VisualDude

As a side note, functional imaging and EGGs need to be done after a person has discontinued any meds relating to HPPD for several days (weeks with Klonopin or other meds with long half-lives). This exclusion might be burdensome for those who have stabilized with a particular medication routine. Also, PET scans are more expensive than CAT or MRI scans and involve the injection of radioactive materials. These factors should be considered from cost/benefit and patient consent standpoints. PET scans are poor for diffuse issues.

Ask him to check out the forum and tell his story

Welcome back, though sorry to hear about the relapse. Give it time (weed free )

Thank you for the synopsis. As for options: #1 Brain imaging. To date no abnomalities have been seen with MRI. Perhaps fMRI would be useful, but this method would be $$ and probably not yield much info. 'Damage'/alteration is diffuse and tiny ... even if the symptoms are awful. #2 Pupil dilation. This is apparently known. ANS problems are known with CNS problems - particularly with dopamine 'shortage'. This test should be performed anyway if any physical examinations are involved. It is simple and takes just a minute or two. #3 PPI. HPPDers usually have anxiety issues ('vigilant' attention state). As long as this isn't arduous, it is good to add to the physical exam list. It shouldn't be costly - but I don't know what is involved. #4 CFF and dark adaption. I am not specifically familiar with CFF ... so will fly by seat of pants on this topic. Contrast, both spot and overall light adaption, involves dopaminergic function. Each photo-receptor is connected to a dopaminergic neuron. We need to isolate this system and see if this/these symptoms respond to dopamine agonists, even if other symptoms do not respond positively. Flicker response is known to change with acetylcholine (which would be affected by Keppra). I don't know if this has relation to CFF. However in reading about CFF, they speak of the relationship between cone behavior and rod behavior being affected by flicker rates. In general, information pathways from cones primarily feed to Focal Visual Processing - which is detail based, analytical. Information from rods primarily feed Ambient Visual Processing - which is vigilant based, fight/flight. If these two systems do not coordinate correctly, many cognitive symptoms result - often those reported as HPPD or comorbid HPPD. That all said, some good info may be attained. Suspect CFF testing would take some time and perhaps this isn't to best place to pour resources - as we already know some of this stuff. #5 Genetic vulnerability. IMO this is vital to start collecting data. Statistics need lots of samples, so there needs to be many participants. Since vulnerability probably involves multiple places, even more participants are needed - but this will help find out which med a person responds to and why. Tests should involved many SNPs - ideally all. As of last year, complete genome tests are now less than $1000. That is still costly but now about what a MRI costs. I've already spoke much on this topic so will leave it at this being extremely important in order to progress with knowledge and treatment of HPPD. It is very important to tie a symptom and med response survey with each sample. #6 Recovery rate. This info needs to be collected, following the progression of worsening, then getting better, stalling, regression ... or going sideways. A comprehensive survey need to be taken and tied with genetics studies. #7 ... effectiveness of treatments. How each person responds (including each symptom) needs to be documented. While it is ideal to diagnose then treat, there is no established protocol to do so. And pharmacological response is valid method to study. #8 Anxiety study. It is not clear what we will learn from this. We already know that most HPPDers suffer anxiety. However, some have symptoms tied with levels of anxiety, yet others do not. Dr A has already stated that treating anxiety and/or depression is the most effective treatment of HPPD. It is also known that chronic anxiety is unhealthy for both brain and body. Notes: Regarding statements of the 'already-known' nature: These are already known in medicine but not necessarily 'collected' into the set of HPPD/VS information. Since medical studies are highly specialized, knowledge is highly fragmented. Good groundwork has already been established. Building from these is important. Question raised need answering ... QEEG studies show HPPD brains in constant 'pre-seizure' state. Med responses usually follow this as well: Klonopin (gaba), Dopamine (D2), Keppra (psudo anti-cholinergic) -- these are inhibitory, thus calming activity. Well, this is my 2 cents.

