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Merkan

My profound experience with levodopa/carbidopa (Sinemet)

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I started Sinemet for about two weeks ago. The dose is 50/12.5mg 3x/day

Well, the story goes:

I was very nervous when i was about to pop the first pill, i remember it like when first taking psychedelics. I knew there were about 30 minutes before getting full effect.

I took it and laid down i the couch trying to distract my thoughts, listening to some relaxing music.

It only took about 15 minutes before something happened. I felt different in a way. The effect kept raising, i didn't now if it was good or bad. When the clock where close to the 30 min mark I already had tears running from eyes. I felt this "warmth" in my body that is very hard to describe. I cannot say it was like a strong painkiller cuz my mind was sharp. But it was soft and so pleasant. I started to notice my body, my legs, arms etc. it really felt like I sunk back into my body and felt a comfort i didn't have had in years!

The initial effect stayed with me for, say 3 hours. This was at afternoon. I was excited about the initial reaction. I took my 2nd pill, the evening dose, and the effect became even stronger but this time i was ready for it. I felt a little bit of anxious that passed. I went to sleep and slept well.

During the following days, I felt great in every way. My DP/DR was completely gone. The last visuals subsided in 2-3 days and everything in my vision became smooth.

One week later I reached another threshold. The member "Visual" explained it as "recharging a battery and it takes a week for full effect", i did not pay attention to that then but now i know what he means. My sense of orientation towards the surrounding world functioned for the first time in 5 years. Everything around me felt real and i could place myself in time and place. My creativity and libido came back, i started reading books and wanted to interact with people. I phoned my whole family just to speak out because I started to feel an attachment to them.

I can truly say that this has changed my life in a profound way like nothing else before i have tried. I do however feel a bit confused. One would think that the question "who am I" would come up but the question that i am trying to sort out is "where am I". I got this disorder when i was 21. It is now 4.5 years since and it feels like i just woke up from a dream, like I am back where i was at 21. I do not feel sad right now about realizing the fact that I lost my youth years but i am perplexed where to start of again. My idea is not to try to catch up what once was but just to start of my life where it is now and what i feel about it.

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Ramblingon, how did keppra help you? can you expand on how it's been a big step forward for you?

And Merkan, Im really happy for you man, and im glad that it might be a big step forward for all of us. From what i recall, your symptoms are quite similar to mine...

You dont have hallucinogenic symptoms right? "Just" the trails, static, afterimages, floaters etc, and of course the DP/DR, which im guessing is what bothers you the most?

It's pretty much what kills me as well man, i cant think, talk, recall shit, come up with shit, and on top of that i have nerve/muscle pains and fatigue coupled along with it...do you have fatigue and stuff too? If so, has this helped? Also, if you stop taking the sinemet, do the symptoms return?

Please keep us updated!

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Boogres>

i am sorry i dont have too much time to give you a proper answer but i read all of your questions and the answer to them all is yes.

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and of course the DP/DR, which im guessing is what bothers you the most?

It's pretty much what kills me as well man, i cant think, talk, recall shit, come up with shit, and on top of that i have nerve/muscle pains and fatigue coupled along with it...do you have fatigue and stuff too? If so, has this helped? Also, if you stop taking the sinemet, do the symptoms return?

your symptoms are exactly like mine. Everything to the visual aspects the pain and fatigue. The visuals are annoying but keppra has not done a whole lot for them, what it gave me back is my cognative ability. I can think, talk, recall shit, come up with shit. I'm my old quick witted sarcastic bastard self once again. Pretty great feeling. Also DP/DR is much less prevelant in general, and may just be gone I haven't been on keppra long enough, but that used to kill me big time.

wanted to edit this really quick, i feel as though i may have been to optimistic in saying my DP/DR has been that improved. It still gets to me at points every single day, but we'll see.

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Thats great man im glad to hear, fills me with hope. Sinemet sounds great, but i'm thinkin id rather try something like keppra first, which may serve as a true remedy, over sinemet, which just sounds like a temporary antidote...I guess we'll know more as people keep taking it...

has keppra decreased your fatigue and pain as well? have you had any noticeable side effects? howd you approach the dosage?

Ahhhhh good vibes in this thread ^_^

And merkan, thats alright man thanks, good luck with all your shit and keep us updated!

