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About Sushi

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  1. Yes, the “normal” range is between 40 and 60 but low pulse pressure can be common among those of us with dysautonomia. On my tilt table test my pulse pressure went down to 8 and they stopped the test. It is definitely something to discuss with your autonomic specialist or cardiologist/electrophysiologist.
  2. My autonomic specialist had me track this and I definitely also have this problem. He regarded it as a marker for Dysautonomia.
  3. Well said! Life is very different these days, but it is possible to adjust and find new ways of experiencing connectedness and satisfaction—and even of working. The Americans with Disabilities Act is our friend here. And, strangely, time helps, in that I don’t even remember what my life used to be. Until we have more research leading to more treatments, the only variable is US—and for me that has meant finding a new way to live within my limitations. Without the internet...we’ll I can’t even think how life would be.
  4. I got a pacemaker for brady-tachy or sick sinus syndrome. I don't have POTS but rather neurally mediated hypotension, though I was getting both bradycardia and tachycardia and also pauses--which are very unnerving. The newest pacemakers have sophisticated algorithms and mine will try to outpace the premature atrial beats that can lead to arrhythmias and tachycardia. Since getting a pacemaker (2 years ago) I have not had any tachycardia and needless to say, no bradycardia! No idea how a classic POTS patient's tachy would respond but for me, no more tachy, just a steady 70 beats per minute (we
  5. That makes sense since many of us get splanchnic (abdominal) pooling of blood and eating carbs makes it worse. I have asked into a restaurant, had a high carb meal and then was unable to walk out!
  6. Do you mean hypermobile EDS? If so, many of us have it along with Dysautonomia though I don’t think there is definitive research on why. I too have hypermobile EDS.
  7. @RM17 Thanks for telling your story—and in a very engaging way that we can all relate to. Sounds like you struck gold with your first cardiologist—you are lucky as many cardiologists know nothing about POTS. Did she mention compression garments—specifically compression knee socks which are easy to wear? They help many of us a great deal. I need to put them on as I get up from bed and I wear them all day until I return to bed. I could not manage to stand and walk without them, but of course, this is individual. Good luck with your treatment. And, by the way, it is not true that POTS and Dysauto
  8. Mild HBOT (soft chamber) will be an experiment for me. Others have found it helpful but there is no real data yet. I belong to a Facebook group where patients with different diagnoses discuss their experiences with it. It is thought to improve immune function, help with inflammation, migraines, etc. Since it is an experiment for me, a friend is lending me their unit to try so that I can discover if it helps before laying out a considerable amount of money. I do feel better at high barometric pressure so I'm hoping that this is a good indication.
  9. Like others, mornings are the worst for me and I tend to stay up late because I feel better later in the day. I feel much better when the barometric pressure is high. I am about to experiment with this by trying mild HBOT, a soft-chamber that can be used at home. It is pressured to 1.3 atmospheres. It can be used with out without supplemental oxygen from a concentrator. Has anyone else tried this?
  10. A poor man’s tilt table test can be really helpful in identifying the basics: whether you have just orthostatic hypertension or whether you also have POTS. It is easy to do at home and would be one step toward identifying your next step!
  11. My diagnosis isn’t POTS but rather neurally mediated hypotension. My Dysautonomia doctor prescribed Strattera, an SNRI, and it worked extremely well for me though I had to start with taking a third of a capsule every other day and it took about a month to increase to a capsule twice per day. It definitely did NOT reset my ANS though, as as soon as my dose wore off symptoms returned. I think this drug worked for me because I tested as parasympatheticly dominant.
  12. I take CoQ10 and haven’t noticed an effect on BP, but of course individuals will respond differently.
  13. A couple of things: some doctors feel that klonopin can tamp down an overactive CNS and at times when I have had severe symptoms, it did seem to do that. I’m not talking about anxiety but the symptoms of an overactive CNS that some get from Dysautonomia. That said, it is addictive even at low doses for most people. .5 mg twice a day is not a very low dose and is likely to lead to dependence/addiction, so it is good to be very cautious in weighing pros and cons. Re: menopause and Dysautonomia—passing through it did not improve my Dysautonomia at all, though it seems to for some.
  14. I wouldn’t call it withdrawal but yes, it didn’t feel great when the dose was wearing off, but that was only for a couple of hours. I never took more than 5 mg and usually mor like 2.5 mg.
  15. @POTSius When I was taking a low dose of Adderall it did help me with OI. I no longer take it because I have moved and don’t have a doctor to prescribe it.
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