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    • By onelovez
      Hi
       
       
       
      Few days ago I tried Mucuna Pruriens, 400 mg pills 1 a day for 3 days. Day second and third I was getting more spaced out, didnt really absorb what I was reading or listening. Haven't noticed any benefits. Visual reaction time acutally decreased little bit. After images might had been longer too (they still are I think) After day 3 I stopped it because I felt its going in a bad direction. Had 5 days while being off it and I felt terrible.. something like when I took mushrooms around year ago and it made my HPPD skyrocket. Since the next day and every day after I knew I am in big trobule. Now I feel sliightly similar ( you just know when the "HPPD hangover" after taking something doesnt go away for few days, that its there to stay for longer)..
       
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      Could that be the case with sinemet???
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    • By andrewg
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    • By David S. Kozin
      Dear Community,
      The initial results are public.
      Dr. Abraham presented the report at the Annual Meeting of the Biological Psychiatry Society earlier this year. I have included a copy of the Abstract in this post and providing a link to Dr. Abraham's additional discussion and graphs at the bottom. My emphasis added, but to restate Dr. Abraham's website: "This study is NOT the gold standard of proof that this approach works. . .These medications are not approved for use in HPPD. Any interest in them should be discussed with your physician."
      I know we have discussed COMT, genetic variations and watched the board's discussion move from the serotonin system to the dopaminergic system having originally focused on the GABAergic system. These are not systems locked in single compartments, single receptors and single cell types, but have complex interactions and as you are aware we are just touching the surface of Neural Science and Behavior/Perception. However, the basic discussion was on target: Dr. Abraham hypothesized that inhibition of COMT would reduce symptoms in HPPD. Consequently, COMT inhibitors were tolcapone and Sinemet
      Again, these are not approved for HPPD and should only be tried with a clinician. Here is the abstract from the conference:
      Catechol-O-Methyl Tranferase Inhibition Reduces Symptoms of Hallucinogen Persisting Perception Disorder
      Henry D. Abraham, Psychiatry, Tufts University, Boston, MA
      Background: Hallucinogen persisting perception disorder (HPPD) is a poorly understood disorder arising from the use of hallucinogens. It is characterized by continuous visual disturbances which can be lifelong. There is no known treatment. Studies of HPPD patients with qEEG mapping show that the disorder is represented by disinhibition in the cerebral cortex. Inhibition of catechol-O-methyl transferase (COMT) increases inhibition of sensory input in humans carrying the G/G polymorphism. Accordingly, I hypothesized that inhibition of COMT would reduce symptoms in HPPD.
      Methods: A single-dose, open label trial of a tolcapone, carbidopa, and L-dopa was conducted in 17 consecutive HPPD subjects. Visual symptoms in each subject were coded on a 0 to 7 Likert scale before, and two hours after, drug administration. A paired Student t-test was used to determine statistical significance.
      Results: The mean pre-drug visual symptom score for the entire sample was 4.7 +/- 2.6, compared to the post-drug score of 3.7 +/- 2.8 (P= .001). A post hoc median split of the percent response of each subject was 51% symptom reduction in the upper half of responders compared to 1% in the lower half, suggesting a bimodal sample.
      Conclusions: Inhibition of COMT is a novel approach in the treatment of HPPD. The bimodal treatment response is consistent with the action of a functional polymorphism in the COMT gene. Future directions include a double blind, placebo controlled trial of this treatment and a determination of COMT polymorphism in responders and non-responders. Keyword(s): HPPD, COMT, tolcapone, carbidopa, DOPA
      (Retrieved from Convention eBook downloaded from: http://www.sobp.org/...?pageid=345267; Kindle Locations 21096-21098. SOBP. Kindle Edition.)
      LINK TO Dr. Abraham's Web Page regarding this study: http://amrglobal.pow...atment-for-hppd
      Best wishes,
      - David Kozin
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Syntheso

Sinemet: 5-10% improvement

42 posts in this topic

Was considering posting this in another thread, but thought that the success story might get drowned out.

