AF44

On 4/12/2024 at 1:16 AM, Jay1 said:

Welcome and thanks for sharing. 

I fear we are seeing the first ripples of a tsunami of HPPD cases brought about by this type of therapy. 

I hope you are doing ok

I had that same thought when I first heard of these “therapies” and it scared me. I am also more scared because my eldest son who is 20 recently told me that when he turned 21 he wanted to “get into mushrooms” by which I’m assuming he meant trying a therapeutic approach to his depression and anxiety and I’m really fearful of what will happen to him.

Hello,

You will not get into trouble for taking drugs, at least not with the law. (At least here in the States, idk where you live or the laws there.) I got HPPD when I was 19 (I am now 45) and when I went to a bunch of doctors for my symptoms, I did not tell them I had done LSD because I thought I would go to jail. This was not the case, and I wish I had told them. You are so precious and we are all here for you. It’s not your fault that you have this condition and you are not “bad” for experimenting with drugs, tons of people do and some of us just happened to get HPPD. xoxo

On 4/19/2024 at 5:05 AM, joegives said:

Really scary short term memory issues

Omg! That’s what I have!! My short term memory is so bad it literally scares the crap out of me. Sometimes it’s like I have a mini fugue. For instance, the other day I took my son down our main drag so he could buy some kind of cord he needed for his headphones or whatnot. Then he wanted to go to the art shop to get good quality colored pencils. He asked me to hold the computer cord while we looked at the different boxes of pencils they had. It took a bit for him to decide what he wanted. We went to the counter to pay. As we walked out the door, he said, “Do you have my computer cord?” (Good thing he asked because I had completely forgotten we’d even gone to that store.) We walked back into the art shop and I kept looking and looking at the shelves of pencils, thinking maybe I had lain it down on one, but no dice. So I went to the cashier and actually asked if someone had turned in a computer cord. What happened was that I had been holding it, set it on the counter when we paid for the pencils, and immediately forgot the whole computer store trip/me holding onto the cable thing had ever even happened. It was just a blank spot from the time we left the computer store. Didn’t even remember we’d gone in there first. The other scary thing is that I have loved to read since I was a little girl. I had almost an eidetic memory when I was young. At any rate, my memory is so bad I hesitate checking out books by authors I like, because I have no idea if I’ve read the book or not. Then I will crack it open and think, oh yeah, I did read it because some scenes are familiar to me and I kind of remember the gist. All of the books I read generally have a plot twist or even a double plot twist at the end. It’s so bad that even if I’ve read the book before, I have no idea how it ends and am shocked at the twist! Which I guess in one way is a bit cool (hey, I might not ever need to buy a new book again!) but mostly it scares the crap out of me

On 4/10/2024 at 11:08 AM, brake said:

Funny to me... one of my bestfriends was like yeah of course you should take it, severe side effects are like less than 1%.... and I had bad luck again

Ikr? That’s me!! I literally get every freaking bad side effect from most medications I’ve taken. Luckily what I take now (Depakote, Lamictal, Zoloft, Buspar, Wellbutrin and Klonopin) I can handle. I’ve been offered Gabapentin for nerve pain and I’m like, hell no! Most antibiotics wreck me except for Amoxicillin. Supplements wreck me. I can handle Vitamin D. It’s sooo weird. I don’t understand why even vitamins and supplements worsen the HPPD. It sucks! 

22 hours ago, brake said:

Lamictal was good but I got side effects like after Gabapentin although not as bad so I had to stop taking it. It didn't cure me though. I don't remember how effective it was exactly but it did help with anxiety, depression and some of the visuals.

Thanks! What did the Gabapentin do to you, out of curiosity?

14 hours ago, AmitV said:

Not particularly. But I had a lot more symptoms, that went away with it. As I understand HPPD, PPPD, VSS are all Functional Neurological Disorders from Trauma or brain trying to get rid of stress. Have to recognize if that stress is coming from past trauma or medication-encited event like akathisia and dyskinesia and treat accordingly. If someone has specifically "childhood" trauma, they should consider EMDR trauma therapy as well..

Functional neurological disorder (FND) | NHS inform | NHS inform

All of this coming from stress/stuck in fight-flight/inner turmoil. The amygdala has deep connections to visual perception, vestibular, auditory, and sensory processing centers. Calm the amygdala down with treating your trauma and these problems go away. Naturally, this is not a psychotic condition, symptoms are 100% real! But people don't have the proper understanding of psycho-somatic/functional neurological, symptoms are fucking real! You're not crazy, you and I are in pain! It's fucking hell! The brain does this to protect you from pain (PTSD), because it feels you're injured. Resolve the pain/trauma and the check engine light goes off, and symptoms go away.