It is not clear to me where this is going. So a few questions: This appears to be a list, suggested by Dr A, of options/direction researchers can go. The question is, who is doing what? Regarding the "amazing team in London", is this their list from conversation with Dr A? Or is this list from your conversation? What role/direction is the London group pursuing? Seems that they have already have a project defined and we are piggy-backing on that? So how do we fit in their model?

Neuroprotective effects of Astragaloside IV in 6-hydroxydopamine-treated primary nigral cell culture http://www.ncbi.nlm.nih.gov/pubmed/19409437 The neuroprotective and neurosprouting effects of AS-IV are specific for dopaminergic neurons and it has therapeutic potential in the treatment of PD

You can buy amino acids individually and try them. Just start with low dose and work with one at a time. In general, I've never found anything natural that is strong enough to help me. But surely there are people with 'lighter' cases of HPPD who might benefit.

Did you try Dr A's drug trail? If so, how did you respond to it?

Further Note Regarding MENTAL vs PHYSICAL Throughout the history of this forum, there have been members who are adamant that it is NOT a physical problem. They’ve taken offence or become fearful and left. Depersonalization (DP) is common with HPPD. If you look on DP forums, you will find the same problem. Many, if not most, feel it is psychological and not physical. Why? Because they feel powerless to change if it is neurological. Look further there and you will find that a significant number of DPers have visual symptoms. Furthermore, many (around half) developed DP after a ‘bad’ recreational drug experience. Basically, they have a form of HPPD and don’t know it. Tell them its HPPD and most flip out. It doesn’t take rocket science to spend time on these forums to see these patterns. For those who are afraid they can’t get well if it is a neurological problem, they fret and often decide to believe it is purely emotional. And if connected to drug use, they don’t want to feel guilt at having harmed their body. For those who are tired of the ‘its-all-in-your-head’ mantra, they take exception to the ‘mental’ classification. YOU JUST CAN’T PLEASE EVERYONE In order to think clearly, one has to be able to think. You cannot do that when in the throws of anxiety/depression. Those emotion states are ‘vigilance’ by brain structure and interfere with cool, logical reason. Vigilance is about fight/flight, but you cannot quickly run away from HPPD. So, to the chagrin of some, I advocate addressing anxiety as the number 1 priority. It is the largest cause of disability with HPPD. It is also the worst quality of life. Yes, the visuals suck, but often other things are worse. And for a significant number of sufferers, addressing anxiety is sufficient to get HPPD to back down or even go away completely. Many suffer sleep disorders. It is reasonable to address that. Some HPPDers suffer physical pain. It is reasonable to treat that. The list goes on - There are important steps a person can do NOW. Advocate and seek research if you like, it is a humanitarian thing to do. But don’t neglect what is available at this time. In making advocacy to the PUBLIC, it is important to NOT scare them. Instead they need compassion aroused. Many will shy from the stress of people arguing. In finding advocacy among researchers, they need to feel intrigued. And for some, they need to feel career advancement and/or money. Forming advocacy is a type of teamwork and needs all the tools of tact to make it work. Partners will look for stable relationships.

