VisualDude

Here is a poll for people trying/tried thiamine cocarboxylase. Thank you! [ Note: You can re-vote later if you are continuing to take it and symptoms change ] The topic was originally started here - - > http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/

Merkan, excuse the personal question but does TC give you diarrhea? Did it change your digestion at all? The member above is having problems with the similar dose to what you took (take)? Also, how do you feel about TC after 12 days now?

The only food that affects me is corn ... and then only eating a bunch of corn chips. Apparently because corn is COX2 inflammatory. Visually, more blurry (less sharp), more 'whiteout' effect. If skin has insect bite, it will be more itchy. Sometimes emotions more 'moody' Wonder how you 'feel' in time taking TC? Not sure if understand your post correctly. Sounds like being responsible/functional leaves you emotionally blunted. Whereas increasing serotonin make you more alive, albeit with more visual symptoms? Is that what you are saying?

Wonder if the alcoholics had diarrhea in the hospital bed? This could be an interesting poll. Since some HPPDers have said they rather have cancer or be missing a limb than have HPPD ... would they be willing to suffer diarrhea rather than HPPD? So you went from 1.5 mg (1 pill Bio-3B-G) that helped brainfog to 25 mg (17 pills) that causes you a very 'moving' experience. How are your visuals from this higher dosing? Your brainfog and energy? How about something in between like 4.5 - 6 mg? That should be more than enough, 3 pills (4.5mg) is the typical daily dose I've taken 29mg (4 Bio-Immunozyme Forte + 6 Bio-3B-G) in a day without any problems. But no benefit better than just 6mg. Most B-Complexs are much higher. Here are some random examples of thiamine amounts per pill (and types) going down Google: 25mg (?) The Synergy Company, Organic Super B-Complex 2.5mg (?) Garden of Life, Vitamin Code, Raw B-Complex 54.4mg (benfotiamine) Swanson Ultra High Potency Activated B-Complex High Bioavailability 75mg (hcl) Enzymatic Therapy, Fatigue to Fantastic, Daily Energy B Complex 100mg (?) Nature Made Super B Complex 100mg (hcl) Vital Nutrients B-Complex 40mg (hcl) Thorne Research, B-Complex #12 50mg (mononitrate) GNC B-Complex + Energy 110mg (hcl) Thorne Research, Basic B Complex 60mg (hcl) Pharmax B Complex 50mg (hcl) Ortho Molecular Products, Ortho B Complex 50mg (hcl) Ortho Molecular Products Methyl B Complex 100mg (mononitrate) Solgar, B-Complex "100" 50mg (mononitrate) Twinlab - Stress B-Complex High-Potency Caps with Vitamin C 25mg (hcl, cocarboxylase hcl) Country Life, Coenzyme B-Complex Caps 100mg (hcl) Pure Encapsulations B-Complex Plus 25mg (mononitrate) Bluebonnet Nutrition, Stress B-Complex 50mg (mononitrate) Rainbow Light, Energy B-Complex Plus Vitamin C, Food-Based Formula 15mg (?) Nature Made, B-Complex with Vitamin C 150mg (Benfotiamine) Benfotiamine Inc., Multi-B Neuropathy Support Formula 25mg (cocarboxylase) Source Naturals Coenzymated™ B-1 -- 30 Sublingual 100mg (?) Source Naturals, B-1, Thiamin 500mg (?) Source Naturals, B-1, High Potency ... And of course in this country (USA), people are never satisfied taking just one, so they shovel down several. Have you ever tried a 'regular' B-complex? Wonder what 500mg would do?!? Don't know what else is in the product that would cause diarrhea ... so probably the thiamine. People with midbrain dopamine problems will have autonomic nervous system imbalances. The ANS controls digestion, which includes the colon. My 'movements' have actually improved. Have you had any constipation or digestive problems before taking either Sinemet or TC?

