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Everything posted by yogini

  1. It might be helpful to search other posts as this topic comes up a lot. It sounds like you are preparing correctly. Most people - even those with very severe dysautonomia, wheelchair bound, etc. - do OK when they prepare. I have not heard of too many (if any) emergencies during travel. But if you are worried, maybe it is better to wait until another time when you are more comfortable. Stress will not help.
  2. If you didn't have the symptom before you started florinef, or don't remember, I would ask your dr. Florinef has a lot of side effects.
  3. I think there good info both on DINET and on the forum about the best exercises for dysautonomia. Most people do seated or reclining exercises.
  4. Dysautonomia causes many of us to have trouble keeping up our blood pressure during exercise. Stairs are challenging for us. Did your doctor give you these particular exercises for POTS?
  5. My mandoline slicer slices so thick (or slices my finger)...lol!!!
  6. Have you been tested for low blood volume? You can have low BV without low BP. I think any of us here would really be guessing and we are most familiar with bradycardia incidental to NCS or POTS. Sometimes it takes time to find the right dr for these types of issues. I'd encourage you to keep looking
  7. Have you had a heart workup from your cardio - ECG, EKG, stress test, etc? This should generally pick up anything that is wrong with your heart that would cause you to faint, etc. Palpitations are pretty common and they are scary, but they are usually not dangerous for POTS patients. I would get the workup as a starting point, which you should be able to do without mentioning your concern about driving.
  8. I am always freezing cold. I think I stop shivering at 70! 75/80 feels comfortable. When it gets into the 90s I sometimes feel sick.
  9. A mandolin slicer makes chopping easier. I roast things in the oven with olive oil, salt, pepper. Add spices if you want (like thyme, rosemary, dill etc) : salmon, chicken, asparagus, potatoes, brussels sprouts, cauliflower. Super easy, healthy and quick.
  10. I think the recommended amount of salt for dysautonomia is 5g per day. Most of us who take salt have low BP, although some people with hyper POTS (high HR, high BP) take it too. It may make sense to coordinate with your doctor on this.
  11. Do you have low blood pressure or just bradycardia? If you have low (or normal) BP and low HR, have you tried caffeine?
  12. An MRI is pretty expensive test - mine required special insurance approval - so a dr probably wouldn't order it unless there was a specific concern based upon your symptoms. Is there a particular condition that you are worried about that an MRI could diagnose?
  13. You are right, it should be from lying to standing.
  14. A normal resting HR is considered to be 60-100. The more active you are, from standing, to walking to taking the stairs, the more your HR will go up. I think most of my friends and family would have a lower resting and active HR than mine. Mine is say 70-90 while sitting, 100-110 while standing, 110-120 while walking. I also have an abnormal response to motion - so if I roll over in bed, for example, my HR increases a lot. I think I have IST (inappropriate sinus tachycardia) in addition to POTS. But my doctors do not consider these numbers dangerous. The target and maximum heart rates ar
  15. I think being overweight could affect BP or HR in either direction. It's also normal for heart rate to constantly be fluctuating. It does not stay a flat number. I would compare your average sitting HR to your average standing HR. Sit for 10 mins. If the average sitting rate is about 30 bpm less than the average standing rate after you stand for 10 mins, it indicates POTS. You are right that your legs turning purple isn't normal.
  16. I took an SSRI for a few years, it was great for my overall symptoms but not sure it helped with my sleep. Benadryl, melatonin and ambien have all helped me break the sleep cycle at different times. Your GP or a sleep specialist can probably help if your POTS dr can't.
  17. I switched to Paxil and that did a good job of keeping up my BP. IT was really my miracle drug. I regret ever going on florinef.
  18. I had high BP with florinef. I also found it very hard to go off florinef. I had a total crash when I went off it. But my BP kept going up. After reading some posts on this forum I figured out that I should tapered my dose very slowly, 1/8 pill at a time. That did not trigger a relapse.
  19. I am so glad you are feeling better!
  20. I never heard of Buspar before your post. But I just searched on the forum and this post says it is a vasoconstrictor, which increases BP. If you are experiencing high BP, you might want to ask your doctor or pharmacist whether this drug makes sense for you. You can also make a separate post on the forum to ask people about their experiences with this medication. We are pretty sensitive to meds as a group and I think non-POTS doctors usually do not think about the potential impact on POTS.
  21. I am so very sorry for everything you are going through. Have you spoken to a POTS doctor? A doctor who is treating your anxiety might assume that your anxiety is causing high BP and give you more anxiety meds. But that wouldn't help the dysautonomia and might even make it worse, depending on the side effects of the medication. There are even some POTS meds that help with both anxiety and POTS - like beta blockers and SSRIs - to think about.
  22. In the first few years of POTS I always felt tired and never felt like I rested enough, no matter how much I slept. I think I have always needed 10 hours of sleep, even before I got POTS. I could never get out of bed. Still can't!
  23. is your doctor in the loop on the change in your BP and medication?
  24. I once didn't sleep for 2 weeks straight and went to my dr. It was a big help for me, and my sleep has been much better since then. So I'd recommend talking to your dr if you haven't already. You have a lot of options, like melatonin, benedryl, prescription drugs and even non-prescription things like sleep hygiene. There is hope and improving my sleep really helped me get better.
  25. I had very low sleeping HR and BP from time to time when my POTS was at its worst and my standing HR was the same as yours. It is very scary to have such a big swing, but you might want to check with your dr about this symptom. My dr told me it's normal - even for healthy people - to have a very low HR when sleeping. He wasn't concerned. It helped me to drink large cup of broth followed by water a few hours before going to sleep. I think many others here on the forum with POTS have low HR from time to time. It's counterintuitive. Although the primary symptom in POTS is tachycardia,
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