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Posted

Just saw this on the news....

http://news.sky.com/...rticle/16135715

It is nothing short of a miracle for her.... But the interesting thing was that they mentioned the treatment is also being trialed for depression, epilepsy and anxiety. All areas that could be closely related to HPPD.

What really got me thinking was the fact that this treatment dampens down over activity in the targeted area of the brain. I'm sure they could use our off the scale qEEG results to locate the problem area and dampen it down (assuming it doesn't affect any other serious brain activity). It sounds like they can locate exact parts of the brain.

Of course, this will take many years to become common place, and will be hard to trial for anything other than the big illnesses.... But well worth keeping an eye on (and well worth watching the video anyway, amazing).

Hopefully David sees this and can fill in the gaps.

Posted

For years they have done this for very advanced Parkinson's Disease. Didn't know it was being used otherwise.

Tourette’s is also a dopamine disorder but usually treated opposite of PD by reducing dopamine (haloperidol, pimozide, aripiprazole, …) just like treating schizophrenia. And with the same unfortunate side effects of low dopamine: tardive dyskinesia, parkinsonism, dystonia, dyskinesia, akathisia, depression, cognitive blunting, anhedonia, … Newer generation anti-psychotics tend to reduce these side effects.

It’s a terrible disease when severe. Don’t know how brain implants would effect HPPD – interesting idea. Given the general fear of medications among the community, it is hard to imagine anyone volunteering for this kind of surgery.

Thanks for the article

As a side note, here is a fun one: "Effective treatment of Tourette's syndrome with marijuana" - http://jop.sagepub.c...t/7/4/389.short

If you get a chance, read An Anthropologist On Mars by Oliver Sacks. In particular, A Surgeon’s Life. Yes, it is about a doctor with Tourette’s who is an excellent surgeon and also flies small airplanes. It just goes to show that many with brain disorders can live productive, happy lives.

Posted

Given the general fear of medications among the community, it is hard to imagine anyone volunteering for this kind of surgery.

I'll give it a go :D

Posted

haha, i live in portugal,,, they eat that stuff for breakfast, followed by a nice pig's ear

Posted

good luck, i wouldn't hold my breath on anything like this, there would have to be an approved medical treatment to follow in order to help with hppd and considering how long it takes just to get to the bigger brain disorders, one such as this that is rather obscure would takes years upon years if it ever found a proper treatment, just finding a doctor that would do it, I can't imagine the amount of we won't be held liable type paperwork you would have to fill out in order to get an approval. Something else will probably come along before this ever does.

Posted

There's a doc in Dallas who is implanting the stimulator in the brain. dr.Mckinney i think hes a nuro eye dr. and theres a post from he's patient on another site. I asked him to post here but i think it was when the site was down. he said it cured his hppd and was done to treat this problem. Very invasive it's brain surgery and you have a stimulator left in the brain. If you want to find out more he's a really nice guy i called him and talked for awhile. He posted on i think the mushroom site if you cant find it let me know ill find the exact spot.

I think the new treatment should be stem cells.....look it up it's amazing stuff!

  • 8 months later...
Posted

If they can work out the anxiety treatment, with this system.... I think alot of our problems would be over. The visuals might stay (they might be helped though).... But I can handle visuals far more than anxiety

Posted

mike - my neuro also lets me use opiates as part of my treatment.

Occasional Klonopin

Occasional Phenobarbital

Occasional Suboxone

All highly addictive, but when managed well, it is pretty good relief. Just need to be very, very strong willed.

Posted

The guy himself said deep brain stimulation was risky, but as a last resort it is an option. He said he was completely cured, but still he did not recommend it for others. As for opiates, I know they work but naloxone, which is in suboxone, was used for dp dr, they do the opposite of opiates but help as well. Hppd if more doctors looked at it could probably figured this out. I think I'll stay away though since my buddy is withdrawing from methadone right now.

  • 2 weeks later...
Posted

I'm currently on Methadone at 75mg/day and I feel much better on it. My visuals stay reduced almost all day and into the next until I get dosed again the next morning. It also helps the dissociation A LOT. This is the biggest relief I get from it. For now this is my temporary "semi-cure" for myself. It will work until something better comes along.

Posted

My buddy just got out of a methadone clinic himself, kid was eating perks like candy since he was 11 ironically he did a lot of acid and has had flashbacks but never hppd. Maybe the perks had something to do with it,

Posted

I think that it is hard to get rid of the dr/dp/anxiety/depression AND get rid of the visuals. It's like you get a deep cut and have it sewed-up, and it being impossible having it heal AND not itch/hurt/feel uncomfortable, at the same time.

When the brain and the body are faced with extraordinary circumstances, there are modes that they "go into" that help protect the body and brain from further damage. There are states such as coma, hibernation, shock, etc. that are reflective of these ideas. Did you know that frogs are generally found frozen in lakes and ponds during the winter months up north, only to thaw-out in the spring and come back to life. Now while we, as humans, are not cold-blooded

(at least so beyond any moral judgement), it is largely accepted that the human race can be directly linked, evolutionarily, to "sea creatures", and eventually cold-blooded sea creatures.

It seems to me that the HP phenomenon is partially related to oxidation of the CNS.

Posted

Definitely dp dr is a defense mechanism, be it sick and twisted, although the drug induced ones I think are related to the brain readjusting itself. Hell today I felt straight up high for 2 hours, a good one I may add, but I'm confident that my brain is sorting shit out. As I said everyday I'm getting better, why, no anxiety, no drugs (ie k pin) and healthy living. My point is that maybe hppd isn't a disease in the sense of the word, but a process in the body gone awry that either sorts out or doesn't. I think that's why you and me remiss. And why hppd doesnt respond to medicine or tests. I mean the drugs are out of our bodies but the natural chemicals need to adjust and IMO klono pin ssri etc only fuck the body up more.

Posted

I agree but like any drug the wd will probably set you back even more dopamine

Again this is an issue of how much. Moderate stimulation (low doses) can cause synaptic growth (plasticity) and improve the situation (or at least alter it, lol)

It is a catch-22. Always the best if we can just plain get well.

I find opiates beneficial across the board (the few I've tried), but remain cautious about using them.

Posted

Just dropped a suboxone for the 1st time in a month.... ahhh, i love opiates. If i could feel like this all the time, i'd consider it a cure.. feel like i could do anything, but not in a fake way, like cocaine.

i'm glad of these small treats every now and again

Posted

Just dropped a suboxone for the 1st time in a month.... ahhh, i love opiates. If i could feel like this all the time, i'd consider it a cure.. feel like i could do anything, but not in a fake way, like cocaine.

i'm glad of these small treats every now and again

Indeed friend. It took my awhile to figure this out but I eventually came around. I'm glad I found methadone maintenancec therapy though or I'd probably still be copping dope on the street.

  • 2 weeks later...
Posted

This is interesting I read somewhere a man had something implanted or done to his brain during an operation for his hppd which effectively cured him whilst I was researching this condition it was a Swiss surgeon I think I know it was done in Europe somewhere but didnt pay any attention to it as I didn't see it as a viable cure as brain surgery for one seems very risky and scary plus the money it would cost and the difficulty in finding someone who would do this operation on the nhs for you wouldn't happen it mentioned in the article about how what he did had lowered the electrical activity I can't really remember

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