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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. It is called “white coat syndrome!” Most doctors take it into account but if yours doesn’t, take your home BP machine with you to appointments and ask your doctor to scroll through the memory. My BP is always higher at a doctor’s office than at home too. Having seizures during your tilt table test must’ve been really distressing! But again, even though you didn’t feel nervous, some part of your brain knew that you were being observed and tested, plus being dehydrated. All that is enough to make you more symptomatic. Plus during the tilt table test you have to stand without moving at all so you would never replicate standing for 40 minutes without moving in your normal environment. My tilt table test results were exceptionally screwy during the “long stand” part of the test.
  2. I was told the same thing and really want to emphasize this—Midodrine can cause dangerous spikes in BP in some people—I know as I had to stop taking it because of this. Taking it near bedtime could be dangerous, and there is also no point as it is to prevent drops in BP while standing. @JFreeer
  3. Helps me too—but in moderation. Perhaps because I have so much brain fog in the morning a little spike of caffeine helps.
  4. Yep, I have Ehlers Danlos. From this interventional cardiologist’s twitter account:
  5. I have had it for a long time and it is true that sometimes it shows on an echo and sometimes it does not. I was told that it can have to do with being in the right position and it can also be affected by hydration levels but that the prolapse doesn’t spontaneously heal—it is just hard too see sometimes.
  6. You could check out the physician finder on this site: https://www.dinet.org/physicians/ Though, admittedly, many patients need to travel to see an autonomic specialist as there are so few. Also, Dr. Blitshteyn, one of DINET's medical advisers offers Skype consults.
  7. Did you ever experiment to see if you are electromagnetically sensitive? I am and will get heart rhythm disturbances if I have a computer, phone, or iPad in contact with my body for any length of time. You are wearing a computer on your wrist so it would be an interesting experiment to take it off for a couple of days and see if anything changes.
  8. Yes, that could be confusing! I have NMH (basically the same diagnosis you have) and I also have Afib as confirmed many times by EKG. There can be a relationship in that many Afib episodes are triggered by the autonomic nervous system—my electrophysiologist thinks that mine are. But, your Apple Watch says sinus rhythm and it has good technology. When you get a random episode of tachycardia it is easy to tell if it is Afib, simply by feeling your pulse with your fingers. Afib has no pattern—it is “irregularly irregular.” The pulse feels chaotic. As @Pistol mentioned, if you really want to check it out, make an appointment with an electrophysiologist (rather than a general cardiologist as electrophysiologists specialize in heart rhythms) and ask for a holter monitor.
  9. He was my doctor too. If he is not seeing new patients and "old" patients like you, who is he seeing? He helped me a lot.
  10. Great! Just make sure to educate them about Dysautonomia so they don’t create an inappropriate program for you. I think I detailed the program I did here, but there is more information on a thread in a ME/CFS forum: https://forums.phoenixrising.me/threads/just-finished-an-intelligent-program-of-cardiac-rehab-and-doubled-my-exercise-capacity.79034/ The program helped me immensely—I am able to do much more in daily life and recover much faster. I am also continuing on my own with a reformer Pilates class (done lying down) and recumbent machines at a nearby community gym. I wish you the best!
  11. That was pretty interesting as they considered it a perfectly reasonable differential diagnosis and discussed different types. Though, in the end, it turned out to be an adrenal problem. Still, it will enter public awareness. It was the episode that aired on March 2.
  12. I had a pulse pressure of 8! On a tilt table test. My autonomic specialist took that very seriously.
  13. Yes, low barometric pressure makes everything worse for me too. This is one reason I moved to the sunny southwest!
  14. Low pulse pressure is a problem for many of us. When I did the tilt table test, mine went to 8! I really felt awful and asked them to stop the test. But seeing an autonomic specialist (if possible) can help with symptoms, even though we don't yet know how to address most of the basic causes--or in many cases, what they are. I just completed about 4 1/2 months of very carefully planned cardiac rehab and it also helped my symptoms a great deal. But the program I did was designed for me specifically as a dysautonomia patient. Most will not qualify for insurance to pay for this high tech, monitored program, but you can design it yourself using online resources as several doctors/reseachers have designed programs for POTS patients. The bottom line is SLOW with only really incremental increases in exercise time and resistance. I increased about 1 minute a week, doing two sessions per week. I took too much time to recover to do it more often. I also only used recumbent machines. Took a lot of patience! Now I am continuuing on my own.
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