VisualDude

Odisa, are you two-timing, lol? I think I'll try time travel ...

Choline is a precursor for acetylcholine though mild. Here is a chart of meds that alter acetylcholine levels http://en.wikipedia.org/wiki/Acetylcholine#Drugs_acting_on_the_cholinergic_system And this is an ultra cool diagram:

If it's anxiety related, then Xanax helps. If not, then benzos that I've tried don't help but Gabapentin does. Breathing involves the ANS. By deep breathing [exercises], you stimulate the parasympathetic side of the ANS. Ironically, this will work for both anxiety and HPPD ANS abnormalities ... so its win-win. But a person still might benefit from a med.

Promethease says it loads ancestry. However, genetic genie says it needs 23andMe. Unlike the National Geographic test, both Ancestry and 23andMe don't state the entire goal of what they may do with the data. Ancestry has avoided FDA scrutiny by not stating any health related values of their test. 23andMe has actually been open about health value and is actively trying to learn more about certain diseases. Parkinson's and a host of neurological diseases are part of what they are trying to research. So in spite of that article, 23andMe has been fairly open about their goals ... and neurological research is right up our alley. Again, you don't need to give your identity and you don't really need to answer their surveys. 23andMe has zillions of question that you may choose to answer that help their research. Until more companies become available, these are the options for now. There are some companies that do entire genome sequencing (6 billion) but that is expensive. Initially around $40,000 but soon will be $1000. For most, that is beyond what we can do. Perhaps in another decade the price will be reachable. Also, these companies don't seem to be available for private testing of individuals ... probably more for studies.

Tigress7, On some forums I've seen people get mad at long timers. It is as if the existence of long-timers threatens them. Their thinking is, "I'll get over this because everyone does" ... then they read about someone suffering 10...20...30+ years and they freak. Have also seen people feel it is somehow 'negative' to post anything other than "You will get well soon". And there have been attacks on those who discuss long-term solutions instead of instant-cures. These are childlike states that people regress to when fearful. It does add burden to long-timers - but it is the same burden of a first-born having to care for a last-born. Its a drag sometimes ... but recognize it for what it is. And you are 3 times the age of many members... Like Jay, I haven't seen much problem on this site ... especially compared to others. But there will always be an element of it. So don't give up. Its logical that if you don't get support (or worse) that there is little point hanging around. But please understand there are many long timers and they appreciate hearing from long timers ... so you are appreciated. I've read through your posts and found them interesting. What do you think of Salvador Dali? Clearly Freud got into his head. I've always enjoyed his 'distorted' work ... but funny, he paints his wife beautiful. Is your vision a little fuzzy ... not as sharp? Besides benzos (which help many HPPDers), have you tried any other meds and how did they affect you?

Kind of like the feeling of shortness-of-breath? So it feels like you have to make an effort to breath?

No need for promises. This is all volunteer including self. What is needed is the "raw genetic data" file. You just download it and send. So it can be done lazy, lol. When you have a little time, you may want to run your data through programs like Prometheaus which matches your data to SNPedia so you can see health related stuff more quickly. Its cool ... but you need time to read stuff and think, so do that part later. As it is, it takes several weeks just to get the saliva test done. So it won't interfere with summer plans. Sounds like you are having fun with your life. That is good. Never been sailing yet.

