VisualDude

What is OT? While the brain does create new synapsis, you never want to fry out the existing ones Try to post all the 'guinea piging' so as to help people. Most haven't got to try lots of different meds - it is a pain in the ass to get good things prescribed. As far as visuals, it seems that overall contrast control is better in a way ... and worse in another. The 'better' is that the adjustment for seeing in different lighting situations (which improved greatly with Sinemet) is even better. The 'worse' is that contrast seems a bit higher which borders on the 'shimmering'/'glassy' type of descriptions you sometimes hear of. It is hard to describe since it isn't shimmering and it isn't glass. And perhaps DR is slightly better. A plus for non-visuals is that I seem to get an addition 1/2 hour of functioning before the gray matter locks up. All of this is subtle. Definately think this is good exersize.

Was thinking how to describe what has improved with movement (am mainly focued other things). One thing that is better with or without the meds is smooth movement of fingers. In particular when opening the hands. For example, while (trying) to play guitar, when releasing a string the finger tends to pop-up irregularly which can mess up timing. Perhaps the best word to describe this lack of smooth movement is cogwheeling. Instead of smooth motion it 'ratchets'. Again as described earlier, this problem is greatest if there is no weight or load involved. As for position dependent tremor - it goes away briefly when increasing dosage. It seems to need around 5 pills a day ... which I will NOT do - since 99% doesn't need it, increasing the dose is not justifiable.

IMO, yes and yes

Lots of doctors around here use Sinemet for RLS (but more often use Requip). It tends to lose effectiveness after a couple years (so I am told). Sometimes they use Keppra to extend this. Also, there is a drug trial going on to see how Keppra helps dyskinesia. The med that helped my RLS the best was Selegiline - yet another topic. Dyskinesia is possible with all dopamine increasing meds. It is the highest with levodopa for people with advanced PD - some say 50%. However there are people taking it for decades without problem (and their PD doesn't progress much). In general two things seem important. 1) Early treatment can greatly slow progress of disease. 2) Often they try to use other dopamine agonist before Sinemet and use them with Sinemet to reduce the amount of Sinemet needed. If I use Wellbutrin then I need less Sinemet - but my brain is a strange creature. Largely my fears of dyskinesia are gone. Its been 3 1/2 years so far. Dosage remains low. And for people with PD, the dyskinesia bothers the caregivers more than the patients (so I've read). I think some movement problems are better and some tremors are slightly more - it is all so subtle you just get used to it all ... and paying too much attention makes one a little OCD. Low doses of this med greatly improve my life so am happy with it (though it galls me to 'need' any med). I requested a PET scan and emails to this organization in UK (www.viartis.net) said they are excellent for unusual cases. But doctors here thought the problem to be diffuse and thus would not show - it seemed clear that around here they don't know how to use this scan well so it seemed best to forgo a years background radiation, lol. It the end they know the types of meds I do well with so there is no further need for imaging. There is ONLY ONE WAY to know for sure about Parkinson's disease - autopsy. About 30% of prior diagnosis are incorrect. And many with non-motor problems do not get diagnoses with PD because it is classified as a movement disorder (yet 25% do not have significant movement issues). Yes Parkinsonism is very different that IPD. It also has the most cognitive problems ... and cognitive problems have little success in treatment. IPD is very predictable on how it will progress (though the rate varies) ... 30% of IPD people have Lewy body disease. The significance here is that PD does NOT cause dementia but Lewy body disease does. In the end very little is understood about the brain.

He was actually inspired by Freud (shows what a good shrink will do for you) Some ironic trivia: "In 1980, Dalí's health took a catastrophic turn. His near-senile wife, Gala, allegedly had been dosing him with a dangerous cocktail of unprescribed medicine that damaged his nervous system, thus causing an untimely end to his artistic capacity. At 76 years old, Dalí was a wreck, and his right hand trembled terribly, with Parkinson-like symptoms" http://en.wikipedia.org/wiki/Salvador_Dali

