VisualDude

Boogres is right – that you HAVE to live your life healthy (food, sleep, exercise – physical and mental, socializing, work on positive attitude, no drugs, blah, blah, blah…) While it has been 4 years, here are a couple points of encouragement (for all) #1 – Have peripheral neuropathy (numbness in parts of body). It had been during the first year of this HPPD crap. Saw the leading Neurologist in my area and he said that since it had been so long, there was no hope of repair. However, I found a way to heal it (which also helped my eyesight as well). So it is never too late to get better #2 – Had visual distortions over a year. Even seeing in frames about 1 second apart. In a year’s time of ‘healthy living’ and all sorts of pills, acupuncture, etc., this had barely improved. A few hours on a dopamine agonist and it was noticeably better. By day 7, the frame rate went down to ½ second. Vision became sharp, halos reduced and contrast problems improved. So it is never too late to get better. So, at the annoyance of repetition, as long as you are alive, it is never too late to get better. Wish you success...

Again thank you for the info. It seemed that some others reported seeing changes with visual symptoms quickly with and dose change (hours or days) With my doctors permission, have been doing an experiment on self with Klonopin. Previously have never taken more that 1 mg in a day. The only benefits from it have been anxiety and seeing black better (the latter is helped with Sinemet alone sometimes, but best with Gabapentin and/or Klonopin added) For a few weeks my Klonopin dose has been 3 mg / day. One week at 4 mg / day. Stopped Sinemet for the first 2 weeks. However, the effect at these higher amounts are identical with 0.5mg per day. Other than the small above mentioned items, there are no effects on visuals at all. Was hoping to see if it would reduce ghosting and these spider-web-like-filaments that I can see at night. One positive effect is that it gave me more energy and better cognition - of which I became more active and wore myself out . This happens with anti-seizures for me. One negative effect was that when turning the light out at night, got some very strong strobing for a few seconds. Will be completing this test when the bottle runs out in about a week (and yes have another lower dose one to care for any tapering needs that may arise) It only seemed fair to try the effects of Klonopin (which so many use) for HPPD, since I've continued to promote Sinemet for 3 years. Perhaps this helps explain why this topic was started. It is important for members to document their experiences with how medications affect their symptoms - it is one method of 'diagnosis'

You probably already read the comment from Jay's neurologist http://hppdonline.co...-sinemet-trail/ but no technical literature was indicated. Since it isn't addictive, perhaps that is some comfort to you. The problem is that 99% of the time, Parkinson's Disease is progressive. And this is the main use for Sinemet. I've read of people taking the same dose for 25 years without the disease progressing or with any need to increase the dose though this is rare - If I can remember the case, I'll send it to you. Such cases are rare, however the underlying facter is early treatment - detecting the disease early. Most people need increasing doses which, as they become large, cause side effects. It is important to remember that with PD, massive damage to dopamine systems has happened. Before any motor symptoms show, the patient has already lost about 75% of all their dopaminergic neuron function. That is like taking a bridge, removing 3/4 of its structural supports, and then expecting it to not sway. And this is EARLY PD. So it is difficult to support the remaining neurons when they have to carry such a high metabolic load (400% as much as they were designed to) - hence progressive degeneration Because of these above reasons, there is probably limited liturature about remaining on low dose Sinemet. But, we will keep our eyes open to try to help But do remember, the level of and/or the nature of how our dopaminergic systems have been altered is different that PD. While there are reports of some degeneration, many here report having HPPD for decades - some the same, some a little worse, and some better. [ Such is impossible with PD ] If I remember correctly, you once spoke with Dr A. Perhaps he could provide you with more info.

Thanks Jay. Did it take long for you to notice the reductions (hours, days, weeks, months)?

Facinating - thanks for this info They are both generics (Sinemet has been around about 45 years).

Well, MDMA does affect a lot: + Dopamine - visual, motor, and reward processing (increase sex drive) + Norepinephrin - focus, attention, improved emotional engagement, reduce learned fear associations + Serotonin - relaxed, feel good, feel safe + Prolactine - increase lactation, reduce estrogen and testosterone (decrease sex drive) + ACTH - increase corticosteroids (adrenaline) + Oxytocin - increase social bonding ('love hormone') + DHEA - increase estrogen and testosterone + Vasopression - increase water retention - Decreases amygdala activity - reduce anxiety, affects memory formation Its no wonder many people like it. But a lot of these effects are contraditory to each other - so it really puts the brain and hormone system throught the hoops. Like many things, large amounts 'fry' your neurons or at least rewire them. Small amounts have been used medically for pain relief and mild psychiatric disorders. Some people claim it is completely safe. Others say they developed HPPD from it.

Yea, its crazy stuff - but then life is crazy ... sometimes that is the fun of it Just as we can get confused, so can the brain - but not much fun then. Just as you are about to fall asleep, it changes its mind. Wonder if this guy had tinnits?

