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Vitamin B1 And Dysautonomia

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Your post blew me right over, Laurie! You went from disability-prone to well in 2 weeks? That's amazing! I'm now taking 40mg transdermally and 50mg orally. Sounds like I'm well behind your 500mg (I'm assuming you meant mg's and not g's...). I should bump up my dosage and see how things go. Did you have any adverse reactions in the beginning, like your symptoms worsening before getting better? And do you mind if I ask you what symptoms were/are the most expressive in your dysautonomia?

PS: Dr. Derrick Lonsdale is all about the B1 angle. He's in Ohio.

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Waterbaby: Where at in Ohio? It sounds like an interesting road to explore...

For the oral doses of B1 what kind are we talking about? (like a pill of pure B1 or all B vitamins?) What brands are good?

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Does anyone know if it is possible to "mask" a vitamin deficiency by taking a daily vitamin?

Maybe it is a simple way of looking at it, but could certain vitamin deficiencies be "deeper" than the bloodwork shows? I am trying to learn/understand if the tissues/bones, absorb vitamins differently than the blood.

I also wonder if it would be harmful to try a small B1 supplement if bloodwork is not screaming deficiency?

tearose

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Tea, though you should check with your dr, excess vitamin B washes right out of your system so it's usually safe to take high doses.

My multivite has 50mg of thiamin which is like 3,333% of the recommended dose - already a super mega dose. (But perhaps it's not in the right form) Lthomas, I would be interested in finding out how you determined the dosing aof 500 mg and which brand to take. I did a quick search over the net and it's really hard to find anything even over 100mg.

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I don't know if there are any differences between brands. There probably aren't. If you think you have a transporter problem, I'd use an allithiamine, such as benfotiamine.

My response to thiamine was dramatic. It's frustrating that the doctors I've talked to about it dismiss it as another "health-food" rant. But I'm not that sort of person. I'm actually a natural skeptic and a fan of evidence-based medicine. The only problem with evidence-based medicine is that it deals with groups, not individuals, and there aren't enough of me to make up a large enough group to study statistically.

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How would you know or think it may be a transporter problem?

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Hi guys: I just had my hormones checked after 3 months of applying the B1 cream. My thyroid, which previously was very low, is now normal. Progesterone, which was virtually non-existent, is now low-normal. I just wrapped up my period and it was a completely tolerable 4 days (down from 15) with no PMS symptoms. I am doing NOTHING outside of diet control (no gluten, dairy, caffeine, alcohol and minimal sugar and fruit) and B1 cream applied once a day. Things are shaping up quite nicely! And I'm told that it will only get better. I am looking forward to how I'll feel after 6 months!

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congrats on your successes!

:) melissa

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That's amazing how one vitamin can make such a difference! Look at what vit. D is doing this past year--it has really made mainstream reading on how important it is. I was reading in Woman's World the other day, and a lady in there talks about how out-of-energy she had become. Tests all looked normal. She said test some more, and they found her vit. D was like 10% of what it should be. She supplemented with prescription doses, and a few weeks into it started feeling like her old self! One vitamin, such a huge difference.

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I want a magic vitamin for Christmas! ;)

Amy

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YEAAAAAAAAAAAAAAAAAAAAA! waterbaby. Happy for you.

;)

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I just have to say WOW!!! Congratulations! That sounds wonderful! Thank you for sharing what you have found!!! ;)

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Hi all! It's been ages since I posted but I wanted to bring everyone up to speed. I have been applying the B1 cream since September 5th, 2007 - a little over 10 months. It has dramatically impacted my dysautonomia such that I was actually able to move out of my parents house and am now living in Seattle where I have a full time job (in an office!!) and have a boyfriend! A little over a year ago my family and I had a discussion about my life as a dependent adult and the possibility of needing to live in a home and now I have a home of my own! The last two weeks have not been without incident. I deal with gastroparesis issues daily, I require the entire weekend to recover and restore for the next week, my new boyfriend has to deal with dinners in instead of dinner out, and my panic attacks have been more frequent and more severe. Yet when the symptoms arrive I really try to give myself grace around them and try not to become angry that my body is betraying me yet again. I remind myself that I have made a quantum leap in what I require of myself and my body every day and it will take a while to get up to speed. I hold fast to my diet (gluten free, dairy free, no alcohol or caffeine, and minimal raw fruits and veggies) and apply the B1 religiously every morning. I also added transdermal magnesium every evening (per Dr. Lonsdale) which helps tremendously with insomnia. I don't know if anyone else is trying this regime but I do hope it will help other DINET members. It is not traditional B1 I am taking but the allithiamine form in transdernal cream. Applying it to the skin makes it a fat-soluble vitamin vs. standard B1 taken orally which is water-soluble. I did try taking the latter form and it did nothing at all for me. Please review the articles by Dr. Derrick Lonsdale on Dysautonomia and Thiamine. He is 84 years old and still sees patients but will not be around forever. I work with him on the phone (as he is in Cleveland) and that has worked just fine. Better than fine! I continue to turn to DINET when my symptoms flare up or when I need to reconnect to others who are living through the battle I wage on a daily basis. I know every body is different and every disease progression responds to different things. It is so rare that we are actually HELPED by something and I love that the pillars of my treatment program (diet and vitamins) are simple, noninvasive, nonmedicinal, and effective (!!). I hope this thread will be helpful to some of you. Reading this forum has kept me company many nights when I did not think I could, or would, make it. My gratitude and support is with each one of you. - Waterbaby

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Waterbaby, your story is amazing!