I say an increase in tremor because I’m sure I’ve always had a slight tremor, probably something known as essential tremor which is a benign condition. I know my brother’s hands shake, and my uncle’s do too. I also remember thinking years ago I could never be a surgeon because I can’t keep my hands still Yep - this is my history too. One nephew was a dentist and had to quit. It is hereditary seen only in male members of the family. Essential tremor is a bit odd in that there are about 20 different types of it. Also, it often responds to Propranolol and even alcohol and very rarely responds to Sinemet ... the latter is often used to diagnostically distiguish between early Parkinson's verses ET. Also, ET is near always bilateral whereas PD often is more prominent on one side/areas (unilateral). Coffee has no effect for me. But anxiety did. Low blood sugar and/or low protein are the biggest things that increases ET shaking. Around the same time the tremor started to get better I started to get twitching in my left hand and left foot ... Sometimes (not all the time), if I put my hand in certain positions I can get the fingers to shake uncontrollably Yes and this developed a couple months after visuals started. This will change depending on, not just an 'unstable' position but also the weight in the hand - empty verses holding a mug. If hands are at rest - no tremor. Some of this gets complicated - I have 3 movement disorder diagnosis - RLS, mild ET, and mild Parkinsonism (this being connected with HPPD stuff) Let’s hope it doesn’t resolve the fasculations Don't be afraid if it does. Given our possible similarities, I would predict that at first you will find benefit but also a 'shifting' of your tremor/spasm symptoms. This is not bad (nor does it mean you have PD). It would be a natural responce of the brain readjusting to having enough 'fuel' for a change. As far as tremors, twitching and fine muscle control - these changed with me ... and whenever changing dosages there would again be change/adjustment. One neurologist freaked out and told me that levodopa was a dangerous drug and even causes healthy rats to shake. Another said, "Your brain has to relearn what is normal" and that my experiences were very positive signs (no wonder some people just give up trying to get better). And of course Jay's neurologist said that it is safe to take low dose Sinemet even for life. Over time, these fluctuations with dosage changes became less and less so that now there is very little change. Also, depth perception did the same changes. Started with 2D vision, then super 3D vision, then variations of how 3Dish. Now there is very amost no depth changes with dosage alterations ... but there is some depth shifting with Gabapentin dosages. Through it all, it was clear from the start that progress was being made. I tell this so you to encourage you - so don't worry Do you have any changes in sence of taste or smell? Do you have spasms or tightness in the center of your back? Do you have mild coordination difficuties (a bit clumsy)?

My ghosting was a little better after some vision rehabilitation exercises (mainly staring at a blue circle for 20 mins a day). Later had a session of 'excessive brain activity' and it got worse. Mainly in left eye. Least bothersome in bright sunlight. Most noticeable in low light looking at LEDs or other such things. Perhaps strangest is that it takes a few seconds to develop fully - initially looking at a 'dot' it is one but it becomes two then three. Computer doesn't affect it. The eye lid could be something. When gently touching certain areas of the eyeball, the dots can converge back to one (no more ghosting) ... but it is impractical to walk around with ones finger stuck in there eye (but who knows, we could start a new fashion trend). Some possibilities are, Astigmatism. The changes according to lighting (changes of iris aperture) would strongly indicate this. However, eye doctors should be able to detect this (as yours has). Also, why would it change with HPPD? The brain is more sensitive (common with lots of HPPD symptoms) to the multiple signals? Also, why did mine improve when doing exercises specifically for retraining the coordination of Ambient and Focal visual processing? Ocular Microtremor. (Going out on a limb here). The eye normally vibrates continuously ... very fast and very slightly. If this was altered, then signals to the brain would also be altered. Since eye movement is connected with the mid-brain and so is Ambient Visual Processing, coupled with possible dopaminergic neuron problem for some with HPPD - this could be related. Note, the mid-brain area uses lots of dopamine. The brain is just processing visual info wrong. Self explainatory. As far as the changes from touching the eyeball (the eyelid thing with you) ... this could change the shape slightly (astigmatism) ... could 'still' excess vibration (microtremor) ... or could simple elicit a response from the changes of data from the retina to the brain. Evidence for the latter can be seen from CEVs - people can create them without drugs simply by gently pressing on the eyeballs ... this seems to provoke the brain into trying to interpret the unusual retinal info. Anyway these are some rambling thoughts. Thanks for the Rolladenphänomen info (however everything I look up so far is German). BTW IMO Dali was a great artist. Wonder if this lady also has problem with the left eye?

Likewise with myself - there is absolutely no connection with visual symptoms and anxiety (or other emotional states). Yet some on the forum experience a strong connection. Either way, if a person has chronic anxiety - they have got to get rid of it.

