Jay 1 - Sinemet Trail

[Jay1]

I have been prescribed Sinemet and have started a 3 month trial as of today.

The dosage is 50/12.5mg x 4

I will keep you up to date on any progress, good or bad.

http://en.wikipedia....bidopa/levodopa

[Phenomenon]

Good luck. Will also try it soon to complement my Keppra.

[Merkan]

I hesitated to post about my Sinemet trial. But its up now and it changed my life to the better, WAAAY more then only Keppra. I take the same dose as you, twice daily. Right now i am on the retarded version. Not sure its the best one but it works. DP=gone.

[VisualDude]

Jay,

Would you please list your particular visual symptoms (can’t remember right now). Given the brain's use of dopamine in it’s visual systems, it would seem that you should see some changes here – most notably contrast and depth perception.

I've used Sinemet for 3 years now. Actually need less than originally. Am now looking at the other side of the fence at Keppra to see if it helps stuff that Sinemet isn't (kind of opposite of Merkan). And anti-seizures are generally called for with my particular brain injury.

It seems that the effective dose is smaller than how the med is even made so you have to cut pills in half. This is very good news, not just $$$, but it will keep potential side effects to a minimum. This is said so that any who do try it realize that they should not take 2 or 3 pills at a time - that would probably make you feel like crap (nausea, headache, and/or strange).

I think it is important to post about it so that people can discuss it with their doctor. As personal experiences get documented, this could help doctors in the future realize that there is something to it. A neurologist I saw 2 years ago was familiar with using it for brain injuries (though not DP, DR or HPPD specifically) - so it isn't out of line for a physician to try for a patient.

Wish success to you all ...

[Jay1]

Would you please list your particular visual symptoms

Classic, severe visual symptoms.

snow, sparkles, 10 second+ after images, constant blue/green geometrical shapes, warping, constant strobing 5 times per second, closed eye visuals, poor depth perception, tunnel vision

Thanks for the good wishes... i'll post again soon

[Merkan]

When it comes to depth perception it is kinda interesting, i can actually see the depth of a spot on my screen towards the webpage i am reading on right now. My English vocabulary ain't good enough to explain it better, maybe you understand. Levodopa/carbidopa is really something special.

I know that there are 50/12.5 pills available. I will ask my doc to prescribe me them next time. Wanna try the difference between retarted ones and the instant ones.

[ludwig80]

Good luck with this one Jay. Also, glad you guys are seeing some improvements. Dopamine issues seem like they play a HUGE role.

May try to get my hands Sinemet after riding Keppra out for a while.

[1998]

jay pls post how you're feeling again soon. I'm sick of klonopin ruling my life

[shaolinbomber]

This sounds like a huge development for us. Is this the type of drug that can be continued on daily for the treatment of HPPD?

And Jay, do please list what kind of effects it has had on your DP/DR (if you have those) and especially the visuals.

Thanks.

[shaolinbomber]

I hesitated to post about my Sinemet trial. But its up now and it changed my life to the better, WAAAY more then only Keppra. I take the same dose as you, twice daily. Right now i am on the retarded version. Not sure its the best one but it works. DP=gone.

How many different medications of this type are there?

Also when you say DP=gone. does it seem like reality is what it used to be according to your memory before HPPD? Like when you think back on times before you had HPPD where everything didn't seem so alien and out of place and nothing felt right. Does this medication reverse that?

[Jay1]

Is this the type of drug that can be continued on daily for the treatment of HPPD?

My neuro said I could stay on this low dose for life, if needed. No addiction, no tolerance, very little side effects.

I will post in a few days about any changes... to make sure their is no placebo effect or "anti-placebo" (I am so used to things not affecting me, that I think it could almost work the opposite of a placebo.. if that makes sense)

I have two stress tests in the next two days... today, I have language school, which brings about some anxiety and added dp/dr.... and Saturday I have a concert with my band... which is also a good test of anxiety (I usually drop 1mg of klono, but will try without)

[shaolinbomber]

My neuro said I could stay on this low dose for life, if needed. No addiction, no tolerance, very little side effects.

I will post in a few days about any changes... to make sure their is no placebo effect or "anti-placebo" (I am so used to things not affecting me, that I think it could almost work the opposite of a placebo.. if that makes sense)

I have two stress tests in the next two days... today, I have language school, which brings about some anxiety and added dp/dr.... and Saturday I have a concert with my band... which is also a good test of anxiety (I usually drop 1mg of klono, but will try without)

I hope the low dose approach will work well enough.