The first visual thing for me was improved DR. But within a couple days, the ability to adjust between bright outdoor light and darkness was certainly improved. And am less sensitive to bright light. Also easier to drive at night. Used to have painful sensitivity to light and even motion, but that improved with gabapentin and, over the years, is much better. Only started thiamine cocarboxylase 8 weeks ago and am the first to try this. Still take other meds, just lower amounts. Overall, fatigue is improved (but still a problem), depression/anxiety improved, visuals improved and a sense of wellbeing inspite of troubles. It is hard to know specifically what will be improved for a person. But if one does has a thiamine deficiency, the brain cannot function correctly. So correcting the deficiency will enable the brain to start repairing and try to correct function. It will normally take weeks for the main changes to occur. Severe and/or long-term thiamine deficiency is very damaging to neurons, so should be addressed.

800mg vitamin C really isn't much. People will do massive amounts of it for 'flushing' toxins. One version is take 2 grams an hour adding 1 gram each hour until you start getting diarrhea, then back off till it stops. At the higher doses one needs buffered C because its too hard on the stomach otherwise. I've taken 40g in a day without getting the runs ... just stopped because the dosing seemed ridiculous. Doesn't do a thing good or bad for my visuals, fatigue, etc. Maybe you get brainfog from starting to detox? Hard to know. HPPD is made all the harder because so many are ultra-sensitive to any changes. The energy improvement sounds fantastic - like something your brain needs. But the negative increases are a pain. Once you isolate that it is the TC, then you'll be in better position to decide what to do next. As it is, you report having hard time getting off the Lamictal. Trying standard B1 (thiamine, thiamine hcl, or thiamine mononitrate) seems a logical next step. It that does nothing then the isolated TC or if you can't find that, then 3B-G.

Sometimes one can only get so much out of a med ... it can be easy to dose too high (and usually the 'standard' doses are high for HPPD use) Many HPPDers are ultra sensitive, which is frustrating (to say the least) When you say "I do feel a little bit more energy" do you mean more that before the GGG? How much vitamin C were you taking each day? Did you take 2 GGG pills yesterday? Would assume the food in Canada is better than USA ... couldn't be worse than what is sold around here (though a lot depends where one lives and $$$). So if you aren't carbing-out and are eating generally good, then you wouldn't normally have TD. However the premise of this test is that there is a metabolic TD behind some HPPD problems. If you have low thiamine and are 'unstable' with symptoms as you describe, then as thiamine is restoring it would not automatically get wonderful ... it will be a slow process. Both Merkan and myself were 'stable' so TC helped without an initial rough ride. That all said ... if you are feeling more energy than usual, and you took 2 or more GGGs last night, maybe just take 1 today and see how energy goes. Otherwise, get some standard B1 at the store and take one pill - try a 'normal' B1, not a B complex. If that does nothing, either get the 3B or Source Natural TC http://www.sourcenaturals.com/products/GP1314 Haven't tried the Source Natural product but Merkan used one of their B complexes with TC.

Wow, the first negative report - been some blasé, but not negative. Thiamine is the first thing to look at ... then P5P (B6) would be the next ... then folate (B9) ... then TMG. Have you ever taken a B-Complex or Multivitamin? And had a negative reaction? Right now you are only on Lamictal. Its rather complex to figure out any relationship to thiamine, though it affects 5-HT3 and acetycholine. You had help with Effexor for 8 years. Did it help visuals? Do you have ideas why it stopped working? Besides lamectal, you mentioned doc prescribing keppra, sinemet, and naltrexone ... have you tried these three? Back to thiamine. Thiamine would only enable a weakened system - so figuring out which one(s) will be important ... and not so easy [ Also - show this product to your doctor ... he may be able to figure out what is behind it ] Its needed for ATP, citric acid cycle, pentose phosphate pathway - all things necessary to be alive. See https://en.wikipedia.org/wiki/Thiamine#Thiamine_diphosphate ... follow the various links and it is bewildering how important thiamine is. Another factor might be the Trimethylglycine which is in Bio-GGG-B. TMG is needed for methylation, making dopamine, serotonin, melatonin, and CoQ10. There is a lot going on and it even involves B9 and B12. See https://en.wikipedia.org/wiki/Trimethylglycine - another substance needed for being alive. The next thing would be to try a B-complex that does NOT have thaimine cocarboxylase - this would isolate whether TC is what is affecting you. People just don't normally have such reactions unless megadosing B vitamins. And taking a few pills of GGG is not megadosing. It is hard to find anything harmful about thiamine ... Google: Thiamine Poisoning Symptoms Nothing in the Merck Manual http://www.merckmanuals.com/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/thiamin CVS Pharmacy mentions allergic reactions http://health.cvs.com/GetContent.aspx?token=f75979d3-9c7c-4b16-af56-3e122a3f19e3&chunkiid=26273#Thiaicity Thiamin Toxicity "There have been no adverse effects reported with taking too much dietary thiamine. The body excretes any excess amount that is consumed. In rare instances, coughing, hives, itching, swelling, and breathing difficulties have occurred from thiamine injections given by doctors." Just the general stuff like: Upset Stomach, Allerigic Reaction, Imbalance of Other B Vitamins http://www.livestrong.com/article/367247-vitamin-b1-overdose-symptoms/ Thiamine cocarboxylase is less toxic that regular thiamine. See pages 18 and 19 http://www.efsa.europa.eu/sites/default/files/scientific_output/files/main_documents/ans_ej864_Benfotiamine_op_en.pdf It would seem that the reaction is not likely that it is causing a problem, but rather revealing an underlying problem. Please keep us posted on how you are doing

