VisualDude

Well, 20X would burn your brain out. But 20% increase is useful. Actually tried one session. Very relaxing. Sadly could not afford to pursue. From Click -- "Michael Jackson, the first man to clone himself is now suing himself for molesting himself." http://www.hark.com/clips/cxmffytthk/homepage_embed?width=480&autoplay=true Hugh Laurie Interviews Michael Jackson: https://www.youtube.com/watch?v=CJW_yTbYGoI

Keppra is a racitam, so works with acetylcholine. Some HPPDers report it helping. For myself, it helps DR some ... and so do other anticholinergics I've tried.

Since some have developed HPPD with just taking drugs once, the doctor isn't correct is saying it isn't HPPD based on your having a relatively light drug history. It doesn't require having a history of LSD. Also, Halos, 'sunburn' and trails are not symptoms of anxiety. Some of the other things described can be from hyperfocus/hypervigilance that characterize anxiety. Very common with HPPD is anxiety. Few can tolerate weed without problems. And many (most?) have problems with alcohol bothering them ... typically anxiety flairs the next day. Seems you have a mild case but it is persistent - over 3 years now. Or as Jay described, pre-HPPD. All that aside, you (and everyone) does well to address anxiety. Chronic anxiety make it worse and certainly makes life worse ... who needs that! So learning techniques to control your thought and reactions is beneficial. And there is no point worrying. Just enjoy life. Did you ever try medications? Obviously Aderall isn't something you should mess with ... at least at whatever dose you took and felt worse.

Yes, if anyone can access the whole study, it would be helpful.

Sound like the conversation was about the rs4680 G:G polymorphism, which involves over rapid removal of dopamine via COMT action. I tested as A:A so should not respond to COMT inhibitors ... which I don't. However I respond to Sinemet. He hasn't done a Sinemet drug trial ... and would not likely do so without understanding a reason to do so. He is focused on COMT and is (was) pursuing that ... probably doesn't even know that some respond to Sinemet by itself. As for money, it makes the world turn. Don't know the man so can't really comment on that aspect of his morality. But most 'giving' doctors get used up fast ... and often taken for granted in the end. An ugly reality. But on the positive, we will do what we can. And it is encouraging to find another group (the VSers) that are actually working on the same thing - PPD. Ironic for this thread, visual snow is not one of my symptoms (just mild and specific stuff) ... and I don't know if those who have responded to Sinemet have had their snow improve (and if they had snow either).

It's kind of annoying the limitations we need to work with. 23andMe and other companies predefine which SNPs they test. This is generally based on which ones have any research regarding them - which makes sense. At this time, getting entire 3 billion pair sequences is too costly ... although it should be below $1000 soon (that's too costly for nearly all of us still). Also, at this time, entire sets wouldn't help much since nobody has been working with them. So its like technology. The longer you wait to jump in, the better the initial purchase will be. With early hobby computers (shortly before the 'PC'), memory was sold in 1K cards for a lot of money. Now you get 1G chips for a fraction of the cost. However, there is over 30 years between the two. Most of us don't want to wait 30 years before getting more help. But with over 600,000 SNP pairs, we have a lot to work with. And many SNPs are picked because they have ended up being the most disease/disorder part of a whole sequence. Do you know any more about Dr A's marker search?

It kind of makes sense since the lingual gyrus is involved with dreaming - an abstract, imaginative process rather than 'cold' pixel processing. As others have brought out before, the additional symptoms common with VS are common with HPPDers: palinopsia (afterimages and trailing), photophobia (sensitive to light), nyctalopia (night vision problems), tinnitus (ears ringing), entoptic phenomena (floaters, blue field, photopsia ('flashes'), blue field). Some have attributed VS to the thalamus with as few as a hundred neurons involved. But these other symptoms are way beyond that ... and imaged as hypermetablic activity. Just as HPPD qEEGs show cerebral disinhibition (hyperactivity). Many people with VS have had it all there life - so not linked to recreational drug use. "None of the patients noted intake of illicit drugs prior the onset of visual snow" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3620302/ So as with so many other brain studies, the same problem is being attacked from completely different fields. Does anybody know of genetic studies being done for VS?

