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Vitamin B1 And Dysautonomia


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#31 lthomas521

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Posted 30 November 2007 - 02:10 PM

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.

#32 ajw4055

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Posted 02 December 2007 - 09:48 PM

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

#33 waterbaby

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Posted 20 December 2007 - 09:31 PM

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!

#34 Sunfish

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Posted 21 December 2007 - 02:31 PM

congrats on your successes!
:) melissa

#35 sue1234

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Posted 21 December 2007 - 02:41 PM

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.

#36 Mrs. Burschman

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Posted 21 December 2007 - 03:48 PM

I want a magic vitamin for Christmas! ;)

Amy

#37 pat57

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Posted 21 December 2007 - 03:57 PM

YEAAAAAAAAAAAAAAAAAAAAA! waterbaby. Happy for you.

;)

#38 ajw4055

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Posted 23 December 2007 - 05:40 AM

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

#39 waterbaby

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Posted 17 June 2008 - 06:51 AM

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

#40 jump

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Posted 17 June 2008 - 11:39 AM

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

#41 waterbaby

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Posted 17 June 2008 - 08:25 PM

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.spectrums...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

#42 beggiatoa

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Posted 01 October 2008 - 10:33 PM

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...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!

#43 beggiatoa

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Posted 01 October 2008 - 10:56 PM

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.

#44 yogini

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Posted 02 October 2008 - 01:20 PM

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...

#45 waterbaby

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Posted 03 October 2008 - 12:22 AM

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?