Medication Trial: Dr. Abraham

[Merkan]

Since he is so young and his brain is evolving for another 15 years, things might just turn out fine. Even if he still have the symptoms from now on this might become his "normal" state of perception. He'll still have the symptoms but since he never known any other perceptual setting it might not be a problem to him. As long as no cognitive issues or any psychiatric problems manifest, he could turn out just fine with or without these symptoms.

I know I never thought I would pass this on to my child. It's one thing to know you did the drugs and this is the punishment but a complete other for someone who's done nothing. What will his life hold. It's really hard when I can't offer help and I know that it can make life very hellish.

[EmIly]

Thank you for the positive thoughts! I hope your right and I will always hope for the best. He is very bright and has an old soul he's able to cut to the core of things like no one ever known. The only other issues besides the perceptual have been anxiety not true panic attacks but very anxious he's not able to sleep in the dark for obvious reasons and at times seems sluggish. That's about it. I don't talk with him about it because I don't want to draw attention to it so I'll only talk with him when he comes to me.

[VisualDude]

While it is common for parents to blame themselves (the 'guilt' of 'bad genes'), remember what he does have. Being "very bright" and "able to cut to the core" is great. While having anxiety and weird visual stuff is a concern, it isn't the end of a wonderful life. In retrospect, nuclear accidents, war, disease, pollution, economic meltdown with starvation, etc... -- these may be more likely threats to one's future (and there is little one can do about them).

Just being cautious about environmental stressors (drugs, food quality, air quality, emotional extremes, ...) are what you can do. Nurture his positives and help him develop work-arounds for any negatives. Let him know that his normal is ok, that everyone is unique, and he can have a fun, productive life. (And yea, no drugs).

Has he had any genetic or neurocognitive testing? These can be useful guides and the tests are not particularly stressful.

[EmIly]

He has not the only tests have been an eye exam. I thought his eye doc. Might have some good tricks for helping him read that's his biggest complant. Of course the doc. Said I think this is just migrane. I explained this is constant it does not come right before a headache although he does get migranes every now and then. I have not tried anything else yet I don't want to try any meds yet until he is older and can make that choice for himself.

I have let him know he is not alone and that it is genetic. I think he always thought he was a little phycic and just could see ghost and strange stuff in the dark. I let him keep lights on at night and his tv for the noise to help him. This adds to his sluggishness in the mornings but I think it's worth his comfort.

I truly don't get why his visuals would be worse then mine. Isn't that strange? He's eyes are more dilated then mine as well. That's why I kinda wonder if he's dad is not a carrier to. I know he has OCD. I questioned him about visuals and he said he does not have any visual problems.

Anyway thank you for all the support! I feel like you guys are my family and will be he's when he starts looking for answers.

[must-be-a-way-to-heal]

hey thanks for that David and everyone,,,

Does it cost money to participate in medication trial ?

[Merkan]

So, any news about the big research?

[onedayillsailagain]

So, any news about the big research?

http://hppdonline.com/index.php?/topic/1346-released-initial-results-of-comt-inhibition-study-conducted-by-dr-abraham/

 

I believe that's the research referred to here, no?

[Merkan]

No, thats just the initial.

[onedayillsailagain]

No, thats just the initial.

Ohh.. Well in that case I suppose you could contact him personally. I think I remember reading somewhere that he's still providing it as an option or something.. foggy mind

Honestly with these initial results released, I don't see why anyone would bother continuing research into Tolcapone+Sinemet, as it is highly unsustainable. The initial results were very helpful, providing us with insights to the pathogenesis of HPPD, but largely stops there. Basically it has confirmed that enhancing PFC DA signalling mitigates sensory gating deficits we think are involved in HPPD. With great thanks to Dr A., we can now continue to apply this model in more sustainable treatments.

Personally I believe the more promising research would lie in NIBS, and would love to see a study conducted with HD-tDCS. Ah well, beggars can't be choosers, right?

[Ghormeh Sabzi]

From what I understand, what Dr Abraham has released on his website is all there is for the time being.

[shaolinbomber]

Ohh.. Well in that case I suppose you could contact him personally. I think I remember reading somewhere that he's still providing it as an option or something.. foggy mind

Honestly with these initial results released, I don't see why anyone would bother continuing research into Tolcapone+Sinemet, as it is highly unsustainable. The initial results were very helpful, providing us with insights to the pathogenesis of HPPD, but largely stops there. Basically it has confirmed that enhancing PFC DA signalling mitigates sensory gating deficits we think are involved in HPPD. With great thanks to Dr A., we can now continue to apply this model in more sustainable treatments.

