Greg's Sinemet Experience

[gregory71]

I figured I better post a little journal of my experience with Sinemet.

First off, I still have "Abilify" in my system. It can block some of the effects of Sinemet, but unlike some antipsychotics Abilify does "increase" dopamine in some areas of the brain.

I am also on Klonopin at a very low dose of .25 2x a day.

I just popped a "quarter" of the lowest dose sized pill about 45 minutes ago. Some anxiety over it during the waiting stage. (I have GAD btw)

What I've noticed now is some body warming. My legs seem to be more relaxed. I do however have a little anxiety to where my palms are a little sweaty. My focus is a bit stronger. I have some little "twinges" here and there in my body. My heart feels a little heavy. Maybe a little extra adrenaline?

Visuals still around atm. Let's say I look at the window and look to the side. I see the light lingering longer and shadow longer than most normal peeps.

With all that said, I'm feeling OK. I'll try another small dose in 5 hours.

The real test will be in 3 days when Abilify leaves my system.

Thanks for reading,

Greg

[VisualDude]

Was wondering how you would respond since you like Abilify. Abilify makes me quite sick, but everyone is different.

While Sinemet is quite mild and 1/4 pill small, don't be surprized about any twinges are shaking - particularly having been on Abilify.

What is the size of your Sinemet pill? 25/100?

Hope things go well for you and thanks for posting

[gregory71]

Hi Visual,

The Abilify helped with mood for sure. It however created some sort of spacey foggy feeling in me. Something was just wrong. I didn't feel "normal". At times when driving alone, I'd feel at peace, but around people, just on edge.

I'm glad you think that the twinges and shaky feeling is because the Abilify is still in my system. I'm hoping that this goes away in a few days. Abilify has a long half life.

The size of the pills are 25/100.

I'll post a more as this develops.

Greg

BTW. I'm a long time HPPD sufferer. I was one of the first people along with another Reed student to visit Dr. Henry Abraham in Boston. I am a filmmaker and photographer who documented the mdma scene, but also got interested in fellow sufferers of HPPD.

[VisualDude]

Without betraying personal confidence, how did your visit go? Have you tried dopamine agonsts before?

[gregory71]

Visual,

This was long before he was using any of the DAs. Klonopin was pretty much one of the major options then. We took my Reed Student to the Childrens Hospital for a Scan. It showed mini seizures in a specific area of the brain that has to do with vision. Klonopin seems to calm that to some degree.

BTW. If the sinemet does not work, I am flying out to see Dr. A in 30 days.

Greg

[VisualDude]

[gregory71]

UPDATE:

Its day 4 of my Sinemet experience and I know that the Abilify should almost be out of my system. I just popped my first half of pill. the 25/100. A little anxious that I did so, but we'll see how it goes. The last few doses have been baby doses of 1/4. I'll post later today on how this half dose works out.

For the last few days however, there has been some good and bad.

The GOOD - Lots of motivation and clearer head. I've worked out a few times, talked more than ever to strangers and friends, and also got more work done in general. Visuals did seem a bit better.

The BAD - I had some twitching in my left thumb and right index finger. Very strange sensation. Also, my heart felt a little heavy and with some anxiety thrown in. Keep in mind that I am very sensitive to caffeine and dopamine in general. My GAD (Generalized Anxiety) is the culprit here. I am hoping that once the Abilify leaves my system this will help out.

With all that said, Lamictal helped me while I took it the most when I took it. I however developed a rash. I had to quit after a week.

And get this. 4 years ago I was doing OK on Cymbalta. I quit because I wanted to have sex again. My libido was shot! I then had a doctor put me on "Risperdal". As most of you HPPDers know now, is that is the worse stuff for us. I had panic attacks in my sleep, saw purple, and have "never" been the same. Been in a really bad place since. Knowing that Risperdal reduces dopamine maybe let's me think that is why Sinemet my possibly work for us. More time will tell.

Thanks guys,

Greg

Would love some comments.....

[VisualDude]

Yea, the antipsychotics that you took/take took me by surprise - usually not good with HPPD. But, of course there can be other problems to need such meds for.

Was reading some Parkinson's disease stuff and was surprised that, some can tolerate Seroquel and a few other antipsychotics.

I had 3 main symptoms from Abilify. Two went away in about a week (in accord with it's half-life) but the agitation/RLS took 6-12 months to resolve (and only took 2mg dose twice).

The GOODs that you mention seem excellent and characteristic of the med too.

More about 'twitching' and the like:

The twitching isn't surprising - especially since you've been on 'anti-dopamine'. One neurologist said that, "your brain has to relearn what is normal". These words have proven true.

I've never had smooth control of the left fingers, mainly when 'releasing'. With any dopamine med (- or +) it changes the control I have for this 'delicate' type of movement.

As a "hardened" Sinemet user (lol), over the years control of fingers has improved greatly. Also, it is far less affected by changes in dosing. Initially any change in dose changed movement control. Have been trying to learn to play the guitar [by the way, I kind of stink at it]. So in this context, smooth control of fingers, especially the left hand, is important - is very noticeable.

I cannot say how it will be for you or anyone else. It has become clear, looking back, that I've been very dopamine depleted (but do not have PD). If I take no medicine at all, in about two months I can barely function. However, on the positive side, a number of dopamine related symptoms remain improved even without the med.

You say some of your visuals are a little better. Can you tell us which visuals are better and which seem the same?

