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About sarahmarie43

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    Chandler, AZ
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    Family, Friends, Fashion, Physics, Health, Politics, Music, Documentaries, Sports, Religion, Video Games, Pizza
  1. I was born in Toledo and have 2 other family members (also from Toledo) with POTS. I now live in Arizona. I always thought it was a strange coincidence that Dr. Grubb was in Toledo. My thought is that these conditions are not rare at all, just grossly misdiagnosed and under-diagnosed. Sarah
  2. Yes, I think a letter is a wonderful idea!
  3. Wow, I agree, that was pretty rude. I was a preschool teacher and can't imagine saying that to a parent or anyone else for that matter. That would have hurt my feelings, too. Hopefully she realized that after she said it and will act more professional in the future. You and your family are obviously going through a lot right now, so it is no surprise that your daughter is having a hard time. Her teacher needs to be more patient with her. I don't know that I have any real advice, because I am not one who likes confrontation either. But I am sorry that you are having to deal with someone
  4. I think the reasoning behind that is when you stand and your heart begins to race, it is compensating for a drop in blood pressure or trying to prevent a drop in blood pressure. With an increased blood volume, even if the blood volume is normal to begin with, it will help keep more blood in the upper half of the body upon standing, thus making it easier on your heart (meaning it will not have to pump so hard and fast to get blood up to your brain). That's how I understand it, anyway. Hope that helps. Sarah
  5. Erik, My reading issues are very similar to yours. I was always an A+ student, graduating from high school at the top 5% of my class- but I NEVER studied and almost never read the required reading. My memory is very sharp, so I was able to retain things learned in class and test well, but if I would try to read anything on my own, it just did not make sense. I have read full pages before, only to realize that I had been thinking about something else the entire time. When I go back and re-read, it was like I had not just read those very words just seconds before. Unless I am absolutely ent
  6. I am a bit nervous about stimulants. Coffee makes me jittery but does nothing for my energy level, like I'm wired but still physically exhausted. I have not had coffee in several years, but I don't drink soda or tea or anything. Chocolate doesn't seem to give my any trouble (thank goodness), but I don't like the way I feel on caffeine. I am hopeful that I will find something that gives me energy but doesn't make my other symptoms worse- and it might be a long search still ahead. But I will be cautious. Thanks for the warning. I'll be sure to let you know what ends up happening. Sarah
  7. Thanks, Julie. I'll have to look into Concerta. I am also very thin and have trouble with my appetite, so I certainly don't want anything that will make that worse for me. And the irritable part does not sound fun. I also have CFS and my main problem is fatigue. I have no idea if Provigil is supposed to help with palpitations, but if it gives me enough energy to return to work, I can deal with the HR issues or perhaps try Propranalol again in addition to Provigil (they took me off of it because they thought it was making my fatigue worse, but it didn't really make a difference). I'm glad
  8. Notgivingup, that's why I would like to try it, too. It is so frustrating that insurance companies have so much control over treatment- but I could talk about that all day. I hope you can find something else that helps. Erik, thanks for the voucher info. My sister was telling me last night that I should see if the drug company had any kind of assistance. I can't imagine ever paying that much for meds, but if it truly did help it would be worth finding a way. Dr. Grubb's office is putting through another appeal this week, so I am hoping it goes through but I'm not getting my hopes up too
  9. Dr. Grubb prescribed Provigil for me since Propranalol and Midodrine did not help, and my insurance company is giving me trouble. They won't approve the Provigil since the dose I am supposed to take is twice the dose that is normally prescribed. Without insurance, it will be $500 a month, which is impossible for me since I am not working right now. I am just wondering if anyone else has had success with it so I can decide if it's worth the fight. My BP is pretty stable with Florinef, but my HR is still out of control and my fatigue is still severe, so I am looking for something that will
  10. I was on Midodrine for about a month and had the chills and itchy scalp, too. It was weird. But it didn't do anything to help my fatigue, which is my worst symptom (since I couldn't lay down on the Midodrine, I would fall asleep sitting up for 3 hours after taking it), so I am now supposed to try Provigil. Well, as soon as my insurance company decides to approve it. I know Midodrine has worked for a lot of people, so I hope it works for you, too!
  11. I had a blood volume test at Vanderbilt in Nashville when I was there as part of a 12-day POTS study, so the nice thing was that I didn't have to pay for it. But I'm sure their outpatient autonomic clinic can test something like that. Hope that helps.
  12. I am glad you have found a routine that has helped you to feel so much better! I wish you continued success!
  13. Merry Christmas, you have XMRV! I have also wondered (but not yet researched) how to be tested for this. I was also hoping it would be simpler and less expensive, but perhaps since it is still being studied it may be a while before it becomes more of a standard lab test. It's too bad that there is such a price on health... I also have CFS and POTS, and I know that my POTS is caused by EDS, but even when my BP is "stable", I am still absolutely exhausted. And if we do have the virus and there is a way to treat it, it would absolutely be worth any amount of money to feel better. Let us know if
  14. Erik, You are absolutely right. The main reason why they are worried about H1N1 is because it is so contagious. It infects the upper respiratory system causing it to easily spread human to human. The avian flu, however, infects deeper into the lungs and is therefore much more likely to cause pneumonia. But the avian flu is very difficult to pass from human to human. If someone somehow caught both of these viruses at the same time, they could very easily mutate into a new virus that takes the severity of the avian flu and combines it with the ease in which H1N1 is spread. That's when thin
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