Jump to content

Sushi

Members
  • Content Count

    275
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Sushi

  • Rank
    Advanced Member

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Gender
    Female
  • Location
    New Mexico

Recent Profile Visitors

2,197 profile views
  1. Brigham and Women’s hospital in Boston. There is another researcher there, Dr. David Systrom, doing interesting work on exercise intolerance.
  2. I completed 4 months of modified cardiac rehab and was able to double my exercise capacity but the program designed for me was much, much less strenuous than the one linked above. I was really impressed with the knowledge of the doctors and exercise physiologists involved. I only used recumbent machines (nothing upright except one lap around the gym before and after a session). They had me rest for 5 minutes after each 5 minutes of exercise and checked pulse and O2 levels after each 5 minutes. They also had me do stretches and to only exercise twice a week instead of the usual three times. It
  3. To "get the vaccine or not" is a question that many of us will have to face. I was wondering if anyone who sees an autonomic specialist has raised this question with their doctor? Since this is a brand new type of vaccine we can't really extrapolate from our experiences with conventional vaccines. Thoughts?
  4. I guess you’ve checked with Dr. Randy Thompson to see if he is taking appointments?
  5. Or perhaps something you are taking to combat allergies? Decongestants can do this (ones like sudafed). Strangely, I discovered after much trial that fish oil capsules give me palps. I checked in on an Afib forum and some others also reported this.
  6. Have you ever had a sleep study to check for apnea? There are a number of medically validated devices for home sleep studies that give a great deal of information. My cardiologist prescribed one of these and it is read and signed by a doctor who is a sleep specialist. Since apnea is related to several medical conditions and can usually be successfully treated, it is a very helpful screening test.
  7. My fitbit tracks breaths per minute and in the last month it varies between 12 and 15. Of course I don't know how accurate it is but medical sleep studies showed a similar rate and my cardiologist didn't flag it.
  8. I know the patient in this study and indeed, being treated with choline made a big difference though dosing took a lot of experimentation. This person had a specific genetic profile involved so it is probably not a helpful treatment for those with normal choline metabolisation.
  9. I have a diagnosis of CFS as well as dysautonomia and my autonomic specialist did put me on Strattera and Cymbalta for a period but not because of depression, rather to help regulate neurotransmitters that affected orthostatic intolerance. As @Pistolmentioned, check what diagnoses you have been given. And yes, CFS patients are often given other medications though there is no one medication that is helpful for all. I’ve never heard of any one medication that was helpful for more than half of patients, so specialists (there are very few) try patients on different medications and other protocols
  10. 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.
  11. My autonomic specialist had me track this and I definitely also have this problem. He regarded it as a marker for Dysautonomia.
  12. 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.
  13. 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
  14. 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!
  15. 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.
×
×
  • Create New...