Can you list your physical symptoms? This might narrow down the class of med you would respond well to. EEGs are usually 'normal' for HPPDers. But it is good to have this test done. qEEGs are EEGs with more mathamatical analysis applied. These show differences associated with HPPD. Not sure if they can take the EEG data and send it to be 'crunched' or if you have to do it as its own proceedure ... but it is worth asking.

I would suggest staying at lower doses until you adjust. If a med is messing up being able to function well, then slow down ... you want benefits to out-weight side-effects

Did it help your RLS? I've been using it 5 1/2 years now. Sometimes take a break to see where I am with it. It has been the med for my visuals, though not everything was addressed by it. It also helps anxiety and depression. It doesn't eliminate them, but rather lets me get 'control' of them, if that makes sense. Ironically, dopamine is somewhat of a stimulant. But it is also for regulating/balance of many systems, especially lots of little stuff. It take 1/2 pill 3 times a day (100/25mg formula). That is considered a small dose. Have you always had RLS/akinesia? Or was it drug related?

It is one I am supposed to try but haven't got around to. Sounds like your neurologist is thinking dopamine, which opens up more options. This med is mainly used for dopamine shortage such as for Parkinson's disease. I use Sinemet which is used for the same reasons. Look forward to hearing how well it helps you.

Great details, thanks for posting right away. I kind of figured that most stopped using hallucinogens after HPPD began, but figured that for many there was an overlap of time to realize that something was really going wrong. So for a few weeks or perhaps months a person might experiment with various drugs. In my case it actually took months to figure out what was causing the problem ... so I'd get exposed again to what was damaging without realizing it was causing the problem.

All these things are 'normal' reactions. With one small exception, Gabapentin didn't do a lot for my visuals. And dose changes can increase the 'moving curtain' type thing. When I started, was curled up in a ball for weeks with pseudo (unreal, not tangible) anxiety type feeling. Sometimes it would stop for about 15 minutes, then I'd eat or bath or shop. But after the first 2 doses (300mg each), it improved. Then was on 1800mg / day with no discernable side-effects. Gradually dropped this to 900mg/day. In reflection, was experiencing something seizure like. Gabapentin definitely addressed something wrong with the autonomic nervous system. One odd symptom was heart racing when warm, strongest around June when summer set in. If I'd sit in a cool place, heart rate would be about 60 bpm. But if the temp was over 70, heart rate would increase to 100-120 bpm ... even though I was just sitting and hadn't been running around, nor was it a panic attack. Another symptom was one eye dilating but the other remaining fine. Gabapentin took care of these. I'm off the last few months, get the eye dilating sometimes but so far no heart racing. And no curling up in a ball. It is good you're getting some benefit.

Over the course of time, discussions have pondered whether neurons/synapses been damaged. Generally, when this type of damage has occurred to neurons, the functions they perform are either less stable ('sudden' instead of 'smooth') or functions are weaker/blunted. It is more difficult to know with HPPD because our symptoms are experienced as system problems, not just tiny little neuronal problems. But one might expect that the 'effectiveness' of a hallucinogenic would change after HPPD. Each scenario has its own characteristic. Blunted functions will require more of a drug to achieve the same effect. An example is Meth, which requires increasing doses because of strong neuronal down-regulation (counter-reaction to the drug). Whereas, loss of stability would make a person more sensitive to doses of drugs, more hyper-reactive. Theoretically then, LSD users would require higher doses after HPPD for 'blunted' function, or they would need a smaller dose (be more sensitive) for the same general effects. So this poll is an attempt to grasp people experiences with recreational drugs after developing HPPD. Please feel free to add comments as well as take the poll