This is what is needed: 1. Genetic tests (SNPs) from people with HPPD 2. Genetic tests from people without HPPD (control group) 3. A detailed survey filled by each member submitting genetic data 4. Then this data will be analyzed for patterns that might relate to HPPD symptoms. Current status: We only have raw genetic data from two members. This project was suggested May 6th ... so is just starting. We have a survey started by Synth but needs to be complete For control, we have various databases on the internet (1000genome, Alfred, etc...) to compare with. Ideally, would like the control group to be people who used recreational drugs but didn't develop HPPD - but this can come later. You might enjoy reading about how one company asked Ozzy Osborne for DNA to study because he did lethal amounts of drugs yet is alive and basically healthy. This is an informal start ... and a broad sweep. It is self funded so each member needs to get tested and send in raw genetic data file. Currently, I am the only one active on this project, though several said they want to get the test done and send the raw data files. Regardless of whether there is enough interest in the project for it to proceed, it would also be good for all members who did the drug trial with Dr A to get tested and email him the results for rs4680 which was the basis of his theory for the trial. This project is only viable if many samples are sent in. Without that it can't get off the ground. Several have expressed interest, but at this time only 2 tests are in. With Statistical Process Control, a minimum of 32 samples are needed. But even Dr A's test had value with just 20 patients. If members continue to submit data files, then we can proceed with evaluations. While this type of evaluation would highlight genetic weaknesses, knowing these is important in finding treatment ... just as it is in any disorder. Ideally such a test should be preformed with a large budget, large sample size, and complete SNP testing. That is not likely to be done soon or if at all. But a small budget study can still have value and lead to important information now. I will continue to work on finding data and methods for evaluating tests. As data files come in, they will compose a spreadsheet. If enough sample come in to start, then I will start analysis. The raw data files supplied by the above 2 companies do not have personal information in them, so members will remain anonymous. So, its up to volunteers ...

Here is a chart of companies doing SNP tests http://www.isogg.org/wiki/Autosomal_DNA_testing_comparison_chart There is actually a lot of difference between Ancestry and 23andMe: Ancestry returned 701,479 SNPs -- 308,158 overlapped with 23andme, with 393,320 not found with 23andMe. Ancestry does not test any mitochondiral DNA (see above chart) 23andMe return 602,353 SNPs -- with 286,653 not found with Ancestry 23andMe has a few repeated SNPs (same position but different SNP id) Error rate between them was 25 partial disagreements and 1 full disagreement. There were also a few missing - don't know if it wasn't able to read or if it is some sort of backward compatability thing. So, we probably should pick just one for now. The above chart says that Ancestry isn't available outside the US. If so, we best stick with 23andMe so more can participate. Ideal would be to dictate which SNPs we are interested in. But that would be a custom job and probably cost thousands per test - which we cannot afford. Please share your thoughts.

Will have to think of a reply for you ...

Yes there are 'invisible' changes, but as you said, you don't need to runaway with fears. As for dementia, there are no studies indicating this from HPPD. There are 2 areas to protect against dementia: diet and exercise. 1) Everything that leads to heart disease (high blood pressure and diabetes) leads to dementia -- the vascular health of the brain 2) The more you use your brain, the less chance of dementia. For example, if you know 2 languages instead of 1, you actually cut the risk of developing Alzheimer's disease in half. So use it or loose it. As for flat vision, trail/tracers, fuzziness, these symptoms tend to be dopamine related. It takes time for visual symptoms to stabilize - often over 6 months. So things shift around which can be spooky. Just give it time. If anxiety about it is ruining your life, then try to get some benzos to take the edge off for a while. Otherwise I don't recommend trying medication until its been long enough to know it isn't fully resolving on its own. Which meds that help will depend on the individual, so it isn't a straight forward journey. Again, give it time. Live healthy - food, drink, exercise, sleep,... Many people resolve in time with just doing this.

In the USA its $9.95 which includes postage-paid return label for the sample. Do you, or anyone, know of gene testing services outside the USA? The two here are 23andMe and Ancestry I decided to try both and see the difference. Just got the raw data from Ancestry ... so give me a few days to compare However, Got 701,479 SNPs with ancestry.com Got 602,353 SNPs with 23andme.com Synth did 23andme with the previous version and got over 900,000 SNPs There are actually many more SNPs but companies don't search them all. They focus on what they think will be most useful to them. At this time I can't say which might help us the best. I'll need to make a little routine to show the difference between the two are. Was also interested if they report differences for the same SNPs - however, so far both match on mine. But with so much data, it takes a program to check. Am downloading some massive human genetic data files off of the internet. Some take more than a day to download even though they are zipped. Windows would time-out, so made a program to do this. Then need to extract data out of that. Since we just have PCs and not huge mainframe computers, the setup for analyzing our data will take weeks to do. Ordered an additional hard drive since the machine can't hold what we need. So please be patient and don't loose enthusiasm. Both tests from the above companies took 4 weeks to get results. So it takes a little time to get our data collected.

