Ghormeh Sabzi

Certainly - the type of pain sometimes alters, but it's mostly a very uncomfortable burning sensation at the top of my thighs. Much aggravated by sitting down for long periods of time. But if I touch my thighs to find any source of pain or to see if there are any sensitive areas, it appears normal. Sometimes they feel as though they perhaps have a kind of slightly thumping ache as well. The sensations are hard to describe, but burning is probably the predominant feature. I had an EMG done but that was for muscle twitches. Might ask for a nerve conduction test and EMG on the affected area.

Yes, no drugs is essential to any recovery. Or at least to prevent symptoms getting worse. That includes alcohol, IMO. Everyone's HPPD is different and responds differently to medication. Klonopin seems to be the most effective medication, but I wouldn't recommend it as it's just replacing one problem with another, IMO. There are various anecdotal reports of help on this forum with other meds that have less side effects. Some prefer to deal with this without meds, some with. Dr. Abraham will be reporting the findings of a medication trial involving dopamine boosting meds in May at the American Psychiatric Association’s annual meeting. About a third of people responded positively to the (ongoing) trial, with around a 75% improvement of symptoms. You can have a phone consultation with him for a fee of $275, but in all honestly you can probably find out most of the stuff he's going to tell you on these forums. However, if you need a diagnosis, this can prove useful. He can write to your doctor and advise them.

I have a lot of those symptoms, and more. The last visual symptom you talk about has been described as cell-like floaters by some. Others call it blue field entropic phenomenon. If it is indeed the latter, the dots are white blood cells. Everyone can see this if they try hard to look for it. However, for those with HPPD, there seems to be an increased awareness, and so we do not need to try hard to see them. I may have actually developed two different types of cell-like floaters at different stages, so I'm not really sure what's what. Either that, or I just got a spike in the awareness of this phenomenon at two different stages. ------------ Some other scans have shown some abnormalities for some people. But these are just anecdotal reports.

Dr. Abraham will be reporting the findings of this trial in May at the American Psychiatric Association’s annual meeting.

Thanks for your advice. I don't think I can justify risking amitriptyline due to its effects on serotonin as a SSRI, when there are other options available. I wanted to give my body a chance to heal before trying any meds, but the nerve pain is getting too much. I have lots to do but I can't sit down for any extended period of time. My doc seems to think the nerve pain is related to everything else that is going on. She thinks I'm 'hyperaware'. I do think that's possible, since the nerve pain occured at a similar time to all my other symptoms, but I am wondering whether something else is going on since don't really see anyone on here talk about nerve pain related to their HPPD. Of course, HPPD effects everyone differently. I'm considering whether to just go on Keppra, since if it's related to HPPD that theoretically could help, and in any case I've seen studies showing Keppra to be useful for neuropathic pain. I don't have any real issues with anxiety or depression, so I'm not fussed about that side of it.

Did you know that regularly using ibuprofen cuts the risk of Parkinson's by a similar amount to that of smoking? http://www.bbc.co.uk/news/health-12607042

I'm experiecing some nerve pain as well. Might ask about gabapentin. Seems safe for those with HPPD. My doc recommended amitriptyline, but seems too risky due to its effect on serotonin. How long did it take to work?

Are these a no go? My doc wants to prescribe me amitriptyline (Tryptomer, Elavil, Tryptizol, Laroxyl, Sarotex, Lentizol). I've asked for something for nerve pain I am experiencing, but this is something she has also recommended before I even mentioned the nerve pain. Wikipedia says it acts primarily as a serotonin–norepinephrine reuptake inhibitor (SNRI). Sounds too risky to me...

I do miss a pint, but it's quite easy to avoid. The thought of making the vision worse or the return flu-like state I was in for two months when the HPPD got bad is enough of a deterrent for me. I'd like to recover at least partly as well, and drinking is too much of a risk. Plus, no more hangovers and save a load of money not drinking.

I read all that, left his phone number and Facebook details as well. Some people claim they talked to him. But he contradicts himself a lot as well, actually saying something else cured him on a thread on here which I read. It's all very suspect ... but why would someone post all that? ------------ Cure? Maybe one day, but it is a long way off I think. And it all depends what the mechanisms behind HPPD are. There are some theories, but nobody actually knows what's gone wrong with our visual processing system. Maybe when brain scanning techniques advance, we will be able to get a better picture. Maybe if someone with HPPD has their brain disected when they die, that would reveal some info. Other medical advances will surely help too. I believe Dr. Abraham is trying to obtain funding for research into the genetic side of HPPD.