Each company has its own agenda. First is make money now. Next is how to make more money. Use a false name and don't bother with survey info. Privacy has always been a concern. In the 80's when AIDS became a concern, fear and discrimination came to the fore. Now with social networking, potential employers have actually looked on Facebook, etc. and it's caused people to not get jobs ... even to lose jobs. Note David's comment about problems now with trying to get medical employment with the reputation of HPPD. One guy told me he used to work for Coors in Colorado but got fired because someone saw him drinking a different brand of beer. So we do the best we can. Either using made up names, like 'Visual' and 'Hope1', or avoid the internet altogether. Since 9/11, all network traffic is logged for a while ... so even being a guest leaves a trail. At some point you have to decide how much to fear humans and how much to interact with them. As the old song goes, "Love hurts". As for trusting 23andMe, FamilyDNA, or Ancestry.com ... I'd rather not but don't know how else to get tested. The official medical route would cost thousands and become part of my permanent medical record - attached with name, social security number, etc. The saving grace for privacy is not being considered important. Big Brother has to work to sift and analyze data (i.e. bother to look at us). Big Brother Business is worse ... money, money, money. But if your are broke, they won't care either, since there is nothing for them to fleece. Identity theft has been a problem, again for money. So even the mail box and garbage can might present a problem. Its amazing how much personal info people will reveal yakking on a cell phone in a restaurant - drawing attention to themselves because of being inconsiderate to the 'dining expereance' of others. Then you got folks sending naked pictures of themselves ... sometimes to the wrong email address, lol. Many forums have been formed to collect info for researching a disorder for college credit or other reasons - not to help its members. It is a depressing fact that people have to be careful. So doing this test involves some 'risk' even as using the internet does or using a credit card instead of cash.

Thank you for your enthusiasm. This isn't a quick, simple project. Ironically it didn't even start as a project. Synth and I independantly got testing and decided to share results. Then thought this opportunity should be posted to the forum to see if there is interest and we can get more samples. Questions and comments about genes and HPPD are welcomed and encouraged. This is not a trivial topic, lol.

The value to doing the test remains the same. The FDA is not saying that the testing results are not accurate. It is concern about interpreting genetic data. First, there is a huge amount of money to be made in the field, so there is pressure from big companies. But more important is people making health decisions based on these tests. The field of studying genes and health is a new field ... just the tip of the tip of an iceberg. So care must be exercised when making medical decisions. For example, some women who have tested as carrying the BRCA1 or BRCA2 "cancer" genes have elected to have their breasts cut off in order to prevent getting breast cancer. While that is extreme, it is how some people react. It is important to know that genes define weaknesses and strengths. Rarely do they involve inevitability/predestination. If a person has a 'good' math gene, they aren't 'doomed' to become a mathematician. Neither are people without that gene 'stupid'. Some of these gene services have a rating system of importance and 'good' vs 'bad'. Often that is misleading and could very well have brought the ire of the FDA. Who is to say being a math wiz is 'better' than being an 'artist'? So ... money, fears, and prejudice are causing problems - as they always have. However, you can bet if no money was involved, the FDA would evaporate. The way genetic data is studied and thus eventually interpreted, is to get many samples (people) with a known disease/disorder and compare them to people who don't have the problem. Eventually they find differences. Sometimes it is clear but often it is hard because it may involve combinations of gene segments (SNPs). While just a single sample, I was surprised that some key SNPs are indicative of my personal situation ... and two warrant taking levodopa (one is an established treatment) - a med that I require even beyond HPPD visuals. To date, there is no record of anyone doing genetic studies for HPPD [ please correct me if you can find any ]. So we can break the ice. I further posit that no viable solutions will occur without genetic studies. As the number of samples accumulate, then patterns will emerge. Ironically, there is a measure of 'genetic testing' going on by our various medication trials. Meds affect metabolic chemistry - as seen in metabolic pathway charts. Genes variations define the efficiency (weak or strong) of each and every chemical process that occurs - which there are many thousands of. At this stage, we are attempting to gather samples from HPPD members. Without this data, the project cannot move forward. So this stage will reveal how much interest HPPDers have in this type of study. So ... keep them samples coming .

