Jay1

What a way to introduce yourself to the forum!! I'm not saying blind hope is ALL we should do, if you actually took the time to read people's posts on here (spanning 20+ years), you would know that we are some of the toughest, hard working people to try and find cures, guinea pig ourselves, help each other and build mental resilience... But some degree of hope is placed in the hands of scientists and other people out of our control. To use your terrible analogy... Is Micheal J Fox working in a science lab to find a cure... No... He is fortunate to have a platform based on celebrity... We don't.. Also, plenty of his hope is in the hands of other people.

I think if you slowly build the dose, you should be ok... any sign of additional symptoms and just get off it. From my own experience, anti-psychs didn't have an adverse reaction... But obviously they have with others. Good luck and keep us posted

I find my visuals get worse, but my dpdr gets slightly better (with a common cold, at least).

Hey, can you think of anything that is causing this increase? New meds, drugs, stress, more alcohol, coffee, change in sleep pattern? I have had several spikes during my time with HPPD and all but one have returned back to normal after a while (sometimes weeks, sometimes months). The one that didn't was when i stupidly smoked salvia.

I'm sure it's crossed all our minds in one way or another, from time to time. I also don't think it would do anything, my CEVs are terrible, including in a sensory deprivation tank, so I feel like at least part of our visuals are created in the brain. I guess you could try using a blindfold or similar for as many hours a day as possible to see if a lack of visual stimuli helps at all?

I think the anxiety does, for sure... I'm even less social since Covid too.

Thanks Gabriel! It's so helpful to see these success stories. There seem to be many people who join the site, post a lot for a few months, then leave... I can only assume the majority are recovering (backed up by stories like your own and DMs I get). Great to hear this is no longer affecting you and i hope you go on to lead a happy and healthy life!

Did you match the dosage using a benzo dosage calculator? The general rule of thumb seems to be 1mg clono = 10mg valium I found the effects very similar when using the dosage calculator

I've just been reading this article and, although unconnected to HPPD, it is a great example of never giving up hope for a cure. https://www.wired.com/story/brain-implants-that-help-paralyzed-people-speak-just-broke-new-records/ Imagine having the disorders discussed in the article. They must have felt all the same frustrations we do of having an uncommon, understudied disorder. Then a leap of faith and a technical leap cured both of them. Amazing! Keep the faith, you never know what is around the corner.

Very interesting, fingers crossed

I get it occasionally, but don't think it's linked with HPPD. Various things can affect your energy levels... Diet, weather, fitness, meds, maybe even having long covid

Clonazepam is better, imho, but diazepam helps a lot too.

Hope this helps https://www.healthline.com/health/how-to-get-rid-of-eye-floaters#treatment

Yes we have a risk,, i can't say it in any clearer terms than above. MDMA destroyed my life. Simple.

Hi Alain, this does indeed sound like HPPD. It's good to hear that you have now stopped taking drugs, this is the most important step on the road to recovery. It also sounds like the support network in Netherlands is good. Finding people who know what HPPD is must be reassuring. Cosmic's advice is very good, so I don't have much to add.... but I hope your treatment goes well and just know that a lot of people do recover from this! Please keep us updated. Regards, Jay

Yea, it's shit that there is so little research... My hope is that it seems to be connected to anxiety somewhat, which is clearly a huge issue and well funded... A break through in anxiety might be a breakthrough for us too.

Hopefully gene editing will be our salvation.... Maybe AI can help with these more niche illnesses. I'm trying to arrange a qEEG in the next few months, so hopefully that will show something.

I think we need a bit more info than that to begin to try and help. How long have you had hppd? how bad are your symptoms? are you on any other meds? have you stopped taking drugs? have you spoken to a doctor or do you have a doctor that will prescribe you meds?

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!

Have you looked into the ashton protocol? That's seems to be the standard way to very slowly reduce your dose without causing withdrawals. What dose are you on?

Never tried it but would be interested.

What is Mts?

A sample size of one (taking MDMA) just makes it utterly useless... The person may have recovered naturally and just got lucky. All i can say is that MDMA turned my fairly mild, certainly liveable HPPD into something hellish.

For me, it's the same sensation as nails on a chalkboard... It physically hurts and makes me recoil, even if it's something as simple as someone chatting at a normal level. I literally have to cover my ears sometimes when my wife i talking *she is a very understanding woman, thankfully!) Have you had any check at the doctors though... Could be something non hppd related and easier to fix?

Yea, it get this in waves... Sometimes the slightest noise can be excruciating , other times I can listen to music as loud as it goes. I've always put it down to our sensory filters being fucked up.... But i saw a documentary recently about autism and it really highlighted the point that their sensory system is often faulty and visual/auditory overload is a real problem... Maybe we are all slightly autistic and the drugs triggered something?