VisualDude

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?

Usually Neurologist are the ones that deal with Sinemet. In the USA, the FDA's approved use is Parkinson's Disease or Parkinsonism. Some doctors will off-label it for other things such as RLS. Perhaps an angle to discuss is 'Parkinsonism w/o motor symptoms'. That is, (whether you believe this terminology or not) you have a mild brain injury affecting dopamine pathways in higher cognitive function. This is the angle I've used - though I do have an 'official' brain injury diagnosis. If you have RLS, then throw that one out as well. Neurologist are odd fellows. Most do expensive tests to tell you what you don't have and then they do nothing. If you can find a doctor who treats brain injuries or who is involved in research, it might work out better for you. As for cost, the Generic is around $90 for 90 pills. But I've got it as low as $32. And 90 pills last 2-3 months. What are your visual symptoms? Do you have any body symptoms?

neurotransmitter/neuronal circuits not functioning correctly - describes HPPD and a whole bunch of disorders. By the way, it is best to stay below 3 pills (25/100mg) a day - though it can be taken up to 4 pills. PD people have to use other formulations to take more (up to 10 pills)

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.

Thank you for the explanation and video - great contribution to science. Curious, as a kid I used to press gently on my eyes and get stuff like your video - except very tame.

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?

I take the same dose as Jay does x3 daily. I also take Tramadol 50mg as needed for headaches. Usually equaling to about 200-300mg a day. That’s a lot of Tramadol. I use it too but more often Hydrocodone. Both reduce contrast just a little. Do you notice any changes in headaches since Wednesday? Any changes in muscular pains? My anxiety is my worse symptom, has it any effect on that? I have very bad anxiety. Sinemet cuts it about 75%. I'm flipping out right now but so scared it might not work for me It is understandable – dashed hopes are painful to the point of not wanting to try things again. Whether it will help you depends both on your particular self and the types of symptoms you experience. A key point about using Sinemet – it fuels dopaminergic neuro-circuits. These circuits are ‘automatic adjustment’ in nature. When dopamine is too low, they get stuck. So, visual acuity, contrast, depth perception, halos, motivation and even anxiety (Amygdala) are some of the most likely to respond. More complex issues such as flashbacks and seeing geometric patterns are less likely to respond – but it going to take trying to know. I should probably post more about these different categories. The important thing is to not give up. Happily DA are pretty safe to take. Do you have a post somewhere listing your symptoms?

Thanks for posting the detail. It really helps. A lot of your symptoms seem more complex than dopamine dysregulation. Still, the Wellbutrin is helping other areas and may trickle to some of these. What are OEVs? Any pictures? Still trying to understand CEVs? Any pictures of these?

Interesting that it helps dissociation for you. This is what Merkan says. For me, there has been no change in DR, though the DR is mild. How much Sinemet are you taking right now? Also, are you taking any other medication?

Wow, you are in a rough patch. Now that you have been at the clinic, are they going to help in other ways such as increasing your pension? fatigue, sweating episodes, joint/muscle pain, bowel problems, tender lymphs and aphtae (sore throat) – sounds like CFS http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

Wow, speechless. I’d ask how you are with a little bit of coffee – but better not try. Most peoples’ hands turn into claws when they don’t have coffee. Didn't have any success with it. I think Timer uses it, though it didn't help visuals, he can think clearer 　 Good to here that Wellbutrin is agreeing (and helping), though not HPPD I get this filmy haze on the eyes. Tried OTC antihistamines as well as several prescription ones. Only one helped, Patanol – and after 5 days it becomes ineffective and have to stop for a few weeks for it to work again. All DA tried, including Wellbutrin, helped. Do your eyes hurt/ache? Can you list your visual symptoms?

define: disorder noun 1. A state of confusion 2. The disruption of peaceful and law-abiding behavior 3. A disruption of normal physical or mental functions; a disease or abnormal condition verb 1. Disrupt the systemic functioning or neat arrangement of 2. Disrupt the healthy or normal functioning Take your pick

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.

Catching progression of HPPD early on It is important to take all possible actions as soon a possible. Most of us have had early warnings. And many have had progression for weeks or even months after the first signs (even with the cause removed). It comes down to ‘healthy living’ – each well, sleep well, exercise, quiet anxiety, cultivate friends and have fun. Do not take recreational drugs, limit alcohol, avoid smog, cigarettes, chemicals, etc. CAM therapies can be helpful to blunt the progression – though this is a very long subject. And there are a lot of ‘snake oil salesmen’ out there. Whether a person chooses to believe HPPD to be a brain injury or not, pursue modalities that you would for brain injury.

