VisualDude

Welcome to the forum! How long have you been on Effexor and how does it affect you? Would you list your symptoms?

[Edit 2016.03.24:] Poll added http://hppdonline.com/index.php?/topic/5124-thiamine-cocarboxylase-the-poll/ Over the years have taken various B complex supplements. But recently tried Thiamine Cocarboxylase (one of several forms of B1) with notable benefit for fatigue. Then ran across this article: The Beneficial Role of Thiamine in Parkinson’s Disease http://www.neurores.org/index.php/neurores/article/viewFile/155/155 Am clueless as to why this form seemed more helpful ... and will experiment Aside from HPPD or PD, Thiamine has long been understood to be vital for neurological health. And its deficiency is detrimental, such as seen in alcoholics. But this leads to the question: Has anyone else noticed help from Thiamine (in general) or Thiamine Cocarboxylase? Please share your experiences and thoughts. Edit: The source of thiamine cocarboxylase that I am trying is this particular product: Bio-3B-G. http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf Have tried 100mg of Thiamine mononitrate (very common version sold) but didn't notice it. However just 3mg of Thiamine Cocarboxylase is helpful.

Unfortunately, there are no studies to justify the meds I take – HPPD and TE have no established treatment protocols. Its very important to find compassionate and cooperative (helpful doctors). To persist in finding them. And to patiently work with them. While it is impossible to describe the details of 8+ years of dealing with TE, here is a synopsis: Labs: various blood tests, eye tests, a sleep test, neurocognitive testing, EEG, MRA, two MRIs, VEP Doctors: ~20, most useless, some obnoxious/deprecating, and then a few with at least some info and/or willing to try things Drugs tried (so far): Abilify, Amantadine, Ambien, Amitriptyline, B12 Injections, Benadryl, Benzatropine, Cabergoline, Clonidine, Depakote, Effexor, Fioricet, Flexeril, Gabapentin, Hydrocodone, Imipramine, Inderal, Keppra, Klonopin, Levothyroxine, Lexapro, Lidocaine (injection), Lorazepam, Nuvigil, Patanol, Requip, Selegiline, Sinemet, Skelaxin, Temazepam, Tolcapone, Tramadol, Valium, Viagra, Wellbutrin SR, Xanax, Zoloft. (this list omits various antibiotics/antimicrobials, asthma meds, eye drops, and stuff thats slipped the mind) Then there are the alternatives: Acupuncture, Acupressure, CBT, coffee enigmas, massage, microcurrent therapy, and hundreds of supplements and herbs. Costs: many thousands of dollars. A couple thousand hours or more researching. Tears, frustration, anxiety, depression, anger... the whole roller coaster Now for the drum-roll .... Chemical Soup: (trust me, if you don't need this stuff it'll make one sick) Carbidopa/Levodopa 25/100mg (Sinemet) Amantadine 100mg Cabergoline 0.5mg Gabapentin 300mg Keppra 750mg 06.00 1/2 Sinemet, 1/2 Cabergoline, 1/2 Amantadine 14.00 1/2 Sinemet, 1/2 Cabergoline, 1/2 Amantadine 20.00 1/2 Sinemet, 1/2 Cabergoline, 1/2 Keppra, 1 Gabapentin Ironically, in spite of all of this, the body is healthy ... just the brain problems. Most of this stuff is considered low dose, but the ergot carries a significant long-term risk to the heart. In the end, each will need to find what works for them. But hopefully sharing such experiences will aid individuals to derive help more quickly.

HPPD tends to push one into 'vigilance mode'. When the brain is in this mode, its hard to concentrate on detail (such as studying), there is difficulty sleeping, one tends to be anxious, and Ambient Visual Processing (peripheral) is at its peak. So ones cognitive senses are tuned to detect movement in the peripheral vision and try to interpret what these movements and objects are.

Is the heart pounding just from these drugs? What are (were) these? Does it include rapid heart rate or is it just 'pounding'?