Is it possible to get transdermal B1 and magnesium over-the-counter, or does one need a prescription?

Thanks,

jump

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Hey Jump: I have a prescription for both but I'm fairly certain you can get the transdermal B1 online. Here's a link to the exact one I take: http://www.spectrumsupplements.com/en/west...labs/index.html. The transdernal mag I get from Lee Silsby compounding pharmacy and I have to have a prescription for it. Now if you can get it without a prescription I'm not sure. I will tell you that I tried the oral supplements of both vitamins and experienced NO improvement in my symptoms. So somehow the transdermal is the magic key for me. Whoops! Have to go! I have a date! :unsure: Ask me any other questions you like about my treatments. I'm ready to shout it all from the mountains! XX waterbaby

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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!

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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.

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I tried taking a highly absorbable form of thiamine for a few months and it didn't help me; other things have. One of the difficulties with this condition is that we're all so different and nothing works for everyone. But it's good to keep talking to doctors, researching and trying different treatments until you find something that helps you...

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RQT919 - did you try taking the transdermal B1 or the oral? I tried highly absorbable B1 and it did nothing for me either. It wasn't until I tried B1 in the form of TTFD and applied it directly to my skin that it had any effect. I had to stick with it for several weeks before I noticed a difference, which wasn't easy because it is a stink bomb! I just celebrated 1 year on transdermal B1 and I am happy to report that I continue to improve. Although sometimes I get overeager with my new-found energy and suffer set-backs (like now) my overall report is a marked improvement year-over-year. I now go OUT to dinner, go to parties, go into the office at least 3 days a week and work ALL DAY in the office. And my recent set back is due to the fact that I am creative director for a fashion company and I just did a photoshoot with 15+ kids and put in a rigorous 12 hour day on set! I know what I'm doing is making a difference. Just like Dr. Lonsdale said to me when I started this program a year ago, "It took you a long time to get this bad, baby, it's going to take a long time for you to improve." But improving I certainly am! I'm still looking for non-medicinal fixes for gastroparesis and ways to blunt the adrenalin response (or over reaction). I'm considering hypnotherapy - has anyone tried it? With success?

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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.

Thiamin. Mg deficiency interferes with responsiveness to thiamin in rats (Itokawa et al., 1974; Zieve et al, 1968). Correction of the Mg deficit has restored thiamin responsiveness in alcoholics with encephalopathy (Stendig-Lindberg, 1972). The Mg-dependence of thiamin utilization is a consequence of the role of Mg as a cofactor in enzymes requiring thiamin (Vallee, 1960). Additionally, evidence has been presented that Mg plays a role in binding thiamin with tissue protein (Itokawa et al, 1974). Thiamin deficiency also inhibits Mg utilization. It may be clinically important that Mg deficient rats with normal thiamin intake had lower plasma and tissue Mg levels than did those with double deficiency.

It seems plausible that efforts to repair the B1. deficiency in aged patients with or without alcoholism carry the risk, not only of a poor response to thiamin, but of intensifying Mg deficiency. The studies that show more vulnerability to thiamin deficiency in older than young subjects, and a need for higher intakes to correct the inadequacy (Oldham, 1962) did not provide data on the status of Mg. Studies of the effect of Mg supplements on the response of patients with vitamin B1. deficiency are needed.

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.

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That's SO true! I apply transdermal magnesium to my inner thighs every night as well! I will say again that I tried TTFD in oral tabs (also those that melt under the tongue) and NOTHING made a difference until I applied it to my skin. There is something about this process that turns the vitamin from water soluable to fat soluable. I apply about 40mg per day and when I have a lot going on or feel sick I apply 40mg 2x's a day.

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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.

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I started with the TTFD for several months before Lonsdale added the Magnesium (as chloride). It's helped a lot with the insomnia. I do have a list of oral vitamins I'm to take as well but with my gastroparesis I have a hard time taking anything with regularity. Those vitamins include: stress B complex, EFAs, CoQ10, multi vitamin. I had been living with my parents for 1.5 years and had my period down from 14 days to 4. Since moving out on my own again and to a big city (with a huge job and a live-in boyfriend) my period has gone back to 14 days (a biproduct of using more cortisol which pulls from progesterone and low progesterone means longer periods). Dr. Lonsdale started me on bioidentical progesterone which i started just a few days ago. The first time I tried hormone replacement therapy it was a disaster. I was only able to stand two days before I took myself off it. That was before I had been on the TTFD. Now, a year later, I'm handling the hormone just fine. It will be a few more weeks before I'll know if it makes any real difference in my period. I'm hopeful though. I can't stress enough that the TTFD and magnesium have been lifesavers but equally important have been my diet restrictions. I stopped eating gluten, dairy, alcohol and caffeine. The results have been very specific: the gluten was causing neurological symptoms (drops in BP, slurred speech, extreme fatigue, 'pass out' type sleep, dark circles under my eyes); the dairy was causing GI symptoms (massive nausea); the alcohol was neurological and the caffeine caused GI trouble, anxiety and panic attacks. Now some of the above symptoms still persist but in a MUCH reduced fashion. I hope I don't come off as preachy or my-way-or-the-highway' as I fully understand that every single person and every single body is different and what helps one may not help another. I've just seen such radical improvement in my life and am so thankful for it that I feel compelled to shout it from the rafters. I still have a long way to go to be 'normal' again but when I look at year-over-year improvement, it's quite marked. It's also wonderful to have a non-medicinal, non-surgical option for healing available. I so hope this helps you as much as it's helped me. Best of luck! Waterbaby

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