Is Trazodone the only med you have tried? How did that med affect you? Would you describe your current symptoms is more detail? Do you have changes in depth perception, color, trails/tracers, starbursts, etc..? I speak as one who is bothered by pollution - even diagnoses as such (which is amazing to have any doctors actually recognize) - so perhaps there are similarities between our cases.

Funny, I thought I had it better than most, lol

Please describe more about why it is hard to look at people? Is it because they are flat or weird? Is it shame?

Perhaps you should change your plans. Since you are 'creative', you should be able to construct 'newer dimensions' without the use of recreational drugs. Even without imagination, its a big universe out there to explore ... sometimes reality is stranger than fiction. There are better was to address "attention deficitness, low self esteem etc.". Attention deficit in particular may indicate you are in a higher risk group than average "based on all my readings and the countless documentaries I've watched, I think it does more good than bad". If LSD does more good than bad, why is it illegal? Be careful what you read. People that do things always tend to promote it. Ask Charles Manson, Hitler, or child molesters.

Super cool! Way to go. Curiously, this is in the whole phosphatidylcholine (lecithin), phosphatidylserine, and glycerylphosphorylcholine (GPC not Alpha-GPC) thing - - - phospholipids. They are vital for neurons, particularly for myelin and the neural membrane. This would apply for all neurons, not just dopaminergic ones. For those with any sort of sensitivity to soy (allergy, or because of its over use in industrialized contries), get it from eggs, a non-soy source or use GPC. The whole 'good nutrition' thingy. It is important to read this study carefully. And it is missing one very important 'group' that might clarify a very important question - does it increase or just preserve these receptor sights? There are 4 groups: 2 month old young mice 19 month old old mice 19 month old mice fed 100mg/kg starting at 1 year old 19 month old mice fed 500mg/kg starting at 1 year old A 5th group to examine should be 1 year old mice - the state of mice brains before futher effects of aging Note: "The Bmax values obtained with treated animals always lay between the reference values of the young and old animals." This demonstrates a preservation of D2 and mAChRs. In general, it would not be too much of a stretch to say there may be some increase. But this study doesn't actually demonstrate it. The mAChRs of the 500mg/kg very much matched the young. But the D2 receptors were not even close in either group. Because of the missing group, this statement concerns me: "It is concluded that chronic administration of CDP-choline to aged animals promoted a partial recovery of the striatum dopamine and acetylcholine receptor function normally reduced with aging, which might be explicable in terms of mechanisms involving fluidity of the brain neuronal membrane." Also wording such as "Treated animals displayed an increase in the dopamine receptor densities...". Perhaps better to say, "Treated animals displayed higher receptor densities than untreated animals of the same age group". Perhaps this is a 'professional' language thing. Or perhaps an artifact of the thinking structure of Spanish language expressed in English. https://www.youtube.com/watch?v=0kqyev46qyI If I've missed something in reading the study, please correct. Although not discussing dopamine, this one states the effects more as preservations "...CDP-choline supplementation can ameliorate..." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC548494/ All this aside, the biochemistry and potential effects of cytidine 5'-diphosphocholine warrant trying it. http://en.wikipedia.org/wiki/Citicoline Would you please provide some references for this one? At the moment, am not finding info to that effect.

There aren't any chemicals (beyond good nutrition) to develop more receptors. The way to create more receptors is to 'exercise' them. The brain is a learning machine. Dopamine is a neurotransmitter of motivation and activity. You can't just target one type of receptor but you can target systems: Playing ball develops coordination - that targets the midbrain (major dopamine area) and cerebellum. These areas involve both movement and vision. Learn to play a musical instrument. It develops fine control of hands, fingers, etc. Practice creativity. Draw pictures, write poems, even music. Creativity involves dopamine. Do visual exercises - depth perception, puzzles, flash number and try to remember them Practice 'joy' and positive feelings. Develop friendships. These are dopamine, opiod and oxytocin areas. Don't do it impatiently or with self criticism. Learning is highly emotional involved. Fear, anger, or fun. Work with the latter ...many of us have enough 'fear' receptors.

