sarahmarie43

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

Yes, I think a letter is a wonderful idea!

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 who is not very understanding of your situation. Hang in there and vent to us anytime.

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

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 enthralled with the topic, it's pretty much hopeless. I also never completed college. I felt terribly unprepared, as you really can't "B.S." you way through college (well, I did that in a few classes, but for the most part you really have to know how to study, or at least be capable of it). However I was able to work around my reading problem in K-12 was not working anymore. It was very embarrassing. But, somehow, math comes very easy to me. I had the whole high school math department after me to go into the actuarial program at Arizona State, but there was no way I was going to last 8 years in study. I completed 3 years as a math major, and then dropped out. I am actually taking one final class online next semester to finally complete my associate degree. Another thing I can do very well is editing. My father is a writer and he regularly has me edit his reports for grammar and punctuation. As long as I don't have to actually understand and retain what I am reading (I could never edit content), I can zip through 100 pages in no time and catch almost any error. But I could never tell you what any of the reports were about. Up until a few months ago, I had also only read one complete book over the past two decades- Alice in Wonderland. It somehow is able to keep my attention, and it is very short. Since I have not been working for the past year, I have made some attempts at a few other books, mostly about physics, but have only finished the one that was 100 pages long. I have wondered if I have ADD or another learning disability, but I was too ashamed to talk to anyone about it. However, I have discovered as an adult that it is really not that uncommon. I was just always comparing myself to my older sister, who is probably actually a genius. I can certainly relate to your anxiety about reading. I can't say that I know how to fix it or improve it, but if you figure something out, be sure to let us all know! Sarah

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

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 your son has found something that helps him to get through the day. Thanks again, Sarah

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 high. Let me know if you end up trying NuVigil or Modafinil and what it does for you.

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 help me to actually feel better. Thanks Sarah

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!

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.

I am glad you have found a routine that has helped you to feel so much better! I wish you continued success!

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 you end up completing the test. I'm hoping for a clinical trial in my area that tests for it, because then it would be free, but I have no idea how far off they are on that. I guess I need to do some reading.

That's wonderful news!!!

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 things would get bad. My father's non-profit did the report for the Arizona governor's office on the possible avian flu pandemic a few years ago and he has done a lot of research on pandemics, and I edited the report myself, so that is how I am familiar with this stuff. H1N1 by itself is no more harmful than the seasonal flu except for the fact that it can cause serious illness in otherwise healthy adults, which is a population that is usually not at risk for serious illness with other strains of the flu- another reason why it would be a danger if it mutated. The reason why the government has declared it a national emergency is precautionary. They know that the same amount of people will get the regular seasonal flu as happens every year, but then there will be millions of others with H1N1 on top of that and hospitals have the potential to become over-crowded. So they are just putting measures in place to make sure that they can treat as many people as possible in case it becomes a bigger problem. I also agree with Angela's statements about the vaccine. It is the same exact vaccine as the regular old seasonal flu vaccine, only the actual virus is switched out. I really don't think it's anything to get too worried about, but it is okay to be cautious. I will probably get the vaccine when it becomes available here. I got the flu vaccine for the first time last year and had no problems. But everyone is different. It is definitely something you and your doctor should discuss, especially since H1N1 seems to be hitting people with underlying conditions (including nervous system disorders) pretty hard. And I read somewhere else on the forum that someone didn't believe that H1N1 was a pandemic. I honestly am not trying to call anyone out or anything (I don't even know who said it), but it actually does qualify as a pandemic because of how widespread it is, the fact that it is a new virus, and the amount of deaths it has caused. But "pandemic" is a scary word, and I think the media has gotten out of control about their reports without accurately explaining what the risks really are. Anyway, I hope that helps. I don't want anyone to be scared, but I also don't want anyone to get sick (or sicker, I guess). Sarah