VisualDude

It is common with neurology for several different/separate groups to form and eventually (hopefully) come together. This often happens for very logical (hence valid) reasons. For example, Brodmann area 17 is also called primary visual cortex. At Brodmann's time, little was known about what area of the brain did what ... he simply dissected the brain and marked each area according to similarity of neuronal structure. We now know that this area specialized in visual processing, thus has uniquely shaped neurons, and have given it a functional name, not just a structrual-similarity-number. PPD might be a better word ... for now ... until someone comes up with yet another one. HPPD is from Hallucinogen usage, hence the 'H'. Dr Abraham 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 . The names we used to describe symptoms from HPPD were not made-up for our disorder ... they exist in other conditions. Some are normal eye function (negative afterimages, floaters) but are exaggerated with HPPD. Some are very common such as visual snow - yet even from birth can be troublesome enough for there to be forums about it. If you have not had a chance, please watch the interview between a fellow setting up visual snow research and Dr Abraham (our HPPD guru) http://hppdonline.com/index.php?/topic/4027-interview-dr-abraham/ As for barking-up-the-wrong-tree, how much does it matter? Perhaps with doctor-bias/research-bias it matters. Actually, if you want help, get the diagnosis toxic encephalopathy. It opens a huge door of medication trials and removes the bias. I speak with experience as I've never touched a recreational drug yet have this affliction. Still, it helps researchers to know how a person specifically got a disease. As a note of caution, people get hung up with words and labels. Yet these things are necessary to navigate through life. Also, often people can't forgive themselves for harming themselves so they look for reasons to shift blame. Things like, 'others use drugs without problem, thus there is nothing wrong with it'. Saying our symptoms are 'normal' doesn't help improve things, the prefix "dis" is a red-flag for 'please-try-to-fix', whether dis-ease or dis-order. In this case, being 'dissed' isn't about showing disrespect. In the end, crappy (less than wonderful) vision can be a nuisance. Whether it is VS, HPPD or cornea problems. As for answer lying elsewhere, largely the answer is genetics + total stress load. Yet genetics is an emerging field. Humm ... an orphan condition and an emerging field ... not time to hold one's breath. Perhaps if HPPD is adopted into the PPD family it will remove one strike against us. Or for those who don't like it being called a disorder, the PP family. Imaging a researcher exclaiming he just got funding to study PP. Plenty of effort is made regarding recreation drugs. Tons of money is spent on education (just-say-no), law enforcement, rehab and medical treatment. But for research, money is spent where most can happen. Depression, anxiety, heart disease, and cancer get big bucks. Also, pharmaceutical companies stand to make a fortune on these ... not on PPDers. Most HPPDers say anxiety is the worst part and would be happy just for that to be resolved. As for similarity with visual migraine and epilepsy, we already know that with HPPD, qEEGs show coherence between neuronal systems. That is what happens with a seizure, only with a larger amplitude. In general terms, visual migraines are slow-motion seizures ... half hour instead of half minute (Oliver Sacks writes a bunch on this topic). There are all sorts of related, similar, and sometime exact things going on between these conditions. PPD isn't drug dependant. But drugs are a way to get it.

Several reports from Zoloft. One fellow gets it from Pimozide (for Tourette's) with Clomipramine (for OCD) ... but then resolves it with Benzatropine (anticholinergic). Fine (without HPPD) for 20 years taking 3 meds together. Some have got HPPD from antibiotics, even for ache ... the cost of another pretty face

Well, if there is informed consent, it is better than what was done in the 50s and 60s! Using these drugs are about purity (being the actual drug - not cut with rat poisen or whatever), dosage, and genetic makeup. In general, testing is banned in the USA. But they may be useful in low doses for a number of conditions. As for 'safety' with those that have HPPD, it would be helpful to understand exactly why an individual got it in the first place before proceeding. A lot of argument has been made about using weed for medical purposes. Typically for pain, nausea and lack-of-appitite. But we already know that it is implicated in developing scizophrenia while the brain is still developing (well into the 20s). It the end, let the buyer beware and be careful.

did the heart racing start after HPPD? Do you find getting warm makes it worse?

If I understood the interview correctly, he said that SSRIs are used to treat anxiety, not HPPD. And the conversation came up in response to a person getting worse visuals when stopping two meds (SSRI and antipsychotic) and starting a third med simultaneously - something that should not be done.