I know I posted elsewhere that I was going to opt for a med-free route, but the opportunity to try Sinemet came up so I thought I would do so and report.

Today is my fourth day taking Sinemet (25/100). Before starting I felt 80% back to normal, I now feel 85-90%. It has completely knocked out my lethargy.. the first days of my HPPD life I have not felt like I need to sleep at some point in the day, and I have been able to get out of bed in the morning, something I have really struggled with. Concentration is much better too, and general cognition and ability feels better. Nothing to notice on the visuals yet. As a side note; first dose made me feel very strange... a kind of nausea in the head; quite a horrible feeling (which was not good considering I was driving, but it was manageable, nonetheless). There was this great feeling though where it suddenly all just quickly went, like loads of pressure building up and releasing (dopamine hitting the brain?)

Also, to further what we already know about the success of GABAergics in HPPD + relative success of Sinemet... as a one off occasion for what was to be a demanding evening of running a large event, I took 1mg etizolam in the evening before (having taken Sinemet for two days). I felt at 99% in that situation with the 1% being the visuals, or at least my relationship to them. I felt great, confident, I could have good long discussions, no anxiety, quicker witted.. compared to, in the last few months, running similar events and having tried 1mg and on a separate occasion 2mg of Etizolam alone, where I just felt a bit better and more comfortable (no anxiety), but not with the conversational and cognitive abilities that the Sinemet contributed (GABAergics alone do give me cognitive benefits though). Put simply: the best I have ever felt in my HPPD life.
It is a shame I didn't try something cognitively demanding like reading or practicing an instrument. Though, running large events is a cognitively demanding, and normally something I don't feel quite comfortable with.

It's still early days, I plan to take it for a while longer to see if I get any improvements. Any Sinemet success-storier's.. let me know how long it took you to reach the full efficacy. My reading suggests this should be around a week.

Well wishes,
S

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Fantastic, I'm very happy for you :) Looking forward to getting the chance myself, soon! Do you dose once daily @ 25mg/100mg ? 

By the way you describe it, it sounds like it could make a dramatic difference. I mean, there is a huge difference between feeling "not too out of it" and "essentially normal" :)

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Glad to hear this syntheso!

May I ask, was it only today that you started seeing benefits? I have some Mucuna Pruriens extract which I only tried once.. Perhaps worth a longer try.
Do keep us posted :)

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Fantastic, I'm very happy for you :) Looking forward to getting the chance myself, soon! Do you dose once daily @ 25mg/100mg ? 

By the way you describe it, it sounds like it could make a dramatic difference. I mean, there is a huge difference between feeling "not too out of it" and "essentially normal" :)

:D  

Yes, I do dose @ 25/100 once daily.

You are right - that's exactly the difference. I honestly cannot believe that I do not feel any fatigue in me right now and haven't done for the last few days. Psychologically, my mind is saying, "uh, don't you wanna sleep.. probably about time you slept, right"? I really don't want/need to, at all. I do not have any recollection of my life with HPPD where this is the case - without having to force myself up or to stay awake.

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Glad to hear this syntheso!

May I ask, was it only today that you started seeing benefits? I have some Mucuna Pruriens extract which I only tried once.. Perhaps worth a longer try.

Do keep us posted :)

I actually noticed it after the 'head nausea' had gone on the first day. In the evening I went to the philosophy reading group in the space that I run and was able to communicate and understand better than usual (still not that good though), I also felt anxiolysis.

MP was my suggestion that Sinemet would be good for me. I took it for a few days and it really helped. I needed over 5g (full spectrum). Sometimes, it didn't really seem to help, though. This was possibly on days where I hadn't dosed the day or so before though, not too sure. I remember being able to concentrate for 5 hours (never happened before) on 6g. In those hours I did the same amount of work I would have done in 2-4 weeks. Not an exaggeration.

I slept much much better on MP, and didn't wake up feeling groggy, but really cleared headed.

 

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Oh yes - please note. 5-10% improvement might not sound that fantastic, but given how much I have already recovered, I actually think that is, and that there is much larger implications for people who are less recovered than me. I suggest...

