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Sinemet - What to expect


Rustyp81
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I find that Sinemet helps motivation, labido, brain fog, anxiety, and a number of visuals such as halos and acuity (sharpness/clarity) - so am biased about it being beneficial. If you read the few recent trials here, Greg (who is just starting is concerned about anxiety increasing a little) but the rest either have zero effect or it helps them alot.

It is good your doc is considering it. If you do try it, only a small dose is needed. I've posted a bunch about it and you may wish to start reading this thread http://hppdonline.com/index.php?/topic/495-the-one-thread-about-levodopa-preparations/

Some seem to like Keppra - certainly more have tried it - but Sinemet may be more effective in your areas. Do note however that few have actually tried Sinemet. Estimates about beneficial effects seem to be about 30 to 50%

It would help if you describe the benefit you get from each of the three meds that you are currently taking. Particularly, how does Clonidine effect you?

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Hey Visual, thanks for you reply.

The clonadine is a strange one. At first it did seem to sharpen up my visuals a bit but this soon wore off and now all it does (or appears to do) is give me a headache, very bad dry mouth and a craving to smoke cigarettes. I didn't really want to try it but my shrink said he wanted to try it before trying anything off label as the only research he could find for HPPD was treated with clonazepam and clonadine. So i guess it kind of a hope i've had to jump through to get to be able to try the other meds.

Clonazepam - my shink started me of on 1mg and told me to work my way upto 4mg over the course of a month. At 4mg I felt like I was totally out of it (drunk/spaced out)and have since slowly got the does back down to 2mg. I was only at 4mg for a couple of weeks so thank fully i had no w/d's. Also, it wasn't untill i got to 2mg that i actually noticed clonazepam actually do any thing and then it just makes me drowzey and sluggish. It never really takes my anxiety away, it just makes me feel doped up. It has had no impact on my visuals at all. So in short what is the magic bullet for most doesn't seem to work for me.

Lyrica - Not really sure why am still on this to be honest. I started it way back last year and got upto 600mg but after the euphoric side effects felt initially and at dose increment it did very little.

So yeah, all in all none of the meds i am currently on work really but at least I am stable(ish)

Other drugs other doctors i saw before being referred to the consaultant Psychiatrist include

Amytriptyline - First med i tried. Seemed to work well for anxitey/dr for a bit but wore off. No impact on visuals. I was on the max dose of 150mg

Citalipram - Evil drug - Made everything 100x worse. Stuck it out for 4 weeks but ended up being to scared to leave the house

Escitalipram - was told this was a "cleaner" version so should have less side effects.Wrong, same thing happened as above. I quit after two weeks.

Duloxotine - This seamed to work well for my anxiety but sent me in to a very dark depression which was a shame as on reflection it was probably one of the best anti anxiety meds that have worked for me.

Diazipam - For some reason seemed to work better for me than clonazepam. No reduction in visuals but very good at beating of the anxiety. However, my Shrink will not change me back over for some bizarre reason. He seams to think that clonazepam is less addictive.

I'm sure there are a couple of others but i cant recall them atm.

Cheers

Russ

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Thanks for the info. I applaud you for being brave with trying all these meds. It is good to try to find out and it also is usually necessary in building a working relationship with doctors. Most docs proceed just as you have experienced – they have to really think outside the box to ever try dopamine meds (medical practice is about 20 years behind medical research).

Amytriptyline is one of the few serotonin increasing meds that is tolerated by Parkinson’s Disease (PD) people … largely thought due to its counterbalancing effect of reducing acetylcholine. It does affect a lot of neurotransmitters. From time to time I’ve taken 10mg before bed to sleep. But benzos are much better for this. Also, it worsens night vision (‘lack of black’ issue). 50mg dissociates me to 3rd person status for a day.

Celexa and Lexapro can be rough though they are now popular with doctors. Your reaction was predictable for HPPDers. I took Lexapro a couple weeks during a ‘crisis’ and the only effect I noticed was the need to double Sinemet. I developed anisocoria while taking Lexapro but it is hard to ‘prove’ whether it would have developed at the time anyway or not. Either way there is definitely permanent damage to the parasympathetic nervous system. (Again, PD people have parasympathetic nervous system defects). I could never in good conscience recommend SSRIs to people with brain injury, PD, DP, DR, or HPPD – but it should be noted that some claim benefits from SSRIs.