There isn't much available for antagonizing 5-HT2B receptors. The stimulating (agonist) of this receptor can be a problem. And most ergots do this. "The 5-HT2B receptor stimulation can also lead to pathological proliferation of cardiac valves fibroblasts, which with chronic overstimulation of 5-HT2B can lead to a severe valvulopathy." -- https://en.wikipedia.org/wiki/5-HT2B_receptor I take cabergeline to stimulate (agonize) D2 receptors. Unfortunately it has the above problem when taken long-term at large dosing. Lite dosing seems safe but defining 'lite' and 'safe' over the course of decades is problematic. So while it can be useful to try the med to see if it will help, if it is substantially helpful, then one has to navigate the long term risk. Both documenting symptoms that tend to be D2 related and genetic testing for D2 related genes (such as rs1800497) can be helpful whether such a risk is justifiable. In the end, since it has been reported that the majority of people recover from HPPD, it is good to wait before messing with meds unless things like anxiety are out of control. HPPD tends to run in a few categories: 1 Learned behavior (plasticity) - by taking recreational drugs, one teaches the brain to 'trip'. You asked for it so the brain is giving it to you 2 Underlying instability/weakness - drugs, stress, or whatever was sufficient to degrade the balance of communication between neuronal systems such as visual processing 3 Actual brain injury - an assault actually has caused sufficient damage to neurons and/or cognitive processing symptoms to render them 'wacky' Whatever the reason, time and healthy living are ones best friends. Ideally meds should be like a cast or crutch for broken bones that are only needed for a while.

Genius or idiot, there is a lot to be said about happy. "He told me there was only one man in the town who was happy altogether: the village idiot" - Darby O'Gill and the Little People Am still hyped about what I take because it has given me back half my life: Sinemet + Amantadine + Cabergoline + Gabapentin + a pinch of Keppra. Because its such a chemistry soup, one can't exactly recommend it to anyone else, lol. But half a life is better than less even if it isn't a whole. Am stunned with how cabergoline has helped unexpecting things ... but how can one recommend an ergot that when taken long term can damage heart valves? You mean meds like SSRIs or antipsychotics? Or you mean just taking Parkinson's meds? An important distinction between needing PD meds (or even Parkinsonism) and Parkinson's Disease is that common Parkinson's Disease (most correctly Idiopathic Parkinson's Disease) has a very predictable progress and outcome - only the rate that one will decline is unknown. [ figures that word 'idiot' would come up twice in one post ... the mind must be slipping away ] HPPD isn't a progressive disease though it make take months to 'peak' in its awfulness ... and then even jerk some around with shifts and changes over the years. Also, most HPPDers get better. PD is a one way street.

Sometimes I'll take Keppra before bed to help sleeping. Thats about it. In general, try to work with least amount of meds. HPPD and TBI can have similarity, it just depends on the nature of the brain injury. HPPD is sort of a chemical injury, at least in some cases. Often people with HPPD are hypersensitive to, or at least have negative experiences with, all sorts of things: light, alcohol, meds, coffee, exercise, ... Sometimes something works a little while then doesn't. Its a drag. However, think of it like a detective story that you just have to keep looking for clues and note how you respond to things. At the same time, one has to not spend too much time dwelling and researching ... or it can drive you buggy. One thing that helps is CBT. Just figuring out how to improve life and regulate feelings is helpful. In one place, Dr Abraham says its the single most important 'treatment'. Anxiety, depression, and even guilt over what has happened are often the worst feature of HPPD. Strange as it may sound, there have been members who say they like HPPD and are happy with it --- clearly they are not suffering terrible anxiety or fatigue.

Wow, your on a lot of stuff! How long ago was your TBI and what happened?

