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

I am on Florinef and have not gained any weight in the past year I have been taking it. I have always had trouble keeping weight on (5'8" and 115 lbs), but it gets much worse when I am on SSRI's. I think everyone is different. My doctor said he thought the Florinef would help me put some weight on, but no such luck.

Hi Julie! I am home most of the time. I don't work, but I do try to get out of the house a few times a week (or as my body lets me). It's been tough to maintain friendships, but there are those who have really stuck by me and I appreciate them so much, even if I don't get to see them very often. That's great that you knit! My sister (also a Julie) used to crochet hats for premature babies, so I know there are programs available if you want to do something like that. I need to find a hobby too! I mostly watch tv and spend time online (and sleep, of course), and right now I'm listening to my dog snore I don't know if you have any pets, but they can really help lift your spirits. Sarah

I had one of those days yesterday, too. It's really hard. I just started taking Midodrine a few weeks ago and I think I got my hopes up too high that it was going to make me feel at least noticeably better, but I am still just so tired. There are no EDS or POTS doctors in my area (that I know of) and the only CFS specialists I can find are super expensive and don't take my insurance, and since I'm not working right now, I really can't afford much. I just felt like giving up. But what choice do I have? I feel a little better today (emotionally). Not for any particular reason, but I guess yesterday was just a down day and today isn't. I'm so sorry you are feeling the way you are- missing work, wondering if you will have children, wondering what the rest of your life will be like and if you will ever feel better... I know exactly how you feel. It's weird to be "sick". I hope it helps to know that you are not alone, and here's a long-distance *HUG*

Hi Daphne! Your symptoms sound almost exactly the same as mine. I have POTS and CFS also, and it took forever to get properly diagnosed. I'm sorry to hear that you are having trouble with doctors and treatment, but hopefully the specialist you mentioned has a better understanding and some better treatment options for you. I have seen 2 specialists here in the U.S. and it made a huge difference. Welcome to the group! Sarah

Hi Dustin, I am so sorry to hear that you lost a family member. I think I know what you mean- sometimes when I am standing I start to feel panicky, probably due to the hr and bp changes. Plus, when the blood isn't getting to the brain like it should, it can cause all kinds of things to happen. I also feel better when I am walking around unless I am extremely fatigued. I think your symptoms are not all that uncommon. Hang in there Sarah

I'm so sorry you had that experience. I am assuming you were volunteering, in which case they should be grateful for any amount of help! It is frustrating when people don't understand and very difficult not to let it get to you. I hope it helps to know that you are not alone

I am so sorry that you are having to deal with all of this! It sounds awful. I don't have any words of wisdom, as I have never had any experience with home care, but it sounds to me like you did the right thing by getting rid of their services and reporting them. I hope things get better for you soon

Thank you very much for the welcome! It is great to be here Well, not "great" that any of us have to be here, but great that this is available to people like us to support each other. MaryMalta99- Congratulations on your three children! That gives me some hope. Did you have symptoms before or during your pregnancies? Does your daughter have the same type of POTS as you do? Amy- Thanks for the good wishes- it is certainly a big decision, but I'm glad to have some resources to aid me. Maxine- I am so sorry to hear about your friend! That's terrible. I will have to make sure to talk to my cardiologist about that. My aorta was normal (2.7, I believe) a year ago, but that's not something to take lightly. Thank you for that info. And I'm pretty sure my parents would have thought twice about letting me be a competitive gymnast had they known my joints were weak! So I guess I'm glad they didn't know I'm lucky to not have suffered any serious injuries, although the minor ones I did are coming back to haunt me now. I will also have to see if I can find a good geneticist. Good doctors in the Phoenix area can be difficult to find, but I'm sure my cardiologist here can recommend someone. I look forward to getting to know you all Sarah

Thanks for the replies! I didn't realize that it was a dominant gene, but I haven't read up on EDS much yet. I don't think either of my parents have any form of EDS, but my mom suspects that her older sister has it (they are not close), and a cousin of hers has type III as well, so she must be a carrier. I know I still have a lot of thinking to do... And I guess I can't really make any decisions until I am healthy enough to care for a child- hopefully someday soon. Worththewords- best of luck with the remainder of your pregnancy! My husband is also very healthy, so at least we have that going for us Thanks again to all, and take care, Sarah

Hi everyone! I have been reading a lot of your posts since finding out about POTS in March of 2008, and have learned so much! I was diagnosed with POTS at Vanderbilt in January of this year, and with EDS type III (joint hypermobility) by Dr. Grubb last week. I am 29 and married, and planning on having children once I get my symptoms under control. I know that women with POTS secondary to EDS type III can have children, but I am wondering if the children are likely to inherit these conditions. I realize that there is never a guarantee that any child is going to be "healthy", and I will love my children no matter what, but I'm not sure I would want to have my own if I know that they are likely to have the same problems that I have had for the past 15 years. Of course, if they did start showing signs I would know what was wrong and be able to get them a diagnosis faster that I got mine, but do I want to take that chance? Would it be better to just adopt a child who (regardless of their health status) already needs a home? Any thoughts or information on this would be greatly appreciated. I know the decision is ultimately mine and my husband's, but it is important to me to make an informed decision. Thanks! Sarah