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Curious, why to you suggest that Sinemet is just a temparay antidote? Is it because it only takes care of some problems, not all?

In comparison, has Keppra or Klonopin (which are good meds) ever permanently resolved HPPD?

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Yea man, I know a kid who went keto, keppra and klon and got better...Ive also read about remission of symptoms from keppra...i honestly dont know enough about sinemet, but from what ive read, dont its effects only last 3 hours before you have to take another one? I dont know man just reading between the lines i guess..

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has keppra decreased your fatigue and pain as well?

At first, no. In fact starting keppra made me even more tired. But it only lasted the first few days, and since then I haven't noticed fatigue, even after upping the dosage. I'm not a fair judge on the ache and pains though, i'm always sore.

have you had any noticeable side effects?

Honestly, no. I personally have experienced no ill side effects from keppra, except maybe feeling a little more tired the first few days I started taking it.

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howd you approach the dosage?

When I got the prescription my doc said to just start taking 1000mg a day. I didn't do that, it seemed like a little much after reading around here, so i started with 500mg a day for the first week, then upped to 1000mg a day and i've been here for a while. Thinking of going to 1500mg soon.

BTW, i'm not a doctor, always ask your doc about stuff.

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I've got them in 500mg pills, so i'm taking two per day right now. I've only been taking it for about 2 and half weeks as of now. There are plenty of people with experience with it on here whos threads you can read through as well, but for me, it has been great. I know of many people who take at least 1500mg per day, and other people who take more than that. The good thing is it's not addictive or really harmful. I was unbelievably apprehensive about putting any sort of pill/whatever in my mouth ever again after getting HPPD, but I'm glad i did.

My plan right now is to keep dialing in my dosage and sit on keppra for another month or so, then I might give sinemet a try myself after all i've been hearing about it, these two in conjunction could get me right where I want to be. But yep, man, for me keppra has been a savior.

Oh and also, doctors and others will tell you it takes a few weeks of taking it to get it built up in your system and you start to notice a difference, but for me, I noticed the clarity of mind pretty quickly. Being able to think again has also had the side effect of reducing some anxiety for me. It's sort of sparked hope in life for me again. That's my experience with keppra in a nutshell.

All I can say is do plenty of reading on it (i'm sure you have), and best of luck to you on whatever you decide to do!

EDIT: Sorry for the tread hijack merkan! Didn't intend that!

Edited by ramblingon

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Thats great man im glad to hear, fills me with hope. Sinemet sounds great, but i'm thinkin id rather try something like keppra first, which may serve as a true remedy, over sinemet, which just sounds like a temporary antidote...I guess we'll know more as people keep taking it...

has keppra decreased your fatigue and pain as well? have you had any noticeable side effects? howd you approach the dosage?

Ahhhhh good vibes in this thread ^_^

And merkan, thats alright man thanks, good luck with all your shit and keep us updated!

This is just my uneducated opinion but I think Sinemet might be a progressive type of treatment for the people who get benefit from it. I've felt better and better over the past week. Who knows what has been screwed up with us who have HPPD. It could be that an adequate amount of time is needed to properly set everything straight again.

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Yea man, I know a kid who went keto, keppra and klon and got better...Ive also read about remission of symptoms from keppra...i honestly dont know enough about sinemet, but from what ive read, dont its effects only last 3 hours before you have to take another one? I dont know man just reading between the lines i guess..

For me, it takes about a month for the effect to go away completely. And then I'm still better off than before ever taking it. For example, I know longer see in frames. And contrast adjustment works better.

It is hard to know how it will help an individual. It doesn't touch my DR yet 2 members here say it helps this a lot. It helps cognition a little, but I need much more (however, have been told my injury is too great to expect much).

It seems clear that Sinemet and other DA meds are just part of the 'cure'. Will be interested to see if other members find that it helps over time (month and years) - or if they need to take as much.

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For me, it takes about a month for the effect to go away completely. And then I'm still better off than before ever taking it. For example, I know longer see in frames. And contrast adjustment works better.

Im glad to hear man, frame vision was horrible, thats when i thought i was done, although i only had it for a few hours. The stepping stones are small for us, but they're there. Glad to hear that some people have been making giant leaps as of late.

Howd you get HPPD man? And alot of people have been told so and felt that way, but many also manage to lead seemingly normal lives. Although we know that this might take a while, if you keep walking toward a landmark on the horizon, youll eventually get there. Easier said than done, but we gotta try...