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I took it it for a week working up to 3x a day before I noticed any improvements (which were visual). And that was after adding some clonazepam on top.

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Thanks syntheso. You wouldn't happen to know how much total or percent L-DOPA was in that full-spectrum? I used this one, 2 caps, totalling 120mg L-DOPA, because I figured that would be close to the doses people were seeing benefits with.

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I took it it for a week working up to 3x a day before I noticed any improvements (which were visual). And that was after adding some clonazepam on top.

 

Would love to see some visual improvements. After how long did you start upping your dose? A few days?

How can you be sure the visual improvements weren't from Clonazepam?

 

Thanks syntheso. You wouldn't happen to know how much total or percent L-DOPA was in that full-spectrum? I used this one, 2 caps, totalling 120mg L-DOPA, because I figured that would be close to the doses people were seeing benefits with.

I'm not sure about %, I took the Swanson Full Spectrum.

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Did your "love-light keep burning all night long"? Haha, sorry. Thanks for the link; I guess I'll just try double dosing then.

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Would love to see some visual improvements. After how long did you start upping your dose? A few days?

How can you be sure the visual improvements weren't from Clonazepam?

 

If I remember correctly I went up to 2x a day after three days and then 3x after five days. I had previously taken clonazepam daily for about a year and since then on a PRN basis with no real visual improvements to speak of; it was only after the sinemet.

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Did your "love-light keep burning all night long"? Haha, sorry. Thanks for the link; I guess I'll just try double dosing then.

 

I've had no complaints ;)

 

If I remember correctly I went up to 2x a day after three days and then 3x after five days. I had previously taken clonazepam daily for about a year and since then on a PRN basis with no real visual improvements to speak of; it was only after the sinemet.

 

Okay, cheers Chris. Were the improvements permanent (IIRC you stopped)?

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Okay, cheers Chris. Were the improvements permanent (IIRC you stopped)?

 

I did stop and unfortunately the improvements were not permanent.

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May I asked why you stopped, then? Intolerable side-effects?

 

It was just a trial- I may go back to it.

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Any Sinemet success-storier's.. let me know how long it took you to reach the full efficacy. My reading suggests this should be around a week.

 

Glad you tried it.  The many things you describe are what I experience.  Perhaps the COMT polymophism?  [ Just sent in a test packet ].

 

Unlike other dopamine increasing meds (Wellbutrin, Requip, Selegiline,...), the effect isn't connected to the meds half-life.  Its more of a battery-charger.  As for full efficacy, it is hard to say.  In general lots of improvement right away, yet there is a positive trickle that is more in terms of months or years.

 

When you finish testing Sinemet, you might enjoy trying this one http://hppdonline.com/index.php?/topic/3589-quinine-sulfate/

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Look forward to hearing your results so we can compare, Visual.


I am up to 3 x 25/100 pills a day.

There is definitely an improvement in my visuals, only in the dark though. There is now only quite gentle visual snow and very faint strobing.

Still no fatigue. I feel very calm, a wonderful sense of calm, collected. Concentration is much better- practiced saxophone for around an hour today without having to fidget.

I think I am going to stay on Sinemet till the end of May, as it is the last two months of my degree. I have a lot of lost time to make up for.


 

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You may be able to back off a little.  Try working with 1/2 pill doses.  See if your battery is charging

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Visual> did i read what i think i did? Are you testing yourself with the polymorphism? If so, how did you and how can I? I would gladly pay for it.

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You may be able to back off a little.  Try working with 1/2 pill doses.  See if your battery is charging

Yeah, I probably am getting a bit excited.

 

Visual> did i read what i think i did? Are you testing yourself with the polymorphism? If so, how did you and how can I? I would gladly pay for it.

You can get it done on 23andMe.

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Visual> did i read what i think i did? Are you testing yourself with the polymorphism? If so, how did you and how can I? I would gladly pay for it.

 

Yes, Syntheso put me onto it.  Funny, it is not legal in New York to spit in a tube and mail it unless you are a doctor ... so drove to another state and did it there - rediculous.  It cost $99 plus shipping.  Then you need another service to get health info since FDA won't let the testers do it.  So for $5 you can use a service such as https://promethease.com/ondemandagreed

 

Aparently they read hundreds of thousands of bits of info from the DNA strands - amazing for a few $s.  Then the service lists thousands of things currently known.