Dr Abraham is a Psychiatrist, not a Neurologist. HPPD is technically defined in the psychiatric community (DSM), not the neurological community. The mental/physical debate is driven by fear and prejudice. Yet as early as the 1950's (and Ernst Gellhorn's book, Physiological Foundations of Neurology and Psychiatry), there is not a line between the two. Schizophrenia is a neurological condition. It would seem obvious that a recreational drug would cause to neurological response ... 'tripping' isn't a placebo. LSD isn't just a sugar pill (pun intended) It this relevant ? To effectively communicate, people need common ground. If the medical community defines HPPD as a Hubbard Squash Plant, then we have to work with those terms. Its academic (not of practical relevance; of only theoretical interest), yet to get help from academics (scholar in a college or institute of higher education -- researchers) it IS relevant Badgering and belittling is not productive. You want to advocate? ... then do so. You want to collect funds? ... then do so. But if you go door to door and berate those who think different than you, it will reduce the contributions that you could receive. Was it not also reported that the medical community no longer wants to hire David because of HPPD? A while back you said you wouldn't talk HPPD to your local doctor for fear you could lose your job. Have you now changed your mind? That would be a refreshing change. Don't let your frustration cloud your zeal for the cause, otherwise is saps your strength and drives others away. If people want to start a constructive drive for HPPD research, how about talking with Dr Abraham for ideas and direction. He has made a large dent in researching this disorder. There is even a recent interview he had with a 'visual snow' group in Europe. He clearly has interest in helping people with this problem ... not just had but has. He is only a phone call or an email away. http://amrglobal.powweb.com/contact That said, the video idea is great. Isn't their already some on YouTube? Can something be done to make them viral? Then we have a possible opening with Dr Nutt, all because of a member's willingness/enthusiasm to email. Then we can piggyback with visual snow groups. I've already offered to collect DNA samples for research, though few have responded. There are many direction that can be productive. But there are also lots of things that people can do now to help themselves.

Dr A says it is the most effective treatment for HPPD. However, CBT requires one to be willing to change their approach and thinking. Just like they have cured cancer and AIDS ... One does well to accept management. And sometimes managements really does correct a problem.

Viagra is a failed blood pressure medicine. Cialis (the limpest of the 3) is working on approval for be available as OTC blood pressure medicine. Amen

A while back, David PMed that he formed this site because a friend with HPPD committed suicide. This was to be a support group to prevent such. If he had other goals for the site, he never expressed such to me. He spent personal time on HPPD papers. And in the end, he spoke of creating another site for raising money. At this point in time, there is no reason why the site cannot have several angles. It is important that people don't 'off' their self. There is plenty of opportunity to find commonality between symptoms and medication response - if people follow through and participate on such questions. Then advocacy is also a useful direction. It really depends on how members react and participate. You speak of organizing ... how do you suggest such?

There is no shame in looking for answers for the world in unusual places. After all, humans have tried all sorts of governments and life styles yet there remains extremely serious problems. It's kind of ironic that after personal disasters, one finds it necessary to focus on immediate blessing that one still has or can avail oneself of ... even if they still ponder for solutions for the planet.

Yes, at $10,000 the Nutty Professor is a high priced escort. Nevertheless, he actually may be helpful. And your contact has got the ball rolling. It is hard to know how many members we have here. With a couple recent gaps, many have yet to appear back. The founder is involved in other matters for the immediate future. Also, with the study being in the UK, it may require members there or near there. That said we can start with this DANA article, quote and link: "...about 4% of LSD/MDMA users reported experiencing symptoms of HPPD. This is a substantial number,..." http://dana.org/News/Details.aspx?id=43275 Four percent of these users is actually millions of people !!! We simply don't know how many suffer with years of persistence. You've already included the first of the following, but list these: http://amrglobal.powweb.com/category/hppd HPPD definition http://amrglobal.powweb.com/a-new-treatment-for-hppd A new treatment possibility http://amrglobal.powweb.com/about-dr-a/curriculum-vitae Papers of Dr Abraham's extensive research These links mention antiseizure meds (Clonazepam) and dopamine as two areas to look at. That could be important in how and what they look at regarding persistence and possible brain alterations. Also, Dr A is a serious, recognized researcher (even sharing a Nobel prize). That helps garner respectability. Well, this is at least a stab at an idea

