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Everything posted by yogini

  1. Coffee has too much caffeine for me. I drink diet soda which I know is terrible for you - but it gives me just the right amount of caffeine to get though my day and I haven't found anything else that works. I gave up caffeine for about 1 1/2 years when I first had POTS and I found that I had more energy after I resumed it. I had to pee a lot even when I only drank water. I make up for the diuretic effect by drinking extra water.
  2. If you think you may have EDS it is worth getting tested, as a starting point before seeing a chiro, etc.
  3. Yes, that is the challenge even with caffeine. It helps with fatigue but also causes tachycardia. For some people the extra energy outweighs the tachycardia but others can't have stimulants at all. Tachycardia also causes fatigue so it is something to think through carefully with your doctors sometimes you have to adjust your doses as it sounds like you did. I found for me getting my HR and BP under control and forcing myself to be active was the best cure for fatigue.
  4. I am not sure that doing cardio would help your high heart rate. Have you ever looked into whether the stimulants you are taking contribute to your high HR?
  5. A day of sleep can be helpful in a flare up. When I was very sick I used to sleep all day on the weekends so I could function during the week
  6. If you stand up slowly and walk around does your HR stay up 30 bpm or more? Or is it only because you are getting up too fast? For dysautonomia it would be a sustained increase, not caused by standing rapidly but just by standing. You should also consider any symptoms of your blod clotting condition as well as side effects of the meds you are taking, which could be contributing to your symptoms.
  7. There are a couple of online places like brightlifedirect and ameswalker which sell cheap compression stockings. Their customer service is very helpful if you call. The more expensive brands like Juzo and Jobst are more comfortable than the cheapies. I suspect you will have to try brands and compression levels and see what works the best for you. Everyone is so different - it is a lot of trial and error. Also, when I was sick and needed compression I used different levels based on how I was feeling. For dysautonomia, most people wear compression stocking on the legs which can be thigh h
  8. What is your blood pressure and heart rate? I found that when I got them moderately under control and started exercising, my fatigue started to wane. Also are you on any medications that have fatigue as a side effect?
  9. It is so true - you have to be your own advocate with any rare illness. I had to read all about medications and guide my doctors even with just POTS. Hope your surgery goes well and you feel better soon!
  10. I assume that this tumor is benign and not malignant/cancerous? If so it seems like it could be a very helpful discovery. I would frankly assume that most of your symptoms are related to the tumor and would be alleviated. I think in this group we wouldn't have a lot of experience with pituitary tumors, but you might want to try googling around for info and to see if there is another online support group. It makes me very sad and angry that so many doctors dismissed you and missed the tumor!
  11. Most beta blockers can be split and your pill is scored, but it is always best to confirm with the pharmacist where you got the pill from. You should also let your dr know they gave you the wrong dosage.
  12. You can always try and if it doesn't work re-increase your salt. However, POTS is generally a longer journey. You'll know for sure if you're feeling better if the improvement lasts a few months. Ups and downs which last a few weeks are normal. What helped me when I was feeling better was to force myself to be more active and that in turn led to more improvement. I didn't try reducing my recommended treatments until I was back to full/normal activity which was a couple years in.
  13. Are you measuring your blood pressure when you aren't feeling well.
  14. In my opinion, if you aren't feeling well and your doctor has recommended more water and salt, it is helpful to try it and stick with it for a while. It doesn't work immediately, you have to do it consistently every day and then it kicks in . It also doesn't work for everyone but I'd say most people find it helpful if they stick to it. You get salt from lots of non-processed foods, like olives, and there are plenty of good posts on the forum with helpful information. If you feel full/fluid in your stomach before exercising, don't drink for the couple of hours before you exercise.
  15. I would start measuring your HR and BP at home. That might be helpful especially if you dont have access to a TTT. You can do a poor man's tilt at home too.
  16. If you think you may have gastroparesis, have you tried any dietary changes?
  17. Have you checked out Dyna which is a support network for young people with dysautonomia?
  18. Have you checked your HR and BP when you wake up?
  19. Call your dr or pharmacist to ask if your BB dosing should be changed.
  20. A healthy person might start at 70 jump up to 120 for a couple of minutes and settle back down into the 90s. That generally does not indicate POTS. You’d need a sustained increase of 30+ bpm. So in other words 10 mins or an hour after standing your HR should still be 30+ from where you started. It’s a bit more complicated and individualized but that is the general rule.
  21. You wrote above that when you mentioned to your doctors they either ingnored or indicated it wasn’t a symptom. I just meant that this is very consistent with advice many others on this forum have received from their doctors, when we had the same question as you. Obviously each person is different. Hope you feel better soon.
  22. Check with your Dr but a HR of 56 while lying down/sleeping is not unusual even in healthy people. The normal range is 60-100 and it is common for HR to drop below this during sleep. You can search the forum, there are many posts on this. Separately dysautonomia can cause both high or low heart rate. If you are walking or running and your HR is 50 that might be more of a dysautonomia related issue, esp if your BP is too low. If your BP is high that can also cause your HR to be low.
  23. In dysautonomia brain fog after eating is usually caused by postprandial hypotension/ low blood pressure
  24. But if you have edema - swelling from excess fluids - it's usually recommended to avoid salt/electrolyte drinks.
  25. Most often low blood pressure is because our blood vessels don't constrict properly. I think you'd have to have a test to determine if you have low blood volume. Some people with dysautonomia have low blood volume, but most don't.
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