Gabapentin may help with sleep and anxiety & mood swings that may come with Sinemet. For some reason gabapentin has very low addiction, unlike benzos. Perhaps it is because it isn't really GABA? Levodopa (Sinemet) is a stimulant (dopamine) so sleep and anxiety can be negatively affected. Try spacing your Sinemet doses as 1/2 pill 4x instead of 1 pill 2x. Perhaps cut to 1/2 pill 3 times, skipping the dose before bed. Dopamine balance is not so easy for me. Too little, then insomnia and anxiety. Too much, then insomnia without anxiety. The right amount, sleep ok and low anxiety. Backing off a half pill might not address DP/DR/Visuals as well, but consider the whole balance and also give the lower dose a try. Not all racetams are the same. I find Keppra sedating and sometimes use 250mg before bed to help sleep. As for Keppra-rage, it is irritability that some experience and sometimes B6 helps reduce this. Oxiracetam upregulates glutamate receptors, as you said. Generally not good for a population of people who are pre-seizure and tend to respond to meds that quiet the brain (HPPDers). Are you just taking Sinemet 100/25 2 times a day without any other med?

Welcome to the forum Sébastien. Its fairly quiet here but if you dig, you can find useful info. Did you have HPPD symptoms before the Zoloft? Or was your anxiety worsened by weed/other? Yes, SSRIs can cause visual symptoms. Zoloft used to say in the prescriber's guide that it can cause 'Parkinsonism'. It's true with all SSRIs and almost always temporary - when you discontinue, symptoms fade away. Now 'Parkinsonism' is not HPPD, and generally refers to tremor and other movement problem. But the relationship of dopamine to HPPD (as well as Parkinsonism) is there. First don't fear that you've messed yourself up permanently. The fact that there are some more symptoms/problems simply brings to light (pun intended) an underlying neurological weakness. No need to hate the doctor (unless he acts like a jerk) ... almost no medical professionals have training or experience with HPPD type stuff. That is a very frustrating fact. Also, there is no established treatment protocol for HPPD. Nevertheless, there are things that may help. Many manage with Klonopin at fairly strong doses: ~2.75mg/day. You may or may not respond. But there is a problem with benzos ... and that is simply that if you try to discontinue them, it can be very hard. Particularly with anxiety and insomnia. You can read such accounts here. Addressing anxiety is important. Anxiety can be a response (situational) but it can also be a symptom of its own. First, knowing that this isn't a fatal disease may help. Also, that your life is not irreparably destroyed. Most people with HPPD recover. Just be aware that it is very common for some to put up with symptoms for months and even years before they resolve. So with these points in mind you can chill out a bit. Healthy living is important - food, drink, exercise, sleep, emotions, etc. Sometimes that isn't fun, but fun is relative and many extremely healthy people have fun within such limitations, lol. But now a few questions. Do you know of any reason you've been suffering anxiety/depression? Events? Stress? Work? Relationships? Drugs? Do you live near where there have been terrorist attacks.

Sound fantastic! And after 3 years ... that may encourage long time sufferers who feel down. The key with tapering is to reduce possible adjustment side effects. Sometimes a person takes too much at once and feels bad, yet if they went slow it would help. One gentleman on the forum took 3 Sinemet at once for his first dose along with some other stuff. A single 300mg dose of levodopa is too much even for an advance parkinsons patient who is used to taking it for years. He had a negative experience. Think of it like exercise. One best ease in. One could pull a muscle or tendon and have to wait to heal without ever getting a single benefit. I've seen a number of patterns with meds. Sometimes the need is like an empty well that takes a long time to fill. Other times it may be like a rusted spring that suddenly pops out with a little oil. Then there is supplying fuel for the brain to begin forming plasticity changes, so the med is like fertilizer for poor soil ... the plant doesn't just pop up, but can now start growing healthy. These are positive variation. There can be negatives situations as well. Slow and easy may reduce a rough ride either way. One goal is to find the least-effective-dose. That is the 'safest' long term. I find that each symptom has an ideal dose like a bell-curve. But unfortunately might not match other ideals. Improved night vision might be 100mg/day; anhedonia might be 250mg/day; tremor might be 400mg/day. Yet 400mg might make vision too light sensitive and start to increase anxiety and insomnia. So you have to pick what is most important to you. So again, like exercise, let your gray matter adjust and adapt. You may find benefits increase without dose increase. Or they wax and wane. As its only been 5 days it is early - but definitely a positive test. For long term use, low dosing is important. 200mg/day is considered low. I work with 1/2 pills and take 2-4 times a day. Its been 6 years and it is as effective now as then with the average dose remaining ~150mg/day. Over time I've added other meds that better address things that Sinemet alone doesn't. BTW, Welcome! Perhaps you might post you initial experience in Introductions including a simple symptom list. Maybe how various "non hallucinogenic nootropic substances" affected your symptoms.