This has nothing to do with serotonin, this is dopamine, gaba and norepinephrine. So try all kinds in the form of supplements, gaba enhancers like P5P, gotu kola, niacinamide. Noepinepherine reducers like clonidine, magnesium l-threo. Or Dopamine agonists, if dopamine agonists make you worse, then check if you have slow comt or overmethylating and load up on niacinamide and hydroxy b12.

All the success stories from clonazepam, are simply that the amygdala stayed calmed down for 2 months and abolished the maladaptive circuit. You go off it, knowing how FND's emerge due to pain and trauma, and the pain of withdrawals kick it back up again, some only experience mild withdrawals.

Clonidine utilized in some older pieces of HPPD literature, lowers norepinephrine in the amygdala (lowers stress response).

So ideal candidates are things that stick such as P5P, niacinamide and some more. See youtube link below. Breathing exercises and distraction, greatly help. 

Not everything works for everyone as you know, so it can be a bit of an effort to figure out what works, if it does you will feel the racing thoughts in your mind slowing down within 3-5 days. This is the same problem with drug-induced akathisia, what works for one makes another person worse. If it works, it works in less than 7 days! The same thing many have reported on this forum with some meds, works really quick if you strike the right one! Strangely akathisia is also a dopamine and gaba problem, that flips the switch on drug induced inner turmoil/trauma.

The racing mind is a function of trauma/pain, which causes HPPD, VSS, PPPD, Head Pressure, muscle stiffness, tremors, and fatigue in the form of functional symptoms, previously known as conversion disorder.

"Converts" mental trauma/fear to neurological symptoms. Most people with HPPD will attest that the one event brought a lot of traumas forward in the mind and can't stop the mind from racing, although they are more preoccupied with the symptoms than the mental comorbidity. Truth is have to calm the mind, for the symptoms to resolve. Benzos do that, but well you know what happens with tolerance, withdrawal, etc. Until such time underlying trauma/racing mind/trauma is resolved, symptoms will morph from one to the next, 6 months hppd, then pppd, then head pressure, then something else, then a lot of mixed symptoms. So benzos aren't a solution, benzos are sedating and suppressing trauma resolution pathways, that's why they cause dissociation. If trauma is suppressed, it has to come out in some way, it'll show up as dissociation.

 

Wow, thanks so much for that! It makes a lot of sense to me and you are obviously quite intelligent and well-informed. I’m looking forward to watching this YouTube video. I have been on clonazepam for over a decade. Interestingly enough, after using LSD multiple times, I had very slight visual symptoms that never bothered me at all, I just thought it was a little weird and figured it was something that happened because of LSD use. The trip that tipped me over the edge into full blown HPPD was a HORRIBLE trip! I can’t even describe how bad it was and how terrifying. I was also taking an antibiotic for a UTI at the same time, Ciproflaxin. That stuff is poison in and of itself. I always wondered if the combination of the two is what caused my terrible HPPD. Sorry, I might be veering off the path of what we were talking about in the first place. I’ve always had a wandering mind and it’s worse the older I get! Thanks again for all the great info!

Hello all!

I have a question: for those of you that have tried lamotrigine for your HPPD, how effective was it? 

Just now, AF44 said:

Is active vitamin b6 the same as taking an OTC supplement, or is it something different?

Oh btw I forgot to ask, does it help with the weird dizzy/internal vertigo/swaying feeling? 

On 3/10/2024 at 9:04 PM, AmitV said:

I started active vitamin b6 (p5p) for treating drug induced akathisia. Turns out it increases production of the liver enzyme that delivers brain gaba. An immense relief from anxiety, agitation. Noticed my visuals improved 40% over 2 months. Still have some crazy stuff. Who knows someone might get a bigger benefit out of it. No side effects. I’m up at 500mg/day. Split into 3 doses per day. Some people report nausea and headaches over 100mg doses. But my understanding is in some people 50mg is enough for an impressive improvement. 
 

Thought it was worth sharing here.

Is active vitamin b6 the same as taking an OTC supplement, or is it something different?

On 3/15/2024 at 7:11 AM, AmitV said:

Yes SSRI trintellix started it. As far as I’m aware trintellix is a glutamate agonist and was modelled as an antidepressant after mushrooms.

