yogini

Gena, You should be able to get the 24 hr bp monitor through a local doctor or hospital. Maybe your cardio can ask around. It's just a small electronic device you wear. You can do all the things you normally do except shower during the 24 hrs. My auotonomic neuro (who is based in a hospital) wants me to do it again (since I have been having the high BP issues), only a patient seems to have walked off with their monitor!

I also wonder whether I have IST in addition to POTS, because I seem to get tachy more these days when I am sitting and/or sleeping than when I am standing.

Gena,

Sorry you are having these attacks late at night. I know it can be really scary.

My BP is always in the "normal" range and I still get tachycardia attacks. Before POTS it was always around 90/60, but with salt, fluids and florinef, I have brought it up to be a bit higher. I try to keep my BP as high as I can, because it seems to keep my HR down and lower the tachy. (But my BP has gotten too high a few times which is a nightmare too.)

The tachy is always worse around my period. I also posted last week about getting tachy attacks in the afternoon which I think are linked to food. I switched to taking my beta blocker in the morning. I have been eating smaller meals with fewer carbs for the past few days, and have been feeling much better. It's only been a few days, so only time will tell if this will last! I don't know if you're eating late or heavy meals at night, but this could be factor.

Have you had a 24 hr blood pressure monitor test? I had one of these at Mayo and it takes your BP and HR every 10 min during the day and every 20 min at night. It might help you get to the bottom of things.

Feel better,

Rita

I think in addition to the hypochondriacs, there are a lot of people that seek medical help (whether it's going to the ER or just to the doctor) because they're having strange symptoms. For those of us who aren't medical professionals, we have no way of knowing whether these symptoms are serious or not. (And personally I think it's better to have something checked out sooner rather than later.) I would bet that more women than men go to the ER and to the doctor, because our society puts pressure on men to tough things out. This may feed into the stereotype that women are hypochondriacs. We have a lot of nurses on the board, so I would be interested in their thoughts.

Katherine,

I think it is a great idea to give literature to these nurses. It's sad and disturbing that female nurses would have such negative stereotypes about female patients. Increasing awareness about POTS can only help.

As soon as I can muster some energy, I am going to write a letter to the ERs where I went when I first developed POTS, to inform them that I did not get the help I needed and send them information about POTS for future patients. Of course this info may get lost in hospital bureaucracy, but I figure it is at least worth a try....

I think there's a Mayo in Arizona too. Funnyfrog, thanks for the tip on Dr. Weimer. And happy Thanksgiving to all!

Angela,

Welcome to the board. I understand your frustrations about POTS and hope you feel better soon.

I went to Mayo and had a good experience. I would agree with the other folks and add that it's very draining/time-consuming if you don't live nearby. Also, it's not easy or quick to get an appt there. My biggest current problem is that I can't quite seem to adjust my medicine to bring my BP and HR in check. I don't really have a local dr to help with this and Mayo can't help either. In addition to going to Mayo/NIH, etc., you would probably benefit if you are lucky enough to find a good POTS doctor in your area.

-Rita

Are your legs bright red? Talk to your doctor, but if pooling is causing the problem. compression hose may help with this symption too...

Thanks for the responses. I actually ate my lunch in portions today, and I am wearing the highest compression hose, and I seem to be doing much better this afternoon than I have in a few weeks. Hope it lasts!

It could definitely be related to the food. I have been complaining about a "strange feeling in my stomach" which I posted about before. It could be all of the blood rushing to my intestines. I have read that many of you eat smaller meals, and I feel silly for not making the connection earlier! I've even come home early from work several times because my heart was beating too fast, and it was probably related to food...Now how am I going to make it through Thanksgiving??

Do you know what your HR is like when you're getting the SOB symptoms? I had SOB when I first got POTS. I had trouble even talking or holding my head I think the reason for me was that my heart was working too hard to pump oxygen thought my body. For me, I think the beta blocker, salt, etc. have helped the SOB by slowing my heart down. I had some pretty bad symptoms from the beta blocker for the first week or so (including SOB), but they went away. I think it depends on the person, and maybe your dr can help you figure out whether a BB would help you.

Rita

Beverly,

Thanks for the update. I don't have much time to write, but I read your earlier posts about the doctor not being to help and was thinking about Nicole. That is really heartbreaking. I am glad Nicole is home with you now! If there is any way you can get her to Mayo by air ambulance, I think it would help. I encourage you to take the Feb appointment if you can get it, and keep checking for cancels. Feb is only 2 months away. It seems like a long time, but she has already suffered for so many months, and it would provide a ray of hope in the long run.