Glad that you could understand it ... it is hard to simplify yet retain any meaning - "stuff just happens" doesn't quite explain anything. Both MDA and MDMA act on 5-HT2A receptors. Some of this stuff sounds worse than LSD MDMA -> "use has been shown to produce brain lesions … neurotoxicity in serotonergic axon terminals. Neurotoxic damage to axon terminals has been shown to persist for more than two years … Adverse neuroplastic changes to brain microvasculature and white matter also seem to occur in humans using low doses of MDMA. Reduced gray matter density in certain brain structures has also been noted in human MDMA users … produces persistent cognitive impairments in human users … Impairments in multiple aspects of cognition, including memory, visual processing, and sleep have been noted in humans … the magnitude of these impairments is correlated with lifetime ecstasy or MDMA usage. ... increased rates of depression and anxiety… at high doses, MDMA induces a neuroimmune response which … making the brain more susceptible to environmental toxins and pathogens." https://en.wikipedia.org/wiki/MDMA#Long-term MDA -> "Relative to MDMA, MDA is also a more potent releasing agent of norepinephrine and dopamine and hence is more stimulating in comparison, and is also notably several-fold more neurotoxic to serotonergic neurons" https://en.wikipedia.org/wiki/Methylenedioxyamphetamine#Pharmacology Whatever the case, there are clearly things people can do to manage HPPD better. And its reported that most people recover from HPPD. The 2-year thing was interesting, showing slow recovery - something common to most HPPDers. It is also clear that many things are involved - even Dr A doing a dopamine drug trial. Serotonin, Norepinephrine, and Dopamine get the most attention. [ will try to keep this thread focused on serotonin ]. But changes in blood-brain-barrior and vascular are noteworthy. There are so many drugs and effects out there. In the end, understanding what is going on can help some ... its a matter of each person's outlook and makeup. Some prefer not to know since it may feed fear. Others find it calming to begin grasping the reasons for all the weird stuff being experienced. The most important thing to realize is that their is hope of getting better, of 'management', and of developing a happy life. The brain is very malleable and each person can learn to stack the odds back to their favor. As for upregulation, it would be interesting to figure out how to do that. If 'normal' is the base line and 'high'/'tripping' are downregulating ... what is the opposite of 'high' and 'trip'? If down-to-earth is normal, what is below down-to-earth? Can only imaging the 'treatment' would feel aweful, lol - the mythical hell.