Guess that depends on how many symptoms one needs to have in order to be "full blown". Symptoms experienced: Trails, tracers, breathing walls, 'shimmering' movements, 'zooming' vision Alteration of depth perception (from flat to super 3D) Anxiety, depression Tanked libido, numbness in left fingers, body in constant pain (tolerable) Fatigue, disorientation/confusion Afterimages, negative and mild positive Starburst, auras, night blindness Fuzzy/blurry vision, colors dull Tinittis, Insomnia Photophobia, hypersensitivity to movement in peripheral visual field Brain 'stuttering' - stuck in thought about words or minor decisions Difficulty finding things even if they are in front of me Motion latency problem (mild motion blindness) Feeling very drunk 24/7 but without any euphoria DR - as in the feeling that there is a transparent wall between me and the world Ghosting (mild) Various autonomic nervous system changes such as unequal pupil size Mild tremor, akinesia/RLS Typical negative response to SSRIs and antipsychotics that most HPPDers have Symptoms not experienced: DP as in body foreign, unreal, stranger-in-the-mirror, family/friends look foreign, or existential crisis OEVs, geometrical shapes, CEVs (with small exceptions) Changes of color, such as seeing purple Visual snow (with small exceptions) Morphing or seeing faces Altered states of reality (only altered states of perception) Well, that's the start of a list. Somewhat depressing ... but one learns to live with it. There is one important disqualifier, never tried recreational drugs. So its PPD rather than HPPD.

First step is stopping all drugs. Weed a couple nights ago is too soon to know what you are dealing with. Wash out, stay clean, and see what happens over the next few months. You'll not be wanting to get full blown HPPD. Sometimes its a one way trip. Are you on any medications?

In its most persistent form, it probably is chemical brain damage. My official diagnosis is toxic encephalopathy which literally means persistent brain damage from chemicals. But I wonder for those with milder or intermittent forms, how much plasticity is involved? How much did we teach our brains to behave this way? After all, the brain is a learning machine. In context of damage/injury, the brain adapts and tries to rewire functions that were compromised. But by the very nature of neuron construction, the adaption can never be exactly the same as the original - just as you can't change your past, only guide your future. Memories and events are what they were. And just as clinging to the past doesn't work well, it helps to figure out what we can become now, even with this disorder. Forward thinking helps reduce anxiety ... which helps the brain to function better ... which helps us to enjoy life again.

https://www.youtube.com/watch?v=PUKMUZ4tlJg

Yes, too much oxygen will ultimately kill a person. That is why it is used only when a person has severe heart/respiratory problems which compromise normal oxygen levels in the blood. Oxygen concentrations at sea level are around 20% and about 80% of what we breath being nitrogen. The amount the body absorbs is affected by pressure. When you increase pressure, the ratio 20/80 remains the same, but your body absorbs more oxygen. There are probably other blood-gas things going on as well, otherwise it would be simpler to just increase oxygen rather than build a pressurizing structure to put people in.

