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alexhunterus

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About alexhunterus

  • Rank
    Member
  • Birthday 05/02/1996

Profile Information

  • Gender
    Female
  • Location
    Charlotte, NC
  • Interests
    Drawing, Graphic design, photography, singing.

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688 profile views
  1. I am 17 and have almost no social life. I barely see my friends or even talk to them. I have so much trouble tying to keep up a conversation because I just don't have the brain power. The only time I go out is for infusions twice a week and doctor appointments. I sometimes find the energy to go out just to stop myself from going stir crazy. This is the age where you are supposed to be going out and doing stuff with your friends! Not being stuck inside, barely being able to get out of bed. I guess I'm just looking for suggestions on how to maintain at least a little bit of a social life. This disease is hard enough without having no one to be around apart from your parents and nurses.
  2. That is what I took when I was on it and I didn't seem to have any problems on it. They only took me off when my vitamin D levels were back up.
  3. I'm 3 weeks in on the Levine protocol, so too early to tell yet. I was given the program by my cardiologist who set my heart rate goals. I think it would be different for different people.
  4. I get saline twice a week and I get 2 liters. It takes 3 hours each day. The first time I got it, I only got 1 liter and I felt absolutely amazing. The next few times it wasn't as good but I still got benefits from it. After 3 times with 1 liter, I went up to 2 and that seemed to help much more. I don't get palpations as much, not as much dizziness and I always have more energy after. While you are getting it, if you do the 3 hours, you get very tired but afterwards you feel a lot better. I really enjoy getting it plus there are 2 other girls who are there around my age with pots, so that helps. Hope this is helpful
  5. This happens to me A LOT. Even just going upstairs at home makes my heart rate go to 150 and it makes me really out of breath. Feels like I just ran a mile. Not really sure why this happens I always thought it had to do with my mild asthma.
  6. You probably have Reynolds, I have it and my hands and feet are always freezing.
  7. Exercise does this to me a lot. When I go to the mall within maybe 15 minutes I have to sit down because I feel lightheaded and I start shaking. I go to physical therapy and I go on the bike for 10 minutes tops and I was doing really well with that but when I went on the beta blocker I couldn't even to 5 minutes. I have come off of that and it seemed to help. My heart rate gets very high when I go up stairs, about 150.
  8. Thank you all very much my doctor has said I can start getting it but we just have to figure where to go. Feeling quite positive. Thanks again!
  9. I'm sure everyone has heard "You have to drink a lot". I've never been much of a drinker and when i try to drink the amount I'm supposed to, I get extremely nauseous. I take Zofran for nausea but it doesn't seem to help much from what I call "drinking nausea". My doctor suggested I get an IV port put in and go to the doctor three times a week and get Saline. I was wondering if anyone has done this and was just curious of the prosess and if it really helps.
  10. I'm on the pill and though they don't stop my periods, I only get them 2 times a year which is nice. And when I do have them they are not quite as bad.
  11. I do not take that medication but I do get most of those symptoms. I usually get the tremors when I have been walking or standing for too long. Sugar seems to help so I keep bottles of coke in the car and I also carry glucose tablets with me. We have checked my blood sugar during the episodes and it's always normal. I also sometimes have trouble w vision depth. Brain fog is a big problem for me. I started homeschooling this year because I was never getting to school because I was always sick. But whenever I try to do work I have to read over something about 4 times until I really understand it. I also have a lot of problems with spelling now. I know the brain fog mainly has to do with pots, but I'm not sure about the other symptoms
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