Dextroamphetamine is about 75% Adderall and the rest some other stuff. Haven't tried it. It is clearly harsher than Sinemet since there are reports that long term use of Adderall and/or Ritalin may double the risk of developing Parkinson's Disease - of course the jury is still out about this. Have taken Selegiline, http://en.wikipedia....wiki/Selegiline, which is and MAO-B inhibitor which (oddly) combines mild amphetamine and mild methamphetamine. It is used in early PD. Also for depression. It reduces or delays the onset of PD. I found it mild but helped in all ways that other dopamine meds do. Don't know much about what the community says about Adderall and HPPD (amphetamines usually refer to street drugs), but a few on DP forums claim Adderall helps depersonalization and derealization. Street drugs such as meth and cocaine can permanently destroy your ability to feel pleasure. Asked a doctor recently about this since there was a fellow who had used cocaine a lot and now feels no pleasure at all - and craves the drug constantly. The doctor told me this is rare since these drug users usually end up killing themselves with overdose trying to feel good again. Ironically, I have a brother who has used cocaine several times and said it never did anything for him. He is still alive and kicking and occationally uses weed. So it is hard to know. But for certain, street drugs are much stronger than what doctors prescribe. So you took Dexamphetamine before HPPD and don't know how it will affect you. Generally, all amphetamine and methaphetamine drugs can over stress dopaminergic neurons. Yet very small doses can be useful. Across the board, dopamine helps these conditions mentioned. I'd put my money on Sinemet. But haven't tried what you have. Sinemet is certainly milder in nature - which one would think a plus since you are try to help the brain, not overpower it. Of course the questions remains, will it help your HPPD? And will your doc work with you on this? Please let us know how he responds to the idea of low-dose Sinemet. And if you benefit. Hope this helps. Whatever choice you make, wish your success...

Can you describe what this vertigo is like for you?

Bump

I tried Inderal for evaluation and is was calming but did nothing else useful. And with a 10% chance of causing erectile dysfunction - this would definitely add to depression (I've got a wife to please. ) Sounds like you had a good conversation with Dr A - it is unusual for a doc to spend 20 minutes interviewing you at no cost. Be sure to make a list of meds you have tried and how they affected you - both HPPD stuff and otherwise. This will help the doctor. Perhaps pictures of what you see may help - he will lead the questions but everything that makes for clear communication (something often hard with brain stuff) will help your evaluation. Haven't got a hold of Piractam to try yet - but there are so many possibilities. Generally, cognition is more connected with norepinephrine and dopamine. Often our cognition problems are actually a manifestation and attention and focus. As you mention out-of-sync, do you find that sluggish or delayed good be apt descriptions (at least partially)? Dis-association including... - can you explain this a little better? Do you have other symptoms not so typically HPPD? - tremer, numbness, fatigue, muscle control differences, speech changes, changes in sence of smell.

Yea, the old light-at-the-end-of-the-tunnel Don't laugh too hard, but there realiy a condition called, "Exploading Head Syndrome" that is much as some have described here Here are a couple links, http://www.sleepasso...ingheadsyndrome http://en.wikipedia....g_head_syndrome And a brief discussion http://www.dpselfhel...g-head-syndrome

Now my question is do you think it's worth taking the trip to Boston to see Dr. Abraham? I've found myself running out of options and need to figure my life out. I'm willing to try new meds including Sinomet which I'm very intrigued by. Do you think I would be a good candidate for this? And how can I convince my future P. Doc to prescribe this? If you can afford to go to Boston, he can be very helpful. Not that he will work magic - no doc can. But he can give you a quick drug trial (1 hour) that will reveal important info. And he can give you an actual diagnosis so your docs can use it as a basis for helping you. He will, at your request, send reports to you docs for what they should do. There is not known 'cure' for HPPD, but it is largely considered manageable with most people being able to lead happy, productive lives - with or without visual crap. As for Sinemet, my bias is obvious on this site ... it has majorly helped life (though I still have some problems). Getting a doctor to prescribe it for you can be difficult - it is entirely how he feels about it all (and even if he just had a fight with his wife). If Sinemet is going to help you, you will only need very low amounts - yet most doctors are not familiar with using it (and its primary use is Parkinson's Disease which you don't describe as having). Nevertheless you can ask. Tell him why, and that you only want a brief course to know if it will help you - any reasonable, compassionate doc would do so. As you need to find a new doc, look for this. Also it helps to find one who loves to succeed at solve problems. Be sure to tell him how Celexa, Zyprexa, Clonidine, Inderal, and Klonopin affected you. BTW - how did Inderal affect you? Would you list your major symptoms? This may help answer your question, Do you think I would be a good candidate for this? And I am glad to assist if I can. If you haven't already done so, search the forum for 'Sinemet' Otherwise, best of success...

they were getting better about 3 months in, but I was prescribed an SSRI which drastically worsened symptoms. It seems that most HPPDers don’t do well with SSRIs … there are always exceptions to the rule and docs love to dole these out … but again be careful with these. Since you are off Lexapro now, enough on this topic IMO, you may wish to avoid anti-psychotics as well. But these are very personal decisions DO NOT GO ON MEDICATION. No sort. it just fucks with your head What we have is neuron damage and the brain has a amazing capability of healing. You just gotta get through it (i gotta get through it - again). The docs just try and chategorize us as skitso but its not the case. I agree that ultimately the brain must do the healing. However, to categorically say to avoid medication cause it might mess you up is not a lot different than saying, don’t eat cause you might get fat, develop heart disease and diabetes. It is of concern that you still suffer these distressing thoughts and feelings. They seem to fall into the category of attention and focus (kind of a norepinephrine thing, but nothing is so easily defined) At 5 months, you are new at this. Do you feel that you are getting better at all now you stopped the SSRI? Or is it been to soon to say? Wish you success...