I used this for 4 years. Only recently have discontinued. Didn't do much for visuals (but neither did Klonopin), but it addresses an 'abstract' anxiety, insomnia, some ANS issues (i.e. racing heart when hot), reduces body pains/spasms, and moderates potential overstimulation from dopamine agonists. A few report changes in the symptoms of 'movment of stationary objects' (i.e. breathing walls, movement in patterend carpet). When changing dose, this may increase for a little while. Would very much enjoy hearing your experience.

The yellow street lights seem the worst

Great questions. As far as taking the test with 23andme, ancestry.com, etc., they supply a package which provides a tube with instructions. First you hang upsidedown, then You just spit in a tube, close it up, shake it, and mail it in a postage paid package they provide. As for what we are after, that requires more explanation. But basically we want to find more ways to treat HPPD. Most people who've taken recreational drugs don't get HPPD. Only a few do. And then there are a few that get HPPD from antibiotics or without taking drugs. It is because of genetics. The DNA not only 'builds' a human body from a single cell, it controls/maintains all the biochemical processes that keep one alive. Genes have variations, so some people have blue eyes, some green. Some have dark skin and some light colored skin. Each variation has some advantages and disadvantages. For example, skin color is largely irrelevant but in the case of getting sunburn, then it matters. People with HPPD got 'sunburnt', metaphorically speaking. When a person has a genetic weakness, they can compensate with lifestyle changes. Wear sunblock. Avoid milk if they can't digest it. Eat a lot of carrots if their vitamin A is low. With HPPD we are largely blind about solving it. Genetic studies may help change this. While gene interpretations is complicated, patterns show up that identify strengths and weaknesses. You mentioned Dr A's COMT inhibitor test. He based this on research studies outside of HPPD relating to a specific gene position called rs4680(GG). So genetics help isolate function/dysfunction. Another area of interest is 5-HT2A - the serotonin receptor that LSD affects which causes 'tripping' and is sometimes damaged in the process. There are dozens of genes relating just to that receptor. So what we want to accomplish here is collecting a bunch of samples from people with HPPD so that we can examine them and look for patterns. We also want it properly documented so that it could be used in more formalized studies of HPPDs. Without samples from people, it really isn't possible to isolate what genes are involved. Just to illustrate the role of genes in our daily life. Note the picture below. Each arrow is controlled by the DNA.

Caught ya Hannabal, lol I garden in the summer. Get about 3 months of veggies, 6 months of potatoes, and 4 months of fruit each year ... all organic. But when it comes to growing indoors, the thumb is purple ... more likely to get mold that anything useful. It is difficult even to grow cactus indoors. Perhaps that is were hydroponics excells.

Guess I'm a little visual

It will be good to look at how these groups are examining data. Just wrote a program that scans the raw gene files (i.e. 23andMe) to extract SNPs of interest into a spreadsheet for examination. It puts selected snps as rows and member alleles in columns. Each additional member becomes another column. Just Synth and Vis right now, lol ... n = 2. But if others on this forum contribute, we will begin to see patterns. Add to this a good HPPD survey of symptoms and med responses and we can develop a legitimate study here. This is a small start. Ideal would be to get tests from HPPDers and from some of their friends who did just as many drugs without getting HPPD. I've found data statistics of allele 'frequency'. It is massive amount of data but should provide adequate 'control' data to start with. Don't know where there are complete sets available. This project is somewhat ambitious and depends on getting these data sets. So any possible success is up to forum members to participate by getting these tests and contributing them. It takes a few weeks to get results for these companies. Glad you are giving it a try. Ideas here are welcome