VisualDude

Wondering if anyone has experiences relating to neurosteroids ? Neurosteroids are just hormones and hormone metabolites that influence brain function. To illustrate: estradiol levels affect memory, testosterone enhances goal orientation and focus, the DHT metabolite 3α-Androstanediol is know to have "rewarding, anxiolytic, pro-sexual, and anticonvulsant effects" https://en.wikipedia.org/wiki/3α-Androstanediol The topic CAN be an IS complicated. Here is an excellent text regarding neurosteroids and seizures: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3728472/ . Of course its relevance here is that HPPD is a constant pre-seizure state and HPPD at times responds to GABA alterations and neurosteroids actually modulate and can activate GABA receptors but don't loose effectiveness such as taking a benzodiazapine does. I PROPOSE THAT THIS IS A KEY AREA OF RESEARCH THAT HAS NOT BE EXPLORED FOR HPPD. Certainly hormone manipulations, particularly DHT and DHT derivatives substantially help my visual issues and other issues. DHT is not only a "positive allostatic GABA modulator", it also has strong influence with D2 receptor function (a personal nemesis). This subfunction relates to reading social cues and I suspect may related to DP/DR. Now rather than make this complicated or get hung up regarding the technicalities of the subject, it comes down to does anyone notice effects from medication or changes in: Estrogen Testosterone DHT Progesterone DHEA Cortisol Oxitocin Finisteride Anastrozole The list is not exhaustive but these are major players. Here is a bigger list https://en.wikipedia.org/wiki/List_of_neurosteroids Thank you for your paticipation

This thread illustrates: The reason researchers won't bother to look for cures for HPPD Why many doctors don't do much to help HPPD Why CBT is the most important treatment for HPPD Why society considers drug users a bunch of losers

Re Piracetam: If you do a search, you'll see various posts here about it. It does nothing for me. Re Psychiatrist: Docs started hinting it was all in the mind and 'hypochondriac' so went to psychologist and eventually it came down to: "You have a serious neurological problem. Stop wasting your time in this town and go to Boston". Well, didn't know who to go to in Boston and did not have insurance that covered out-of-town (in USA, much health insurance only covers a local region ... if you need outside help either get rich or rot). What this did accomplish is establishing a medical record that it isn't 'just-in-the-mind'. Don't know what Poland is like but this helps establish bases. And it is also useful to learn techniques to better manage anxiety and depression Re Hypoxia: Interesting account. Mom had a long, many hour delivery. Born with water on lungs and difficulty breathing. For 4 months would stop breathing, turn blue, and have to be revived. Always a skinny, fidgety, shy, anxious child. Like you, have long thought hypoxia a factor. According to Robert Sapolsky in Why Zebras Don't Get Ulcers, if you want to make an anxious/neurotic rat, briefly deprive it of oxygen just after birth - it changes their brain. Had learning problems but not with math or science. Language is a problem and work very much to try to communicate accurate. To this day, even though hearing tests have always shown better than average hearing, usually cannot hear or understand lyrics to songs. Curiously, some thiamine deficient children show language problems and some movement problems. Always a klutz. A little ADD. Would often stare in space in own thought and got the nickname 'Spacey'. Teachers would be mad but then usually passed tests - 'B' student unless vocabulary or history. Social interaction problems ... lets see, an anxious, needy, spacey, ADD, klutz with language problems - what could possible be wrong? Add an abusive older brother to the mix just to spice life up a little. Ironically, some of the dopamine meds I take have not only helped visual stuff, but also some lifelong problems ... actually have needed Sinemet since childhood. Also another beneficial med but it damages heart valves and would be dead by now if started taking it as child. The only visual thing as a child was mild CEVs. It was fun to put light pressure on eyes and watch the shapes form and change. Doc once told me that severely retarded children do that ... so apparently am severely retarded. These slight CEVs gradually went away in the 20s. If I take a lot of anticholergeics/Keppra can get some faint CEVs. Grew up isolated and learned to make own world. To this day, prefer to reinvent a wheel rather than use one already made. Thrive on learning/understanding principles. But details are random on remembering. And words are a nightmare to learn. Perhaps the best therapy would be to be dropped off in a country of different language and forced to learn. Re HPPD: Unlike most here, have never tried recreational drugs. One advantage of being isolated ... and being spacey - don't need drugs to go off into la-la-land. Problems started 9 years ago and official diagnosis is Toxic Encephalopathy which is broad and considered worse than HPPD. It also does not have any standard treatment protocols. Ironically, I probably don't belong on this site ... but since there are overlapping symptoms and treatment responses, am here. Re Muscle tension: This showed in late teens, got worse in 20s, much worse in 30s, horrible in 40s. Chiroprators helped a lot. Prolotherapy for damaged tendons helped. But finally dopamine meds really helped. Most recently, thiamine cocarboxylase further helps. Anticholerginics help but each day the dose needs to be increased until memory is trashed and can't function well. Are you neck muscle problems since the accident or have you had difficulties before that? Since there are these similarities in our cases, perhaps: Somehow get thiamine cocarboxylase - does Amazon ship there? Think onelovez is in Poland but he hasn't confirmed what he got or how See about Sinemet 25/100 Discuss these with doctor. If they are rear-ends, search for useful ones Go ahead and work with a shrink. Some can be useful. Look for one who does volunteer work on the side - that may indicate someone who cares and is not a useless cold fish. Some of these are more willing to prescribe Sinemet and other 'unusual' things than most docs. Med responses, good or bad, can help with diagnoses and, most important, begin to provide direction for what to try next.