Normally 35mg thiamine would be plenty, so if you have that already, then try it. However there is a problem for some of us that 'regular' thiamine doesn't do anything useful. Most thiamine is listed as thiamine, or thiamine mononitrate or thiamine hcl. What we are testing on this thread is specifically thiamine cocarboxylase. It is readily used by the body ... so that is the form you will want to try. It doesn't seem to require much (I take in the range of 3 to 10 mg / day)

While 'specializing' (focused primarily) on dopamine, one would be remiss to ignore other neurotransmitters. Already mentioned is thiamine's importance for acetylcholine and GABA. Now the topic of serotonin must be explored because of its involvement with both HPPD and thiamine metabolism So started a thread, Serotonin and HPPD http://hppdonline.com/index.php?/topic/5120-serotonin-and-hppd/ Read the first post there and then compare with TD Serotonin and Thiamine Deficiency Thiamine deficiency alters serotonin function: “Thiamine deficiency: selective impairment of the cerebellar serotonergic system” http://www.ncbi.nlm.nih.gov/pubmed/27736 “It is known that several neurons, especially marked in serotonergic neuron, are damaged in humans and rodents in the earlier phase of TD” http://www.ncbi.nlm.nih.gov/pubmed/15164618 “These results suggest that acute thiamine deficiency, induced by PT, both increases brain 5-HT synthesis and impairs 5-HIAA efflux from the brain” http://www.ncbi.nlm.nih.gov/pubmed/509224 “There is a close correlation between neurological manifestations and changes in brain 5-HT metabolism in acute thiamine deficiency” http://www.ncbi.nlm.nih.gov/pubmed/509224 “changes in the density of the postsynaptic 5-HT2A receptor population” http://www.ncbi.nlm.nih.gov/pubmed/8752118 Reading these texts show that serotonergic alterations occur in mild as well as severe TD. With these points in mind, it is no great leap of imagination to speculate that developing HPPD may involve low thiamine levels or metabolism. Or that the progression of symptoms can be interrelated. Or that recovery could be hampered by such.

Thought that ED stood for erectile dysfunction ! Wonder how many elderly suffer from HPPD and/or visual perception disorders?

That should be fine ... who knows, a little lamb brain won't hurt. I've also tried the Immunozyme Forte and it works good ... some bovine placenta and parotid too, lol. The 3B-G is the cheapest but returns and shipping isn't worth the bother. Its great you were able to get something with TC. All of these have thiamine cocarboxylase: 1 pill = 1.0 mg with Bio-GGG-B http://www.bioticsresearch.com/sites/default/files/productlabels/1143-web.pdf 1 pill = 1.5 mg with Bio-3B-G http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf 1 pill = 0.5 mg with Bio-B-100 http://www.bioticsresearch.com/sites/default/files/productlabels/1133-web_0.pdf 1 pill = 5.0 mg with Bio-Immunozyme Forte http://www.bioticsresearch.com/sites/default/files/productlabels/6300-web.pdf Guess start with 2 or 3 and see how it goes. Hopefully you respond well! ... then you can work out better prices. What meds are you on right now? What are your most annoying symptoms?