Have you ever had a flash of light or some other thing with it?

How does Effexor affect you. Since 5HTP made you sick, it would seem unusual that Effexor would not.

Are the two WD symptoms you speak of anxiety and insomnia?

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

"do any of those symptoms sound like something that may suggest something more serious? … What do you guys think? What does this sound like? Does it sound like I will die from this??" HPPD is not trivial but please reflect on these two quotes already: "No you DEFINITELY will not die from this, this is what we all have, it is known as HPPD" "This is a mysterious and complicated malady" This isn’t said to minimize your concern, but rather to comfort you. You’ve had this six years now and, in spite of the common waxing and waning which may occur you are still here. And you produced 3 healthy kids in the meantime – no small task !!! It may help to clarify some of your statements, How was your costochondritis treated? Please describe your pain? (chest pain, neck pain, jaw pain, muscle twitches, back pain) Are these like spasms? (are muscles taunt/spastic or are they normal or flaccid but hurt) Have the doctors given anything for pain? (Often during pregnancy and nursing there are limits to meds that can be used). What do your doctors say about your symptoms? Of your symptoms listed, these have often been linked with low dopamine levels, I also forgot to add the muscle twitches to my symptom list. It's all over muscle twitches and only started directly after the pain. Also my one eye has been twitching in the same place for almost a year straight. All voluntary muscle control involves the balance between dopamine and acetylcholine. While initiation of movement is in the higher cortex (surface of brain next to skull), the bulk of the work is done in the midbrain area that is rich with dopamine. There is further ‘fine tuning’ done by the cerebellum, but none of your symptoms implicate anything there. Of these two neurotransmitters, dopamine is the most ‘fragile’ – that is it’s neurons are far more prone to problems than the others. Negative after images that persist a long time – negative after images are normal and are a function of both photoreceptors in your retina and dopaminergic neurons in the retina directly connected to them. But these images don't last a long time. Trails - doctors have told me this is a dopamine problem. I had frames with a blurry trail in between which immediately improved with dopamine boosting meds Pulse in vision - do you mean focus, brightness, or both? (I had both and they respond well to dopamine meds) Pain – there are, of course, many possibilities around pain. Let me ask this: Are the muscle and pain problems primarily your upper body with perhaps the exception (addition) of your calves? Floaters – this one is debatable since they are ‘normal’. However, seeing them a lot more means either you have a lot more or you simple notice them more. Note: The perception of objects is highly dependent on edge detection with is a feature of contrast. Contrast in visual processing largely involves dopaminergic neurons. Please look at this site and tell us if you experience anything you see here that relates to you http://www.visionsimulations.com/　 Are you currently taking any medications? Hope this is helpful to you

Klonopin is largely considered a 'management' med for HPPD (not a cure) as you know ("masking"). How much are you taking in a day? I'm the odd duck here since caffine has no effect - can drink a triple expresso and take a nap. Nor are there any aggrivations of any symptoms. Are you taking any other meds? Usually the 'energy boosters' (like Nuvigil) don't set well. What are your untreated HPPD symptoms like?

Would you please describe how "It saved my life"? In what way was your HPPD unmanageable before Klonopin? Was is just anxiety? Or the anxiety from the newness of these aweful symptoms? Your answer would be helpful for me.

Aside from a few trials (half good, half not), there seems to be little beyond testimonials. I've tried to explain some of the mechanisms involved, but perhaps other members could contribute some more references to research papers and models.

If you are looking for papers that say Sinemet helps HPPD - none exist. About all that is stated for this disorder is Klonopin. But you can find hundreds of medical articles showing that dopamine is intimately involved in visual processing and perception. Most of these databases require subscriptions to access but often you can get needed info from just the abstracts. Perhaps you could contact David Kozin for info. Also Dr Abraham. But it is only rumored that they are exploring dopamine agonists to help your condition. Until they publish papers to this affect, and then peers review them (I'd expect 10 to 20 years for this to happen), it depends on the nature of your doctor. If your doctor ONLY wants the info as you stated above, then it ain't going to happen. But if he is willing to look at the very nature of visual perception (and "medical/peer-reviewed scholarly sources" about that), he should cooperate. It would be helpful if you list all your symptoms of HPPD. Have you tried any meds so far?

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

Curious drug ... favorite part is that in increases dopamine. Also reduces some acetylcholine (ideal combo for Parkinson's) The NMDA action is confusing since it can cause neurotoxicity (brain injury) but surely they must have this one well behaved, else they wouldn't give it for people with Alzheimer's - yet text also talks about its NMDA action as being neuro-protective [ guess I'm just too tired to understand what I'm reading right now ] Will certainly add it to the list on ones to talk to the doc about. Glad it is helping you.