Great to hear from 'the man' and that he is still active with HPPD work after 40 years. Running notes: Lymes, cancer, seizure disorder can cause HPPD symptoms. VS study - hyper-metabolism in lingual gyrus. Abnormality in occipital cortex. qEEG show occipital cortex and non-dominate temporal parietal cortex. Research needs a shotgun approach not just a riffle approach. Needs broad effort. Identifying where in the brain PPD occurs is good information but doesn't provide relief for the sufferer. Judicious clinical trials are most likely to help 'cure'. At times bringing down anxiety brings down hyper-sensitivity to visual stumuli. Psycho physics - inexpensive, inevasive, no chemicals, doesn't hurt, the single most robust finding in the field. Critical flicker fusion technology. Pupillar diameter is terrific measure of autonomic arousal ... HPPDers typically have larger diameter. SSRIs are helpful long term for anxiety but cause dependence causing rebound when reducing dose. 5H2a blockers and D2 blockers can make HPPD worse (at least transiently). Lamictal useful for seizure and refractive depression but not particularly for HPPD. Must listen to patients with humility because they are not making up their experience. HPPD is chronic disease without known long-term treatment. Dr A career is winding down - old farmer. All research personal work - no grants. Need firmer scientific understanding to proceed with pharmacological cure. Most psychiatrists and neurologist don't know about HPPD. It is an orphan disease.

Many years ago they started lobotomizing people with untreatable, crippling pain. It worked. Later in talking with these people they found out that they still feel the pain ... they just don't care.

If not the word "disorder", what do you call it? It does seem more common than reported - a lot more! Last winter was talking to a colleague who was chemically exposed when I was. He has memory problem severe enough he can't hold a job. (His 'disorder' is a 'disability'). Got talking about visual problems which at first he said he was fine. Later he said, "Interesting that you mentioned it because I have ..." His list included darkened vision, motion latency problems, auras and flashes of light. But he hadn't paid attention to them because the memory problem is his 'problem'. When talking to his wife, she mentions other problems common with HPPDers ... yet he doesn't think about it. It was surprising that someone could have the visual problems he listed but not 'notice'. But it is where his attention/focus is. It isn't 'denial'. He just sort of doesn't care. Just like the people you interviewed. And he is unphased by now realizing these other problems ... they are more an intellectual curiosity than anything. So 'sensory aware' people 'notice' and 'react' more severely than others. Perhaps the lesson for us 'reactors' is to learn to react less, count what is good, learn to chill and find happiness with what we got.

Maybe they all tried Sinemet and got better? Or dropped dead from it?

Haven't tried Mirapex but have used is competitor Requip. Both favor D3. One doctor things that if helps cognition in PD. Did not experienced this with Requip. Mirapex's potential role with mitochondria raises interest, though haven't read results in trials for people with fibromyalgia. Both meds are primarily for RLS.

It would be ideal if you didn't need to take COMT inhibitor since they can be hard of the liver. You are taking ADD/ADHD meds which boost dopamine. Have you tried other dopamine agonistic meds? I've worked with Wellbutrin, Sinemet, Selegiline, Requip, and (currently evaluating) Amantadine. Sinemet has been a life saver and the best of the bunch.

When structural issues have been linked to problems, like migraine to neck issues. But HPPD to jaw and ear is a new one. Glad it worked for you. Have you tested rs4680 for your suspected COMT issue? If insurance won't do it, try 23andme.com. I was skeptical but tried it and learned a lot of good stuff. You might too. Enjoy being HPPD free ...

lol ... no I'm just the same miserable sob you all know This is day 3 so it will take time to evaluate. The higher dose was reminiscent of Wellbutrin though not agitating. The standard dose is 100mg/day though sometimes 200mg/day. Surprised that 50mg is useful. It is hard to fully compare because after being on Sinemet for a long time, the visual problems are a lot better, even when not taking the med. Really, the biggest problems since this all began is killer fatigue by midday and pain. These interfere with 'normal' life. Can drug the pain away but then am too doppy. It is a matter of choosing which non-quality of life to live with ... and the long term effects. It is true that Sinemet helps both these problem, but only some ... and then loading up higher doses doesn't help anymore and adds side-effects. You raise a curious question about happiness and dopamine. They are linked. In my case, dopamine circuits somehow got weakened. Dopamine meds help only a little. It is more of removing problems like depression rather than adding wonderful feelings and emotions. Have heard that cocaine and meth give pleasure. But do they really give happiness? Seems, particularly the latter, that they overload and burnout these and you end up worse than when you started. Guess this is an open question to those who have used these drugs...

Yesterday tried 1/2 pill. Today a whole one - prefer the half (which I'll take tomarrow).

You're talking a combination that is foreign to me. Don't know what the sublingual to pill ratio is. However, Selegiline is usually prescribed 10mg per day. Around 40mg / day it begins to spill over into the MAOI-A department, then foods can become an issue. How were you with adderall, sinement and wellbutrin? Did it help anything?