Streamer and trails would seem to be that same basic brain areas at work. Basically for visual perception, half come from the most recent 'frame' and then the rest of perception involves comparing the current frame with the previous one(s). See: Iconic memory https://en.wikipedia.org/wiki/Iconic_memory Visual short-term memory https://en.wikipedia.org/wiki/Visual_short-term_memory Visual memory https://en.wikipedia.org/wiki/Visual_memory And of course the many links incorporated I've never read of dopamine's involvement in the systems but clearly it is. The natural stuff doesn't hurt to try. Tyrosine feeds ldopa which feeds dopamine, etc... It also feeds tyramine and the thyroid. I took so many herbs and supplements without results that it is difficult to even try to list them ... but perhaps they ended up building a supportive base that the meds could work with. Certainly if there is any sort of 'malnutrition' going on, it will impair meds and/or getting well.

There is no standard treatment protocol for HPPD. If Keppra has helped you so much, why not continue? Or did it stop helping?

The negative about Wellbutrin is that while it is a very good antidepressant, it often increases anxiety. HPPDers usually have anxiety. The positives are (besides the hope it might help) that because it is an antidepressant, doctors are more willing to prescribe it rather than something like Sinemet. If you do try, get either the regular or SR version - not the XL. The most common is 150mg SR pill. You can brake that into quarters then just try 1/4 in the morning and see. I took 1/2 at 9am and noticed improvement in 2-3 hours. By afternoon was sure. Color was brighter, depth perception improved, frame rate improved, and muscle spasms reduced. The next day, afternoon following the 2nd dose of 75mg, went to a massage guy that had been working with that year ... he said he could tell it was my body because the muscles were more relaxed. So it was dramatic since expectations were low. My experience with dopamine meds that help is that at first it helps a lot for many things, then it backs down to about 50%. With wellbutrin there was the pain thing and feeling too stimulated, so stopped. With Sinemet, don't have that (although if took 3 pills at once, would probably have the same problem). With anxiety, it immediately gets better then in a few days to about 1/2. When stop taking it ... anxiety/agitation slowly works up in the days/weeks that follow. Each symptom has its own response. And the ideal dose is a bell curve for each. Your anxiety will likely increase, but its possible that it will temporarily decrease. Meds are weird that way. It you have improvements, then you know that you are a dopamine responder and it is a matter of finding out the best balance. It would be interesting to see if you (or anyone else) gets frame-rate improvement. This problem is not mentioned much. Maybe its rare or maybe the 'rate' is fast enough for most that they don't realize that that is what is happening ... just a sluggish 'disconnection' from what they look at.

