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VisualDude

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Everything posted by VisualDude

  1. Simpler to try for sure All the more need is all. Read that taking Vitamin C helps counter the absorption block. Just take it before or in between coffee. As a side point, it is interesting that many HPPDers have problems with coffee. You don't which is great. The WHO link has some useful info: http://www.who.int/nutrition/publications/en/thiamine_in_emergencies_eng.pdf See page 32 about anti-thiamine factors. No need to panic about items listed ... all one needs to do is just take more thiamine and probably it would be helpful that have some point in the day of a couple hours or more where you avoid such things to take the thiamine. I take some when I get up, and as it take the percolator 25 minutes (wife and I drink very strong coffee), that gives time on empty stomach for absorption. Also a couple grams Vit C. This is working fine for me. See page 24 for 'treatment'. In non-emergency situations it is really a small amount, "daily oral dose of 10 mg thiamine should be given during the first week, followed by 3–5 mg for at least six weeks" People take to the ER need higher doses at that time. Also those with rare genetic disorders such as TRMA - "corrected with pharmacologic doses of thiamine (vitamin B1) (25-75 mg/day compared to US RDA of 1.5 mg/day)" http://www.ncbi.nlm.nih.gov/books/NBK1282/ It is noteworthy that they don't even bother with pyrophosphate (cocarboxylase) since most don't have a conversion problem, but rather a dietary deficiency and/or absorption issue. While it should not be necessary, it significantly stacks the odds in ones favor to try Thiamine Cocarboxylase instead of other forms. Also, both the Bio-3B-G and Bio-B Complex products contain some biotin as well, so I know biotin deficiency alone isn't directly my problem. But because some genetic thiamine problems also involve its need (i.e. BBGD), it would be helpful to be sure you get biotin from somewhere if not using the 3B-G. It is just a matter of stacking the card the most in one's favor. On a personal note, really appreciate people trying this. Been discouraged at times when members don't participate in simple polls or answer questions posed. Though certainly respect that many are at their limit in dealing with this disorder - anxiety, depression, frustration, anger, attention problems, etc... So, again, thank you.
  2. Had mild photophobia that dopamine meds helped. Had pain from movement in the peripheral field (yea, that is a strange one) that gabapentin helped. It is gone now after several years. It was so weird, just wiggle a finger at the edge of visual field and it would cause a sickening pain similar to tooth pain.
  3. It is hard to know for sure. When blood pressure goes down, heart rate will at some point start to increase. l-dopa (Sinemet) is a stimulant, but some people can have the opposite effect. ADD/ADHD is a classic example ... they take stimulants (that are similar to PD meds) and it calms them and helps them to focus. I can drink a triple espresso and then take a nap. So don't be discouraged. Fatigue is the most persistent problem I have. The meds I take help but at some point afternoon get real tired. At that point it doesn't matter how many stimulants I take ... they only rattle me and have other side effects. The Cocarboxylase has helped and gradually improving the situation ... but while a soft crash is better than a hard one, a crash is a crash. There seem to be a lot of fatigue disorders besides what some HPPDers have. Fibromyalgia, CFS, etc... And there are 'mitrochondiral disease' organizations working on identifying possible genetics and treatments.
  4. Great, let us know if you notice anything in time. You're hardcore HPPD so who knows. If 10% of HPPDers benefit, it would be good. Noticed that Source Natural has Cocarboxylase as 25mg sublingual. Can't vouch for it until I try it, but it may be easier for some to get. Some standard forms (thiamine or thiamine mononitrate) are 500mg. At first thought, "Eeeeeckk" (pun intended) but then again I'll take 1000mg niacin to flush from time to time. Noticed that some brands come up on Google but the fine print on the bottle isn't Cocarboxylase ... sometimes they mention pyruphosphate on the label so Google drags them up ... Benfotiamine pops up too.
