Jay1

If the rash doesn't comeback, I will give it a long time shot (have 6 months worth to take back to the UK). The rash can be deadly though, so have to tread carefully. Clonazepam, I only take small, occasional amounts (1mg.. friday, saturday, sunday)... So can carry that on for the rest of my life, so the neuro says. I often have 1-2 weeks off from it to make sure I don't show any signs of withdrawal/addiction. Seems fine... Thanks, Jay

Just back from my nuerologist and he has green lighted another attempt at Lamictal treatment, the only drug other than clonazepam to show any improvements in dp/dr and overall mood. Last time, a rash forced me to quit. I'll keep a track of things here.

Well, surely it is our own self interest that expects doctors to look into our condition instead of something else?

i'm off to see my neuro on tuesday and will ask about retrying lamictal.... other than klonopin, it is the only thing that had any impact (i stopped due to getting a rash). It reduced dp/dr by 20 or 30%

I imagine all of us have gone through this. I think the best way to look at it is that your pre disposition to HPPD might, one day, turn out to be a massive positive... Imagine that you get better over the next few months. You will have had your warning and will hopefully heed it, grab your new found health and happiness and run with it. Your friend might spiral down. Alot of my drug friends that seemed to be untouchable were far from it. Everyone got burnt in one way or another... Some became junkies, some ended up in prison, some developed other mental illnesses, 2 are dead now. Even after 20 years, I still look on HPPD as a partial blessing, those that became junkies suffered worse... and I was well on that path. Good luck, Jay

hahahaha

For a very long time I used my visuals as the benchmark to how bad my condition was. It is the first thing you notice when you wake up, so hard not to fixate. Now I use my overall mindset as the benchmark though... Visuals might be on a spike, but if my mindset is pretty good, I don't get into a big panic anymore.

Not sure I want to see the section of the film "HPPD and masturbation"

A festival would be a great setting.

I'm all for it. I have 2 broadcast quality cameras, just need sound and lighting.... and people to interview. I might finally have a go at shooting a little video about my story, this weekend.

hahahaha

If you want all those things, then it is better for us all to be on the same page when describing what HPPD actually is. Ever thought of that?

When I describe it to my wife, I use the term mental illness too, as that is how I feel... That my mind is ill/sick/poisoned. This carries on from what I was saying about HPPD as a singular condition is probably wrong, HPPD is only the visual neurological condition, not any mental illness/disorder we might associate with it. I think LSD caused my hppd and MDMA caused something far darker, that I always lumped into one condition (before I knew what hppd was).

We are discussing serious concerns about putting our face and name to videos and THAT is your response?

There are sometimes completely unexpected uses for a medication developed for X that end up helping Y This caught my attention, earlier in the week: http://www.bbc.co.uk/news/health-32151801 Obviously this shows the fucked up world of big medication companies... But also shows that someone on here could go in for treatment on a completely unrelated condition and discover their medication helps HPPD.

I'm not even sure I believe in hppd as an individual condition anyway. I've always maintained that it is a collection of mental disorders that feed off each other. Fix the anxiety and the visuals will be less of a concern, fix the visuals and the anxiety will lessen. Just my view, but gives me more hope as anxiety treatment is BIG business. Also, HPPD as a singular disorder is further complicated by the multi drug aspect. We could spend a $million on research into HPPD caused by LSD, only to find the results have zero meaning for any poly users who took LSD and mdma in their drug life. Anyway, there are always fresh angles to explore. My life is quite alot better for finding Clonazepam after 12 or so years without any relief. If they can come up with something similar, without the addiction... I'd be fairly content with that. Yes, it is a band aid, but who cares.

There is always hope. Even if we piggy back on the visual snow ride, or some epilepsy/anxiety breakthrough (where $billions are invested). Then there is technology like nanotech to consider. Even just seeing the contact at the LSD test giving us some time feels like a minor breakthrough. We all wait for the elusive post on here "I'm cured!". I still don't think it is the impossible dream. As for organising and getting things done, it would be a damn sight easier if we didn't have hppd! Perhaps this woman writing the book could be a good spokesperson, as she is not bogged down with the illness.

Did they say where they are based? I know Nutt is in the UK, so maybe the whole thing is? If that is the case, I would happily talk to them about the condition and even go through any tests.

Yea, anonymity is an idea I have juggled with too, I do alot of work with big brands and would lose work if my condition was known about, for sure. It's a tough one, as I also feel the need to have a name and face attached helps, which is why I have always had my avatar on here. As you say, stories sell... and people connect well to facial expression. I think a few anonymous interviews would be fine though and would even highlight the stigma of the condition.

I'm still keen to do a documentary ... I have the tools and know how, just need help to get people on camera.... sufferers, doctors, current drug takers etc I'm UK based.

Seems we have 1800 or so registered users and alot more visits from non registered "lurkers"

Great work OldSchoolAr, I will try to find some stats on our numbers for the forum.

There will always be a queue of trippers ready to take LSD in this sort of test environment. I would have been first in too, 20 years ago, as I firmly believed LSD was the answers to the world's problems (as stupid as it sounds... part of me still hangs onto that ideal). these drugs are powerful, profound and really should be explored more for medicinal use. I have heard of a guy with cluster headaches (awful condition) being cured by magic mushrooms. He was very close to suicide.

David Nutt is very much pro "lsd as a medicine" and is unlikely to highlight potential issues like HPPD. He is an interesting person and I respect some of his views, but he is too pro-LSD to help our cause. The best hope for us is that the experiment highlights some areas of the brain that we have yet to think of in our search for an answer.

the only time I have suffered these sort of shocks is when coming off Keppra too quickly, so this may be related to your anti-convulsant