Gentlemen ... Gentlemen. Be calm and all will work out just fine

You should be able to get from Selegiline (MAOI-B ) what you would from (MAOI-A) ... but of course one never knows. As to what to avoid with Selegiline - absolutely anything that increases serotonin or norepinephrine. This restriction applys to all MAOIs. While this is a safe drug, it is not safe to mix with an SSRI, an SNRI, Wellbutrin, tri-cyclics like amatryptaline, etc. You will know if you are pushing it because your heart will start to race. If just a little, you can wait it through - the time depending on the half-life of the other med. If a lot, you must go to the hospital. Serotonin crisis is no joke. Since the effect of Selegiline last at least 1 week (they recommend 2 week washout between contraindicated meds), you can see that any problem will not quickly pass. I've used Selegiline - and recent genetic testing indicates this to be a good match. It was wonderful but a little weak for visuals. Absolutly stopped RLS type stuff. But then the neuroloist moved and its been a nightmere getting it again. A doctor was willing to give it to me this week but I wanted to first try Amantadine ... then Cabergoline. Again these decisions are being guided by the results of genetic testing and following methodical testing of pharmacological response - slow and calculated. One complication is that with many meds, they don't know exactly how it works and what receptors are being targeted ... anyway that is a different topic. Been off the forum a couple weeks so please remind me, what dopamine meds have you tried? Also, acetylcholine meds (including Keppra)? How did you respond to these. The Selegeline making you clearer is to be expected. But problems with 5mg is surprizing (of course you might just need a small amount). I took 10mg per day (5mg AM, 5mg noon).

Has anyone tried Amantadine? I started yesterday and it helps. So far it shapens vision and reduces DR. Now it needs to stand the test of time... Like any med, who knows. Basically it increases dopamine and reduced acetylcholine a little - ideal for PD patients. For us its kind of like Sinemet with a pinch of Keppra. Will keep you posted.

Why stay away?

Self diagnosis is always a problem. And frankly, so can professional diagnosis - although it is wise to get multiple opinions ... and not just one's own. For example, just read wiki on ADHD. Some argue it is an invented disorder, so there are variations of how many people have it based on various diagnostic tables. Evolutionist claim ADHD is good for the community thought not for the individual. When I read the various major symptoms it pegs much of childhood and adolescents, yet key points are opposite of my life ... so who knows. Never had the diagnosis, but extended family had plenty of neurological issues (ALS, ET, PD, anger/grumpy, ...) - crap genes as they say. But ADD/ADHD and all the rest of dopamine problems, can make life less enjoyable until you learn to work around or with the problem. And if a med helps, then by all means. Your description of Keppra is curious: more focused, less creative, flat-lining. Levodopa usually increases focus, creativity but can agitate a little. If overall Keppra helps then it good to take. In muscle control, acetylcholine and dopamine work in opposites. Just more sea/saw - push/pull stuff. Besides focus, what else do you think Keppra helps? You mention temporary worse again. And this occurs from time to time in your posts. Do you have ideas why? To busy/active? Sickness? Exposure to triggers?

The old-timers put it this way, "Adversity build character"

That is interesting about Keppra. Wonder if it would have helped you with ADD before developing HPPD. I find Keppra messes with concentration and memory ... and the rage is real, even somewhat inducing psychopathy. But tolerate 200mg before bed - very sedating and helps insomnia. At that dose is doesn't mess too much - but who knows, maybe I'm enjoying being a psychopath, lol ... beats worrying about the opinions of others. Doesn't effect visuals but has slight DR improvement. Also, wonder how much being on prescription meds in conjunction with recreational use has contributed to developing HPPD. With both pushing neurotransmitters around, overload becomes a greater problem. Ritalin pushed DA and NE, has strong (yet undefined) action on a couple Serotonin receptors, and even some opiod action. Some HPPDers benefit with DA but NE and Serotonin can be hell. How did Ritalin affect you before HPPD? Having anxiety or depression is very common with ADHD. ADHD is largely contributed to genetic weaknesses with the dopamine system but other genes are involved too. Its hard to say which meds would help you. Of course Klonopin helps with anxiety. I've tried several dopamine meds (though not Ritalin) and those that directly effect NE can be rough. Have you tried meds besides Ritalin and Prozac? Have you tried any sort of genetic testing?

If your doctor would get extensive testing done, that would be great. But generally they don't do that ... and insurance does not pay for extensive testing. So try www.23andMe.com

Wouldn't say most HPPDers have ADHD - that would be an interesting poll. But attention problems are common with HPPD, particularly over-vigilant states such as anxiety and noticing little things. People like to say it is OCD or ADHD but it isn't the same thing. That aside, ADHD meds typically boost dopamine and some have reported developing problems in conjunction with taking a bunch of Adderall or Ritalin. But not all dopamine meds are equal. I get lots of benefit with Sinemet (levodopa) and there was a drug trial using it with another med where about 1/3 of those who participated got a lot of benefit. It is good to note that most HPPDers do really bad with anti-dopamine meds (antipsychotics). Thus the inference would be that some would do well with the opposite of an antipsychotic - a dopamine increasing med. In choosing a med, it would be helpful for you to list your symptoms ... and which ones you think are ADHD. Have you always had ADHD?

Perhaps there is a similarity in that people seeking 'spirituality' find that general life is lacking in fullness and meaning. So 'mind expanding' drugs opens up a new world/experience. They focus on the 'trip' and feel it adds meaning. The meditation in Kundalini can bring effects felt in near-death experiences. Hallucinatory drugs can be overdosed (death), underdosed (nothing), or dosed to 'trip' (somewhat-near-death). Of course what is 'spiritual' is a different topic.