Not that this has much to do with your question (sorry!) but your story reminded me of when my husband was put on Cymbalta. It’s an antidepressant that is supposed to also help with peripheral neuropathy (which my husband has.) The side effects were bad so he stopped taking it cold turkey even though I told him that was not a good idea, that he should taper off of it; he didn’t listen because he’s stubborn lol. Anyway, he was out of commission for literally about a year. It was HORRIBLE. I can’t remember all of his symptoms but he was having constant muscle twitches, couldn’t think straight, was miserable. He sat in his recliner 24/7. He could not work. We had to cash out his 401k or we would have been screwed. Like I said, it took about a year and he started feeling back to normal and got a good job that he still has and has excelled at. But…sometimes he gets like brain fried and kind of feels like he did back when he quit the Cymbalta. I don’t think he has or got HPPD from Cymbalta but it did SOMETHING horrible to him that to me sounds similar to those “fried” symptoms I get. I’ll have to ask him if he had visual snow or other HPPD symptoms because now I’m curious.

On 3/13/2024 at 1:54 AM, Spartan said:

Thankyou 

No. I wish!

14 hours ago, brake said:

Yeah and before I was able to pull all nighters. Pfttt not anymore

Same!!

On 4/3/2024 at 8:45 AM, brake said:

Yes for some reason sleep seems to be very important with HPPD.

That’s very true. Last Thursday I had to take my son to the ER. We ended up getting home at 4:30 in the morning. I was fried. I set my alarm for 9:30 am so I didn’t sleep all day and mess up my sleep schedule, and felt like crap. Once I took a nap though, I felt better. There is no way I can stay up all night. 

On 3/9/2024 at 8:20 AM, brake said:

I don't know. I've never been through the experience. I have symptoms even on the benzos lol. I'm used to it.

I still have symptoms as well but I’m mostly normal feeling. I do get flares though that are REALLY bad. I hate it.

On 3/27/2024 at 7:56 PM, joegives said:

It didn’t in my case. I was on clonazepam for a year. It did, however create some new cognitive issues that are very slowly going away (but may be permanent)

If you don’t mind me asking, what sort of cognitive issues?

On 2/12/2024 at 6:54 PM, jas said:

i tried lamotrigine but got severe ear worms that distracted me from just talking to people or reading. keppra is basically my last option. 

Hi,

This sounds really stupid but when I first read “ear worms” I thought you meant you literally had worms in your ear caused by lamotrigine But you mean ear worms like when you get a song stuck over and over in your head? What sorts of sounds got stuck in your head? I have no idea about Keppra, I have never tried it, but a lot of people on here talk about it. So I’m of no help but was curious when I read your post.

Omg-

I did LSD many times prior to getting HPPD. I had mono as a teenager and I heard the virus stays in your system for the rest of your life, dormant. BUT-the time I took the LSD that caused my HPPD, I had a UTI and was taking the antibiotic Ciproflaxin. So I DID have an active infection at that final trip. Is that what pushed me over the edge? I always wondered. I also wondered if it was the combination of taking Cipro and LSD at the same time. My bf at that time said, “Never mix street drugs with prescription drugs.” 

On 2/27/2024 at 6:09 PM, brake said:

I read about other posters curing after around 5 years. I also read about an R&B singer who said she had minor visual disturbances (not as intense as HPPD) after using LSD that lasted 10 years. I think after 10 years it's safe to say you will have it forever.

Hehe yeah I’m at the 26 year mark-lucky me! I will say that before I was put on Klonopin, my symptoms definitely improved, like kasco said-in small increments. Sometimes I would go days to a week without being bothered by symptoms. Then I would have a flare, but eventually go back to baseline. I heard that it’s different for everyone though. My motto is- there’s always hope! 

On 2/28/2024 at 11:09 PM, firehawk said:

Does anyone have problems with taking vitamin C? its really the only thing I have been starting to take everyday because its the sickness season besides magnesium. Now I have noticed I get these headaches in the back of my head and I get anxiety and the vision worsens I feel from this. and I know that must be what its from since its the only thing I take. I stopped taking for about 3-4 days and the headaches stopped. Does anyone else have the problems or is my sensitivity just super high this early since ive had hppd and got sober less than a year ago.

I literally have problems with every single supplement I have ever taken except for Vitamin D and fiber. I could not even take prenatal vitamins during my fourth (and last) pregnancy because they exacerbated my HPPD unbearably. I was iron-deficient at one point and couldn’t even take iron supplements. Forget Omega-3 fish oil. I haven’t tried Magnesium, I’m too scared to take anything. Oh I have a question- do y’all have a problem taking Pepto Bismol? I know that sounds stupid but I can’t even take that without it messing me up, maybe because of the aspirin in it? Anyway, I totally believe you are also very sensitive and yes, most likely the Vitamin C caused a flare. 

On 2/29/2024 at 7:51 PM, brake said:

Interesting. What I found is that I'm "better" overall after benzo use. However I can't escape the permanent visuals.