Valium is very useful but develops tolerance the fastest of all the benzos (even within days) – probably why the doc won’t keep you on it (yes it is more addictive). In spite of its very long half-life, it is effective for me for only 4 hours. It doesn’t affect visuals.

Cymbalta is a SNRI drug. These types of drugs are the newer generation antidepressants. Haven’t tried this one but tried a similar one, Effexor two years ago and went through hell for 2 months (after 1 week dosing). Have also lost some cognitive functions ever since. As a side note, Cymbalta can be liver toxic for some people, though it is not often published – know one lady that by the third day her eyes turned yellow from jaundice. However, it is too bad the med didn’t work for you.

Lyrica – what is your current dose, 600mg? Antiseizure meds are often important with brain malfunctions. I use Lyrica’s older sister, Gabapentin (Neurontin) at fairly low dose now. Keppra and Klonopin (which you are using) are also antiseizure meds

Clonazepam – In my use of Klonopin and Gabapentin, the effects on visuals are minimal. At low doses they help the night-vision issue (though usually Sinemet is enough). Initially at high doses it helped ‘visual pain’. Now this is better and higher doses increase the defect of ‘movement of static objects’ a little. Both of these are helpful with anxiety but about 75% of it is handled by Sinemet.

 

Since clonidine is making you feel poorly, have you started to reduce it?

Curious that it makes you crave cigarettes since it is used for nicotine withdrawal. There is a connection with nicotine and dopamine. Smoking reduces the likelihood of developing PD in half (of course that doesn’t mean it is healthy). Smoking increases a lot of neurotransmitters: "When a cigarette is smoked, nicotine-rich blood passes from the lungs to the brain within seven seconds and immediately stimulates the release of many chemical messengers including acetylcholine, norepinephrine, epinephrine, vasopressin, arginine, dopamine, autocrine agents, and beta-endorphin." - http://en.wikipedia.org/wiki/Nicotine

And there is a connection between clonadine and dopamine - here are just a couple references:

http://www.ncbi.nlm..../pubmed/2569981 - Clonidine modulates dopamine cell firing in rat ventral tegmental area

http://www.sciencedi...024320588905000 - Clonidine regularizes substantia nigra dopamine cell firing

My gut feeling is that you would probably benefit from trying Sinemet (but as a disclaimer, I am a nobody so don’t really know). The reactions you describe so far seem to be good indicators.

It would further help if you would detail your visual symptoms even though you are used to them and they are not your primary concern.

Otherwise, hope this is helpful

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Hi Visual,

Thanks for your detailed reply.

With regards to my visual symptoms, the one that i find most noticeable is a feeling that there is some kind of film over my eyes, it's like they need a good clean or wipe. Every thing seams slightly blurry and foggy(even with my glasses/contacts). I also have problems with shapes, four sided ones mainly. For example if i look down at my iphone it will sometimes appear to look like a trapezium rather than a rectangle.

I see floaters all the time, they tend to always tend to be the same shape and always move from the top of my vision to the bottom rather than the zigzaging some others report.

After images - For example if i look at the TV or am playing xbox and look away from the screen I can see a negative of the image for a few seconds after, this is intensified if i blink rapidly when looking away from the source.

Some times I have problems with distance - sometimes things seam to sort of zoom in and then back to normal but this hasn't happened for a while now.

Reading text is a pain as i get ghosting but i think this is mainly due to the general foggy/blurriness of my vision i described above?!

All of the above are worse/more noticeable when i am in artificially lit environment, fluorescent light seams to be the worse, probably due to the flicker they produce.

When my HPPD started i and when taking the ssri's i had more visual symptoms but the ones i mention here are the ones that are still with me.

I get static vision but only at night.

With regards to my Lyrica, I am only on 150mg at night now.

When you say clonazepam helps the visual pain for you at higher doses, what kind of dosage are you talking about?

Interesting you say that despite the long half life of valium you only get relief for 4 hours. I currently take my 2mg of colonazepam as one dose at night(as with all my meds). I did speak to my doctor about splitting up the dosage but he said it probably wouldn't make much difference due to the long half life of clonazepam. Saying that though as i said before I have found doses <2mg ineffective anyway.

hmmm...interesting. :)

Cheers

Russ

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Klonopin – Am only taking 0.25 mg before bed. Also take 300mg Gabapentin before bed. I sleep well and it helps anxiety.