I tried Sinemet CR but it wasn't as effective for me. Haven't tried XL. (generally avoid XL since you it is not safe to cut the pills for smaller doses ... and larger dosing is often too much) Sometime ago read that CR is best for very early Parkinson's whereas advanced Parkinson's does better with standard. IPD is actually very different that Parkinsonism.

It is good to get documentation that you are not simply nuts (the common answer doctors have instead of admitting 'I do not know') Too bad you could do the drug trial without Klonopin (thought a person had to be off all meds) but it is understandable in your situation. As far as benzos - they can be a lifesaver yet the medical community is deeply split. Some doctors are scared to death of them. Others prescribe them often and there isn't any real problem (other than never make sudden drops). There should be a discussion of the grades of HPPD This would help both research and each individual looking for help. It would be helpful if there was a chart or table of symptoms ... as well as pictures to help people to communicate (standardize) their symptoms - much of them are difficult to describe (even between ourselves as fellow sufferers). As far as drug trials go - there is a wealth of information that can be gathered empirically (trends) without going 'reductionist crazy' - the brain is too complex to be distilled down to one possiblitiy. Overall you seem to have had a productive appointment. And yes, he must be around 70 so won't be available forever.

Depakote did nothing other than slightly calming. Keppra sometimes helps but have difficulty with it. Very mood destabilizing. Perhaps the time-release version would be useful but too much $$$

Currently (with doctors blessing) am trying low amounts of hydrocodone - 1/4 pill 3 times a day. I do not find any dopamine effect (improvement) on visuals. There is in fact an opposite effect in acuity (sharpness). Vision is not so clear, but this resolves if I skip a couple doses. It isn't bothersome as reading, etc are fine. Also with less sharpness, ghosting (while the same) is less bothersome. DR is also less bothersome. Nonvisual effects are that I can function longer each day. Also breathing is easier (antitussive). When taking this I don't need any anti-siezures (so only take Sinemet). Generally 'feel' better (mood stabilizing) but depression is a little bit worse.

Did he give any indication whether meds such as Klonopin help in this recovery?

Interesting that Atarax reduces serotonin (opposite of a SSRI)

Guess I don’t understand why this info is scary As far as drugs go (recreational or prescription) problems are largely connected to amount taken. Seems that many people can occasional take some amount of recreational drugs for years with no obvious problems. Only a few are permanently altered with a few ‘hits’. But lets pick on dopamine, plasticity and ‘damage’ How much Meth is safe? According to propaganda you see pictures like these - huge dopamine hits. Have the brains of these people been altered? Some definitions (from Google) damage "Physical harm caused to something in such a way as to impair its value, usefulness, or normal function" brain damage "Injury to the brain that impairs its functions, esp. permanently" encephalopathy "A disease in which the functioning of the brain is affected by some agent or condition (such as viral infection or toxins in the blood)" hppd "a disorder characterized by a continual presence of visual disturbances that are reminiscent of those generated by the ingestion of hallucinogenic substances." Are brain functions altered while ‘high’ from drugs? Once the drugs have cleared the system, are there any residual effects? Could the desire to take drugs again be a residue effect? A learned experience (plasticity)? Which drugs and what dosages are safe? Few suffer HPPD for a little while. Fewer suffer HPPD for a long while. Have there been any structural changes to the brain? Remember learning is a structural change. Generally with the body, if there is too much of something it reacts by trying to reduce it. This is true with sugar, insulin, thyroid hormone, testosterone, cortisol, dopamine, serotonin, norepinephrine, etc… Likewise, with too little an effort will be made to increase it. Eventually the body reaches homeostasis (balance) or the best it can do. If hormones are too high for too long, then the receptors change, such as ‘insulin resistance’ or ‘cortisol resistance’. This gets all the more complicated with changes in the body being only in some areas but not in others. If neurotransmitter levels remain too high then structural changes happen. Plasticity occures by neurons deliberately increasing neurotransmitters at certain points to 'wire' in the change (cause structural changes). So systemic levels from drugs could cause this effect in unexpected areas. Sometimes structrual changes from 'overloads' are very negative – excitotoxicity being to worst (burnt synapses and/or neuronal death). So where does an individual with HPPD stand? Do they have altered brain function? Is there synaptic damage? Is there plasticity that has simply changed the way the brain in now wired? The DNA blue print ‘wants’ things to be ‘normal’. Provided that genes have not be ‘silenced’, it will work to fix changes ‘sensed’ on the molecular biology level. There are already studies indicating that LSD silences some genes. It seems impossible to know for sure. So what can a person do? Living ‘healthy’ gives the body the greatest possibility to repair. It is very important to address chronic anxiety since this IS damaging to the brain and body. See Why Zebras Don’t Get Ulcers by Robert M. Sapolsky One can do ‘visual rehabilitation’ to try to teach the brain the way you want it to work. One can try prescription drugs to attempt to restore normal functions. It seems that Klonopin helps lots of people but I haven’t heard of reports of permanent changes. And discontinuing is often unpleasant. My experience with dopamine agonists seem unique in that some areas have been permanently improved (permanent being defined as persistent improvement even without the meds for weeks). But there aren’t many here who have tried it. And those who have a positive response have so far expressed concern about discontinuing and perhaps loosing the benefit altogether. Did dopamine ‘unjam’ stuck neuronal circuits? Did it fuel the brain to reroute certain functions? It took only a few hours to notice improvement. Merkan said that in 15 minutes of ½ pill of Sinemet 25/100 he felt its effect. In 30 minutes began to cry since for the first time in over 4 years he could feel again and his vision sharpened from a blur. It helps his DR (but doesn’t for me). He is also taking Klonopin and Keppra. There is nothing simplistic about all of this. Vision is complex. Perception is complex. The whole brain is complex. HPPD is complex. Life is complex – so there is little to fear. Each person must decide how to manage their condition. It is understandable that there is reluctance to try drugs to get better "once bitten twice shy". And doctors often respond with SSRIs and/or anti-psychotics – meds that do not have a good tract record for HPPDers. Learning about how the brain functions should not be frightening. But if it is too squeamish, then perhaps it is best to occupy oneself with another topic. Really, other than personal interest (hobby or profession), the only reason to try to learn is because very few doctors have time to adequately help a person – you often have to do all the footwork. The most important thing is to try to live ones life the way they wish, and not get swallowed in the negatives of the current situation.

