VisualDude

Just wondering, what's the recommended dosage of Sinemet and do you guys take the regular or extended release tablets? [Disclaimer] Ok, none of us are doctors [End Disclaimer] As for dose, Sinemet 25/100 (most common preparation): ½ pill 2 or 3 times per day should do. If it is going to help you, you will notice the effect in as little 30 minutes or as long as a few days. You probably do not want to go higher than a full pill 3 times a day. Always start low and be patient. So far, regular works better for me and another member. I’m wondering whether you have experienced any side effects/ withdrawal symptoms. I do not want to get addicted to anything so am refusing to take benzo's but really hating this hppd hell and really need something for those bad days. Note in Jay’s thread: http://hppdonline.co...-sinemet-trail/ "My neuro said I could stay on this low dose for life, if needed. No addiction, no tolerance, very little side effects." [This info is nice since it comes from an actual doctor – Note: low dose] When you discontinue using it, then things gradually return as they were in the course of 1-4 weeks. However, in my case, some symptoms seem to be permanently resolved. Hopefully others will experience this as well. Also does it help with your visuals? My visuals have ramped up as of late and making it hard to see. It depends on your visuals. Contrast, night vision, visual acuity (sharpness vs cloudy), depth perception, halos, glare, motional latency & frames, and negative afterimages are the most likely to respond. Non-visual symptoms that it may help are: anhedonia (motivation, enthusiasm, labido), depression, anxiety, insomnia, and (for some) DR. Visuals unlikely to respond are: visual snow, color confusion, CEVs, OEVs, pariedolias. There is quite a variance with individuals. Combination with other meds such as Keppra may be important – just work with one at a time to gain a feel/understanding of how you respond.

i loose the focus on one point with the rhythm of the pulse. dont know if this is understandable - I get this too, sometimes in rhythm, othertimes not. However the Sinemet fixes unless very tired.

relaxed, awake and calmed down - sounds good. visuals still remain - what are your visual symptoms? i take 1000mg keppra and 50mg zoloft too. try to leave zoloft soon. i think it does nothing for me. - It is perfectly fine to take an SSRI with Sinemet, however, increasing serotonin tends to reduce the effect of dopamine. Of course if a med doesn't do much, then there isn't much reason to continue it - just back off Zoloft slowly. Which formulation are you trying? (Sinemet or Sinemet CR) Wish you success...

I got a 4 - damn, almost perfect A lot of men (~10%) tend to have color 'blindness' in the green-blue area. Occasionally I flub in this area. Throughout the visual crap, it is only the color saturation that has varied (dull vs brilliant) but there hasn't been a shift in color as some LSD users report.

So, it sound like if the med will help you, it will only do so in combination (if it would ever be helpful at all) One thing good for the forum about your experience is that you had no negative effects even though you apparently don't need the drug. Some people have been afraid they might get addicted and/or get high or hallucinate (or some other weird thing) if they take this drug. There was another guy (Scienceguy) on the DPselfhelp forum that said it was no different than drinking water - zero effect. So this might encourage those who are afraid of trying this med. Otherwise (even though you have already adjusted and made a successful life), hope you find a solution...

Are you taking Wellbutrin, Wellbutrin SR, or Wellbutrin XL? And how much, how often?

Keep your money … lets see if the forum as a team can come up with some things that might help in working with a doctors.I’ve looked up many topics including brain injuries. But some of the best information is found when specifying PD in a search. Google parkinson's visual dysfunction http://brain.oxfordj...10/6/1675.short "These data suggest that not only is the visual system affected in PD, but that dopamine may have an essential role in receptive field organization in human vision" http://www.neurology...5/12/1907.short "Impairments in visual attention and spatial perception predicted worse cognitive function. Worse performances on tests of visual speed of processing and attention, spatial and motion perception, visual construction, and executive functions … Patients with mild to moderate Parkinson disease showed impaired visual perception and cognition compared with elderly control subjects. Visual dysfunction contributes to parkinsonian disability through its influences on cognition and locomotion" http://jnnp.bmj.com/.../4/419.abstract "…impairment of visual cognition …" http://www.sciencedi...01346949290051I "the effects observed after therapy confirm that abnormal contrast response functions in PD patients are linked to dopaminergic deficiency." http://onlinelibrary...090510/abstract "We conclude that the dopaminergic deficit of retinal amacrine cells in Parkinson patients can be monitored by combined low-contrast and motion (displacement) stimuli" http://www.sciencedi...353802003000221 "Visuo-cognitive impairment is prevalent in PD" http://www.sciencedi...474442209700687 "The role of dopaminergic drugs in treating the various non-motor problems of PD, although clinically recognised, has received little attention. In this Review, we investigate the dopaminergic basis of the range of non-motor symptoms that occur in PD such as depression, apathy, sleep disorders (including rapid-eye movement sleep behaviour disorder), and erectile dysfunction. We discuss the evidence that these symptoms are treatable, at least in part, with various dopaminergic strategies …" One problem is that you need to purchase most articles - $$$ that few of us have. But at least the abstracts show a connection between dopamine and visual problems (and others) that many HPPD suffers have. It might help at this point if you quickly list your main HPPD/health symptoms. From this we might be able to hone-in on some approaches to use with your doctors. As an example, you mention pain and spasms in other places ... unless these are from a known injury, they may be dopamine related. [For me, visual symptoms of PD worked as a start. Once results were in, it quickly grew into acceptance with medical professionals, though now it is spoken in terms of encephalopathy affecting dopamine systems.]

