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yogini

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Everything posted by yogini

  1. Blood supply is a lot more limited than saline and blood transfusions have more risk (you need to match the type, clotting, HIV, infections, etc). For many people with POTS, saline itself is a fix. I went from vomiting and barely being able to stand to totally normal shortly after getting saline. I am not sure a blood transfusion would have helped any more than the saline.
  2. Awesome. Hope things continue to improve!
  3. I have been using compression wear by Vedette since last fall. I came up with this idea to try it randomly. I was never able to wear Spanx or waist high compression hose. I don't think spanx or shapewear is nearly strong enough and I have mild POTS compared to most people here. For some reason these corsets/compression wear work extremely well for me. I know I pool in my abdomen. Compression hose on my legs helped, but this works better, You can buy them pretty cheap on ebay once you figure out your size. I wish I had discovered these a long time ago. I would be curious to see how yhis wors for you. By the way, each person is individual, so I would definitely play around with different styles and compressions (as long as your dr is OK with it) until you find what works for you. On hose I love Jobst opaque (it is the softest!)
  4. It's hard to know because it sounded like you were already feeling at least a little better before the spider bite. And it might the the medication that made you worse again. But an interesting theory! It could be something even so simple as the venom increased your BP.
  5. Thanks, happened to one of my family members this week. Foud out today from Dr it was due to low BP. It happened to me once but my body went into convulsions so I wasn't sure.
  6. I was wondering whether POTS/low BP has caused any of you to drop to the ground but stay conscious/awake the whole time? Thanks
  7. Glad you were able to find something that helps your POTS. And that you were able to go on vacation! I can't live without vacation!
  8. You might get better Answers if you Go to the regular dr, pulmonologist, not ER. Also, I would check the side effects of any meds you are on to see if you aren't having a bad reaction.
  9. Yes, I have soup almost every day. It is a good source of veggies and fluids. But raw vegtables have a lot more nutrients....
  10. I have a (non-POTS) friend that eats only healthy stuff. Fruits, vegetables, fish, healthy grains like quinoa, some dairy, very little bread/carbs, mostly organic. She is older than me and has the most energy of any person I know. so I am tempted to incorporate more of that into my diet. Except I get bloated/constipated when I eat too many veggies. And I think I need salt to keep up my BP. If anyone has any ideas of how to do this, I would be interested.
  11. So happy for you! Hope you continue to improve!
  12. Yes, I have benefitted from doing less and more gentle forms of exercise. The most cardio I have done is on a recumbent bike. I did that for several months and it did get easier over time. The problem with that was that my HR didn't always calm down after the exercise, and the after effects sometimes lasted for days. I know we are all different, but I just can't imagine doing upright cardio. I am very functional, work full time, etc. but just the thought of cardio gives me knots in my stomach. I can't imagine how someone with severe POTS could tolerate it. I worry that people may try cardio and give up on exercise altogether if it doesn't work. I wish somoene will offer a more gentle exercise routine as an alternative.
  13. Kelly, thanks for the well written and informative post! It is very interesting that none of Dr. Thompson's patients were able to make it through Dr Levine's protocol.
  14. Even though i am highly functional, stairmaster/stairs are absolute hardest form of exercise for me. I wouldn't even dare try. Do you have any after effects from the exercise? I cannot really jog either....
  15. Shapewear is great! I wear Vedette shapewear. It is like a corset/girdle for people who have had liposuction or other surgery. It makes a huge difference. Glad you made it thru the concert!
  16. Some of these things you mention are beyond your control. I would focus on what you CAN control For example, you control to some degree what you eat. So choose foods that are better for you if you think that would help. Junk food may not be as bad as you think for POTS, especially if it is salty. The stress in your life could greatly be contributing to your POTS. Try to tackle each issue one at a time.
  17. I would be much more inclined to believe the lesions caused the POTS or that some other co-condition caused both the lesions or the POTS.
  18. I would like to add that I never found a cause for my POTS and I have been able to find treatments. Someday when doctors know a lot more about POTS, I think the cause information will be a lot more helpful to our recovery. Many people here search really hard and can't find a cause for their POTS. I personally found it a lot more productive to spend my time trying treatments rather than focusing on the cause, since there are lots of drugs that do work for POTS and it takes a while to find the right combo.
  19. -Don't try to do too many things at once (see specialists, try meds, etc). One thing at a time -Take time off as much time from work as you can to get better -Be open minded to any treatment that could work for you. (It took me 4 yrs to find Paxil, which controls my symptoms) And a fourth thing: -Most drs don't know about POTS. If you come across one of those, move on right away!
  20. For those of you that had something on an MRI or brain scan, are you sure the lesions caused POTS? Or did POTS cause the lesions? When my symptoms are acting up, my memory, etc can go sometimes. These types of issues go away when my POTS flare goes away, so I don't consider them brain damage. I cannot speak for everyone, but think it's unlikely that the average POTS patient gets long-term or permanent brain damage from POTS.
  21. Coat hanger pain in the neck/shoulder area. Exercise intolerance. Insomnia. Reflux. Postprandial hypotension. Visible pooling. Arms legs falling asleep
  22. I saw him in 2004, so a long time ago. He ran an MRI and a tilt table test. I think he is a very nice/smart man, but I didn't find him to be as knowledgeable about POTS as I had hoped.
  23. For those of you on BBs, what time of day do you take them? I found it was best for me to take them at night - so the drowsy part helped me fall asleep at night.
  24. I had this big time when my POTS was at its worst. I think part of it was that I was eating a normal sized lunch, which was hitting my system mid-afternoon. It helped me at the time to eat smaller meals and fewer carbs before lunch. Eating a normal dinner at night was never a problem. I am not sure if you have a sitting job, but it also helped me to walk around a little bit a few times during the day. I think the pooling is worse when you sit all day. You may want to measure your BP and HR in the morning vs this time to see if you can figure out what is going on in your body. This symptom went away for me as my POTS improved. My worst time of day by far is in the morning.
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