Gmo, that is ghosting Loky, it does seem to be affected by the distance of the object It seems so much like an astimatism - yet that is something an eye doctor can readily identify. Another posibility is 'binocular conversion' problems (which would involve mid-brain dopamine areas). But it really seems to relate to some weird combo with starbursts and positive afterimages. Question to all with this problem: Do you also have starbursts? Do you have any positive afterimaging?

Ok, can you describe the muscle twitches? Did these start the same time as everything else?

I agree with Jay. Give yourself time without any med.

Can you describe this (hyperaware ) nerve pain in more detail?

The main med that has been helping me is Sinemet 25/100. Some visuals improved right away, others slowly.

One of the symptoms was feeling a vibration. At first thought there was an earthquake going on ... but the vibration seemed too fast ... finally realized my whole body was shaking fast.

Thanks ... hadn't heard that one. But, flat out, chronic inflammation is damaging to health. (And ibuprofen is a lot safer than smoking ) Inflammation in the brain is excitotoxic and just plain loads down the whole metabolic support systems that keep cells health. As a side point, chronic anxiety causes inflammation ... this is one reason why some people get better as they get their anxiety under control. And there are a few member who report their symptoms are affected by their emotional state.

Two days isn't very long but at least to feel better. As you notice, it worsens visuals. You just have to decide which situation is better. For me, both halos and blurry are greatly improved by increasing dopamine (with meds). Zoloft increases serotonin which tends to reduce dopamine ... this may explain your experience. Do you have DP or DR? Please keep us posted on how things develop for you

Morbide, It sounds like you are on the threshold of getting better (keep up the good work) ... which most do. Your "orgasm + a cigarrette" remind me of the dopamine system and the possible use of dopamine agonists to treat HPPD (a subject I harp about). Orgasm involves dopamine reward. Cigarettes have nicotine which binds on acetylcholine receptors (acetylcholine and dopamine have a push-pull relationship in a lot of brain systems). A curious anomaly (but not an endorsement) is that cigarette smokers cut the risk of developing Parkinson's disease (a dopamine shortage disorder) in half. HPPD is more complex than just a dopamine shortage. But there seems to be emerging info about the relationship and use of dopamine meds to help.