And good luck with your upcoming stuff. Im crossing my fingers in hope that it will work for you. I'd like to try this med. eventually as well.

[1998]

Merkan I have the same question, do you feel like your not tripping on acid anymore, prehppd. Like you can actually think straight, if so this is the best news I've heard on anyboard since I've had hppd. I really hope to live to the day where I can just feel somewhat normal again, show my wife what I'm really like without having to use benzo's and opiates

[VisualDude]

My neuro said I could stay on this low dose for life, if needed. No addiction, no tolerance, very little side effects.

Thank you for posting this. I get a lot of questions and concerns from people about Sinemet (carbidopa/levodopa). There is a lot of fear and misunderstanding about dopamine, especially since drugs like cocaine (which increases dopamine A LOT) are so addictive and harmful. Even LSD affects dopamine receptors. Of course any medication can be abused.

An additional thing to understand about levodopa (L-Dihydroxyphenylalanine) is that it is not dopamine. Rather it is a precursor to dopamine (a molecule that is needed to make dopamine). See the diagram below. Also, notice that L-Tyrosine is precursor to levodopa - this amino is available as a supplement and some try it --- the reports seem to be mixed whether it helps or causes problems.

One last thing that should be stated - Do not take levodopa by itself. It will make you puke and can cause other problems. Take it in formulation with carbidopa. Actually the word Sinemet means "without vomiting". Even most Parkinson's disease patients who desperately needed levodopa were unable to tolerate it until the use of carbidopa was discovered.

Wish you success ...

[Merkan]

I am sorry i do not respond that much to questions on the board anymore. I try to keep it running and remove spam (its been a lot of that!) besides going to class and having 500+ pages of literature to study every week. Visual has done a tremendous job explaining sinemet.

Yes i can think, feel, sleep etc. completely normal. Like Pre-HPPD. I have only been taking this for two weeks on half the dose that Jay1 is on (100/25mgday). The only concern now is what to do with the other meds. I have already dropped the clonazepam dose with 30%. I do not now i Sinemet alone would do it but since i have a lot to study i cannot experiment too much right now. I already took a huge leap with cutting the clonazepam dose.

To give you an idea;

when i normally walk in to the bathroom at night before turning the light on everything is black and a little bit hazy. On the first day on Sinemet, i walked in to the bathroom an immediately my eyes adjusted to the darkness and i could see the whole room and objects in there, clear.

When i took my first pill i started crying 30 minutes in due to the feeling of sinking in to my body again.

When i looked out of the window i could adjust my vision like i had superpowers (normal vision that is), like reading the text on the ships in the harbor, before Sinemet, i didn't even notice the ships..

But the best part, i remember....i remember my family and emotions towards them, what my life is/was like before HPPD. I feel like an individual basically.

Merkan I have the same question, do you feel like your not tripping on acid anymore, prehppd. Like you can actually think straight, if so this is the best news I've heard on anyboard since I've had hppd. I really hope to live to the day where I can just feel somewhat normal again, show my wife what I'm really like without having to use benzo's and opiates

[shaolinbomber]

I am sorry i do not respond that much to questions on the board anymore. I try to keep it running and remove spam (its been a lot of that!) besides going to class and having 500+ pages of literature to study every week. Visual has done a tremendous job explaining sinemet. Yes i can think, feel, sleep etc. completely normal. Like Pre-HPPD. I have only been taking this for two weeks on half the dose that Jay1 is on (100/25mgday). The only concern now is what to do with the other meds. I have already dropped the clonazepam dose with 30%. I do not now i Sinemet alone would do it but since i have a lot to study i cannot experiment too much right now. I already took a huge leap with cutting the clonazepam dose. To give you an idea; when i normally walk in to the bathroom at night before turning the light on everything is black and a little bit hazy. On the first day on Sinemet, i walked in to the bathroom an immediately my eyes adjusted to the darkness and i could see the whole room and objects in there, clear. When i took my first pill i started crying 30 minutes in due to the feeling of sinking in to my body again. When i looked out of the window i could adjust my vision like i had superpowers (normal vision that is), like reading the text on the ships in the harbor, before Sinemet, i didn't even notice the ships.. But the best part, i remember....i remember my family and emotions towards them, what my life is/was like before HPPD. I feel like an individual basically.

