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  • The Member Stories section of our site is a place where members can submit their own stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Confessions of a Mitochondriac


edriscoll

By Laurie Thomas
May 2004

Thanks, POTS Place!

I have had POTS and debilitating chronic fatigue for several years. Like many people with those conditions, I have been dismissed as a hypochondriac. More likely, I am probably a mitochondriac (a person whose mysterious illness is actually the result of a mitochondrial problem). I've been steadily improving over the past year, ever since I started taking 500 mg of thiamine (vitamin B1) per day. I tried the thiamine after reading about a woman whose chronic fatigue was due to beriberi (thiamine deficiency), because she couldn't absorb thiamine from her food. Well, my thiamine level was normal, but I felt dramatically better the day after I started thiamine supplementation. I take the thiamine with a garlic pill to make the thiamine lipid-soluble. I also take 800 mg of magnesium (as magnesium oxide) every night. I'm now off the fludrocortisone and the metoprolol, and I don't have to eat 5,000 mg of sodium every day. Okay, so I'm still not back to "normal," but I am much better than I was. Strangers no longer stop me in the hallways at work and ask me if I need to be escorted to the nurse's office.





I had been improving steadily until early March, when my blood pressure started to go to heck again. My resting pulse while standing was 120 bpm one morning, 130 bpm the next, and 150 bpm the day after. I started waking up in the middle of the night with a raging thirst. Something was definitely wrong. Plus, I had this "cold" that seemed to be getting worse and worse. My husband was pressuring me to make a doctor's appointment, but the only doctor I've found who understands POTS is a nephrologist who is no longer in my health plan. So I went to the POTS Place Web site to see if I could find someone else who could help me. While I was there, I checked out the "what helps" section. One thing I hadn't noticed before jumped out at me:

    Treating allergies might help one to feel better. It has been reported that people with POTS lose their ability to vasoconstrict (Grubb, 2000). This means that many POTS patients have problems with their blood vessels being excessively dilated. Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients.
 

    Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants. 

Wow, allergies! What a concept. I got some over-the-counter generic loratadine and some cromolyn sodium nasal spray, and my pulse went back to normal within 48 hours. So, thanks POTS Place. I was able to figure out the cause and solution to my problem much faster than I could get a doctor's appointment. A friend of mine, who is a doctor, said that by the time I got an appointment the pollen counts would probably have dropped, and I'd have looked like a hypochondriac again. Several physicians have suggested that I am actually the picture of health and just go to doctors' appointments for "attention," or that I am just "depressed." I am not depressed. I am frustrated by the devastating toll that this illness has had on my life, my family, and my career. I am not "desperate for attention." I am desperate for proper medical care. The next time I go in for an appointment I'll take a printout of stuff from the Web site with me!



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