beggiatoa

It's interesting that you're having positive results. But if something if having a diuretic effect, wouldn't that make your symptoms worse? If you have POTS, you probably also have low blood pressure.

I, unfortunately, could not be tested before starting benfotiamine. However, based on the symptoms and on how I am steadily improving, I'd say I was deficient enough. I also received results for a mineral hair analysis and my mineral profile is all messed up. Only 2 are normal and the rest are either really high or really low. Even antagonistic minerals are both low. Normally, if one is high, the other should be low. In my case, both are either low or high. That makes no sense. However, based on the work of andy cutler, this points to Mercury toxicity. I quite possisbly have a problem with my adrenals with low cortisol and low aldosterone. Dysautonomia seems to be related to people that were previously infected with Epstein Barr virus (infectious mononucleosis), Which I had when I was 16. So, the plot thickens.

You need to see a doctor and start on a supervised treatment. The darkening of the skin is a sure sign of adrenal insufficiency. Keep in mind that this can kill you if left untreated. Also, adrenals problems are caused by something else. You should work with your doctor to find what this is. What other supplements/meds do you take to get along?

I used to have lots of tachycardia and PVCs and a host of other heart problems. I had great success using magnesium and taurine to correct the problem. Cough is caused by a release of histamine and Magnesium can also work to regulate that. Also, Taurine works to adjust cell membrane permeability, possibly helping you regulate sodium/potassium balance between cells. If you have tried these before? What kinds were you using and how much? I find there are better things than valium to control anxiety.

This sounds very similar to diabetic nephropathy. They use benfotiamine to treat this.

Another quick update. Before I stared using Benfotiamine, my BP was 80/55. I had tremors in my hand. POTS was very bad. I would become very nauseus and dizzy simply riding in cars. I've been using 150 mg Benfotiamine, 3 X per day with meals along with 500 mg thiamine mononitrate and I have noticed the following improvement. Today my BP was at 117/85. I removed stitches from my dog yesterday without any noticeable tremors. I rode in a car all day without feeling dizzy or nauseus. Also, I'm able to bend over, squat, play with my dogs and stand up without almost faiting. This is very good news. I don't really know anything about drugs used to treat POTS. I do know that Dysautonomia involves a problem with the nerves in the autonomic nervous system. B1 works directly to repair these nerves. Obviously, something is working! Other areas I've noticed improved: I don't feel as thirsty. Sometimes I even forget to drink water. My eyes still feel dry and gritty, but I'm hopefull. I've also learned that I have other problems. All this was based on the symptoms and not on any actual tests. However, I do remember having a blood test and finding that I had normal/low sodium (which is consistent with my low BP), and my testosterone was on the low/normal side. I also feel like I am estrogen dominant (I am male). I have a slight problem with gynecomastia and stubborn fat around my mid section which is indicative of high estrogen. I believe I also have low stomach acid, candida, and low adrenal function. Maybe all these things will take care of themselves as I continue this treatment. I also use other supplements, but none of which had any effect on this before, ever. I had mercury amalgams removed in the last 2 weeks and believe I might have been affected by mercury poisoning. I sent in a hair sample for a mineral analysis and the results should give me an idea of what's going on. In my opinion the allithiamine cream waterbaby uses & the benfotiamine both seem equally effective. I like how the cream also supplies methylcobalamine, a type of B12 vitamin that specifically works on repairing neurons and nerves. I've been supplementing with this as well.

Just a quick update. I've been using 1 500 mg thiamin mononitrate pill in the day and 1 150 mg benfotiamine in the evening. So far, I've noticed I get less naseaus while riding in cars and I can squat and sit up without almost passing out. This is a big improvement. I'm excited. I think I have a problem with low stomach acid. Including Betaine HCL also helped a lot. I "feel" the supplements I take better and I don't get gas and bloating after meals.