Wellbutrin did not cause any damage. But the eye pain increased while taking it, especially by day 5 increasing to 150mg /day. Though there is no pain now, am sure if took 150mg for a few days I would feel it. The eye pain started along with fuzzy cataract-like vision in May 2007. Its largely non-existant now (>year) but had it for years ... and pushing NE and even DA meds too hard will make it worse during that. Suspect that ADD/ADHD meds might be more trouble than PD meds since often they tend to increase NE more, although had no trouble with Selegiline which, though mild, is amphetamine class (sort of) The only meds that caused long term harm were: Effexor - seizures and 2-3+ years cognitive damage, and Abilify - a single 2mg dose (pediatric) increased restlessness (akathisia) for over 6 months. Naturally am not fond of SNRIs or antipsychotics! Curious thing with akathisia, always had mild RLS. Then when trying Selegiline, slept so peaceful wife got scare I died. Many months later Abilify ended that ... and even taking Selegiline again has never restored that peacefulness. Again, there are meds types I hate, but some members say they benefit from them.

The Wellbutrin SR 150mg mentioned above was actually very helpful ... even just 75mg in the morning. The problem was that higher doses caused increasing side effects in spite of helping visuals significantly. Agitation was one problem. Other was weird eye pain. This eye pain was one of the first symptoms I had along with blurriness. It persisted for years. Since higher amounts of Wellbutrin increased it ... it was concerning and I refused to push it. Just being on it a week, then off, improved frame rate 50% permanently - even without any meds. This was significant since the frame rate problem had not really made any improvement in one years time (Oct 2007 to Oct 2008). Eventually got to Sinemet, of which things gradually improved so that now its the sensation of having drunk too much. This last bit is connected somehow to DR because the moments that DR improves, the last of framerate improves. Time will tell. TC on full meds that I was taking seem to complete this but I reduced meds to better evaluate TC and give it time ... etc, etc ... Have you tried dopamine increasing meds in the past?

It is kind of amazing that reducing the field of view will speed vision up. Before dopamine meds, the frame rate was between 1/2 and 1 sec. That doesn't sound like too slow but it is. Very strange sensation of everything there instantly except meaning. And if a person was walking, there would be a blur between frames. The first dopamine med was Wellbutrin SR. Was angry when getting it because thought it was too weak but it was the only thing docs would prescribe. But within about 4 hours of 75mg dose, stuff started improving. About day 6 added another 75mg dose. Vision got much faster but anxiety/agitation got bad. So stopped taking it and as the med got out of the body (~5 days) most symptoms returned as they were but not as severe. And the framerate stayed improved about 50%. Eventually, it has got so that I cannot tell that it is a frame rate problem (and would not have had the length not been so delayed earlier). Now it is more the sluggishness that one has when drinking a lot. Perhaps dopamine meds will help you ... not many report the frame-rate problem. Also, docs told me that trails and tracers are a dopamine problem. Some find Gabapentin sedative. It can vary a lot. Seems the TC is helping but not dramatic. Kind of the most common report. Perhaps it helps 'dopaminers' the most ... time will tell.

slower frame rate - This is one that I have that dopamine meds helped. You can also 'speed' vision up by blocking your peripheral view. Either outside, inside or both. Here is an old link on the topic http://hppdonline.com/index.php?/topic/233-movement/?p=1787#entry1787 What meds have you tried so far? Have you tried TC yet?