Personally I believe the more promising research would lie in NIBS, and would love to see a study conducted with HD-tDCS. Ah well, beggars can't be choosers, right?

I never got anything from just the Sinemet alone and I want to try the Tolcapone just once with the Sinemet to see if it alleviates anything for me. If I were to get instantaneous reduction in symptoms from that combo I would be convinced that the problem lies within the activation or lack thereof of the Dopaminergic part of the nerual networks that have been changed/damaged/altered/however you'd like to explain it.

 

but as for right now I remain skeptical for that as a for sure treatment for ALL HPPD sufferers.

[VisualDude]

Dr A's selection of medicine highly targeted (as best one can) the executive center, although levodopa is broader.  He didn't, for example, use cocaine or meth.  As to whether the 30% responders actually have COMT polymorphisms, or other genetic differences, remains unknown - - - until such testing is performed.

 

Because COMT inhibitors reduce liver function, then Tolcapone is an unlikely med to continue with.  Perhaps used for 'vacations from HPPD', as do some members with Klonopin.

 

 

I do agree that symptoms should change in a matter of hours.  Meds that take months to work have more complex, round-about methods.

 

Also, with dopamine enhancing meds (as with all meds), dosage make a difference.  One member said the Tolcapone trial resolved his symptoms, but low dose Sinemet does not.  To put dosing in perspective, people with advanced Parkinson's might take Sinemet 10 times a day and Tolcapone 3 times.  Whereas, Dr A's dose was 1 and 1 for a two hour trial.

[mbellamy09]

wow just read this thread after awhile and now its possible might be genetic? interesting indeed. anyway that could help with research? like only some issues in the brain are genetic but what makes them that way? this is all probably very dumb but its late and im really tired lol

[VisualDude]

Not dumb at all!  [ I blat a little about this in http://hppdonline.com/index.php?/topic/1981-continuiation-of-my-other-thread-about-heat-shock-proteins/ ]  Ultimately, when genetic factors are discovered, it can lead to help, both treatment and prevention.  As to "what makes them that way?", same reason some people had red hair, some people are tall, etc...

 

Read this quote: [ http://dana.org/news/features/detail.aspx?id=42642 , paragraph 9 ]

 

A pre-existing condition?

 

According to John Halpern and Harrison Pope of the Biological Psychiatry Laboratory at Harvard Medical School, writing in Drug and Alcohol Dependence, “there is probably something different in the visual cortex of these individuals that pre-dates use of an hallucinogen.” Abraham agrees, noting that his group “confirmed that there was a peak at around 10 trips, and then there was another peak at around 50 trips, and then sort of a flat plateau afterwards. This trimodal distribution is possibly explained by the distribution of an autosomal recessive gene governing sensitivity to the effects of hallucinogens.”

 

 

 

Also, side note to everyone, Please participate in this poll http://hppdonline.com/index.php?/topic/1986-flashbacks-continuous-or-intermittent/

[mbellamy09]

Who spams a forum with an antibiotic that I have taken like 50 times for bronchitis?

[Syntheso]

Until a bunch of HPPDers get gene testing done, we don't know about the connection with genes. What we do know is most people who use drugs do NOT get HPPD.

I have the A:A (met/met) polymorphism of this COMT SNP http://snpedia.com/index.php/Rs4680 

I have not tried Sinemet.

 

[VisualDude]

I have the A:A (met/met) polymorphism of this COMT SNP http://snpedia.com/index.php/Rs4680 

I have not tried Sinemet.

 

 

Wow, you got genetic testing done for this?

 

Great, you still might net a COMT inhibitor.  But if you get a chance, try Sinemet alone.

[Syntheso]

Wow, you got genetic testing done for this?

 

Great, you still might net a COMT inhibitor.  But if you get a chance, try Sinemet alone.

I got it done because I was generally interested to see what came up, and this did. From 23andMe if anyone is interested.

Sinemet is probably my next shot depending how my Keppra trial goes. I am convinced my HPPD is particularly dopaminergic. I respond very well to Modafinil.

[Michaeljak]

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