First a few terms: Agonist – “a chemical that binds to a receptor and activates the receptor to produce a biological response” https://en.wikipedia.org/wiki/Agonist Antagonist – “blocks or dampens … responses rather than provoking a biological response” https://en.wikipedia.org/wiki/Receptor_antagonist Inverse Agonist – “induces a pharmacological response opposite to that agonist” https://en.wikipedia.org/wiki/Inverse_agonist Down Regulation – “decrease in the number of receptors” https://en.wikipedia.org/wiki/Downregulation_and_upregulation Drug Tolerance – “concept where a subject's reaction to a specific drug and concentration of the drug is reduced followed repeated use, requiring an increase in concentration to achieve the desired effect” https://en.wikipedia.org/wiki/Drug_tolerance Serotonin and HPPD - LSD While serotonin isn’t the only player in the game, it is important and studied. Some of the strongest hallucinogens (i.e. LSD, mescaline, psilocybin) involve serotonin. Much of the effect has been attributed to increasing activity of 5-HT2A receptors - scroll down to 5-HT2A in this table: https://en.wikipedia.org/wiki/5-HT_receptor#Subtypes . Also note that “5-HT2A antagonists block the psychedelic activity of LSD” https://en.wikipedia.org/wiki/Lysergic_acid_diethylamide#Pharmacology . So LSD is a 5-HT2A receptor agonist - 'tripping' is from over stimulation of these receptors. While perhaps a bit technical, it is important to note that in the visual cortex, 5-HT2A receptors are inhibitory - “5-HT2A may also have an inhibitory effect on certain areas such as the visual cortex” https://en.wikipedia.org/wiki/5-HT2A_receptor . Inhibitory receptors reduce neuronal firing rates. Because of these points, certain medications can also cause HPPD symptoms. For example, risperidone is inverse agonist of 5-HT2A https://en.wikipedia.org/wiki/Risperidone#Pharmacology Posthallucinogen-like visual illusions (palinopsia) with risperidone in a patient without previous hallucinogen exposure: possible relation to serotonin 5HT2a receptor blockade - http://europepmc.org/abstract/med/10721882 LSD-Like Panic From Risperidone in Post-LSD Visual Disorder - http://journals.lww.com/psychopharmacology/Abstract/1996/06000/LSD_Like_Panic_From_Risperidone_in_Post_LSD_Visual.8.aspx Moving on … developing tolerance is typical. There can be several mechanisms for this but of particular interest is downregulation. Note with LSD, “tolerance is probably caused by downregulation of 5-HT2A receptors in the brain and diminishes a few days after cessation of use.” - https://en.wikipedia.org/wiki/Lysergic_acid_diethylamide#Tolerance Neurons normally add (upregulate) and subtract (downregulate) receptors. That is the basis of neuroplasticity - the ability to learn/adapt. While there are many scenarios, in this context, LSD over-stimulates 5-HT2A receptors … so the brain responds by reducing the number of them. So the sequence of events is this: Over stimulation of 5-HT2A receptors causes hallucinations The brain compensates by reducing the number of 5-HT2A receptors 5-HT2A receptors are inhibitory in the visual cortex, therefore the reduction of them (without LSD) is synonymous with over stimulation (with LSD) Until a balance is restored, visual perception will remain altered With some HPPDers, the affected neurons fail to upregulate after the ‘trip’. There could be many reasons for this such as: the brain adopted the change, learned to ‘trip’ as normal the brain is unable to ‘restore’ quickly due to nutrition, genetics, and/or stressors the brain is injured too significantly to restore Dr Abraham hypothesizes that HPPD is a ‘‘disinhibition of visual processing related to a loss of serotonin receptors on inhibitory interneurons’’ https://www.erowid.org/archive/rhodium/pdf/hppd.review.pdf Whatever the case, the important point of this post is HPPD involves changes in serotonin activities.

Tried clonodine last fall. The first pill was very calming and slept well. But the next morning was the opposite of calm. Same thing the next try. So stopped ... and didn't sleep but 2 hours/night for 5 days. But there was something 'good' about it. So introduced 1/2 pill before bed and 1/2 in the morning. Did well with it but only worked with it for ~month. The reason for not continuing is hypotension. Everything that helps is hypotensive. Am not faint but it gets annoying being 90/60 with heart pounding all the time. So for now, am not using it. Given the recent changes from thiamine cocarboxylase, might retry later this year. Here is an interesting report about using Clonodine for HPPD: LSD-induced hallucinogen persisting perception disorder treatment with clonidine: an open pilot study. "Of the six patients remaining at the end of 2 months, the average CGI score was 2.5 (SD = 0.55) and the self-report scale score was 2, indicating mild symptomatology. LSD-related flashbacks associated with excessive sympathetic nervous activity may be alleviated with clonidine in some" http://journals.lww.com/intclinpsychopharm/abstract/2000/15010/lsd_induced_hallucinogen_persisting_perception.5.aspx So it is worth a try.

While one shouldn't be too quick to dismiss the "couple of disc bulges", since your peripheral nerve problems started at the same time as your HPPD, it indicates possible systemic distress on neurons - perhaps you would benefit from Thiamine Cocarboxylase http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/