My little hound went down over two years ago ... still broken hearted about it. First few months would have intense emotional flashbacks about her dying. Perhaps a little insight for PTSDers - out of nowhere for no apparent reason. Now it just causes very very sad feelings Interesting about Neltrexone. Number of post of the forum. Hear some say low dose worked for about a year. How much were you taking? Thanks for participating in this trial ... hopefully you will be the one who benefits. The product seems plenty strong, as long as there is some cocarboxylase, it should do. Have you been taking B vitamins already? Lots of reasons people try drugs ... peer pressure, curiosity. etc... Once its stuck in the mind, it becomes entertainment and/or a numbing agent which can wash away ones concerns. Perhaps the trick is to find a new form of entertainment that is harmless. Enjoyed Jay's perspective http://hppdonline.com/index.php?/topic/3556-life-hasnt-been-the-same/page-3#entry32290

Alcohol does reduce thiamine Some HPPDers do fine with a little drinking Some HPPDers have problems after Some HPPDers have problems during Some HPPDers have problems during and after Some HPPDers say during they are nearly symptoms free but afterward its worse Then there are visuals vs anxiety responding different The famous Dr Abraham says: Common triggers for HPPD symptoms include fatigue, marijuana, and alcohol. “Marijuana is probably the worst,” says Abraham. “For this population, it’s absolutely contraindicated. This is the kind of thing a doctor needs to tell them.” - http://dana.org/News/Details.aspx?id=43275 Best avoid heavy drinking. Many drink a lot to self-medicate. In the end, heavy drinking is harmful for anyone. Do you find that it helps anxiety at the time? While its a stretch to say TC is a cure, if a 'cure' was found, would people just double up on drugs and cancel the 'cure'?

Never had a seizure before. Since, sometimes there has been flash or light. Then there have been a few times that I'd be driving and then have no idea where I was or what anything meant (such as 'speed limit 65') ... not only 'what does that mean' but the very concept of 'meaning' was gone, just the knowledge that nothing had meaning and that needs to change. Didn't crash, and got the sense that could still drive (and better at 65mph ). This only lasted a 10-15 seconds and sounds like perhaps a mild version of absence seizure. There has also been the quick blackouts, such as sitting at the computer and everything turned off and then on - but happened so fast that didn't even fall out of chair. Although had an EEG early on, because of these events it is thought there is a seizure disorder. It has been a long time since any kind of event but am always sure to be rested before going out. Maybe get a padded cell floor? That is what I've thought ... that somehow these cheap-motel-events 'stressed' some cognitive pathways and caused some real injury. At least much has resolved. Haven't tried any ADD/ADHD meds and have thought they might be useful. But they tend to also increase serotonin and that might not be so good for me. Parkinson's meds are similar but don't do much with serotonin. Wellbutrin was helpful at low doses but higher causes anxiety (though was more helpful for visuals). It would seem that too much norepinephrine can also be a problem. In the end, have only been able to think and to 'repair' through meds classed as stimulant. Like Goldilocks, got to get it just right. Seems there is often a tight rope act going one, although since TC am much more resilient/tolerant of things ... time will tell. Interesting that it changed your personality negatively. Do you remember how if affected you feelings/desires that lead you that way? Jay 'upgraded' me to Admin so I could help with this stuff. But haven't figured it out yet (so am not very useful). We are supposed to have an upgrade (maybe it happened). Will give it a look but am concerned about pressing the wrong button.

Both these supplements are considerably higher amounts than the Bio-GGG-B that you tried, or the Bio-3B-G that I like. But the amounts are very typical of B-complexes and people do not usually have any problems ... let alone the severe difficulty you are suffering. We now know it isn't cocarboxylase causing the problem since neither of these 2 new products you have contain any At this point, you would need to buy individual B vitamins instead of complexes. Then try them one at a time ... which is tiring to say the least. A quick look a Google shows that Lamotrigine can cause deficiency in B6 and vitamin D. And it seems that all antiseizures meds can lower vitamin D, including Keppra and Gabapentin. Since vitamin D isn't in any of the complexes you purchased, then that is not why you are reacting so much. It would seem that B6 is the first one to test. Do you find that the GGG still gives you difficulties? It's dose is much less than these others. Since it seems to give you more energy sometimes and kept you up at night, what happens if you take it in the morning instead? Another thought about vitamin C: Some people are very sensitive to corn, and most vitamin C is extracted from corn. For these people, getting a 'C' derived from another source, such as beet or cassava can be important. At any rate, try avoiding corn a little while since it is COX2 inflammatory and some HPPDers can have flareups from too much corn

