both in the shower together (TMI but I’m glad he was in there!) I bent over to pull the thing up that makes the shower start and I remember everything feeling weird. I was hot and I said to my ex, “I think I’m about to faint.” That’s really all I remember until I came out of it and everything was spinning. I burst out of the shower and got dressed and started crying. My ex said when I had stood back up, I fell back against him and was “doing the fish.” He said it freaked him out cuz my eyes were wide open and the water was hitting my eyeballs. I’m glad I wasn’t alone in the shower because I could’ve broken my damn neck falling! 
Is your jaw pain due to TMJ, maybe? You should get checked for that. I’m glad the medication is helping!! 

Oh haha, just realized I already posted about the seizure. I swear with all the meds I’m on and getting old, it feels like I’m getting early onset Alzheimer’s

[raincat]

On 8/2/2024 at 1:14 AM, AF44 said:

 It’s interesting that you heard of people getting seizures after getting HPPD. I’d never had a seizure in my life until after I got HPPD. It was really freaky. My (ex) husband and I were both in the shower together (TMI but I’m glad he was in there!) I bent over to pull the thing up that makes the shower start and I remember everything feeling weird. I was hot and I said to my ex, “I think I’m about to faint.” That’s really all I remember until I came out of it and everything was spinning. I burst out of the shower and got dressed and started crying. My ex said when I had stood back up, I fell back against him and was “doing the fish.” He said it freaked him out cuz my eyes were wide open and the water was hitting my eyeballs. I’m glad I wasn’t alone in the shower because I could’ve broken my damn neck falling! 
Is your jaw pain due to TMJ, maybe? You should get checked for that. I’m glad the medication is helping!! 

That does sound freaky. I've fainted once before, and also gotten very close to it a few other times (including 2 where I was really high, once on weed the other on shrooms, it's uniquely painful and scary to experience that on a drug) all due to dehydration. Do you make the comparison because you've fainted/almost fainted before? Was it super painful the way it is before you faint? I really hope I don't get a seizure. About the TMJ question, yeah, it's TMJ/bruxism. I got checked for it. I'm supposed to wear a mouth gaurd as close to 24/7 as possible but I haven't been. I did for a few weeks at night but I stopped. I tried again recently but it makes the pain worse during the day and I really really don't wanna deal with that. Wearing the mouth gaurd makes my jaw more tense because I chew on it subconsiously. I've been doing stretching excersizes frequently and trying to sleep on my back with my head well supported. The stretching seems to have helped me be able to open my jaw without it popping and being really painful like it used to be. It's still pretty stiff though and hurts alot of the time but I'm managing it ok at this point. It seems that after I get through the most stressful part of the day (4-7pm ish) it gets much better. I take a benzo at 6:30pm every day so that might be why. I know it's not good to take those every day but I'm doing it as prescribed and it's a very low dose. I still worry about dependance, but before I started taking it I was on the edge of/experiencing a panic attack constantly. Which made the phyisical pains I have worse too.

[AF44]

15 hours ago, raincat said:

That does sound freaky. I've fainted once before, and also gotten very close to it a few other times (including 2 where I was really high, once on weed the other on shrooms, it's uniquely painful and scary to experience that on a drug) all due to dehydration. Do you make the comparison because you've fainted/almost fainted before? Was it super painful the way it is before you faint? I really hope I don't get a seizure. About the TMJ question, yeah, it's TMJ/bruxism. I got checked for it. I'm supposed to wear a mouth gaurd as close to 24/7 as possible but I haven't been. I did for a few weeks at night but I stopped. I tried again recently but it makes the pain worse during the day and I really really don't wanna deal with that. Wearing the mouth gaurd makes my jaw more tense because I chew on it subconsiously. I've been doing stretching excersizes frequently and trying to sleep on my back with my head well supported. The stretching seems to have helped me be able to open my jaw without it popping and being really painful like it used to be. It's still pretty stiff though and hurts alot of the time but I'm managing it ok at this point. It seems that after I get through the most stressful part of the day (4-7pm ish) it gets much better. I take a benzo at 6:30pm every day so that might be why. I know it's not good to take those every day but I'm doing it as prescribed and it's a very low dose. I still worry about dependance, but before I started taking it I was on the edge of/experiencing a panic attack constantly. Which made the phyisical pains I have worse too.

I haven’t ever full-on fainted before, but I have felt faint and super lightheaded. I thought I was feeling faint because I was overheated but my vision was like, overlaid with pink (idk how to describe it) and I remember starting to stand back up and then nothing until I came out of it and the whole room was spinning and it still looked pink. I didn’t feel any pain before it happened. 
Ugh, TMJ sucks and it sounds like you have it REALLY bad. I’m so sorry to hear that. And of course it makes sense it flares up because when people are anxious or upset, they tend to grind their teeth and their jaw tightens. I’ve been on Klonopin for about 14 or so years, every day, and it’s a blessing and a curse. I think you should keep taking yours as prescribed and at the low dose, you should be fine.