Has anyone tried any drugs indicated for epilepsy, other than benzodiazepines, Lamictal and Keppra? If so, what did you try and was there any level of success?

Perhaps we should have a thread dedicated to understaing dopamine, it's role in the brian, research articles, etc - and do the same with other neurotransmitters that may have a role to play. http://www.ncbi.nlm.nih.gov/pubmed/2458792

In a similar study, a weak Parkinson's drug (amantadine) improved recovery time from traumatic brain injury: http://www.nejm.org/...6/NEJMoa1102609 More info: http://www.nytimes.c...eport-says.html

I recently developed it as well. It's not too bad though. Maybe try large doses of Ester-C (2000-3000mg per day). Some people over at the visual snow forum had success with this. I haven't tried it myself.

Hopefully it'll go away, but if it doesn't, some over a the visual snow forum have had success in reducing tinnitus with large amounts of Ester-C.

They think dopamine may stimulate the brain to repair the damaged connections. Apomorphine, a potent agnoist, was used. In these cases they believe it would be more effective than levedopa, because the body's ability to convert levedopa into dopamine may be impaired. http://www.scientifi...mine-vegetative http://www.ncbi.nlm....pubmed/20235766 A clinical trial is currently taking place with 76 patients: http://clinicaltrial...how/NCT00761228 ------------------ Interesting that Visual attributes Sinemet for some permanent improvement. I also remember reading about another user on here who sustained improvements for a week after taking part in the Dr. Abraham medication trial. Obviously, our situation is very different from these types of patients. But it is interesting nonetheless.

I was under the impression normal EEG's were common too. I'll get my results soon and let you know what it says. I wonder if a PET or DaT scan would come out as abnormal.

Anyone get anything like this? Started around the same time as many of my other symptoms. It feels like a permanent graze on my buttocks and upper thighs. Significantly worsened (i.e. becomes very painful) by putting pressure on the affected area for long periods, (e.g. sitting down) and reduced to almost nothing (eventually) but standing up and moving around for long periods. Matches up somewhat with restless leg syndrome, but it's mostly the top of my legs / buttocks. RLS usually affects the lower legs. Also, RSL is more often present at night, whereas I can wake up and immediately feel these sensations. Perhaps it's some form of neuropathy. Various tests have now shown it not to be sciatica, neuropathy or any kind of disease that affects the nerves. It's a mystery.

I don't know too much about gene therapy etc, but it is interesting to note there are some promising early studies with regards to gene therapy in relation to Parkinson's. Athough clearly different from Parkinson's, there is some common ground (at least in some cases), i.e. a lack of dopamine. One report I read talks about inserting a (harmless, they think!) virus into the brain. The virus contains a gene called GAD. There was an improvement after 6 months of 23.1% compared to the placebo improvement of 12.7%. The gene 'GAD' stimulates the production of GABA in the subthalamic nucleus, which improves basal ganglia function. http://www.thelancet...0039-4/abstract First I heard of GABA having anything to do with Parkinson's. Clearly I have a lot to learn.

Many people have similar symptoms to us without ever having taken any drugs. http://thosewithvisualsnow.yuku.com is a general forum for visual snow and related symptoms. Check out this abstract I posted: http://hppdonline.co...-migraine-aura/ Note only 40% had a history of substance abuse. I don't know too much about DR/DP as I don't experience it, but I don't think getting rid of the DR/DP gets rid of the visual snow etc. DP/DR is a symptom of HPPD for many. Did you ever experience DP/DR before drugs?

Sounds interesting. One phase 3 trial did not acheive statistical significance, but another one did. Additional trials are taking place... But sounds like it won't be on the market for a couple of years, at least.

Also had slightly low white and red blood cell counts for two months, which then turned back to normal.

Anyone read about brivaracetam? Similar to levetiracetam/Keppra (binds to SV2A), but with additional mechanisms of action. Seems like it is a promising drug. Currently in phase-3 trials. Maybe something to read up on.

My doc said we could try Keppra. She said Sinemet may have to be prescribed by the neuro. I will continue my investigations and maybe try one of these at some point.

My doc has agreed to refer me to the visual perception disorder clinic at King's. I could only be referred to one. I may see Gordon Plant privately at some point.