This is the sort of thing I'm looking for: http://www.nature.com/news/is-the-1-000-genome-for-real-1.14530 . But it has got to get cheaper, and should, over time - after all "The first sequenced human genome cost nearly $3 billion" so $1000 is a steal if one's got it. The reason for whole sequencing is to be thorough. Right now little is known about genes and DNA. For example, changes in 'junk' areas of DNA affect intelligence - therefore it isn't junk, just not understood yet. [ http://www.ncbi.nlm.nih.gov/pubmed/24381249 ] While a whole sequence would not immediately benefit a person, the data is there to review every time something is discovered. No new testing needed. Just check the newly understood SNP with what yours is. It is notable that you mention HPPD and chronic intestinal inflammation. While different, I've observed that people with intestinal problems suffer other, seemingly unrelated problems. This is true with self. If digestive flow/transit is too slow (>20 hr) whether constipated or not, I feel poorly. If flow is too fast (< 8 hr), perhaps from eating too many Jalapenos, then I feel poorly. So it is necessary to ensure a digestive rate in between - which is easy by using stuff like Cascara Sagrada or, since I like Jalapenos - adjust the 'dosage' as needed. For fast transit time, perhaps something like Blackberry leaf. My symptom list when transit time is too fast: mainly the feeling of being poisoned. If too slow: asthma, food sensitivity, irritability, depression, anxiety, fatigue ... its a lot of crap (pun intended) to put up with. Is vision worse? Contrast and night vision certainly gets worse. Whether this is 'leaky gut' or something else, it remains to be learned. But there is a pattern. Take some time to observe this with others. For example, does a friend have asthma or food allergies? What is their digestive transit time (if you can find a polite way to ask them, lol)? As a side bar, people with dopamine problems like PD also suffer autonomic nervous system changes. And its already observed that dopamine issues are involved with HPPD even if it isn't as simple as taking an agonist or antagonist to resolve the problem. Digesting flow is an autonomic nervous system function - bingo!

Was testing only the FLNA gene? Am looking for (and waiting for it to be affordable) whole genome sequencing. They say it is now under $1000 (which is not affordable) but don't know how/where one could get it done.

Glad that is seems to be helpful. Just be patient with the dose (don't be quick to increase it). I try not to sell Sinemet (lol), but it can be a very useful med for some. Please keep us updated on how you feel. Have you posted your HPPD story yet? It might be helpful to know how long you have suffered, what your symptoms are, and how Sinemet affects each symptom. Wish you success ...

The first thought is, you have a cold. The luminous part is weird. Food additives? Cold medicines? Love Canal? The Jeopardy! answer would be: Who is I Am The Walrus? But seriously, If you think that (CSF leak) might be the problem, see a doctor immediately. You don't want to fulfill the above lyrics, namely "Yellow matter custard, dripping from a dead dog's eye".