I know it's much faster to get into Mayo if a doctor refers you. I got in by having a friend send an email around at my work. It turned out someone's dad was a doctor there. Maybe someone at the hospital where your husband works has a contact at Mayo...

Wishing you the best,

Rita

I haven't been on the board for the past week or so, and I hope everyone is well (or as well as can be expected given that we all have POTS)! I have noticed lately that I have been getting HR attacks in the afternoons. I sometimes feel like I have a headache/fever or feel like I am very dizzy. I try to keep my pulse monitor off these days because all it does is freak me out. But when I turn it on in the afternoon when I am not feeling well, it seems my pulse is in the uppper 90's sitting down, sometimes as high as 120. With the beta blocker, it is usually only that high when I walk. I have been told that a HR of 120 isn't dangerous for me, but it is really uncomfortable.

I switched to taking my beta blocker in the morning, but this doesn't seem to have helped with the tachy. I usually eat a 1/2 sandwich, chips and carrots for lunch. It's not a very big lunch, but I am wondering whether eating 2 smaller meals may help the tachy. How long after eating carbs do people typically get symptoms? The funny thing is, I don't think I get symptoms after breakfast or dinner and I eat carbs then too.

It may also be because I am sitting for most of the day. I have to wear my higher compression hose tomorrow to see if that helps too. Does anyone else have this or have any suggestions on what may help?

Thanks!

Friday,

Is your doctor a POTS specialist? The beta blockers and saline would have affected your test. For my first TTT, I was asked to stop all meds for several days before taking the test. I had vomiting and fainting within 10 min and was diagnosed with POTS. I got saline after the test because I was so ill, but not during.

Since then, I have had other TTTs on the meds, during which I did fine even though I am not exactly fine on a day to day basis. It never made sense to me, but my doctors wanted to see how I was doing on the meds. I would recommend talking to your doctor about re-taking the TTT without meds, if you can. It can be tricky stopping the meds, though, because you may have to reduce them gradually over several days/weeks. Your doctor will tell you how to do this. I know it can be dangerous to stop beta blockers abruptly, which is why your doctor probably told you to take it on the day of the test.

-Rita

Emily,

Thanks for the tip on the coated salt tabs. I can't stomach the regular ones either. I hate salting my food and drinking soup broth is tiring!

-Rita

tearose,

glad to see that you're feeling well enough to venture outside. i have had a few of these incidents myself, and they're truly enfuriating. i have had people shove their way in front of me to steal a cab, after i had been waiting for 1/2 hr in the freezing cold, and one woman yell at me for not saying please when i asked her for help as i was about to pass out! there are lots of people out there with no compassion (although fortunately there are lots of caring people too.) i have told people they are rude, but you're right, it would be much more satisfying to have a one-liner ready. so i'm anxiously awaiting for some creative ideas from the group!

if anyone questions your handicapped parking permit, how about something like, "not that anyone has asked for your opinion, but maybe i have a medical problem that you can't see, like a brain tumor. have a nice day." that way you're not actually saying you have a brain tumor...

rita

Amy,

Welcome to the board, glad you found us! My symptoms definitely come and go, and I can't figure out any reason (other than that I am worse around my period). Sometimes when I walk, I have a high HR and am terribly dizzy and other times I almost feel normal. I also get sudden attacks where my HR suddenly goes to 150 or even higher, even though I am on a beta blocker. The attacks would be longer and much worse without the beta blocker, though.

Dealing with POTS involves a lot of patience, trial and error. Salt pills, eating saltier foods, drinking tons of fluids and wearing compression hose has helped many of us on this board. The salt takes a few days to really start working. And if you still have heavy symptoms after that, you can talk to your doctor about increasing your dose of BB or trying other medicines. It's a slow process trying to get the right combination of treatments, but you can definitely get there.

Good luck,

Rita

I just got back from my cardio's office. He noticed that I had gained some weight, and told me I was looking much healthier than when I first came to see him in Feb. I am 5'3" and weighed 103 when I came down with POTS. I actually went to my GP last year (before POTS) because I was losing weight without even trying. (I also went to him beacuse I thought my heart was beating too fast at the gym, and he didn't really do anything except run some blood tests which came back normal. LOL) I now weigh 116, in part due to florinef and inactivity. But my cardio says this is a much healther weight for me. I would prefer to be around 110, but getting my POTS symptoms under control is more important than my weight. In short, I don't know how to answer the poll, but I think my former weight loss contributed to my getting POTS. I was able to gain it back, though!