  5. Response to Thiamine Repletion How a person responds depends on how deficient they were. Basically if one is seriously depleted (such as being taken to ER), there is positive effects in a matter of minutes. As the days and weeks go by, a person will gradually have improvements until they get as well as they are going to. The less severe the deficiency, the less noticeable the feel of supplementation. But the days and weeks and months ahead will have subtle improvements. So anyone who chooses to try this, should persist for at least a few weeks ... and after all, if one has bought the bottle, they might as well finish it. I had response starting in 15 minutes, then other things within a day (sharper, clearer vision with improved depth perception). Improved sleeping became evident after a week and continues to improve. For the first week, could feel when needing another dose. Took 9mg/day (2 pills 3 times) for couple weeks. Now don't notice if missing a dose and only taking 6mg/day. Higher doses are not harmful ... one would be more concerned by high amounts of folic acid. LD50 Thiamine is not particularly toxic. If you are a mouse and take Thiamine Cocarboxylase by IV (the hardest hitting method), the LD50 is 360mg/kg. To translate that to a 150 lb human, you would need to inject 24 grams into your vein. Intermuscular is 1000mg/kg so that would be about 68 grams into ones buttox. http://www.lookchem.com/Cocarboxylase/ Oral isn't mentioned - perhaps it is hard to make a mouse swallow that much. A whole bottle of Bio-3B-G is 270mg ... so one would need to swallow 89 bottles at one time to have a 50% chance of death ... if you are a mouse, of course. And if oral is as IV. Since some members have considered ECT, deep brain stimulation and/or brain surgery, this supplement is a pipsqueak (pun intended)
  6. Thiamine and Lifestyle 1 Increased Stress increases the need for B1 as well as other nutrients 2 Diet is important ...A... Foods that don't have thiamine such as white rice. If these are a major part of one's diet, then thiamine malnutrition can occur ...B... Foods that interfere with thiamine absorption. These include: caffeine, tannic acids, Betel nut, alcohol, shell fish, and raw fish (perhaps Beer isn't the best source of ones B vitamines). Taking vitamin C helps absorption of thiamine. ...C... Excess calories in spite of sufficient nutrition (RDAs) 'dilutes' thiamine. For example: High calories --> lower thiamine --> Dysautonomia. "It is suggested that high caloric malnutrition, particularly in the form of simple carbohydrates, is a common cause of defective autonomic control mechanisms in the lower brain that can be likened to the early stages of classic beriberi." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/pdf/nem064.pdf 3 Medications There is quite a list including antibiotics, diuretics, some heart meds (ironic since low thiamine damages the heart), metformin, estrogens. Perhaps this is the reason for a few cases of DP/DR and HPPD from antibiotics. The solution is to increase supplemental B1. See http://naturaldatabase.therapeuticresearch.com/ce/ceCourse.aspx?pc=08-40 Effects are additive. Some cultures have more problems. For example, the Japanese eat raw fish, shell fish, green tea (caffeine and tannic acid), and eat white rice. So historically they have had problems with beriberi. In response they supplement thiamine and have also developed 'synthetic' thiamine (thiamine analogues) such as Fursultiamine. There are other analogues such as Benfotiamine and Allithiamine (from garlic). Perhaps a few HPPDers would benefit from these.
  7. While it is a stimulant, it also lowers blood pressure. So if you have low blood pressure you might feel weak or even faint. Another member had this problem with it. All the more so if you are on another med that might increase drowsiness. If you haven't been taking B vitamins, you could take what you have (even if it isn't the ideal B1 ) If you are just taking a low dose of Sinemet, then one would not typically feel that effect. It is simply a matter of how sensitive one is and other factors. What is your resting BP?
  8. Sounds good. Noticed the label change but the Help and ModeratorCP buttons have the same info (no visible option changes). Perhaps I need to log out and back in? The upgrade should 'reset' things anyway. Will look further, but just finished a lengthy thiamine post and need to go get a drink or jump in a lake or something ...
