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Jay1

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Everything posted by Jay1

  1. You can't neglect something you don't know about. Make a post about it and just speak to people in a respectful manner, it's very simple. Just understand there are about 30-50 active users on here, so don't expect the world to change.
  2. Yea, so sorry... Your way is working amazingly... I bet you've helped sign up £100,000s in research grants using the patented cunt approach.
  3. You seem to be someone who can't listen/read. Only hope is not a solution, sure... people on here do way more than that though.. and you know this... You are just pissed because your own "hope", the australian research, didn't hit it's targets. Chill the fuck out, learn to communicate properly and you will go so much further getting support.
  4. Good luck mate, hope it works out ok... I think that 3-4 day break does help a lot, though obviously full symptoms come back during that time... Just the knowledge of having some comfort 3-4 days a week is a godsend to me though.
  5. Siren, if you keep downvoting people's comments because you don't agree with them, i'll put you on a time out... I'm getting complaints left and right about your attitude. I don't like having to moderate this board... but tone your shit right down.
  6. I'm sure that seemed funny in your head. High five for trying though. As someone else said, maybe reddit is more you kind of place. Angry and bitter seems a good match for /hppd
  7. If that's what you got from my post, you're an idiot.
  8. You shouldn't speak for everyone. I have had a few positives from severe HPPD, namely it stopped me taking drugs when other friends moved on to heroin, they are dead, went to prison or living miserable lives now. Not many got out to a place of contentment. I also feel like I am more empathetic and in touch with nature and my surroundings. Probably more creative too, as I use creativity as a way to escape. HPPD is fucking shit, no doubt... but you can still have a positive mindset that benefits you. Don't let HPPD drown you.
  9. Have you spoken to your doc about upping the Valium then doing proper tritation?
  10. I guess we are gonna have to keep buying lottery tickets! As sad and horrible as this sounds... We are probably now reliant on the inevitable law suits when HPPD explodes with the rise of legalised MDMA/Mushroom/LSD treatment, sooner or later someone rich and powerful will get fucked over by the treatment and some shit might actually start to happen.
  11. Why not post links to them, their previous research, their current funding attempts etc?
  12. I have sent various bulk emails for an Australian research group... I assume it is the one you mentioned... My memory is terrible. Anyone is welcome to PM me about sending bulk mails. You seem to be of the assumption that our mailing list is 100% active, it's not even close.. Anecdotally, I would say that it reaches fewer than 1-5% of the list numbers.
  13. That sure sounds like hope to me
  14. btw Siren... why do i get a feeling you are the same person who's been harassing me on Reddit!? If it is, as I said on there... I'm glad people like you are pushing the medical/research side... But there are many ways to help... Your way isn't the only "right way". It's almost funny that I now get personally called out and attacked for being "in charge".
  15. My general goal is to do what I can to help new people who visit here and try my best to stop very concerned people from killing themselves (dozens upon dozens in my years here, via PM). That's what I'M, doing with it... and hope plays a huge part in that and there is valid reason for people to be hopeful, especially new visitors who often recover. Btw - I'm not in charge of shit... I just help keep it running and help remove spammers.
  16. Rather than coming on this post pissing on everyone's chips... Why not make a post about all the amazing things you are obviously doing to help the cause, maybe you'll inspire people into action.
  17. 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.
  18. 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
  19. I find my visuals get worse, but my dpdr gets slightly better (with a common cold, at least).
  20. 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.
  21. 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?
  22. I think the anxiety does, for sure... I'm even less social since Covid too.
  23. 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!
  24. 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
  25. 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.
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