 

Giving it a try anyway.  Had asked GP about getting COMT testing done and was referred to a specialist.  If I pursued it, the copays would be more than using one of these services.  Plus insurance companies rarely pay for genetic testing.

 

 

Yeah, I probably am getting a bit excited.

 

I hate to see a person push it and then get side effects that outweigh the benefits.

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Are you still on Sinemet, Visual? Have you experienced any side effects?

My understanding is that Sinemet would only really feel noticeable to someone with low DA levels i.e someone with normal DA levels could take Sinemet and not feel an effect. Is this what you mean by battery charging, if you're full of charge, you don't feel the effects? 

Also, do you split your dose throughout the day? I get the impression that it wouldn't be so important for Sinemet.

Lastly, from your reading. Does mid-long term Sinemet use have implications for the future, will your body get used to the exogenous source of DA and become dependent on it?

I am having second thoughts about using Sinemet for more than a short period. Some stuff I have read worries me. 

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I've been taking it over 5 years now.  Every few months I do a washout period with meds (which are mainly Sinemet and Gabapentin).  Am 3 weeks into a washout but sometimes take 1/2 Sinemet (twice a week).  Typically this start with not feeling right with any dose.  When that happens I stop all meds cold turkey and ironically feel better the next day when there should be withdrawal issues.  This is probably not typical - but then HPPD stuff often isn't.

 

It is less a matter of side effects than of effects.  Seems that various symptoms have a dose that is optimal for them.  So 1 pill a day brightens otherwise 'darkish' vision but 3 pills a day make thing too bright.  Depression does pretty good with 1/2 pill a day.  The whole motion latency thing did best with higher amounts but any amount makes improvement over the course of months.  So it is kind of tedious to get a balance.  A key to work toward is finding minimum useful doses.  Anxiety responds to a little but then not as well with a lot.

 

If you think about it, you are already experiencing some 'battery' effect.  With a half-life of ~50 minutes, taking 1 pill a day or even 3 would normally feel like a yo-yo.  I find that some positive effects will last for a week or two.  Another aspect is that it can take a couple days to feel significant effects, yet other times it take 15 minutes.

 

For me, splitting the dose works the best.  It is rare I ever take a whole pill.  If 1/2 doesn't quite make things right within an hour, then I'll take another.  (BTW, this technique is useful for managing other meds such as opiod pain meds or benzos - it helps you find the lowest needed dose and thus reduce tolerance developments).

 

The parts of your body that are starved for dopamine (or whatever) will welcome it.  The parts that don't need it will downregulate its effect.  Since our brains are not homoginous, there never is an ideal amount.

 

The key with Sinemet remaining useful is finding minimal doses.  As an example, some docs prescribe it for RLS and after a year or two it is no longer effective - probably not the med to have used.  There are cases of people taking it for decades without it loosing effectiveness and the progression of PD was almost arrested.

 

So it makes sense to try it for short times, then stop.  Take notes and try it again.  Develop a feel for it.  People with PD do this so dosing is as much PRN as on a schedule.  While I am probably an anomally, this seems to help educate/rehabilitate the brain.

 

While it has only been a short time, try taking 1/2 pill 3 times instead of 1 pill 3 times and see what changes.  It seems aparent that some people need lots (including tolcapone) whereas others only need a little.

 

Later I'll PM you on another strange thing I do that has reduced the dosages of med.

 

Otherwise, don't worry.  You've already learned lots of things about it that are hard to explain otherwise.  5%-10% sounds like nothing yet there is something about it that is profoundly helpful and can't be numbered.

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Great stuff, Visual! Exactly the kind of information I've been looking for (my current plan is to try Keppra and Sinemet, separately. Looks like it's going to happen.)

Later I'll PM you on another strange thing I do that has reduced the dosages of med.

If it's something that you're willing to share publicly, I'd be interested :P

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