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About shan1212

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  • Birthday April 18

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  1. If you're in the US, the problem with getting the supplies might be the overall shortage right now caused by much of the supply being produced in Puerto Rico. My IV hydration clinic and my regular doctor have both had issues getting their regular supplies.
  2. I think autonomic dysfunction exhibits differently in different people. I have had life-altering POTS for the last six years, but only in the last six months have I been diagnosed with Chronic Fatigue Syndrome and started experiencing exercise intolerance. I have continued exercising throughout, with a slight reduction in stamina and ability as time wears on, then suddenly a big reduction. Even today, when I often can't perform simple errands or sit with my family at the dinner table, I still sometimes experience a boost from exercising rather than a drain. I guess I would just say as on
  3. Your doctor said forgoing the second test would be OK but not preferable, right? I guess in your case I would not do it, then. I have a flying phobia and while I can make myself do it, my body is in such a state of panic and alarm for a long period that I have to take that into consideration when I decide whether or not I'm up to it. I have to recover not only from the effects of flying but from the adrenaline and cortisol overload. I took 8 flights this summer and fall and it never really got any better, so exposure didn't help much. I also did hypnosis which did help some. Kudos to you
  4. I'm doing an elimination diet now. My doctor wants me eating a very clean gluten-free keto/mito (with one serving of grains per day allowed) diet for energy, but he also has me eliminating foods I showed sensitivity to the IGG test. I know some people don't put much stock in the IGG test as a way to determine sensitivities, but so far I am seeing very promising results. I have been declining steadily for six years. This past month, it had gotten so bad that I was often unable to eat dinner at the table and was leaving the house only when necessary. Because of my lack of technological skills
  5. I tried this recently but didn't love the taste. I prefer grape or orange NormaLyte which also follows the WHO formula. I prepare a half liter of NormaLyte before bed every night and drink it first thing in the morning. And then I drink a couple more as needed throughout the day, plus maybe a Nuun or two, plus my homemade electrolyte mix. And I still am always thirsty!
  6. I've been getting fluids weekly at a new hydration clinic for the last couple of months. In the past I would get them through my doctor during my "summer slump," but he has gotten more patients and it's harder to get in with him. The people at the clinic have been great at working with me, and it's so much nicer to pop in whenever I want versus setting up an appointment an dealing with a doctor's office. I also get a Meyer's Cocktail of vitamins along with it.
  7. I would be interested in an exercise accountability thread! After doing some reading about increasing your VO2max, I have switched up my treadmill time. Previously, I would run as far as I could (0.5 to 1.25 miles) at an 11 min pace, then walk another mile or two. Then I read that endurance training requires at least 30 minutes of exercise 5x per week, so I am making sure I continue on until I hit 30 minutes. And then I started reading about interval training, so this week I have started doing 3x 3 minute "sprints" (increasing my pace to 10:20 min/mile) with 3-4 minutes of walking in betw
  8. I did experience the kind of crash you're talking about when I was running longer distances (4-5 miles) a few years ago. Dr. Sica said I was probably pushing myself too much. It's all so much trial and error. I continue trying to run, but these days I can only do a mile. Then I walk another mile or two. I do workout videos, and I can't really tolerate the ones that are too quick with high intensity interval training. I need longer, slower workouts. I've pulled my old Firm DVDs out and am trying to build muscle mass. My goal has always been to do what I can. So when I've broken a foot o
  9. I am not a doctor, obviously, but it would seem to me that if you have already had two pregnancies while symptomatic with POTS and everything went OK, then you could figure on things going just as well this time. Of course, anyone, POTS or not, can have a very different experience one pregnancy to the next. I was diagnosed during my first trimester with #2, and my OB had me on home IV fluids for a while and a low dose of metoprolol in coordination with my cardiologist. The birth went fine. Actually, I switched from my OB to a midwife practice at 37 weeks, and that probably saved me from havin
  10. Looking back on it, I'm thinking there's also a connection between what I do when I land somewhere . . . if my sleep or hydration is affected further beyond flying, then that's the kiss of death. So waking up early, jet lag, or heavy drinking can all tip the scale into a POTS episode. The one time I didn't get sick, it was the shortest flight flown at what I assume was the lowest altitude, there was no time change, etc. My husband and I have been to France five times together and I'm really sad thinking that maybe we can't do that any more. I'll have to try flying again at some point, but a tr
  11. YES! My first POTS episode was after flying to Paris with my husband for our fifth anniversary. We arrived, I felt fine, we ate lunch, and then I spent the afternoon and evening on the bathroom floor while my husband got me Gatorade and a baguette. If I'd been at home I'd definitely have gone to the ER. Then three months later I flew to Miami to meet up with some girlfriends. We went out drinking, and the next morning I woke up feeling like death. I texted all my friends, "Need Immodium AD and gatorade, SOS" but they were all still asleep. Again, if I hadn't been in a strange place, I probably
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