When starting Effexor, there would be brief moments of feeling euphoric. More frequently there would be moments where whole body was vibrating. The first couple times thought it was an earthquake but then realized the vibration frequency was too high, so looked and saw it was whole body vibrating. At the time, thought the euphoria was a positive serotonin effect ... perhaps it was pre-seizure since many epileptics report feeling euphoria just before having a seizure. By day 8, doctor said to stop and never touch the stuff again. Was taking the brand name tapering dose pack. Guess Effexor turned me into a vibrating bed in a cheap motel ... It did nothing at all regarding visuals. Besides the above it caused a serious cognitive problem that took 2-3 years to recover. Could no longer do columns of simple math. Not only were some of the answers incorrect, would develop a headache and become so fatigued that had to go to bed for the rest of the day. Although have mostly recovered, the experience was so profoundly negative it kind of gives me the willies to even look at the math problems. Naturally, when people ask about Effexor, tend to discourage taking it ... but everyone is different. This is an example of the simple math problems of which I refer - this has 25 problems to solve ... it only took 50 to make me ill. Could take 1/4 of a Zoloft pill without anxiety (6.25mg), but it did nothing helpful at that dose Tried Lexapro without significant negative effect (except had to double Sinemet) but it had no positive effect TCA helped emotions a little for 1 or 2 days, then became ineffective For me, as a rule, increasing serotonin tends to blur vision a little, reduce contrast and night vision. Even melatonin will tend to do this, which is kind of weird I've noticed that since starting TC, am much less [hyper]sensitive to things. Am wondering if those who have some results with SRIs and SNRIs at very specific dosing are those who have mixed responses (good + bad) to TC - See http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/page-6#entry32540

Been wondering if the level of 'sensitivity' to meds/supplements that many HPPDers report is the biggest thing that thiamine cocarboxylase would help. Or if that sensitivity is an indicator of the need for it. For example, Since taking TC, am much less sensitive to things that used to bother me. Before taking TC, benadryl would bother some visuals. Now it has no effect on them. The need for dopamine meds has reduced so am taking less - taking more does not improve things. Two members have reported some negative symptoms from thiamine (which, as a broken record, should do nothing for anybody). These members are very sensitive to things - even vitamin C and B12. One at least is taking other meds that most HPPDers report problems with (again, there is no fixed rule as to what works for one person compared to another). It will take more participants and feedback to ascertain if there is a hypersensitivity connection to their need for thiamine. Certainly thiamine deficient people are hypersensitive. Generally speaking, HPPDers don't do well with antipsychotics or SSRIs. It would be interesting to see of those taking these and trying TC are the ones reporting the most mixed results. If a person is thiamine deficient, their brain has had to adapt to lower energy metabolism and not being able to make the correct amounts of several neurotransmitters. Once deficiency is being corrected, the brain will start to correctly make neurotransmitters ... this will lead to a different balance that meds are now fighting with, instead of resolving, ... and then members would have to reduce those meds to compensate for the brain repairing itself. These individuals would likely react to the very first dose of TC. Time, participation and feedback will be needed to answer these questions.

One common symptom of HPPD is Pareidolia, particularly faces https://en.wikipedia.org/wiki/Pareidolia I've never had that but noticed that when not wearing glasses (so everything is a bit fuzzy), will actually see them - so in fact do have it in the right setting. Its quite possible that with small changes in eye prescription (or whatever) there will be enough changes in retinal info for the brain to show different symptoms. Recently while wearing sunglasses outside, eyeglasses fell out of pocket and got lost. So for a couple days could not see clearly far or near. It began creating a panic like feeling. Do you find your symptoms ease or change when you don't wear your new glasses? It may be hard to tell now its been a few months.

Have heard that about generics of all sorts. There are differences (so much for truth-in-labeling) What meds are you currently taking?