Yes, there are probably multiple causes. In general, when a chemical pathway is overloaded or compromised, it sets off a chain reaction - from not being able to make enough of a needed substance and/or from not being able to remove substances quickly ( intermediate metabolites). Then the weakest links are damaged. When slight, it repairs. When severe, sometimes it can't repair completely. Often, with both, you don't even know anything happened. So typically you have two weaknesses: 1 the initial metabolic overload, then 2 damaged functions. Our symptoms are the effects of #2 on brain systems, causing them to function weirdly. And it take a lot of damage before we notice any symptoms. That is part of why HPPD is so dynamic, often with symptoms getting worse for the initial weeks or months. #1 is the primary reason from having HPPD. #2 is the secondary reason. There will not be one gene SNP responsible, there will be several in each category. Finding #1 will help prevent further problems even from non drug related sources. Finding #2 will help find ways to treat the damaged areas Both will also potentially affect a persons health throughout their life regardless of HPPD from drugs. That is why studying genes for preventing disease is such an exciting topic - but also a topic beyond this thread. So, in summary, there will not be one answer. This is an informal start. Something we can do ourselves. Over time, each individual may be able to learn important things from their genetic testing - a personal reward for the cost of the test. By comparing these side by side, we may learn patterns (weaknesses) that HPPDers have. It will depend most on getting sample data. While I'm happy to donate time and effort to this project, I don't feel comfortable solicitating participation. People need to feel happy about trying it. And frankly, HPPD often brings anxiety, depression, and dampens hope. But basically, if we can get enough samples to see some potential patterns, reporting this will be encouraging. We can share this with other forums such those for Visual Snow and for DP. Then more might participate and patterns will become clearer. The other option is to just wait for governments, corporations, and charity to help us. This will not passively happen - especially with most struggling financially. To that effect, David is pursuing a new web site with the purpose of collecting money for research, lobbying, etc. That is a very good thing. It will also take time. But it will formalize research which will ultimately need to be done. A lot of good information has come from the work of one man, Dr Abraham. While he has not worked entirely free (and how could he or most anyone), he's shown that HPPD has irregularities in brain waves (qEEG), that there are indications of genetic weakness being responsible for our problem, more recently reveled that for some, there is a low dopamine problem, and countless other papers regarding drug use. Now this isn't to worship the guy. But to give credit to what a man can do. And to show that all efforts take time. The more researchers working together yet on different parts, the quicker the results. And likely there will be surprising things learned. Whether we can contribute to this will depend on willingness to try, finding patterns, and then making these findings known.

Haven't tried Tai Chi or Yoga. However, slow deep breathing is very good for anxiety or depression. Did acupuncture a number of times. Two hour sessions with about 150 needles. It was endurable. Many points were followed up with moxibution - burning herbs on acupuncture points. Not too ouchy. It helped in two ways. First, a couple days later, vision was clearer/sharper. But this gradually went back the way it was in a couple weeks. Have come to realize that this matches histamine response with food and environment. Typically a detox thing. The second way was remarkable. When symptoms started, vision went flat (2D instead of 3D), dull (less color) and fuzzy. After the 3rd acupuncture treatment, when stepping outside from his office, BANG vision was suddenly 3D again ... only extreme like VuMaster or other stereoscopic devices. Over the years this has varied but never gone flat. Both these experiences were before trying any medications for HPPD. After trying different meds, only those that increase dopamine function improve visuals. And I can manipulate the above effects with dosage. For me, dopamine affects histamine response among other things. Later visits to the acupuncturist has minimal improvements. So at $200 a pop and 4 hours of travel, I discontinued. The first visit after starting Sinemet was interesting. They guy had literally been treating people 58 years (began training at 4 years old, treating at 12). He dislikes people taking medications because of negative effects to their health. However he was surprised at the changes in energy flows, 'pulses', etc, and said to keep taking the med. If you want to try acupuncture, get someone that has been doing it for decades and uses lots of needles. I've tried local folks who use 8 needles at a time. It was a waste of money. Some even brag that good acupuncturist only need a few needles ... that is ignorance, 'folk tales'. Another 'alternative' thing you can try that detoxes, improves histamine response, etc. is a 15 minute coffee retention enema. You just need 8 oz of coffee and an enema bag. You'll read lots of internet stuff about using a quart or 2 at a time. However there is a technical reason for using only enough to fill to lowest part of the bowel ... it activates a specific branch of the parasympathetic nervous system. Then there are myriads of herbs and supplements ... I've tried hundreds. Many are good for overall help. But most have not been strong enough to resolve visuals. Although these did not produce immediate results, I do think they have been part of my 'cure' response. And have worked well with meds.