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Suthrngal

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Everything posted by Suthrngal

  1. Thanks Alex for your time. Normal PCT for MAYO was 13% low end. Any idea what types of iron those with POTS take???
  2. This is a very old post but after a search of my MAYO tests (just one more look to try to determine what might not be right...still having PoTS symptoms and now a sudden onset shaking (of extremities). Can someone chime in here. Doctors said my results were fine but..... In Jan iron was 73 In June 44 TIBC Jan 391 June 361 PCT Jan 18.7% June 12% Ferritin Jan 60 June 20 Only thing that came back out of range is PCT in June. I dot even know what PCT is as doc said it is ok. Can anyone help?
  3. I understand that if you have high adrenaline a beta is recommended (at times). But with Midpdrine, when is t commonly prescribed? Is adrenaline involved? Interested to see what symptoms it helps others with. Shaking????
  4. Another thing to consider....Mine started after the birth of my second son. I was nursing, not drinking enough, already predisposed to dehydration and gut painful slow mobility started first, then dizziness etc. Doctor said while you're preg...you have more blood volume then it dramatically decreases after birth. This did not happen after my first, I was unable to bf.
  5. Thanks issie. I feel zingy currently. i streat clear of even natural forms of glutamate. and even still, Glutamate and glycine were high on neurotransmitter test and seretonin and epinepherine were low. Dopamine was fine. Thoughts on this. I find it interesting I never had an allergy and then a severe MSG allergy coincided with POTS symptoms. Right now I am only fighting muscles seizing up in neck and back (6 years) and a vibrating current that I can only imagine is an adrenaline issue. Although I feel this sitting worse than standing. So b1? I saw a post on a b1/b12 cream. Thoughts on that? Issue, your meds that you discussed help which POTS symptoms? My heart rate, dizziness etc is helps to a degree from sodium pills and fluids.
  6. Izzie, I was unable to find MCAD markers snps on 23and me. Can you please let me know the snp? I remember reading on a mthfr site that some were trying DOAsin for MCAD but didn know the snp to search. I haven't heard if it has been helping those with MCAD.
  7. When my POTS symptoms started (6.5 years ago) I suddenly developed a severe mSG allergy. My neurotransmitter tests show very high glutamate and nutraeval shows high glutamic acid levels. Is there a POtS med that helps with this gabba/glutamate balance? (Exotoxicity). In laymans terms.
  8. What's the gene? Wondering if it is identifiable on my 23amd me genetic test. Anyone?
  9. Can someone explain how Midodrine works for POTS? I understand how BEta Blockers work.... If you have too much adrenaline and high heart rate and low Bp.....not sure what I should try. Tried Atenolol, prescribed but not tried Klonapin and on sodium pills. These salt pills do help but I feel like I have too much adrenaline ....do just bb help with this? I'm still very unclear how Klonapin and Xanax helps pOTS physiologically. What do they do? I'm so confused. One doc said I had too much adrenaline and then doing the testing where you lie down and then stand and then walk around...and draw blood to measure adrenaline at each intraval...did not show high adrenaline. So confusing.
  10. I was wondering if this was the first line of defense at mitral valve and prolapse and dysautonomia center in AL.
  11. Soooo good to know. Thanks for your candor.
  12. Let me know Katy what he says. Do you have MCAD?
  13. Psalm, did your "current" start at te same time as the tiny tremor? I am thinking mine are related. Does ur bb help the current feeling? For people with the small fiber neuropathy....what are try treated with? Ideas?
  14. I was prescribed these a few months ago. I tried the atenolol and it made me very lethargic and it felt like my heart was flopping a bit. I didn't take the Klonopin because I hadn't tried one in the last six years and had a reaction to it. So my question is, I'm wondering if I should give it another shot. The doctor said that the Clonopin was given to "reset your autonomic system". I told him that I was not depressed and I was not anxious and I wanted to really understand the drugs that I was being prescribed. Is Clonopin the same as Xanax And are they truly given to reset the autonomic system or are they given for anxiety? As always thank you for your time
  15. I reacted terribly after my pot started to CT dye But did okay with the MRI dye. I react to Zyrtec and Allegra. I have been told by one pots friend that her doctor mentioned that no time release medicine is acceptable for pots patients. Before six years ago I had no negative reactions to medications whatsoever. Now it seems that I react to every other medication I try. Hydrocortisone after one pill had a horrible reaction. Racing heart ER. Do others have problems with hydrocortisone?
  16. Disregard te question about qsart. After looking it up , I had this and it was normal. As was the sweat test. Does this mean there is no neuropathy?
  17. Bren...how do you treat this? I have soooo many of these symptoms listed on the links above.
  18. http://forums.phoenixrising.me/index.php?threads/b-12-induced-potassium-depletion.11180/ I just can't tell if these people are stating fact or opinion. Exhausting.
  19. I saw it on a facebook mthfr group. The links were from pheonix rising http://forums.phoenixrising.me/index.php?threads%2Fwhy-the-potassium-drop-with-the-methyl-bs.14267%2F I have never heard this.
  20. Can you drink traditional Medicinals organic licorice root tea for this purpose?
  21. Have you taken potassium to help symptoms caused by taking so much sodium? Ie if taking so much salt...is it lowering potassium and thus causing muscle spasm? I have also heard the b12 in active form can cause potassium levels to drop.
  22. II am much closer to Arizona and Minnesota wondering if I should schedule an appointment with Dr. Goodman? So he helps you with your pots and also other neurological symptoms? When I went to Mayo Minnesota I saw a general and turn on medicine doctor and then he set up appointments with neurology, Gastro etc. I'm fairly certain with this tremor/current that I need a neurologist and I've already seen one locally so wondering about that
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