Just a little recent history on these: Went off all meds for a month for a doctor visit. Some visuals were worse, as were sleep, cognitive issues, sexual function, depression and killer anxiety. After exam, resumed Sinemet with enormous relief within hours. In a few days all these symptoms improve with anxiety about 75% better.

Klonopin and Gabapentin added to help anxiety. However, while effective immediately, in a week it takes 2 doses, in another week it takes 3 doses. With the brain counteracting this way, it doesn’t make sense to keep upping the dose. So largely do the evening dose only and live with some mid day suffering. As a side note, both of these improve cognitive functions which is usually contrary to how people are affected.

It seems that those who get significant improvement of their visuals with Klonopin need higher amounts (>2mg).

 

some kind of film over my eyes, it's like they need a good clean or wipe – This was my first symptom. And it will not wash out with water, eye drops, etc – hence I describe it as ‘oily’. This causes diffusion, especially in direct light, in the manner of cataracts. Only 2 things help this: 1) Patanol [prescription eye drop antihistamine] works for about a week; 2) dopamine agonists such as Sinemet. Please note this topic http://hppdonline.co...-itchy-ass-eyes

problems with shapes, four sided ones mainly – This type of distortion has been directly affected by dopamine! Even flat surfaces can appear convex – especially if light is uneven/shaded.

Negative afterimages – If I’ve been off Sinemet 6-8 weeks, I can get it to last over a minute by blinking. Otherwise, it is natural to have some negative after-imaging. http://upload.wikime...agenpov.svg.png

There are dopaminergic neurons directly connected to the photoreceptors on the retina. One job is local (‘spot’) adjustment of contrast and, to some degree image persistence. Note: "…distinct functional modes of DA cell spike activity regulation in the dark and in the light that can subserve the observed sustained, transient, and light-independent circadian modes of dopamine release…" http://www.jneurosci.../3/692.full.pdf

 

sometimes things seam to sort of zoom in and then back to normal but this hasn't happened for a while now. – I also experience this, but it is unclear how much Sinemet helps here. DA is a key player however. This type of movement is due to lack of synchronization of the two major visual systems – Focal Visual Processing and Ambient Visual Processing. The former builds on the latter. And the latter system ties heavily in the mid-brain (major dopamine area). It also ‘pushes’ anxiety.

ghosting – Clearing up the fogginess/blurriness will help. I do have some residual that is something else that doesn’t seem to be effected strongly by DA

worse/more noticeable when i am in artificially lit environment – This is a common complaint. Yellow (incandescent) light is the worst for me.

static vision but only at night – I have only the tiniest amount of visual snow and this is only in dark. It is effected by dopamine levels in my brain but it seems others on the forum get help with Keppra and/or Klonopin.

 

Based on the information you provided, it looks like Sinemet might help you a lot.

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  • 2 weeks later...

Hey Visual,

Thanks for the reply. I managed to get my doctor to prescribe me simenet :) The only thing is i have to come off of the clonidine first as the two combined can cause low blood pressure issues. I'm dropping 50micrograms of the clonidine a week and have been advised i can start the simenet once i'm down to 50mg, which will be next week.

I quite excited by your response and the temptation to start the simenet now is very tempting but I also like the idea of not passing out so will wait it out, after all another week isn't going to hurt and it might just be able to start the new year with new hope.

Cheers

Russ

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  • 2 weeks later...

Hi All,

I started My Sinemet on Xmas eve after rapidly tapering from the clonidine. I started on 12/50mg 3 times daily. Within half an hours of taking the first tablet i felt a strange buzzing in my brain, nothing unpleasant but noticeable. After a couple of hours I noticed my anxiety had reduce some what, possibly to the point where i didn't realise i had any till I made my self aware. No real impact on my visuals but things were looking promising.

Xmas day i took my morning dose and within an hour i had a complete reverse of the previous effects. High anxiety with spells of complete disassociation. This was the worst i have felt for a long time. I put this down to the sinemet levelling out the transmitters in my Gray matter, Sadly this wasn't the case and these symptoms continued for the next couple of days.

On the 28th i decided to drop down to 1 tablet in the morning and one in the evening. This has seamed to stabilise things some what and anxiety is probably, just bellow base line and disassociation is back to base line.

I don't think it has had to much impact on my visuals yet, the oily film still seams to be there but i do feel a little more connected to my surroundings than i did before perhaps, but never had the feeling of "sinking back into my body" that others reported.