There is also the factor that many have gotten problems from drugs but have not heard of HPPD. A while back was communicating with a long time member of DPSelfHelp. She said that 20 years ago, DP was always related from some past negative psychological experience ... now about half on the forum have DP/DR that started from drugs. But there is so much fear that some get angry if one even mentions HPPD. Perhaps they fear the stigma or fear the possibility that they did this to themselves. Neurology in particular has overlapping fields of information ... even multiple names for the same brain parts because they were originally studied by different people for different reasons. The fact is that far more people have visual perception anomalies than is reported. Those who were born with them or developed mild symptoms while growing up often think that they are normal (everyone experiences them). So from the sense of 'common' some symptoms such as VS are 'normal'. In the end, they are not ideal, but much of life is not ideal anyway. But life, including HPPD, can always be made better if not ideal

It largely is. Of course snow is snow. But many report HPPD type stuff. The key difference is just the technicality that the definition of HPPD is supposed to be from hallucinogens. It all comes down to symptoms of the brain processing info with some difficulties. Am thinking of posting about thiamine cocarboxylase on some of these non-HPPD forums and see if anyone there responds as they have here ... that would show a link.

Fascinating. Sertraline (Zoloft) gives me severe anxiety and Effexor seizures. Don't know of many members who find Zoloft to be a magic bullet. And some have actually got HPPD from it. But everyone is different. Since you do well with sertraline you might do well on effexor. There are a few members here on it. All SSRIs and SNRIs cause anhedonia. Same with anti-psychotics. One has to decide what to live with - you can't have your cake and eat it too. But until you try a med, you won't know. What were your symptoms of HPPD that sertraline fixed? Is anhedonia the only problem you now have?

Interesting, for years since this stuff started, afternoon crash is normal. TC extends the time before crash. Do you only crash when taking TC? Have you tried 2 more at 12 oclock to see if that reduces crash?

Thanks ... forgot you already told us the product Are you taking just one a day? Have you tried 2 or 3? Some of the medical reports are about thiamine analogs such as benfotiamine. It is logical they would help. I haven't tried any of them. For consistency, am suggesting people first try thiamine cocarboxylase and report response. Then it would be cool for some to try these analogs and report how they respond. It does seem that no one here response noticeably to thiamine mononitrate or thiamine hcl.

Would you post which product you tried? There is another member in Poland looking for cocarboxylase. Since it should do nothing for a person unless there is a deficiency, I would persist if you can. You are very sensitive though. On other member, Kellen, reported better energy but worse visuals ... he is also very sensitive, even has problems with vitamin C. Also the product he took has Trimethylglycine which may be disruptive. How much did you take and how long? Google thiamine deficiency multiple chemical sensitivity. You'll find stuff such as this: "Approximately 20% of chemically sensitive individuals are deficient in this vitamin. Supplementation often results in improvement in chemically sensitive individuals. Pollutant injury to thiamine (B1) occurs from excess intake exposure to formaldehyde, alcohols, glycols, or by over use of the aldehyde detoxifying mechanism. Thiamine act as an intermediate carrier of aldehyde groups, without, it aldehydes can accumulate in the body." - http://www.diet-and-health.net/Diseases/ChemicalAllergies.html\ Prefer medical research articles but as it is, MCS is not well recognized in the medical community. Ironically, I do have that as an official medical diagnosis. Many think that such a person is just 'nuts' - maybe I am just nuts It is very common for HPPDers to be ultra sensitive and even have peradoxical reactions. Here is a thread reporting changed response to meds http://hppdonline.com/index.php?/topic/2408-vyvanse-a-stimulant-made-hppd-much-worse-scared/ - note post #4 --- One member took Ritalin got worse, took risperidone and got better, then took Ritalin without a problem. Yet by far, most HPPDers cannot tolerate risperidone ... and some have got HPPD from Ritalin. So the brain is dynamic. This demonstrates that there is a underlying weakness. HPPD is defuse ... not a focal brain injury such as is typical with TBI. Whether thiamine is the or just a thing, time will tell. Of reports do far, only Jay says it did nothing at all.