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Everything posted by yogini

  1. But wouldn't the blood volume return to normal once the virus exits your system? Most viruses last a couple of days or weeks, but POTS usually lasts much longer than that. My non-scientific theory is that many people are prone to POTS - low blood pressure, EDS, etc. and any kind of "shock" or trauma to the system can trigger POTS/dysautonomia in people who are prone. Car accidents, childbirth, viruses and surgery are all triggers. Viruses can also affect your nervous system and/or cause nerve damage (neuropathy), which are contributing factors to dysautonomia.
  2. You may also want to read thru the forum on types of food. Many of us tolerate some types of food better than others. Once you ID what works for you, it can be easier to eat.
  3. Can you work lying down? Have you tried compression? When I was sickest, I used to drink a big cup of broth a couple of hours before bed, followed by lots of water. This helped keep up my BP at night. During sleep your BP drops and then you haven't had any fluids all night, so you are dehydrated. I also keep water next to my bed so I can drink in the am or if I wake up at night. I think fluids are a huge part of why we may feel better at night.
  4. I don't have mast cell, MCAS or anything else (other than seasonal allergies). I because I have trouble staying hydrated, my skin is very dry and sensitive. I think this is a pretty common symptom for POTS even without the co-conditions. If you have a rash or something else that seems like an allergic reaction, I'd see a dr about it. We are all so very different - and allergic reactions can be dangerous.
  5. I don't think the PCP or the dr.'s office will go out of their way to do anything for me. I think if she had spent a few minutes reading through my charts - or had even an office assistant do it in the morning, she would find some discussion of POTS and meds. The local pharmacy I used (that had records of all my meds) closed. I used CVS until Dec when they stopped taking my insurance. I stopped by CVS on my way home from the drs office and they have no record of my beta blocker. My new pharmacy has no record either, but that makes sense. Insurance is a big reason for some of my issues - be
  6. Unf I need a new prescription, so a dr needs to write it. I think the only way to manage this before I leave is if I can connect with my cardio tomorrow and maybe I will have luck doing that. If I stay with this dr.'s office (which I probably will), I will insist on only meeting with my PCP. The receptionist always told me in the past when the appointment was another doctor - this time they didn't. Going forward I will make sure to ask. The frustrating thing is that they aren't doing their jobs. I think it's an insurance related thing. The service at this office was better year
  7. Thanks. The PCP is supposedly overseas and can't be reached. The problem is that my cardio doesn't take my insurance anymore. I haven't seen him and he would probably require an appointment and checkup to prescribe the meds. I understand why doctors don't want to prescribe medicine without testing. I need an appointment with my PCP to figure it out - but that is what I thought I was doing today.
  8. I just left my PCP's office in tears. I have been going to this dr for about 20 years. He wasn't there today and so I saw a new dr in the practice. They usually tell me which doctor I am going to see when I make the appointment and I always tell them I prefer to see my PCP only. This time they didn't tell me this - and they also cancelled my appointment which was scheduled for earlier in the week and made it for today - by leaving a voicemail - not even asking me if I was available at the time of the new appointment. This new dr was very rude. I didn't like her abrupt and condesce
  9. It really depends on the person - and a doctor should advise. "Restorative yoga" is usually when you set up with pillows which hold you in the pose. There isn't movement movement. You'll get the most out of yoga if you are able to be more active There are a lot of seated and reclining poses in regular yoga, so it can be very gentle even if not restorative.
  10. Ancy, sorry if I missed this in your replies, but what is your blood pressure when your HR is so low? Is your BP very low? If so maybe you want to talk to your doctor about a stimulant, such as caffeine. Or maybe your BP very high when your HR is so low? I see you are on Florinef and midodrine Anyway I hope you are able to connect with your doctor soon as he or she can best help you. Hope you feel better soon!