All in all i feel that it is doing some thing and is worth sticking with. Think i'll stay on 12/50 twice a day for the next couple of days and then try and go back upto three times a day and take it from there.

This shouldn't put anyone off trying this med though as, sadly, i tend to react one of two ways to meds. They either don't work or they just make things worse.

Is it normal for sinenet to take a while to stabilise in your system? I was under the impression that it would either work right away or not at all!?!?

I'll keep this thread updated as and when there are any changes.

Hope every one had a good festive season :D

Cheers

Russ

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Is it normal for sinenet to take a while to stabilise in your system?

Good question, Sinemet was the 3rd dopamine boosting med I tried. But the first med I tried took about 4 days to stabilize (and was scary though clearly having positive effects) - especially odd since the dose was so low.

The first med was 75 mg Wellbutrin SR once a day at 9 am. The first 4 days were really weird. Frames and contrast began improving within a few hours. Strange things occurred.

Most notably was a 6 hour cycle: by 12 felt agitated, by 3 calm and relaxed, by 6 agitated, by 9 pm calm again. (strange cycle since this med has a 20 hour half-life). It was if the brain was starved for this med and went all over itself adjusting to the newfound increase (be it ever so slight). Also, this med increases norepinephrine.

The scariest was the first two days, my front teeth felt numb around 6 pm. I looked up side-effects but this wasn't listed. I persisted and It didn't happen again.

The first day my muscles relaxed (saw a masseuse that afternoon and he said, "If he didn't know it was me, he would swear it was NOT my body - muscle tone and tension was so improved")

Third day, color got brilliant but backed off to more normal by day four.

After this all stabilized. Frames rate was improved about 50% and vision clearer/sharper. (I was stunned because I thought this med too weak to do anything - was actually pissed off when this was all the doctor would give me to try).

On the seventh day, increased dose to 150mg / day. Frame rate improved another 50% (75% overall) but by day 3 at this dose, eyes began to hurt. So discontinued. There were no other weird things going one - but pain should not be ignored.

In a few days (predictable to the meds half-life) symptoms returned - but remained permanently better - perhaps 40%.

Based on these results, the doc gave me Requip a month later. It made vision foggier within an hour but sharper by the sixth. If shifted depth perception according to blood levels (this med has a 6 hour half-life). These constant changes, while verifying dopamine’s involvement in my particular problems, were too ridiculous to put up with. (months later tried Requip XL which was stable but it was too strong and basically made vision foggier)

Finally got Sinemet 25/100. Was worried about its half-life (only 45-90 mins). Tried half pill 3 times during the first day with no results. But on the second day the effects started. They were wonderful. Nothing negative. Improved vision, sleep, anxiety, and sex drive. In a month, stopped taking it to test where I was. Things gradually deteriorated but it took weeks to do so. And never to the point prior to taking it.

With all these meds, I was taking no other medication. One might think your taking Klonopin might smoothout adjustment, but it is hard to know. Also, unlike the reports of success we have heard about, it has never affected my DR.

Perhaps the strange effects you are experiencing are what I went though with Wellbutrin. (I can now start or stop Wellbutrin SR 75mg dose without anything strange happening. Its effect is similar to Sinemet and I reduce the Sinemet during these times.) Sinemet is milder than Wellbutrin - but adjustment is adjustment and depends on the person.

It is rumored that Dr Abraham is using dopamine meds in drug trials, though this info is private and can not be confirmed. Some members have reported that, while it helped them, it also gave them side effects that they did not like - so they haven't pursued it. I think his trial is taking meds as a single dose, not taken over weeks or months - but again he would have to confirm this type of information. I've been on Sinemet 25/100 over 3 years with dossage of 1/2 pill 2 times a day (sometime 3 times).

Hopefully you will have a positive adjustment over the next couple weeks

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Thanks for the reply visual, your reply has giving me a bit of hope. :)

I have had a couple of days off from my part time job so have decided to take 12/50 3 times daily. All in all things seam to be a little better. Vision seams a bit clearer sharper(although the film is still there) but i seam to be getting more glare. I'm not sure if this is because my vision is improving and i had not noticed the glare before or if it's just the light bouncing of my glasses again this could be due to a slight improvement in my visuals that i had not noticed it before.

anxiety is below base line but i still have issues with dp/dr. I also feel kind of wasted, bumping into things, losing balance and cognition seams a bit retarded. Saying this i have been able to concentrate from longer spells of time and have managed to take a good chunk out of my uni work.

