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Sushi

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About Sushi

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    Female
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    New Mexico

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  1. I add more Himalayan pink salt to my daily rehydration mix and it doesn’t bother me. I wasn’t sure that salt was helping me until a cardiologist told me to go on a low salt diet (for a condition that would normally be appropriate for. ) It was a disaster and he agreed that I should continue with an extra salt diet.
  2. https://www.thelily.com/a-chronic-illness-upended-my-life-im-still-trying-to-find-a-new-normal/
  3. @p8d The main symptom I get from too high vagal tone is orthostatic intolerance and the clonidine made that much worse as well as making me extremely tired. Hope that clarifies it.
  4. Clonidine was truly awful for me and I stuck with it for a month. In my case, I’m an outlier too too high vagal tone—I need to increase my sympathetic tone to stay on my feet. Anyone have ideas on how to do this? Strattera worked like a dream for some years but I no longer tolerate it. Midodrine spikes my BP even at 1/4 of the lowest tablet made (it is metabolized through CYP2D6 and I have a SNP there). I’d guess that Mestinon would affect me like clonidine. Has it been true for others that Mestinon and Clonidine have a similar effect.
  5. For me the most effective treatment for OI was strattera, a norepinephrine reuptake inhibitor—perhaps the same principle? This is known to help some patients who are parasympathetic dominant as I am. The Dr. Coglan at UAB whom they mentioned, was Dr. Randy Thompson’s (dysautonomia specialist in Pensacola) doctor and mentor. At least the article talked about dysautonomia in the popular press!
  6. I really am and OI is so much better!
  7. That is really low! What does your doctor say about it?
  8. Have you ever been evaluated for arrhythmias during an episode like that? You can get a pretty good idea as to whether you are in a normal rhythm by checking the rhythm of your pulse with your fingers. An arrhythmia is very irregular from beat to beat—beat, beat, slight pause, double beat—that kind of thing. A Fitbit or an HR monitor will not give accurate readings then, but an Apple 4 watch or a Kardia Mobile device will. They actually take EKG’s and computer-read them. You can email the EKG to your doctor. I’m bringing this up from my personal experience of Afib. Before I got a Pacemaker my resting HR was always in the 40’s. After I got it my EP and I experimented with different resting HRs and my OI was noticeably better at 70 rather than the standard 60.
  9. Could that be another form of dysautonomia than POTS? Don’t you need to have a 20-30 rise in HR on standing to have a POTS diagnosis? I had all those symptoms minus hypertension on standing and had bradycardia rather than tachycardia. I say “had” because I now have a pacemaker.
  10. Hmmm. I just talked with a patient who said that she sees him now and then. Did you tell them that you are an established patient with him? I have not heard of anyone at UAB but I supposed that there could be a new hire. Maybe you could ask them for a name. Others can tell you more about Vanderbilt as it is a long time since I considering going there. Hope you find someone.
  11. I have a mutation in CYP2D6 and I did have a problem with Benadryl raising my BP, though the occasional normal dose doesn’t seem to bother me.
  12. I used to see Dr. Thompson when I lived in Pensacola and he helped me a lot. I hear from friends that he is back in practice though if you don’t live in or near Pensacola you could end up traveling to see him only to find that he has had to cancel appointments that day as he still struggles. Good luck.
  13. I had my mitral valve repaired with a MitraClip on June 19th followed by a night in a cardiac step down unit. I tolerated the procedure well though recovery has taken a while—as I expected. I had a followup appointment today and another echocardiogram—the MitraClip is still perfectly placed and the level of regurgitation has remained as “trace” since the procedure. But importantly, my OI has improved tremendously—no more pre-syncope every time I stand up. I am even able to do a tiny bit of yoga. Take away: if you have any level of mitral regurgitation, make sure that your doctor is watching it with regular echocardiograms. Also, for me, severe regurgitation was definitely associated with orthostatic hypotension. I am so happy to be functioning better! 🙂
  14. I use one and I got it with a medical discount through an MS site, Active MSers. They test and rate all the different types. Here is a link to their reviews: http://www.activemsers.org/tipstricks/choosingacoolingvest.html I wouldn’t manage the summer without one.
  15. I have used it though I got it from a recommended source. It worked pretty well but lost its effect after a couple of weeks. Your post is a reminder to try it again.
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