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Posted

Strange seeing all these posts about how sinement is helping some hppd? I tried l-dopa a few years ago, just on a hunch, and it temp made my hppd symptoms worse. It's the same thing as that med too, just increases dopamine. I also felt mentally wacky.

I don't think I have the same disorder as half the people on here anymore.

Posted

You took a nutritional supplement, not a medication which is much stronger. Also, without carbidopa, most people can’t stand levodopa.

I’ve tried another nutritional supplement L-Tyrosine (an amino acid precursor to levodopa). At low amounts it seemed slightly good on mood. At the recommended amount it causes anxiety.

This doesn’t mean that Sinemet will actually help you – you don’t know unless actually trying it. It will also depend on your symptoms.

Do you have problems with contrast or motion or blurry vision or halos?

Posted

Idk if I'd try it again, I am curious, but from that experience with l-dopa, i'm pretty hesitant.

I tried l-tyrosine once also and had the same effect, but no significant effect on hppd. (i've tried a lot of different stuff for hppd, hehe)....

But anyways, I have most traditional hppd, movement, especially peripheral, halos, afterimages, static, patterns.

Posted

Without wanting to sound negative.... I think 3 of the 4 people who have had a good response are also on Klonopin.... maybe they work well together?

Posted

Gill,

It is actually good that you brought this up. And it is harder to learn without feedback from each other.

Probably plenty of people have tried these things as well.

Jay,

They probably do work together. For me, Sinemet works without Klonopin (Started Sinemet 3 years ago. Klonopin 2 years ago and sometimes off). Have wondered about Keppra and Sinemet being good 'partners' as well. Will be retrying Keppra in a couple weeks (but again with Sinemet) as this seemed to help DR. Sometimes you almost have to laugh at this stuff ... but it is a good laugh.

BTW, laughter is one of the best medicines for the brain (for real)!

Posted

It does come down to personal etiology though, something may help some and do nothing for someone else or even make worse. But by the sounds of it Sinemet is hitting SOME of the right spots that need to be looked at. Finding a drug that has helped a few people already is very good, not just the fact that it is helping people but finding a drug that can help can show researchers where we need to be looking in regards to the neurology, other drugs that might even be more appropriate may be found.

  • 2 weeks later...
Posted

Sinemet has some interesting things associated with it. I would like it to be studied in relation to HPPD, to see how it is related to DP/dr especially, as that is what it seems to help the most. Although the success already with Sinemet is great. It will at least lead to medical research if it proves to help many people out. I just want that research, and I hope the medical side of this community looks into this seemingly promising lead.

Posted

It is good to proceed cautiously with meds as many of us have experienced some negative effects from things. For example, eight days of Effexor made me sick for 2 months (yet there are a few who like this med).

Unfortunately the research we hope for may never come to anything. Right now we only know of a couple people researching dopamine and HPPD (please correct this if different). Fortunately, Sinemet is one of the safer meds to try. So far the reported response has been either it is helpful or does nothing - haven't seen people getting bad sick from trying it.

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