  11. Yes, compression helps me with both pooling and digestion...
  12. I don't have any scientific proof - but for me high fiber foods are definitely a trigger for POTS. Not to get too graphic - but sometimes when I eat lots of salads, it takes me several days to digest them and go to the bathroom. In the meanwhile I get terrible symptoms (though I am not a fainter). I'm sure it's because the blood is pooling in my digestive tract -- and I feel better once the digestion is completed. I have had similar problems when I tried to eat chia seeds, which are also high in fiber. You could talk to your dr, or maybe it would help to try stopping or cutting back on
  13. When I was first sick, there were many nights when I woke up with my heart beating too fast. It still happens to me occasionally. Like the other person above, for me the swelling happened when standing for too long, due to pooling. For many of us lying down helps reduce the swelling, so it is interesting that you have the opposite reaction. It might also be helpful to measure your HR and BP when these incidents happen so you have more information to give your doctor. I will say that for me what has been most helpful is addressing my POTS as a whole, rather than focusing on spe
  14. I do a lot of yoga. It's been a lifesaver for me. There are a lot of gentle exercises which you can do sitting or lying down. I started with a video and just did a few minutes at first, skipping anything that was too hard or that triggered my symptoms. Now I can do advanced classes at a yoga studio and my POTS is much better!
  15. You can try searching for spinal atrophy on the forum, but I don't remember seeing too many posts on this topic before. It sounds like your doctor has a good plan - to check your heart to make sure the structure is OK. POTS symptoms go up and down - so hopefully you're just going through a down time that will pass.
  16. You may want to search on this forum for other experiences with chiropractors. Some people have had negative experiences. II think you have to be careful - and also take into consideration other conditions you may have like EDS.
  17. My guess is that permanent hearing loss is not a common symptom with dysautonomia. But maybe there is something unique in your case which is causing both issues. Have you had comprehensive ear testing? What about an MRI?
  18. Josh, I think many of us have felt in your shoes. POTS is super scary, especially when it is new. Check with your doctor but there usually isn't much risk of death for most of us. I would also stay away from activities that trigger symptoms, including moving heavy furniture and other over-exertions.
  19. I think there are some drugs - like beta blockers that are stronger in your system when you take them. For florinef it is slow acting. So when you start taking it is about 2 weeks (or even longer) before it starts working. I don't think it's just the half life but the way the drug works in your system. It makes the body retain sodium, which makes you retain water. It takes time for the sodium to build up. Even if you stop taking it, it takes time for the sodium to wash out of your system. Thus the time of day does not make as much of a difference as you might think. This is true to my
  20. If your sleep has changed and you started taking a medication at the same time, there is a good chance it is related to the med. I agree with the post above. My dr gave me some info on sleep hygiene and the tips are really good. I also bought sleep music from Amazon which works well. And then I have also used melatonin and ambien as needed. Your body will probably settle down on the florinef after a few weeks. I would also measure HR and BP before and after sleep to see if those are affecting your sleep.
  21. Does drinking alcohol help you? It lowers BP and is a vasodilator.
  22. BTW, florinef helps you retain sodium. So if you are getting headaches it might be the combination of the salt and the florinef. You may need less florinef or lest salt. Be sure to coordinate carefully with the doctor on this.
  23. It's a steroid, so it stays in your system -- actually for up to a couple of weeks. It shouldn't make too much difference whether you take it in the day or night. Florinef increases BP, so it actually can help you sleep better and reduce nighttime tachy - if low BP was causing your insomnia. (Low BP is a common reason for insomnia for us.) On the headaches, I would measure your BP to make sure it hasn't gotten too high.
  24. I think it's a combination of things. Usually my POTS symptoms happen during PMS - so hormones play a factor. Many of us don't sleep well - and we also have so much on our minds, dealing with health concerns - and related problems like family and finances - on top of everything else. These things contribute a lot to our mood. I also notice that my mood sometimes improves just from lying down. This makes me think there is a strong physical/POTS component to my mood and not just an emotional component.
  25. Are you measuring your HR before during and after exercise? I used to get terribly sick after exercise (and still have symptoms even though my POTS is much better.). I find that it is because my HR increases much more than a normal person's. So for example within 5 minutes of riding a bike slowly at the lowest level my HR goes from 75 to 125 when a normal person might go to 100. I can't ride at my full strength, because my HR would quickly go to 180 or 200. Sometimes after exercise I would have migraine headaches for DAYS until I finally figured out the connection to HR/BP. It can also
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