Its very common for benzo discontinuation to leave one with sleep problems. Tapering is key. As for benzo withdrawal deaths, As of 2009, "This is only the second case within the English literature of death because of benzodiazepine withdrawal." - See http://www.ncbi.nlm.nih.gov/pubmed/19465812 . Perhaps (probably) it is under reported and there are more languages than English. As for alcohol withdrawal deaths (for long time alcoholics), without tapering or medical treatment, "Death may occur in up to 5 percent of patients with DT’s." - See http://pubs.niaaa.nih.gov/publications/arh22-1/61-66.pdf What makes alcohol worse is that it is a allosteric modulator for both Glutamate and GABA receptors ( https://en.wikipedia.org/wiki/Allosteric_modulator ) so it down-regulates GABA receptors and up-regulates Glutamate receptors. This is a double punch compared to benzos which only down-regulate GABA. Ironically, SSRIs are not considered addictive but, as many report, withdrawal is hell. The pharmaceuticals use the term 'discontinuance' problems to make is sound safer. Don't know of any reported deaths "within English literature" ... so at least it is safer by a margin of two souls. In the end, most meds should be tapered up and tapered down. Exceptions might be if you are allergic to one. Also, most antibiotics need to be started strongly and stopping allergic reactions require starting high (then tapering down such as a methylprednisolone pack). Lastly, HPPD is fickle. I've taken a med and had a negative experience right away, then waited a week and tried it again with neutral or positive results. Some on the forum have reported lack of sleep reducing HPPD symptoms. It does seem strange, but then HPPD is strange...

Used to get 3 long nasty respiratory infections every winter. And occasional cold-sores (HSV-1) since childhood. Chronic stress reduces immune response. Stress response is supposed to be brief ... fight or flight from the problem and then back to life. During stress, the Sympathetic nervous system become stimulated whereas the Parasympathetic system shuts down - afterall how important is digesting ones food or resolving an infection when a lion is about to devour you? To my surprise, since starting Sinemet I don't get colds and maybe one blister every three years. Dopamine is involved in the immune system and increasing it has clearly helped me. Not saying you need more dopamine. And at glancing at your symptom list it doesn't stand out. At first pass I'd just say it is stress. Also, getting docs to prescribe these meds is annoying. Short version: being stressed out makes one sicker but my meds greatly reduce sickness.

Lyme bacteria 'hide' in neurological tissue and people can get any number of neurological symptoms. That aside, Lymes as become rather a buzz word everytime someone has something weird going on. 'Persistant migraine' seems to be a term used for people with these visual issues. Terms are terms and it is as good as any. My only concern is that these are not 'migraines' or 'seizures' which can be misleading ... though it is true that some with HPPD have intermittent symptoms. Many are born with visual snow, etc. Some different branches or groups of people collect together to understand weird stuff. This forms fragmentory groups that should eventually communicate together and join as one ... how about PAL (Perceptual Anomalies Limited, lol). As for worsening, it is very common for people to get worse over several months. Even if some symptoms get better. Sometimes its more a 'sideways' thing. The brain is adapting. The adaptation we all hope for is to get well, but what we get is something else. HPPDers also tend to be hypersensitive. Not strictly 'emotional'. Be even physical. Coffee, second-hand smoke, certain foods, lighting, exercise, etc... In some regards we become aware of visual processing steps and start to notice them and it helps to learn to ignore them if we can. So now you notice positive imaging. It is hard to say why. Probably the annoying progression often experienced. Perhaps one could describe HPPD as a mild but very very long bad trip. It is one thing to hang on for a few hours. Another set of coping skills needs to be used for hanging on for many months. Ive had doctors say that 'trails' is a dopamine thing. Don't know the specifics of why they say that ... but as a dopamine hound, it perks up the ears