  9. It has been 4 weeks on low dose thiamine cocarboxylase. It started helping in 15 minutes and over the following days and weeks there have been significant improvements: Reduction in daily fatigue Reduced confusion (during fatigue) Slow improvement with insomnia (gained a couple hours/night gradually in about 3 weeks) Reduced anxiety, agitation, and depression … greater emotional stability Reduced derealization A sense of relaxed peace a couple hours in the morning that I’ve not felt for 10 years Reduced muscle spasms/tetany/dystonia Even and smaller pupils Relaxed breathing Relief from persistent Precordial discomfort Significant improvement in ANS problems including arrhythmias, digestion, heat tolerance, and items listed above Able to drop one med yet retain much of its benefit Vision sharper and quicker No negative symptoms ... just feel more alive. But still need meds This sounds crazy for such a simple item but with a little research, one will find these symptoms are consistent with problems caused by thiamine deficiency. There is so much supporting evidence that I don’t even know where to start. So will just recap the principles, my condition, and be as brief as possible. [ Disclaimers: Am not a doctor, official medical diagnosis is not HPPD, and am not a stock holder of Biotics Research Corporation. ] Relevant Personal History: Have tried multi-vitamins and B-complexes whole life. Have never noticed any benefit or side-effect from B vitamins (with exception of flushing if taking 1000mg of Niacin). Just took them on the principle of good nutrition. This link is one product I’ve used on and off in recent years: http://www.bioticsresearch.com/sites/default/files/productlabels/1131-web.pdf. In January a nutritionist suggested trying this product: http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf Note that it is from the same company and that it is significantly weaker that the other previous B-complex listed. One pill is 1.5mg Thiamin (B1) instead of 25mg. [ Twenty five mg is over 16 times the US RDA (the minimum for a healthy person to remain healthy) and typical B-complex supplements are 25-100mg of thiamin. ] Taking 2 pills of this supplement began helping me in 15 minutes. How is that possible? The 1.5mg of Thiamin (B1) is in the uncommon form of cocarboxylase whereas most supplements are not this form. What is this form? It is simply the phosphorylated form (what is needed in all living systems). https://en.wikipedia.org/wiki/Thiamine_pyrophosphate How could this be valid? Thiamine deficiency is well known. The need for thiamine, and the devastating consequences from deficiency to the nervous system (CNS and PNS) and heart is well established. “Thiamine is a cofactor of several enzymes, including transketolase, pyruvate dehydrogenase, and alpha-ketoglutarate dehydrogenase. Thiamine deficiency produces a diffuse decrease in cerebral glucose utilization and results in mitochondrial damage… electron microscopy shows disintegrating mitochondria, chromatin clumping, and swelling of degenerating neurons…consistent with excitotoxicity.” - Harrison's Principles of Internal Medicine, 14th Edition (page 2455) The role of Thiamin is so important that a Nobel Prize has been awarded because of it in 1929 http://www.nobelprize.org/educational/medicine/vitamin_b1/eijkman.html Thiamin deficiency is either from malnutrition (such as Beriberi https://en.wikipedia.org/wiki/Beriberi , Alcoholic brain disease https://en.wikipedia.org/wiki/Wernicke%E2%80%93Korsakoff_syndrome or from Bariatric surgery) or from genetic problems (such as Thiamine Responsive Megaloblastic Anemia or Biotin Thiamine Responsive Basal Ganglia Disease). See http://www.merckmanuals.com/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/thiamin Since B1 was discovered and studied so long ago, there has been limited interest and few studies lately – just take the stuff. However, recent cases of thiamine deficiency in spite of having normal levels in the blood have caught attention. Such patients responded immediately to IV thiamine but when studied for genetic disorders, they did not have any of the known disorders – therefore there remains yet to be discovered genetic disorders relating to thiamine. This is not surprising since genetic research has only begun in recent years. See http://www.ncbi.nlm.nih.gov/pubmed/24607307 How Common is Thiamine Deficiency? “Some studies have reported a prevalence of the deficiency in about 10% to 20% of hospital patients.” http://lib.ajaums.ac.ir/booklist/1-s2.0-S0899900714001373-main.pdf Hospitals even carry Banana Bags to treat this https://en.wikipedia.org/wiki/Banana_bag . Because thiamin is necessary for glucose metabolism, glucose infusions may precipitate or worsen symptoms of deficiency in thiamin-deficient people. In fact patients have died from not getting thiamine before giving them glucose. Cells cannot process glucose or ketones without thiamine. How is it diagnosed? There is a specific blood test for erythrocyte transketolase activity https://www.uic.edu/classes/phar/phar332/Clinical_Cases/vitamin%20cases/thiamin/assay_for_thiamin_deficiency2.htm But for the most part it is clinically diagnosed – observe symptoms and watch them start going away once given appropriate amount/type of thiamin. The good news is that people begin getting better in minutes. The bad news is that much nerve damage is permanent. However, if some cases of HPPD do relate to thiamine deficiency (and that is a big if that I am now suggesting), ‘damage’ done should