Interesting that EyeOnVision features children in the fund raising. That is always the most effective way to get people to open their wallets. Kind of like politicians kissing babies. Perhaps we should attempt the theme: "Children with HPPD". By finding very young people with this disorder and writing their stories and needs ... perhaps that would help. But the energy needs to be channeled to 'find the cure', not 'say no to drugs'. There really is a stigma with drug induced problems. People wink at you if you smoke an occasional joint or whatever. But if you get caught in a scandal or get sick, then some get shunned. Certainly no one smiles any more. Its like 'lecher gets clap' ... they don't get sympathy, let alone money. Illnesses have always carried a stigma. Thus there have been years of movements to try to remove the 'shame' of major depression. Yet one idiot flies a jet into the mountains and now depressed people are scared that they are going to be discriminated against. HPPD is a disorder - an illness. Complete with stigma. Add government red-tape regarding schedule 1 drugs, and it becomes an uphill battle. Those with the same illness but not drug induced (such as visual snowers) are in a better position to get help. Add some children and money starts to flow. We do well to piggy-back on their effort. That said, whether one feels positive or negative regarding the man, the efforts of Dr Abraham are significant. Thou a thorny topic, he has done much to establish the 'existence' of HPPD and show that changes have happened in brain function. Aside from a book being published, does anyone know of people carrying on his work?

Initially it did sound funny that a guy named 'Nutt' says we should legalize drugs. If its $10,000 to have dinner with them, what does it cost to participate in the trials? ('free' LSD?)

I find Keppra very sedating. For now, only use it before bed, usually just 250mg. Dosing 1000mg or higher trashes my memory and is too sedating and disorienting. It does help DR some. The more the better so. So above comments make sense. For me, that is the only visual effect the med has. All anticholinergics help my DR. Don't have DP but assume it is related to DR and, again in the above comments, it should be helped. As for mood, dosing 500mg/day or more makes me irritable toward others. At times almost sociopathic. B6 doesn't seem to make a difference.

It is good that that book is being published. It will be interesting to see how it does since there are so many pushing to legalize recreational drugs and claiming they are absolutely harmless and that alcohol (currently legal) is the most dangerous drug. Perhaps the anti-drug people will use it and HPPD will become well known. As far as a stable set up, that IS a difficult problem for many with HPPD. It is very easy to rock the boat emotionally and/or physically. Really, that is one of the most difficult aspects of the disorder. It is difficult to socialize when you have to eat and/or drink different. Add an uncommon ethical or religious view and one is virtually isolated. But that is the folly of bias/prejudice and is a whole other topic than HPPD. But in spite of our problems, life has many options and things to offer even with restriction. You have to focus on that and move with it. If this site grows in membership, then eventually it may help some find social contact. David did form this forum with the idea of providing individual help as its main purpose.

what's being done about it to help restore all our lives godamnit! As adults, its an individuals responsibility to care for their self. That said, some tasks are monumental and require assistance. Thus the benefits of family/community. Are we our brothers keeper? That should be obvious. But then comes the issues of fairness and compassion. There is also an individuals responsibility to work with what is offered. You know what helps? Nothing. Nothing helps. Lots of things help. It is just that there is no instant cure. No simple answer. You want to take drugs to mask this condition go ahead. Does a crutch mask a broken leg? Or does it provide support while the leg heals? What if a person is so old that their bones will not knit correctly ... should they throw away their crutch because it isn't a cure? Or should they take what they can get? It is a personal choice. How about when the pancreas no longer produces insulin? Taking insulin doesn't mask the problem, it replaces what isn't being produced. Otherwise diabetes kills quickly. If masking a problem makes life livable, why not go for it? The drug formulation Dr A came up with isn't for long term use Tolcapone is hard on the liver and requires monitoring but is entirely manageable. It is also gastly expensive. This is Dr A's first attempt in the new direction of working with dopamine. There are plenty of other directions. If COMT is truly ones genetic weakness, then this or similar COMT inhibitors is the most direct route. You don't know until you do genetic testing and trial (including errors). a bunch of people who are wired in a way where we cannot withstand the effects of drugs Genetics spend our entire lives fighting Most people would like to have some long vacations too. Half the world is hungry. Millions die in stupid wars that go on and on and on. Yea ... it is not right HPPD a place in sorry to say lacks any hope Hope does not have to be black and white, all or nothing. Even a perfectly healthy individual ages, slowly loosing ability, then dies. Or early on gets hit by a car and lives the remainder of life crippled and in pain. So categorize and prioritized what one's problems are. Then address the easy first and take pride and joy in that step. Then move to the next ... Meds have helped me such that some symptoms are resolved even without them. Others are just better. And then there are those that are difficult. Anxiety and depression suck the life out of what little energy a person may have. These must be addressed quickly. Learned helplessness is not healthy. It is not surprising that Dr A says the #1 treatment for HPPD is CBT! Meds have risks. There are also risks involved in not medicating a medical condition. I choose the meds now because the quality of life without them is such that I won't be around in the future. If down the road a negative things happens because of my meds, then I'll have to deal with that then. Each has a choice. I have genuine hope and results. And freely share these with others. But I don't appreciate being kicked at because of it. I DO get tired of people screaming the evils of medicine. I don't like needing meds but life is so much much better with what I do than without. And I am proud of what I've learned and accomplished. Joy in life depends on appreciation what one does have and has accomplished. The journey of life is smelling the roses and climbing the hills that are in the way. If I'm a cheerful fool, so be it. But it is a choice not a natural disposition