With HPPD, there are two distinct categories of afterimaging: Positive and Negative. Here is IMO ... Negative Afterimages: A certain amount of this is completely normal. It is because the photo-receptors in the retina take time to chemically 'recharge' ... up to 30 minutes to completely recharge but 'mostly' recharged is quick. You may wish to read https://en.wikipedia.org/wiki/Adaptation_(eye)#Dark_adaptation and https://en.wikipedia.org/wiki/Afterimage . One can make these afterimages last longer by focusing/concentrating on them. They are complementary in color (i.e. black is white, orange is blue, ...) On the back of each photo-receptor is a dopaminiergic neuron. These carry the signal ultimately to the brain but there is a complex network throughout the retina that 'spot-adjusts' light level (contrast). If something is dim, the gain is increased. If something is bright, the gain is turned down. This is on a per-pixel (photo-receptor) level. The gain should be dynamic enough to compensate for most of the recharge delay of the photo-receptor as well as changes in lighting. But for some with HPPD, this seems to be a problem. Contrast problems are experiences with people who have advanced Parkinson's Disease (which involves dopamine rarity). For myself, like these people, taking dopamine increasing meds helps to resolve this issue. So, in short, negative afterimages originate in the eyes. Positive Afterimages: These are from difficulties in visual processing in the brain. Stated succinctly, these symptoms with HPPD are memory processing problems. With a little reading, you can get the sense of what is going on by learning about short-term memory. Specifically Iconic memory (visual sensory memory) https://en.wikipedia.org/wiki/Iconic_memory and Visual short-term memory https://en.wikipedia.org/wiki/Visual_short-term_memory . There are different forms positive afterimaging. One is sort of a flash-back where what you saw moments ago reappears as a flash. This are not in complementary colors but usually the same ones, B&W, or with some colors dominating (i.e. yellow, purple tinted). Another form can be overlapping frames, so one might see multiple copies/positions of a moving object. And there are other aspects of HPPD related to memory processing issues besides afterimages. Well, sorry if this is too nerdy but my communication skills aren't the best. Hope this helps

The word ‘Addiction’ is tricky, so psychiatrist often prefer the term “substance use disorder”. While there are various lists of signs of addiction, it comes down to three features: 1 Abuse – For behavior to be considered an addiction, it has to lead to significant negative consequences for the addict 2 Dependence – Addicts often get to the point that they depend on their drug. 3 Craving – When not using, addicts often report extremely strong desire or urge to resume These above criteria are vital in distinguishing addiction. And they can be applied to non-drugs. Gambling is a behavior, not a drug, yet is widely recognized as something that can be an addiction. More recently – and for similar biological reasons as with hard drugs – junk food, porn, video games and even exercise can become an addiction. The mechanism of addiction involves the role of the reward center: VTA, Nucleus Accumbens, and the PreFrontal Cortex. This is an interesting, but lengthy topic For context of this thread, focus on #2 – Dependence. If this is the only feature in ones life, then it is not an addiction. But the brains response to drugs that affect neurotransmitters is why there are problems with long term use of benzos as well as others. The medical term is ‘tolerance’ and simply means that the affects of the drug diminish and so the dose must be increased to compensate. What is physically happening is called receptor down-regulation. That means that because receptor sites are being over stimulated, the synapsis removes the number of sites to compensate. See https://en.wikipedia.org/wiki/Drug_tolerance What happens when you stop taking the drug, there is an under-stimulation on the receptors. They will compensate by up-regulating but this takes days or even weeks. In the meantime, the person will suffer an increase of the very symptoms that were being treated. For example with benzos, typically they reduce anxiety and help sleep. But when you stop, anxiety will be worse and so will insomnia. So if you use up your pills ahead of time and run out, you’ll have some unpleasant days. As far as being a medical danger, alcohol is just about the only one that is truly dangerous – the DTs can literally kill a person. Withdrawal for other drugs merely make you wish you were dead. You can read various members use of benzos on this site and others. There is one lady who has been on 6mg Klonopin daily for ~25 years. God help her if she stops getting it … but it helps her as much now as it did when she started, so there is no reason to stop.

The problem with benzos is true with all meds affecting neurotransmitters: namely tolerance. It is just that with benzos, the receptors can quickly down-regulate. Valium is the quickest, with Xanax possibly being the next. Klonopin isn't so bad but when people have been on it for months or years, it takes plenty of time (months) to get off. What tolerance (down-regulating) means is that neurons reduce the number of receptors in order to compensate for the abundance of stimulation from a drug ... in this case a benzo 'stimulating' a GABA site (GABA sites reduce neuron activity, so stimulating them quiets a neuron). See https://en.wikipedia.org/wiki/Drug_tolerance Haven't read accounts of Klonopin interfering with recovery. The main issue is that it doesn't fix the problem, just 'manages' it. And then when you reduce the dose, symptoms return. In general (HPPD or otherwise) getting off Klonopin involves increased insomnia and anxiety. So don't feel bad that you can use a med that helps you feel better for now. Just keep the above in mind. For what it is worth, some use Gabapentin to get off of benzos. You may wish to try Gabapentin for your HPPD. While haven't heard of it helping visuals of HPPD, it usually helps both anxiety and sleep. For some reason, Gabapentin has very little tolerance issues. But isn't sexy younger sister Lyrica is reported to have withdrawal issues, so be cautious if a doc offers you that instead of Gabapentin without at least trying Gabapentin first.