I guess this update is a little contraindicating but this drug is defo doing something!!

I'm back at work tomorrow and am unsure whether to stick with the 3pills or go back to the two. I also find it hard to rember to take my midday dosage as i don't really get and withdraws to help me remember when to take my next dose. I guess I could start to set a reminder on my phone.

I been having a bit of a general read around sinment and PD and was interested to find that some people with PD report side effects of dp/dr and hallucinations. From what I have found these cases tend to be in older patients so could be a case of other mental disordered.

I'm quite interested in reducing my klono and trying Sinment with Kepra but that wont be till march at the earliest. For now i will keep going with this med a i fell it is deffo doing something and despite some of the negatives I have indeed felt some of the positives.

Another thing that is keeping me positive is that i have none of the side effects of having to much dopamine in my system so this surely must mean i have a deficiency in the old Gray matter some where??

Any way i will keep this post going with updates as the days progress.

Happy 2012 to one and all

ATB

Russ

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Vision seams a bit clearer sharper … but i seam to be getting more glare ... this could be due to a slight improvement in my visuals that i had not noticed it before

It is always hard to know for sure when stuff is subtle. Since dopamine does affect contrast it can make previously unknown things noticeable. Also, depth perception can shift with lighting and the amount of med you are taking – which takes time for the body to adjust. And your use of Lyrica and previous use of Clonidine will have its own additive effects.

For me, contrast is much sharper so I can see very minute details and things - in fact, in most lighting situations, the sharpness and ability to see detail is the best it has ever been. Some of my eye doctors are floored by it.

Please look at this site and tell us if you experience anything you see here that relates to you http://www.visionsimulations.com/

anxiety is below base line but i still have issues with dp/dr.

Anxiety is reduced for me but there has been no effects on DP or DR. Also, reducing the Clonidine is going to make you more sensitive to anxiety … its just a small complication that time will resolve.

I also feel kind of wasted, bumping into things, losing balance

Well, besides possibly enjoy your new years eve (lol), changes in dopamine will cause small changes in muscle control – be it balance, coordination, unsteadiness or even slight tremor. Can you image people with PD who take 20 times the amount you are now trying – wow.

cognition seams a bit retarded. Saying this i have been able to concentrate from longer spells of time and have managed to take a good chunk out of my uni work. I guess this update is a little contraindicating but this drug is defo doing something!!

It isn’t really contradictory – you feel different yet you are actually able to do more. Again, this is an area to adjust to. Cognition in very complex and also involves norepinephrine (which is made out of dopamine) so there is a lot of down stream affects with myriades of feedback and feedforward loops to adjust.

as i don't really get and withdraws to help me remember when to take my next dose

This is typical when need is low. One member (if I remember correctly – shaoliinbomber had only a couple hours of relief which, for the moment has stopped. He hasn’t yet given more info about it http://hppdonline.co...on-the-klonopin)

Some people with very early PD actually only need a pill every day or two. I was stunned that it take many weeks for the effects of low dosing to leave my system.

I been having a bit of a general read around sinment and PD and was interested to find that some people with PD report side effects of dp/dr and hallucinations. From what I have found these cases tend to be in older patients so could be a case of other mental disordered.

About 30% of people with PD suffer Lewy body disease which causes dementia. Also taking very high levels of dopamine can cause hallucination. But curiously, unlike schizophrenia, they don’t believe what they see. One account was about a fellow who, while sitting watching TV saw a clown enter the room dancing … sometimes blocking his view of the TV … and then leaving. He never for a moment believed what he saw or was concerned about it. Again this is advanced PD with lots of neuronal damage.

Curiously, PD is only accurately diagnosed by autopsy, and 25% of the time, the previous diagnosis was actually wrong.

Another thing that is keeping me positive is that i have none of the side effects of having to much dopamine in my system.

It takes a lot of dopamine to cause negative effects for most. It would be most unusual to have a problem. I’ve taken as much as 4 pills (Sinemet 25/100) with the only negative being that light seems a bit too bright … and perhaps a slight agitation. This amount is way above my need which, long term, seems to be ½ pill (Sinemet 25/100) twice a day.

Any way i will keep this post going with updates as the days progress.

Speaking for myself, you replies are very appreciated. I hope that other members on this forum appreciate the information and can extrapolate whether it may be useful for their own problems or not

It is my assumption that the purpose of this forum is to find support and solutions

Thanks Russ

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