Where in your body is the pain? What kind of pain? (ache, burning, tingle, sharp, etc.)

One of the few researcher into HPPD is a Dr Abraham. He states "Developing HPPD without ever tripping on acid can also happen, but in my experience this is quite rare, and suggestive of another disorder in the nervous system that needs medical attention." http://amrglobal.powweb.com/category/hppd I happen to be one of those "rare" individuals. Time will tell where you are with it all. You sound calm in your post, which is good. Just patiently work with your doc and see how you respond to the meds. I would suggest you start with just 1 at a time and see how you do ... if you do both at the same time, you won't know which one is helpful or otherwise. As for glasses, if you have an astigmatism, that can cause 'ghosting'. However, if you didn't already have this symptom, then clearly something changed 2 months ago. HPPD itself resolves for most people in time. If you have a "disorder in the nervous system", then it is likely that the symptoms will skim along throughout your life until addressed (if it becomes important enough to do so). More questions: Do you find a correlation with anxiety and your visuals? Or are your visual issues steady? 24/7? Since you have suffered depression and anxiety (a hypervigilant state) for a long time, either you got more hypervigilant or something changed a little in your visual processing.

That's the spirit ! Am not familiar with live in Europe but here in the states is much of what you say. There is enough wealth for people to make their life such as when someone else's pain brings them discomfort, they just push it away. But as the economy continues to decline as it has for 50 years, many of those who could wall themselves up in isolation in their 'perfect' world will face a different reality ... and compassion isn't likely to be returned since it was never sent. Is the pain you speak of physical or emotional?

"sense of continually questioning what is real and what is not" - that may be part of DP (Depersonalization) which is rather common with HPPD. Anxiety is very common was well. Your visuals are quite common with HPPD. Perhaps your "Monocular double vision" is what HPPDers call 'ghosting'. One thing that will help is seeing how you respond to the meds. While some HPPDers get help with those two med, by far most have worse visual symptoms. So be patient, start with low doses and see how you respond. Your doctor will be looking at this to help with his diagnosing for you. It may help to prioritize you symptoms. In general, the visual distortions are annoying and can increase worry/anxiety. But major depression and anxiety disorders are the most debilitating and interfere with trying to live a happy, productive life ... as you already know having suffered for quite some time. So treatment for them is a priority. Ideally, treatment should improve all your symptoms, but that usually takes time HPPD in general is a constant 'pre-seizure' state. The brain is running fast and having difficulty regulating how you feel and process visual input -- "cerebral disinhibition". So meds that have anti-seizure effect help many. They also help anxiety. Klonopin is perhaps the most helpful, but best short term. Some get help with Keppra. In more recent years, people have had some help with dopamine boosting meds ... which are the exact opposite of risperidone. You'll have to patiently work through this and with your doctors. Is your doctor familiar with HPPD? How recently did the visuals start and how quickly did they develop? Any life events or drug use shortly before they started?

Check out this thread http://hppdonline.com/index.php?/topic/322-body-temperature-and-visual-symptoms/