Youre very knowledgeable about this shit man, youre an asset to the community and a great help to many of us unlucky few ;)

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Just wish to help. Spent years reading about dopamine. When there isn't a standard treatment protocol for a problem, a person is often left on their own. Of course, my enthusiasm for this med could lead to unrealistic expectations. First posted about Sinemet a year ago this month on another forum. Last month Merkan was the first to try. Now Jay and Shaolinbomber. So 2 out of 3 feel it helps - good so far.

For me, HPPD is more a sub-diagnosis. Have 'toxic encephalitis' (according to 4 docs so far) which is more global (effects more things than HPPD). Mine is from accidental poisoning - odors from a 'sick building' trashed the brain of a couple people (perhaps that falls into the 'glue sniffer' category). It is so weird it seems unbelievable ... but thats life.

Again, Sinemet has behaved different than other DA meds in that the effect is like charging a battery. But others meds tried did exhibit the improvement, both during and after - so there are options.

The frame stuff is mind-blowing. Glad it went away for you. Did you see delayed frames or multiple frames?

What are you visual symptoms?

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It should be mentioned that in Dr. Abraham trial with DA substances there were 30-50% success rate. So, that some people wont feel any difference is expected and i believe it is important to discuss this in the open (trials) to get realistic expectations in people.

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Hello people, i have a question:

What is your's theory or idea about the process of the sinemet and the dopamine? There's a few points i dont understand quite well.

It's not dangeorus overcharge our brain with dopamine? If the sinemet works like a recharging battery, that means a low level of DA, something i like to check. Maybe it's a stupid question, but i will feel better if someone explain me something about this.

Thanks and happiness

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Overcharging is not good. But you will only respond to this med if you are 'running low'.

As for what is actually happening: there could be damaged synapses, damaged neurons, or 'clogged' synapses that get cleared up. Or it could just stimulate plasticity.

Your question is not stupid. But the answer is not really known. For that matter, there doesn't seem to be any papers published about using Sinemet for visual disorders such as HPPD. I did my own research, then presented the info to doctors in order to guinea pig myself. Since 'natural' methods were insufficient in my case, there was a need for the sledge hammer approach of prescription meds. I'd say I got lucky, but is wasn't luck, it was study.

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hey merkan, in which dose you take klono together with sinemet. i have hppd since 15 years and i take benzos since 4 years (i'm down to 1mg k-pin/day since one year). today i will start with sinemet. so how should i combine the k-pin with sinemet??

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I hope so too! :D

All that can be said for sure is that it has profoundly helped my life. Also, however, more is needed - right now I can't hold down a job, Sinemet or no Sinemet.

Perhaps one day I'll need so little dopamine support that natural stuff like L-Tyrosine and Mucuna pruriens will do ... only time will tell.

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I hope so too! :D

All that can be said for sure is that it has profoundly helped my life. Also, however, more is needed - right now I can't hold down a job, Sinemet or no Sinemet.

Perhaps one day I'll need so little dopamine support that natural stuff like L-Tyrosine and Mucuna pruriens will do ... only time will tell.

The way you explain how a DA like Sinemet "recharges" the brain is quite interesting. Using powerful medications used to treat PD for HPPD must mean that there was indeed significant physiological adaptation/changes made to the brain due to drug use. That is quite scary yet I feel we've gotten so lucky that there is a drug that can treat it.

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Three months ago my blood test shows a very low level of serotonin (0.83) and the dopamine is also low too, but i cant remember now the number.

Anyway, every person is different and the levels of serotonin and DA is unique. Maybe the sinemet recharge the DA or affects the function of it, this it's very interesting for me, independently the disturbing hppd.

All this months im living like an episode of Dr. House. Trial and error.

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Blood tests reveal only the amounts of neurotransmitters in the body, but not actually what is going on in the brain. As a little curiosity, there is more serotonin in the gut than in the brain.

Find 'blood' in http://en.wikipedia.org/wiki/Serotonin and http://en.wikipedia.org/wiki/Dopamine to see some of the bodies use of these neurotransmitters.

If you take levodopa by itself, you will mainly affect the body. If you take Sinemet (carbidopa/levodopa), then the carbidopa is used in the body (and does nothing) while the levodopa gets to the brain - a 'decoy' trick.

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