be mostly minor enough to repair. Could it be harmful to try? In industrialized countries, much of the food supply is 'enriched' with vitamins (including B1) so you are already taking some thiamine. Because of this, many doctors think it is a ridiculous scam to take vitamins and supplements. By taking a couple pills, the dosage is so low that it normally should do nothing. But if you have a deficiency then some changes will take place. Generally speaking, the worst that can happen is that you get your hopes up and waste $20 trying it … but at least it is ‘nutritious’. How would one know if thiamine will help them? You don’t until you try it. Clues would be if you have non-HPPD symptoms as well, particularly PNS symptoms such as numbness, tingling and/or pain. If you have low dopamine type symptoms, then you will probably need thiamine since neurodegenerative diseases show need for thiamine. While another topic, low dopamine problems will involve ANS (Autonomic Nervous System) symptoms. What to take? Since most of us eat fine and even take supplements, if there is a problem it is due to an enzyme problem (note lower right corner of picture at bottom of post ... it will be one of those arrows). So it would be necessary to take a phosphorylated form (Cocarboxylase, pyrophosphate, ...) I've only tried the one shown above, so am suggesting that. How many will benefit? Unknown. It would seem likely that most would not have significant benefit. But if “10% to 20% of hospital patients” benefit, then perhaps that many HPPDers would as well. In my case, am already taking dopamine meds ... so perhaps it is just synergetic. Well, that is brief while including some of the logic behind it. Quite frankly, many of us have suffered so long that to hear someone propose taking a simple vitamin is likely to evoke the emotion to punch them in the face. So consider it anyway (either option). BTW, Beer has B vitamins ... For those who want homework anyway: Linus Pauling Institute, Micronutrient Information Center, Thiamin http://lpi.oregonstate.edu/mic/vitamins/thiamin Wikipedia, Thiamine https://en.wikipedia.org/wiki/Thiamine WHO http://www.who.int/nutrition/publications/en/thiamine_in_emergencies_eng.pdf
  10. Hi Jay, Am not familiar with this forum software. However (especially if any part of the server involves Windows), you can try a shutdown and restart. If you've ever watched IT Crowd, its a big joke about "Have you tried turning it off then turning it back on?" The reality with computer software today is that it is necessary to turn off now and then. The only system I've seen otherwise was a Unix server that never was shut down or upgraded in over 10 years ... it only had to be because of the Y2K thing for the year 2000. The downside is if it doesn't want to startup again, then you'll need outside help. Usually there are database 'cleanup' options with the software. This software likely stores info using MySQL (a common freeware database package). Certainly the company that produced this would know (click on lower right text: Community Forum Software ...) but they will want $$$. If it is leased, then they should provide free help. On the lower left there is "Help" but for me it is incomplete. On the upper left there is "ModeratorCP" which pertains to function available as Moderator. Presumably you have full rights as "Senior Administrator" and there should be more options. There should be debug help. Perhaps if I had more privileges I could help better. Unless you are in communication with David, not sure what else to suggest. Do you have physical access to the server or are you remote?
  11. Its a SNRI (Serotonin–norepinephrine reuptake inhibitors) - something that increases concentration of serotonin and norepinephrine. In high doses it increases dopamine a little ... meds usually spill over to have effects on many areas. Wiki can get you the basics: https://en.wikipedia.org/wiki/Venlafaxine#Mechanism_of_action It is not an anti-psychotic. SNRIs are newer than SRIs so the effects are less known. Actually little is known about many meds since government approval is based on toxicity levels and effectiveness in helping conditions that the manufacture is applying permission to treat. So it comes down to individuals trying a med and seeing if it helps.
  12. Its hard to know. Just have to try things. Also, depression and anxiety are often situational, either whole or in part. Never underestimate the power of CBT. It sounds too simple but there is much to be gained by learning better emotional control. It is also annoying trying to find someone you feel you can open up to and able to help you. It probably won't completely fix depression but it can help.
  13. There have been some that report better anxiety management with it. However, Effexor gave me seizures ... an only at 1/4 dose (using the standard tapering package). So by day 8 I stopped. It caused cognitive damage that has taken several years to recover from. Specifically the ability to add columns of number was trashed. And problems recognizing adjacent digits (specifically 7,8; 4,5; and 2,3 (worst pair)). So henceforth will not even try another SNRI. Guess it depends on what you are trying to address and how you have responded to other meds so far. Just go slow (be patient and taper) with any med.
  14. It varies from person to person but as a rule Wellbutrin is not prescribed for anxiety, only depression. Perhaps someone with ADHD would find it calming since that is the tendency for that particular dopamine disorder.