I’ve been on Klonopin every day for 14 years. So do you think even if I went through a proper withdrawal, all of my symptoms would return permanently? I couldn’t handle that

9 hours ago, Spartan said:

I have a question

If serious hppd sufferers were monitored in hospital say for a period of 2 weeks.. 

Do you think the report from medical staff would pick up any significant abnormalities or pathologies? 

With our condition/ illness it's so hard because everything is happening on the inside and not so many blatant physical manifestations.

Please share your thoughts. ???

 

 

Maybe the only way they could is if they monitored our reactions to certain medications? Then they could record our symptoms. But it would still not be physical proof to them because they can’t see it. Also, I guess it probably wouldn’t be good to have different meds given to us because it would mess us up more than ever. Even a person without HPPD would get really messed up if doctors experimented on them with psychotropics. 

6 hours ago, Jay1 said:

Sadly, probably not. The only test i've heard of to show anything is a qEEG (not a normal EEG).

The only success I ever really get with doctors is to calmly explain what hppd is, show them research from other doctors and try to guide them to the correct conclusion (basically letting their ego think it's done some of the work). It's a fucked up system, but it is where we are currently at, in the UK at least. 

Yeah when I first discovered that I had HPPD, I asked my neurologist if I could have a qEEG done. He said we didn’t have anything like that here (I guess meaning in the part of the States we live in?) Does a PET scan show anything? 

On 2/29/2024 at 1:26 AM, Jay1 said:

Just a side note, anyone thinking about the blindness thing (we've all thought it)... Just try wearing a dark blindfold for 24 hours. It's way harder than you think!

Yeah we should all stop talking about going blind

19 hours ago, James3524 said:

You would need to have your visual cortex removed. Removing eyeballs wouldn’t do much

I’ll have them all removed

On 2/26/2024 at 11:12 PM, Spartan said:

thankyou im actually Australia..

I'm a severe and long term sufferer / over 30 years. 

Yes a part of the law is that human beings have the human right to medical treatment, tho I feel I am got getting it sadly and therefore condition worsening and immense suffering.

Reason things have been so worsened over the past 2 years is because I have had massive existential treat / stress and trauma that is not going away, yet. This has driven me to the edge with no relief. 

I'm currently in disability support also for severe hppd. 

I recently contacted Dr Locke in the USA / hppd specialist, tho he charges something like $500 USD an hour . That's out of my price range. 

I have played a key role in the existence of the hppd protocol study, tho that is 800K to get It started, don't have it yet and Still looking at funding options. 

Yes I have a mum and a dad they understand and they are awesome. They are likely the only reason why I'm still here physically today. 

Yeah I did a recent post about removal of eyeballs to see if still hallucinating tho unfortunately many think it would still be a yes because it's coming from the brain and not the eyes. 

Thankyou I appreciate the support.

Wishing you blessings , peace and healing also.

I am also a long-term sufferer, about 26 years. My closest friend knows that I have HPPD and I jokingly (or maybe half-jokingly) said I wish I’d go blind and she said, “I don’t think it would change anything, since you still see stuff with your eyes closed.” 
I am so glad you have your parents as a great support. I have my husband…no clue what I would do now without him. I was functional enough I suppose, through my 20’s and 30’s, I had no idea about HPPD but knew my issues were due to my last acid trip. Sometimes I didn’t even notice it, then it would get bad, then go back to baseline, etc. So, when I was like 33(?) I was addicted to Red Bulls and was drinking them every day. Also exercising my buns off! Whaddya know…everything got worse! (Imagine that.) Like, intolerable. I Googled of all things “caffeine overdose” because I figured maybe I OD’d on the Red Bull. I went through the maze and ended up on a Wikipedia page about HPPD! I couldn’t believe my eyes. (I can never believe my eyes, har har.) So I was like “Great! Klonopin is the treatment!” I immediately told my family, and went to a neurologist, long story about him not believing me but then grudgingly looking it up and agreeing to prescribe me the Klonopin, etc…now I’ve been on it literally every single day since. Not one day without. And I still sometimes get flares, like now. I thought my recent flare had subsided, but it’s back. So I was really affected by what has been happening with you, because I know it would literally be Hell on earth if I were to be taken off that medication. I’m always keyed up each month when it comes time for my refill, nervous, sad thinking about the future if I am cut off. My family needs me, I have grandkids (that makes me sound so old! I’m “only” 45. Maybe that is old.) 
Yes, I didn’t even think about the expense of seeing someone like Dr. Locke. I can’t afford that either. Now I have forgotten my entire point. I swear it’s the HPPD. I get so forgetful and foggy that I start off trying to respond to what was written to me, then end up talking about something completely different and unrelated and forgetting what the original convo was supposed to be about. Ugh! Sorry. I guess my whole point is that I really hope you start feeling better and I will be praying hard for you