[ Generalized reply (been gone for a while) ] When trying any med, it is best to go slow and be patient. Even a helpful med can be unpleasant if the initial dose it too high. Most meds have side effects. With HPPD, each symptom has it's med and dosage preference, so it ends up being finding the most benefit with the least side-effects ... and prioritizing what you want to treat (for example, anxiety is just one symptom and is typically the most disabling of the symptoms of HPPD) But before one can decide on the dose-to-symptom equation, one needs to find out how each med affects them. With this in mind ... Based on most common starting dose of Sinemet - 25/100 (25mg carbidopa + 100mg levodopa) Start with 1/2 pill a day, in the morning for 2-3 days. Then 1/2 pill in the morning and 1/2 pill in the afternoon for 2-3 days. Continue (increase 1/2 pill a day every few days) until you feel better, worse or reach 3 pills a day. Don't go beyond 3 pills per day (75mg carbidopa and 300mg levodopa). If you have negative side effects or little benefit, then taking this med by itself isn't for you. It is common for dopamine to increase agitation, so if it helps your HPPD symptoms, then you need to take something calming to compensate for agitation. Personally I find that it is calming but one is left with a weaker agitation that still needs to be addressed. Hopefully you will be one who benefits ...

HPPD is a constellation of problems, 'epilepsy-like' being one. If you review some of the posts relating to Dr Abraham's work you'll see that he did qEEG studies which revealed that HPPDers suffer a continual pre-seizure-like state, the evidence being 'coherence' - the neurological equivalent of cross-talk (for those who are familiar with electronics and/or hi-fi audio). Another piece of the HPPD puzzle often involves dopamine regulation. This is so in several ways and a bit complex for one thread (but if you read my old posts, I blat on a lot about dopamine's roles). However for this thread, dopamine and acetylcholine are involved in muscle control and spasms. Spasms may wax/wane in severity, which doesn't specifically mean seizure. This is common with people who suffer Parkinson's Disease (PD). When studying neurological disorders, it is the custom (because of being so useful) to compare with known, better-understood disorders. For HPPD, I find models of seizure disorders as well as PD quite useful. You can find these two mentioned together (under ‘coherence’) See https://en.wikipedia.org/wiki/Neural_oscillation - “ Neural oscillations also play an important role in many neurological disorders, such as excessive synchronization during seizure activity in epilepsy or tremor in patients with Parkinson's disease” Also, learning about memory - specifically the various types of short-term memory - is useful. For example, it explains positive-after-images … for lastly (in this post), HPPD is a disorder affecting performance of systems and communication between them. In neurology, these systems are called 'Nucleus' https://en.wikipedia.org/wiki/Nucleus_(neuroanatomy). And ‘memory’ involves groups of neurons coordinating related information. So … what can one learn from this regarding seizure/spasms? Medications used for seizure, specifically Klonopin, have been used to 'manage' HPPD. In this case, anti-seizure meds such as Gabapentin may help reduce spasms. As for the PD 'model', meds that increase dopamine may help. Also, those that reduce or modulate acetylcholine may help such as Keppra or anticholinergics. (Note that acetylcholine is in involved in both memory and PD – a tie in for all three areas mentioned above). Hopefully this will help you in managing spasms with meds. They can be painful, even injuring muscles and tendons. The rest of the info kind of depends on how much one wants to egg-head HPPD. Unfortunately, doctors are not very familiar with it - most never even have heard of it.