Well this has me really excited now. To see that so many are having good success with this gives me hope again. I'm going to schedule an appointment with my physician to see if he would be willing to oversee a trial of this medication for me. Do you guys think a Primary Care Physician is qualified enough to handle this or should I go back to a Neurologist?

[shaolinbomber]

Not to hijack your thread Jay but I just wanted to say that my dr started me on Sinemet today and I have to say that this med is outstanding. It combats dissociation like nothing else i've tried before and has me feeling like my old self again. The only troublesome thing about it is that it doesn't last very long but the upside is that you can continue to take it multiple times a day to have a continuous effect from it.

[balance]

Very interesting drug, definatly on my list of things to try.

[Merkan]

For those of you that try this, please make a topic in this section so we get some quality anecdotes. I will post myself further on, right now i am trying the difference between the slow release and the instant release

[VisualDude]

shaolinbomber,

Do you guys think a Primary Care Physician is qualified enough to handle this or should I go back to a Neurologist?

It isn’t an issue of being qualified. It is an issue of being willing. As you succeeded, please let us know how … thanx

The only troublesome thing about it is that it doesn't last very long

How much are you taking at a time?

I’ve tried 5 different dopamine agonists. Sinemet is unusual in that it is very much like charging a battery. Give yourself a few days at a low dose before increasing. Of course in the end, you may just need more that others. It is good that you are noticing a beneficial effect. Like Merkan, it seems to help dissociation issues. For me it does not (mine are mild).

Are you taking any other med besides Sinemet?

Merkan,

Am glad you will work to organizing this stuff. As you know I don’t always post in the right spots. I know this is Jay’s thread, and am uncertain how to convey info in a way people can readily find it. Perhaps if more try Sinemet, it can be a major topic with experiences under it.

If people post what all their symptoms are, which ones improve (in any), and what other meds they are currently taking – it should be possible to construct a probability table of which meds or med combinations are most effective. For example, things such as visual snow, geometric shapes, and DP/DR are quite different effects.

[zukov]

You are the best of the best

[Jay1]

Just a quick update...

Unfortunately, nothing really to report, from me. At 1st, I thought I noticed a small reduction in after images, and this may be the case... maybe a 10% reduction. Other than that, I have seen no good or bad response.

Those of you who have followed me on the old board will know that I very rarely respond to medication, positively or negatively... so don't let this post put you off.

It might be a case that I have had my hppd for so long that alot of the chemistry in my brain is actually pretty well functioning and perhaps healed... as I have said before, I don't suffer as much anxiety as in the first 5 years and strong disassociation went after a few years (with no meds),,, I am just left with crazy visuals and trippy feeling that only Klonopin has been able to diminish, so far.

I have said in posts before that hppd shouldn't be considered as one illness, rather a collection of illnesses that can be fought, one by one.... Sinemet might be the one that fights disassociation and makes your life that bit more bearable... even if other symptoms stay the same.

Anyway, I will keep on with this and maybe experiment with dosage.

All the best, Jay

[Merkan]

Sorry to hear that Jay. Maybe you are right, your visuals are very intense but you still live a very normal life it seems. I do not have the same visuals as you have described at the board before but i am suffering badly on a functional aspect. When i look at your work i am amazed of what you are able to do, i would never be able to study or even think a creative thought without meds.

I'll post my story to show another outcome and we might learn something

[sandrad1975]

Hello,

I have been reading about all the positive experiences on Sinemet.....I want my son to try this. He is 18 and has had Hppd for almost three years now. Life has been very difficult for him since he got this. He is currently taking Prozac 10m and .5 Kolonipin. My question is.....when any of you first started taking this, did it freak you out in a bad way? Like angry, hostile, nervousness, increased anxiety or agression???? He has tried things that have made him almost go off the deep end and I have a hard time controling him if a med does not agree with him. Im scared to have him try anything else because of this, but this sounds so hopeful!

Thanks!

[Phenomenon]

Sorry it did´nt help you Jay. Hopefully it might do something over time or with a higher dosage.

findacureformyson: I have´nt heard of any unpleasant reactions from Sinemet. Unlike Prozac wich negatively affects many individuals with HPPD. I´m also very sensitive, both mentally and visually, to substances altering my neurotransmitters. But I´ll try this one soon and report.