First time in my life that ive had high blood pressure recorded occurred today, funnily enough it was 139/83 See what your blood pressure is over time. Often it is higher when visiting a doctor. My normal ranges between 100/60 and 120/80. But it has read 140/80 at times - and there is no sign of cardiovascular disease. As a side point, Sinemet is known to lower blood pressure - although this is not the purpose of the drug. It is like you need the 'gain' turned down on your brain This is kind of what benzos and anti-seizure meds do. Probably booze as well He is writing to my GP and is prescribing that I take Beta Blockers for this as a first point of call This is not unusual for a neurologist to try since "beta-blockers are the most widely used class of drugs in migraine prevention" - http://www.medscape....rticle/429680_3 Some view visual disturbances are ‘persistent migraines’

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 ...

I've tried 5 different dopamine (DA) boosting meds. Sinemet seems to work the best You mention that caffeine affects you - this more directly involves epinephrine and norepinephrine (NE). 90% of NE is found in the locus coeruleus, which is involved in control of mood, attention, sleep (and a bunch of other stuff). There is a close relationship between DA and NE ... as you can see from the chart below, it is actually made out of dopamine. When you say caffine bothers you, do you mean just coffee? Or even coca cola? Or do you mean an energy drink?

Do you think that the Sinemet is helping you to reduce Klonopin? In some parts of the brain, dopamine regulates a lot of gabaergic neurons. Also, Sinemet reduces anxiety for me (though that isn't an 'advertised' effect of levodopa)

No need to appoligize. Sometimes it is this odd stuff that ‘clicks’ and helps people (and doctors) make a diagnosis or at least explore it. Now your vision went bad 5 years ago right? So are you saying it got worse about a year ago? The way these pains present really sound seizure like. Have you seen a good neurologist? [Note: it is best to find a doctor who is also involved in research – they are more open and alert to the weird things we suffer] Dopamine helped night vision, contrast, depth perception, color, frames & trails, and auras right away. Does anyone have pictures of CEVs – I don’t really know what they are. Is this an example? http://hppdonline.co...__fromsearch__1

Well, keep up your spirits. It helps a lot to know others have similar problems. When people think you are making it up – it is depressing, isolating, and increases anxiety. There are lots of people having symptoms beyond visuals. Your symptoms being more severe on one side than the other certainly indicates some weird injury. Since doctors don’t see anything on their tests (have you had EEG, MRI, etc…?) it is good news since it means the problem is minor – even though living with it is not minor. Some stuff you relate sound like very mild seizure type stuff. The best thing is healthy living: good food, good sleep, no recreational drugs, exercise, and friends. And finding ways to rehabilitate parts that are not working so well. You are probably already doing this stuff. I also have tinnitis. One rehab treatment for my eyes involves looking at a dim light in a dark room. Within 2 minutes, tinnitis grows loud. It does this only when looking at green or blue, but not red (another of life’s oddities). Getting your anxiety under control is important. Not only does it feel like hell, it continues to put a stress on your brain and body. You already mention this being a problem. I suffer terrible anxiety that docs say is from a brain injury and not purely psychological. And take meds to help. This may be something to consider – though be cautious about SSRIs or anti-psychotics as these don’t usually help HPPD stuff (though a few are helped). What have your doctors said?

Oops , posted in wrong stop

This vision stuff has its moments. When first seeing your post I only read, "Dry, itchy ass" and thought, boy this guy is comfortable in speaking … lol As for the "eyes", I get a histamine(?) reaction that is like an oily film that won’t wash out. It causes a diffusion of light like cataracts. This goes away with Sinemet – which seems strange. Also, if stop this med suddenly, the eyes will burn for a few days. With Parkinson’s disease (a disorder involving insufficient dopamine), there is an ‘oiliness’ in the upper body. "Parkinson's patients may notice that they have developed greasier skin, especially around the nose and eyebrows, and a greasier scalp" - - http://www.streetdir...ns_disease.html This is not to suggest you have PD, just that there is a possible connection here with dopamine. This neurotransmitter seems to be involved with HPPD. Elsewhere you mention pain problems that started. What are these? What are your visual symptoms?

Would you describe you chronic pain in more detail?

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 ...

I asked because when starting dopamine agonists for visual symptoms, it was a big surprise to get relief from 'tautness' and discomfort in the body. It is well understood that with motor problems such as Parkinson's disease, damage to dopaminergic neurons are the source. It is treated with Sinemet and other dopamine increasing meds. Since HPPD can respond well to increasing DA, it stands to reason that the malfunction with vision also relates to a lesser problem in muscle tone or control --- need for more dopamine.