You say some anxiety/agitation? You also have adjustment to discontinuing the other meds to deal with. You may do best to have a little anti-seizure type med. How was it Lamictal helped - was it anxiety or visuals? Are you taking any other meds at this time? There are lots of anti-seizures available besides Lamictal. Have you tried small amounts of Klonopin?

Sorry about so many questions ... but am hoping to help members better understand what they can reasonably expect. Also, to be helpful to you, if possible. If you do fly out to see Dr A, detailing these things will help your appointment to flow efficiently.

Thank you very much for sharing your experience.

[gregory71]

Hey V,

First off, (Visuals).

Honestly, today they were worse. I just felt a little "uneasy" with all that dopamine in my system. Again, I'm very sensitive to just even small amounts of caffeine. I'm not sure Sinemet is going to be the drug for me. Kinda sucks!

My next step will be maybe Keppra, but I'm really trying to learn about COMT. I think this is what Dr. A has up his sleeve, but I don't have a clue which one he's using. Also, would COMT increase the chances of too much stimulation?

I would of stayed on Lamictal if it wasn't for that damn rash. It seems to be the only one that has antidepressant properties. Maybe Keppra is worth a try?

BTW. I am also on Klonopin. About .25 2x a day. Pretty low dose. Even with Klonopin, the Sinemet was a little too stimulating. I feel my brain really needs to "calm" down. It's over stimulated all the time. Even while I rest. I've had it tested.

The last resort, might be Zyprexa. I have seen many talk of how it "blast" anxiety. Only problem is major weight gain.

I was doing OK on Cymbalta years back with Neurontin. I however was trying to date and unable to have a decent libido. Thus my quest now for an alternative.

Any insight on all of this would be really great.

Greg..

Oh..I'm giving the Sinemet another week.

[VisualDude]

Please describe the type of visuals you have. Foggy vision? Poor contrast? Depth perception issues? Sluggish (frames or drunkenness)? Instability (wiggly, movement/bowing of stationary objects)? Color distortions? CEVs?

Some of these dopamine 'cleans up' right away. Others it has no effect. Some may 'destabilize' a little as your brain adjusts - just like twitching/tremors.

Do you have symptoms other than visuals and anxiety?

COMT inhibitors are stronger than Sinemet. While it isn't sure how you would react, generally they are a 'punch' compared to Sinemet. They are used by PD people who do not respond to Sinemet ... and they are to be taken with Sinemet at the same time ... and (regrettably) they are hard on the liver. It won't hurt to try if this is what Dr A's trial is. He will require you be off all meds for a couple weeks (for Klonopin it will be 1 full month).

Your positive responses to antipsychotics seem interesting. And Cymbalta remarkable - it boosts norepinephrine (far far more stimulating than dopamine) and it boost serotonin (usually difficult for HPPD people). Clearly the GAD is a factor to manage.

I do well with Neurontin ... it is #2 and used more than Klonopin.

Perhaps try this: just take 1/4 or 1/2 Sinemet just once a day (in the morning when you get up). Do you still have Neurontin in your cabinet? Give yourself time to adjust for all the changes and keep Sinemet low. Since it helps your thinking, socializing, motivation and productivity - it would seem clear you need it. The question is how to balance the other parts of your brain. Again, give yourself some gentle adjustment time.

[VisualDude]

Greg, have you tried Propranolol?

[gregory71]

Hi Visual,

I remember trying Propranolol when I was in high school. I remember a sudden change. I was sitting in my chair however and was falling asleep in a way. Then I panicked and could not wake myself up. It was like sleep paralasis. Think I should give it another go? I am always having too much adrenaline for sure.

On another note: I'll give another update towards end of week on the Sinemet.

Quick question. Is the Neurontin better than Keppra for you?

Greg

[1998]

I used propranolol for a while. It scared me cause my heart would skip beats occasionally and I was extremely light headed and dizzy. Everybodies obviously diff though.

[VisualDude]

Propranolol effectively reduces epinephrine (adrenaline) and norepinephrene (noradrenaline). It encourages the parasympathetic nervous system. Its uses are primarily for hypertension, anxiety and panic. Also for irregular heartbeats (sorry 1998, guess it caused them for you), tremor, migraine prevention, PTSD, and more.

Since it effected you (both) so strongly, a lower dose would be in order if you were to try it again. Of course with HPPD (etc.), individuals get some really weird reactions. Personally, I find Klonopin an aphrodisiac and good for ED - go figure.

On another note: I'll give another update towards end of week on the Sinemet.

Please consider the morning only dose to 'ease in'. As far as you having anxiety from it, people with PD take a lot of Sinemet (in order to be able to move) and it can increase anxiety.

Norepinephrine is made from Dopamine and Epinephrine made from Norepinephrine - so you can see the logic of stuff like propranolol. Curiously in spite of this spill over effect, Sinemet tends to lower blood pressure so you don't take high amounts of beta-blockers and Sinemet unless you have hypertension.

Anyway, some ideas to talk with your doctor. Unfortunately, what is needed for one part of the brain may be the opposite for other parts. And recreational drug use weaves a tangled web.

Quick question. Is the Neurontin better than Keppra for you?

I had to use Neurontin for brain overactivity (not quite the same thing as epilepsy). Only recently have I tried to try Keppra. The first time it hit me like a brick but then had to stop because a doctor wanted to examine me without any medication at all http://hppdonline.co...-while-driving/

Recently tried it again. It didn't seem to do much, then got sick with the flu so the eval got messed up (again). So, will try it again later - its getting like a yo-yo with this trial.

So I can't tell you which is better - they are very different. I can feel it has some dopamine effect, but it is subtle and not well documented.