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Jay1

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Everything posted by Jay1

  1. 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
  2. Clonazepam is better, imho, but diazepam helps a lot too.
  3. Hope this helps https://www.healthline.com/health/how-to-get-rid-of-eye-floaters#treatment
  4. Yes we have a risk,, i can't say it in any clearer terms than above. MDMA destroyed my life. Simple.
  5. 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
  6. 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.
  7. 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.
  8. 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?
  9. 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!
  10. 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?
  11. 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.
  12. 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?
  13. 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?
  14. Welcome to the forum and thanks for sharing your story. I also got a terrible head injury about 6 months into my hppd and often wonder if it affected the hppd or my ability to recover. re: head pressure, i had this for a few years, but it went away after I wore sunglasses almost 24/7 for about a year (note, it might have gone away naturally and the sunglasses were a coincidence)
  15. I know what you mean... it's like micro vibrations of the eye... whether that is a physical thing, or just part of our unfiltered vision is the question. I've always felt like my eyes are making micro vibrations, but the eye doctor has never picked up on anything like that.
  16. Jay1

    My Intro

    Hi V, thanks for sharing your story. What a horrendous event, that you survived that and carved out a life for yourself tells a lot of your mental fortitude. I'm glad you have found this community and finally have found a name for this disorder and people in similar situations. It's a very liberating feeling. I'm sure you will be busy looking through posts on here, learning new coping techniques and possible medication etc... But if you have any specific questions, ask away! All the best, Jay
  17. Yea, used to be 100s per day on here.. I guess they are mainly on Reddit now (Which I found to be a cesspit and had to leave). Glad to hear you still have the energy to keep on fighting and trying other meds, if needed. Would be interesting to see if the sedating effects of clono come back if you do move to a 3 on 3 off approach. I feel like even a 5 on 2 off might be enough of a gap to fend off the worst of the tolerance and withdrawal, as long as the 2 days are in a row and you take the next dose as late in the day as possible. That is purely hypothetical though, so obviously tread carefully if you do try.
  18. Why are you limiting yourself to three meds before giving up? The two meds you have tried have both had some success. Even if the third doesn't, there are a multitude of meds that have helped HPPD sufferers with some degree of success or other. Please keep fighting, Jay.
  19. My view is that is you have to sort of force it to happen by staring and zoning out, it's not hppd. But it does perhaps show you are susceptible to hppd in the future, if you take more drugs. Try not to live with regret about your drug taking... Regret is only useful to stop you doing something again, you've already come to that conclusion, so further regret is just hanging on to negative energy. Try to frame it in a positive way... You experimented with drugs, like most people, and came out of the other side without addiction and with a life lesson learnt.
  20. Welcome to the forum and thanks for sharing your story. Sounds like you are doing everything right already, so hopefully you start to see some improvements over time. Please keep us up to date on your journey.
  21. I find junk food makes me more anxious and just uncomfortable in my own skin. Usually carb heavy. I also feel fresher and more energetic since going on a plant based diet. I think dairy especially causes some issues. Always worth experimenting with your diet.
  22. 5htp helped my mood a little, but did nothing for HPPD itself (negative or positive). You can take benzos with HPPD, sure.. I couldn't cope without them. Just be aware of the addiction risk.
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