The RDA for a healthy guy is over 400 mg / day https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ Stress increases the need. The body will actually start using up magnesium before resorting to calcium (even from the bones) So the level you are taking would not seem to be troublesome. Another factor is Autonomic Nervous System dominance ... that is if a person tends to be Sympathetic dominant or Parasympathetic. While that take a little effort to figure out, in the end it is helpful in determining how much magnesium one needs. It comes down to this: Increase magnesium to compensate for Parasympathetic tendency Increase calcium to compensate for Sympathetic tendency Lastly (being on a roll with TC), one of the pathways involving thiamine requires magnesium: Hypomagnesemia "magnesium is needed for transforming thiamine into thiamine pyrophosphate" https://en.wikipedia.org/wiki/Hypomagnesemia#Drugs Thiamine and magnesium deficiencies: keys to disease "Because mild to moderate TD results in pseudo hypoxia in the limbic system and brainstem, emotional and stress reflexes of the autonomic nervous system are stimulated and exaggerated, producing symptoms often diagnosed as psychosomatic disease" http://www.spectracell.com/media/uploaded/2/0e4622378_1445884980_2417abstract2015medhypoththiamine-and-magnesium-deficiencies-keys-to-disease.pdf

Have you tried 2 or 3 per day? Also, did sinemet help you? (Perhaps the combination would help???) It is truly amazing that someone suffering HPPD for 25 years would get any benefit from a simple vitamin. Fatigue is one of the most debilitating things with HPPD. While anxiety is perhaps the most 'painful' and most discussed, often when it is resolved there still remains some level of fatigue. TC definitely has improved my energy (easily gained an hour or two per day) ... but the later half of the day still tends to wipe out. Its been just over 7 weeks now and still a subtle leveling off. [ There is a young man where I live who has been trying TC for 2 weeks so far (he suffers very bad fatigue, not HPPD). He doesn't perceive any change but his parents say he is doing a lot more. So it isn't conclusive but if it is helping, it is illustrative how subtle/slow improvement is and how entrenched fatigue often is. ] So you don't see changes in visuals. Do you have visual snow and/or DR? What are your main visual symptoms? Are you getting help with 'regular' thiamine? (this B complex you started with) Or did you later get thiamine cocarboxylase and it helped you? (And if so, which product?) [ I realize that these are a lot of questions but it is important to clarify to help each individual and assess what might be good for others - to understand the underlying mechanisms of each HPPD symptom. ]

How much magnesium are you taking each day?

Low dopamine levels have been linked to TMJ

When you say your HPPD is long gone, what about the non-visuals? Feeling 'stoned', tired, and without power does not sound 'long gone' ... did you feel this way before HPPD, and now your are back to square one?

Anxiety is under control but it is dynamic and requires mental/emotional self-control and, at least for me, variations in med dosing. But fatigue is trenched in. Dopamine meds help. Thiamine cocarboxylase helps. But by sometime after noon, wind-down like a toy

Anxiety is frequently the most debilitating. There are always worse things ... though this one is actually harmless (a little different than 'floaters')

One curious factor about thiamine cocarboxylase since it is a vitamin instead of a medication, is the dosing. With meds (Klonopin, Keppra, Sinemet, etc), one can take too much or too little. But with thiamine you just take some to replete and wait for any effects. Once you get past a few mgs/day, it won't matter. The more deficient/depleted, the more rapidly one would notice effects. Its been 7 weeks now for me and don't notice anything when taking or skipping a dose ... but notice that overall feel substantially better, though not 'cured'. Merkan, You could try some 'regular' thiamine and see if you benefit (typically thiamine mononitrate is what is added to food and in supplements). I tried this the 2nd day (100mg mononitrate) and felt nothing, yet took 3mg cocarboxylase a couple hours later and felt it in within the hour. This is suggestive of a metabolic conversion problem as opposed to an absorption or malnutrition issue. At some point you will not notice whether you take it, but will see overall changes in the weeks to come. It will be interesting to see how (or if) you change your medication levels. Do you notice any difference since the first day? You've only been taking it 6 days so far. Are you retaining benefits? Are you gaining additional benefits?

You are right, anxiety has little to do with visuals for some people - I am one of those, zero connection. But then there are others (perhaps the majority) that once they start getting control of their anxiety, visuals quiet down, some even report the level of visuals fairly matching their anxiety. Some people have HPPD 24/7. Others have it intermittent (flashback) or varying intensities. As a side point, anxiety is often the most debilitating symptom for those suffering HPPD (and who, obviously, have anxiety in the symptom 'list'). The visuals are more annoying than actually debilitating. Then there are the very few who report liking it ... clearly they aren't suffering the more nasty symptoms.