I was taking thiamin mononitrate (500 mg) for a few days as well as a sublingual form and I didn't feel any difference. However, that all changed when I started on Benfotiamine. Immediately I felt a drop in my blood sugar, which is an expected side effect, so I know it is working. Ofcourse, I'm sure to eat something every few hours to avoid hypoglycemia. Last night, I had terrible insomnia for the first time in a long time. Today, I've felt fatigued all day and have had a terrible headache. I take this to mean a worsening of my symptoms, so I'm hopeful the benfotiamine is working. Again, I really feel bad, I have a headache and I have to eat something constantly to keep my blood sugar normal. My main complaints from Dysautonomia are dizziness, nausea, orthostatic hypotension, constant thirst, my eyes feel irritated all the time. Not to mention, I have bradychardia, fatigue, depression, terrible, terrible anxiety and the list goes on and on. I also have social anxiety and this is taking a terrible toll on me. I also have a mitral valve prolapse, and a 2nd degree AV block (wenckebach). I did a little research on the AV block and the 2nd degree form is found typically in patients with, you guessed it, a thiamin deficiency! I realized I also had IBS for a while but that seemed to improve since starting on L-Glutamine. That really made a difference for me. I also take a bunch of other supplements, including magnesium. Most of them are for the treatment of symptoms that I hope thiamin supplementation will take care of and replace them. I first learned of thiamin and its role on Dysautonomia from a review on Iherb. When I googled, it lead me straight to this site! I'm very grateful for it. I'll keep you guys posted. As a last resort, I'll try the transdermal cream. But I know myself and I lack the discipline to apply it every day. Taking a pill just seems easier for me. Waterbaby, do you take anything else besides the TTFD and transdermal magnesium? One more thing, I get very, very dizzy and nauseous? Does this happen to anyone else? What's interesting is that I've had this problem since childhood. Maybe I've had Dys. since childhood as well and never knew it.

Some people who cannot restore their thiamin status might also have a concurrent magnesium deficiency. You have to correct the magnesium before thiamin falls into place. It turns out some of those transport proteins that help absorb thiamin and use magnesium as a coenzyme. This stuff is getting very, very interesting. From http://www.mgwater.com/aging.shtml The conclusion that lead to believe thiamin deficiency causes dysautonomia is that it [dysaut] occurs in a multitude of diseases and syndromes, the most notable being beri-beri. This means that it has a common etiology. A simple vitamin deficiency caused by something else, seems to work well with this idea. How much thiamin were you using? The daily requirement is set at 1.5 mg but those who showed benefits were taking as much as 100 and even 500 mg per day! This stuff is water soluble so it posses no real danger. In addition, when combating a frank deficiency, high doses are usually administered as is the case for Vit. deficiency. I myself ordered a 500 mg form, a sublingual coenzymated one and benfotiamine. Benfotiamine is used mainly by diabetics to treat peripheral neuropathies that are basically caused by, get this, thiamin deficiency! So the plot thickens... I also found TTFD in pills. I'll save that as a last resort. Also, there's another form used in bodybuilding that's supposed to deliver thiamin to the brain better. I haven't read much about it but maybe some of you can do more research on this. It's called sulbutiamine.

I don't know why everyone here is not jumping on this. I did a little research on thiamin deficiency and it looks like it's the missing link. All we have to do now is overcome any malabsorption problems with thiamin.

I live in Miami also and I cannot tolerate the heat at all. It's too bad really, with all the beaches we have here.

Thank you for this information. I am just beginning to explore the link bW thiamin deficiency and Dysautonomia. I am very excited to find this and I just placed an order for thiamin. I really think this will work for me. I did some more research on this and it seems some people have a deficiency even if they get adequate amounts in their diets. This has something to do with the transport proteins. For these persons, there is also a sublingual co-enzymated form of thiamin. Maybe this can work for you too! http://www.iherb.com/ProductDetails.aspx?c...d=1077&at=0 Also, Benfotiamine has better absorption and bioavailability. I ordered all three forms just in case. I will post and update when I get my order. I hope this works!