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Everything posted by yogini

  1. 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.
  2. 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.
  3. 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.
  4. I am so glad you are feeling better!
  5. 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.
  6. 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.
  7. 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!
  8. is your doctor in the loop on the change in your BP and medication?
  9. 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.
  10. 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,
  11. I agree - I don't know much about autism, but I imagine POTS or any chronic illness might be harder to process or cause stress. I would also look into the side effects/interactions of florinef and any other meds he's on. I used to take florinef many years ago and seem to remember that it causes anxiety.
  12. I would be very annoyed with that response from the technician. Did you get to meet with a doctor about your test results? It's normal question for you to ask if you have POTS after the TTT - and a simple yes or no answer from them based upon whether your HR increased 30bpm during the test. POTS certainly isn't over-diagnosed, it is way under diagnosed. If you click on the DINET main page under information, it will explain the difference between POTS and NCS. You can have both - they are both dysautonomia. There are some differences, but many of the treatments are the same.
  13. I have POTS with low BP and have never passed out. I think people with POTS can have variable BP - some run high, some run low and others are all over the place. Fainting is more common in NCS than POTS -- it is possible to have both conditions. It does seem strange that you'd pass out while your BP is normal. Maybe ask the next time you see your doctor?
  14. I think some people find a cause, but many of us don't. I got this following a virus, that's all I know. All of my tests other than the tilt table came back normal. During the first few months I saw many specialists, went to the Mayo Clinic, etc. Most doctors don't understand POTS at all, but even the experts can only do so much because the science is still developing. It is much better now than when I first got sick 10+ years ago, but still developing. After I didn't find any clues I shifted my energy to trying different medications and forms of exercise. Many of the treatments
  15. Did you feel better on midodrine at all before you got the hives? It seems hard to know whether the midorine caused the hives because you didn't get them the first time you tried the medicine, rather 4 days after. It is a short-lived drug which I don't think builds up in your system. If your doctor says to retry it, this may be the reason and maybe it is worth trying. Unfortunately it can be a bit of a process to find the right treatment - no easy answer for most of us. Hang in there.
  16. Did your dr ok taking the extra medicine? You can search through old posts to read about how to reduce the effects of exercise - different types of exercise and strategies.
  17. Yes, fitibit is with an app. It might make sense to do some research - I haven't looked into this lately. I bought my HR watch 10+ years ago and back then the scientifically accurate HR monitors all had a chest strap, and Polar was the brand everyone was buying. Maybe the technology is better now, but still think most ECG accurate HR monitors have a chest strap. I know there have been lawsuits against the fitibit for mistakes.
  18. I got my fitbit on clearance at Bed Bath and Beyond. I found it to be more of a toy and a pain to use because you have to recharge it and sync with your phone. I prefer the Polar HR monitor which I used every day for a few years when I first got POTS. The Polar is scientifically accurate, the Fitbit isn't.
  19. Sometimes the heart rate monitor isn't accurate. When you are in doubt count your pulse with your finger. When sleeping or lying down it also isn't unusual to have a low HR. Mine has definitely gone as low as you describe during my sleep, when I wore a holter monitor. This is even when my POTS was at its very worst when my standing HR was 160. My doctor told me the low resting HR was normal and nothing to worry about. If you are worried about high or low heart rate the best thing to do is call your doctor and get a full workup from a cardiologist.
  20. I am not sure how long it has been since you stopped your meds. As others have mentioned, dysautonomia symptoms change every day -- you have periods of good and bad. If you feel better right now, it might make sense for you to stay off medications until you start to feel sick again. Meds have side effects, which could've been part of the issue. Monitor yourself and you can change your mind at any time. Keep the doctor in the loop on your decision -- if you suddenly start to feel sick again you'll need his help. Some medications can be taken as needed - and maybe you can ask him abo
  21. Interesting. Did your doctor say this symptom is from dysauotnomia? It doesn't sound typical.
  22. What is the nature of the breathing issue you are having?
  23. Paxil (an SSRI, like Zoloft) worked for me to improve all my symptoms, including brain fog and a whole host of other things. , It is more of a med used for treating dysautonomia, and not particularly aimed at brain fog. Often if you find the right med or treatment - which might be an SSRI, florinef or a beta blocker or something else - many symptoms will improve. There are also some drugs which dysautonmia patients take specifically to improving brain fog. I think some people take ADHD meds, for example. You might be able to find info about these by searching on the forum.
  24. Unfortunately, the treatment for POTS is usually a complicated process that takes a lot of patience. Take it from those of us who've been there. Don't put too much pressure on any particular test or appointment or medication.
  25. Did the doctor say you were getting an IV or blood draw? This is part of some tests, but not all. If it makes you nervous, ask if you can skip this part.
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