Leah,

How awful! Your ex-boss sounds unprofessional and mean-spirited.

I am a lawyer, but I'm not that familiar w/ the ADA. I'm glad that you have some lawyer friends who seem to know about it. If you can talk informally with people who have experience in this area, you'll get a good idea of the right course of action to follow. As mentioned below, the EEOC is also a good resource.

I agree with Merrill that it might help to write out the details of the incident while it's fresh in your memory. Also, I was wondering whether there is an office in your school that deals with discrimination issues? If not, then it may make sense to go up the chain of command (i.e. your boss's boss's boss) until you find someone that is responsive to your concerns. Hopefully your issue can be resolved if it's reported to the right person. Schools have a reputation to protect, so I would hope they would take an issue like this seriously.

I am sure this is a hassle that you didn't need. Please take care of yourself as you are dealing with this ordeal.

Martha,

My mom and I were thinking the exact same thing last night when we read through that article. I have been told to exercise, but I have no idea what to do, how long, etc. I worry about pushing myself too hard, or not enough. Different articles provide different suggestions on how to exercise for POTS, but a physical therapist could tailor the exercise to our personal needs. It would be so helpful to have this, even if only for a few visits. I am going to try to get a referral to a physical therapist, but I am skeptical it will happen...It is frustrating that there are simple things we could probably be doing to make ourselves better, but noone to point us in the right direction.

Katherine, from this and other posts, it sounds like you have a great doctor. That's really terriffic. Wish there was someone like that in this neck of the woods!

-Rita

Beverly,

My worst times are definitely before and during my period. My onset of POTS was during my period, my 3 ER trips have been during my period and so were my 2 big relapses. I have thought about taking birth control pills and/or stopping my period, so I would appreciate any articles that anyone provides. I am hesitant due to the side effects, and because I fear triggering another re-lapse. I have not yet recovered from the last relapse 3 months ago, and I am scared of making myself worse. But on the other hand, taking a risk may pay off for Nicole. It's such a judgement call with trying any new treatment or medicine, I guess. Since you have a good POTS doctor, maybe it makes sense to get his input?

-Rita

Bev,

I live in New York City, Tearose lives in Westchester County which is just north of here. Thanks for the suggestion in Boston, I will definitely keep that in mind. I'd still like to find at least one dependable doctor in NY, and that has been a bit of a struggle for me...

-Rita

P.S. How is Nicole doing on the beta blocker?

You could try saline nasal spray for the congestion. It's not as good as the real nasal spray, but still helps a bit. I think the real nasal spray is contraindicated for POTS meds (beta blockers etc.).

Another idea is to boil some water and put a towel over your head and breathe in the steam. (Although I am not sure whether the heat would trigger your POTS symptoms) Vicks Vapo Rub is great too, although again, I'm not sure if it is OK for POTS and/or pregnancy. And make sure to keep up on the Vitamin C. Can you tell I had a ton of colds as a little kid?

Feel better,

Rita

Ernie, I'm keeping my fingers crossed for you. Hang in there and keep following up with that dr every few days until you get an appointment!

Tearose, thanks for sharing your experience about the doctors. I've been to a few drs in NYC, but still looking. I'd love to talk to you about this further and get your thoughts, so will email you later today...

Ernie, You had posted a month or 2 ago about maybe seeing a doctor to investigate your muscle weakness. Is there any update on that? Glad to see you are posting more these days.

Tearose, are you still seeing a doctor at Columbia?

Etoly, the website info you provided is fabulous!

Thanks,

Rita

Very blue,

I think you should have a lot of hope that you'll get better. In my own case, I don't seem to have any problems other than POTS (knock on wood). However, I think I was prone to getting POTS, because I always had very low BP and a slightly fast HR. I also didn't focus on taking care of myself, in terms of eating right and on time, staying hydrated and getting enough rest. At Mayo, they said my busy lifestyle contributed to my illness. This really upset me at first, but then I thought about it and it makes sense. If I could do things over, I would take things a bit easier and if I ever get back to normal that's what I plan to do. (This is probably the perspective that Tearose is referring to -- wish I'd had it 10 years ago!)

-Rita

My temp fluctuates between feeling too hot or too cold all the time. I get the cold hands/feet and warm everywhere else too, and that's the most annoying. I have some weird issue going on with pooling of blood in my hands and feet. Sometimes my hands are as white as a ghost, and other times they are bright red. I wonder if this is related, but not sure....

For me, I definitely think POTS has something to do with this, because before I was cold ALL the time and didn't mind feeling warm.