  15. Not bright, but absent of being dark. Hard to describe ... perhaps comparing flat-black which has a matte sheen to gloss-black (when not reflecting). This was the only visual symptom that Klonopin helped (though haven't been taking Klonopin for years now). Note: Perhaps it can be compared to the temporary lack-of-black after bright light that normally occurs because of the time it takes for retinal-photo-receptors to chemically recharge. Except it doesn't go away if a few minutes. While the gloss black shines, if you look at the part that isn't reflecting, it is dark-black. Whereas the matte isn't as dark. An example of countertop laminate - Gloss is darker
  16. Wellbutrin reduced visuals. Not much for depression although it was truly uplifting to find a positive response to visuals, etc. Wellbutrin ultimately increases anxiety/agitation which ultimately destabilizes emotions ... which increases depression. (Its a circle of life thing, lol). Its on Amazon, etc ... though don't know about stores in Sweden. It won't change routine. If you can't find that specific company, you can try searching first for Thiamine Cocarboxylase. If not successful, then try Thiamine Pyrophosphate. Of course each deviation could dilute the test, but in principle it would be worth trying. I appreciate your trying ... and hopefully you'll benefit.
  17. Sounds awful. My reaction has been limited to the whole visual field lighting up (white-out) and poor night vision Anxiety often triggers, but so does blood sugar. Do you notice any changes if you eat a cookie or soda (sugar) on an empty stomach? I've some weird ANS issues since this all began (something common with PD and the like). Primarily use gabapentin for this. Sometimes will get 'high' drinking a tall glass of water. Sugar (sweet) can be a problem. For example, last fall couldn't eat anything sweet ... a half apple would cause heart to race, fatigue to set in, and general feeling of crap. This strange sensitivity to sweet continued 2 weeks until I took a couple extra gabapentin capsules. After that ate 3-4 apples a day for 3 months (have apples trees) with no difficulty. Somehow was able to 'reset' the autonomic nervous system response ... but remain touchy (no pigging out on cookies or chips). Thiamine (a new topic of research for me) is intimately involved in energy metabolism (glucose and ketones). For these reasons, am now asking peoples reaction to sugar and hypoglycemia and how it affects HPPD symptoms. Some have tried ketogenic diets (such as done by epileptics) with some help for HPPD.
  18. Can you describe more about what was common between these 2 episodes? Time of day? What you had eaten or were drinking? Etc...?
  19. Hey Merkan, Check this thread: http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/ For 3 weeks have been trying TPP (specifically the cocarboxylase product mentioned). Its helping a number of symptoms and reducing (perhaps eliminating) the need for cabergoline. Since we have some similarities, it would be interesting to see if you notice anything. I've never had a supplement act like a med ... let alone a low dose vitamin. Turns out there is a massive link between dopamine and thiamine, also thiamine and the whole nervous system. In my case, I don't seem to have the ability to absorb 'normal' thiamine. Perhaps you also have B1 issues? At any rate, it is cheap and safe to try.
  20. Wellbutrin was the first dopamine med tried. Low dose (75mg/day am) helped but a week later when going to twice a day (150mg/day) it was too agitating. As for SSRIs, they didn't help and some caused bad anxiety. SNRIs (Effexor) caused seizures and cognitive loss (ability to perform complex tasks) that took years to recover. Tricyclics helped for a day or two but generally had some visual negatives.
  21. Sometimes you can find a PA that specializes in psychiatric meds. It sounds odd but they can be quite flexible for trying things. Since Keppra is specifically an anti-seizure med, some docs won't off-label prescribe. So you need someone willing to off-label prescribe stuff. BTW, off-label prescribing isn't a big deal. For example, Tagamet is for stomach problems, yet they found out that it can be helpful for warts so some doctors prescribe it for that.
  22. Some get HPPD from SSRIs like Zoloft. They certainly can affect vision. Seems like the upset about your girl made for the perfect storm: Unfaithful + Anxiety + Zoloft Are Zoloft and Valium the only meds that your doctors have tried you on?
  23. Here is another one: "low CSF free thiamine levels could be related with the risk for PD" - http://www.ncbi.nlm.nih.gov/pubmed/10471207
  24. More directly, acetylcholine slows the heart. So an anticholinergic (which dephenhydramine is) would speed things. But that should be long gone. Hypotension (low blood pressure) will cause a pounding feeling. And if very low pressure, then the heart will race as well. What is your resting heart rate? Something else to try (perhaps this is a long-shot but simple and safe): Thiamine Low thiamine can cause chest pain (such as "precordial pain"). So its worth a try. For some reason, I only seem to respond to a particular type of thiamine, namely Thiamine Cocarboxylase [ Started a topic on this http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/ ]
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