Jay, You don't notice any positive effects yet? (figures, you find a doctor that who will actually try to help ... then it doesn't work) Do you have an negative effects?

Apparently, it has been an unknown - doctor's haven't thought of trying it.

It depends on what dopamine med you are using. Sinemet has been in use since the late 1960's and isn't particularly toxic - especially on doses that might be effective for some HPPD symptoms. http://en.wikipedia.org/wiki/Treatment_of_Parkinson's_disease There are (and were) meds that, long term, can cause fibrous growth on heart valves - requiring surgery to replace valves (ergot derived meds). Selegiline ( MAO-B ) is a mild med but take it with ANYTHING that increases serotonin or norepinephrine and you'll end up in the hospital in serious trouble. There are COMT inhibitors that are liver toxic and only used if a person doesn't respond to anything else. There are anticholinergics that help some (balance the ratio of dopamine to acetylcholine) which has it's various side effects. (this imbalance may be one factor in having so much anxiety with HPPD) As far as the drug trials went, the people that did it aren't supposed to say what the drugs were. But, reading through the posts, some had no benefit, some had benefit but felt unpleasant stuff as well (perhaps too high a dose?), some benefited for a few hours (higher need?), and then some felt better for a few days (ideal). So, back to Sinemet, it's main problem is large dose over years. Otherwise, as far as meds go, it is pretty safe - see Jay's post

Nice post. 40 pints a week over time will damage the cerebellum which contains 1/2 of all the neurons in the brain. Noticed on the PD forums and with brain injury people that it is important to drink only modestly if at all. Actually, keeping your body in good shape is important to prevent progression of disorders.

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)!

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?

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.

There are two major separate visual systems. One, Ambient Visual Processing (where we feel), is high speed and connects to midbrain including amygdala (fear response). The other, Focal Visual Processing (where we think), is slower and where we place attention. Perhaps your ‘evil feel’ is the ambient system on overdrive. Have you tried anti-anxiety meds? Or anti-seizure meds?

There are eleven studies showing benefits with L-dopa/carbidopa for treating amblyopia Holy smokes ... can you post the links?

IMO what is happening is your 'stuck in a shitty state' neurons are now free to work again because they now have enough fuel to overcome whatever the problem was that 'jammed' them. This concept should help people get an idea about 'dosing to enable' not 'dosing to overpower'.

The opioid receptors are 'sisters' of the dopamine system. As is oxytocin. These three are a big time limbic motivational trio. As for the eyes, the parasympathetic nervous system is affected by a dopamine system. I also have a small problem with one eye being sluggish this way. There is even a very small change in heart rhythm (not harmful) connected with PD and research is being done to see if this change can be used as a test for very early PD. Lots of really interesting stuff. Here is a little blurb yet to further investigate about pupils: http://en.wikipedia....i/Adie_syndrome When I cycle, I usually take just 1/2 pill for a week or two, then none for 2 weeks. Then startup again with the standard 2 or 3 1/2 pill each day for 3 months. I love it to see the progress and I hate it because I still need it.

Yay - 3 out of 4 new ones respond favorably. Hope you slept well. Any change in your visuals? Do you have DR?

I hope so too! 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.

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.

There are people with PD on Sinemet for decades. Some even have the progression of thier disease virtually stopped. Early treatment is an important factor, as is general health. There are others where it advances rapidly. The 5 year effect for these is basically that the dopaminergic neurons are so shot that more is needed. And there is little more to offer. At this point they start taking COMT inhibitors http://en.wikipedia..../COMT_inhibitor. Also, brain surgeries and electrodes. If you read about Michael J Fox you can learn about advanced PD - nasty stuff. It is common for meds to loose effectiveness over time. Using Sinemet for RLS usually only works 2 or 3 years. The long term use of DA for our type of dopaminergic problems (for those who do respond) is yet to be discovered. For me, every time I cycle off and back on, it becomes more effective. And there is less need of it for visual functions. However, there is need for depression and functioning ability. One of the most important things about this med (and many 'brain' meds) is to find the smallest effective dose that you can take. Also, cycling every few months. I attribute this, along with CAM therapies, as why there seems to be some actual healing. Several doctors are confused by the fact that there has been some healing. Of course it is impossible to say for any given individual. And if you treat your body well (food, rest, friends, exercise, no 'trips', ...), time is a healing factor - your body wants to be well ... the best medicine possible.