yogini

BTW, I tried the docs at Columbia and NY Presb a couple of years ago when I had a relapse and they weren't taking new patients. But they may be again now. Let us know what you decide to do.

Hopefully you won't hear from her for at least another year!!!

Bradycardia is a symptom of dysautonomia. I've had it even with POTS. Are you on any medication? I'm not sure it's something for concern, but you should mention to your doc since it's a new symptom.

I didn't read the other responses, but it doesn't matter if you have normal blood volume or that your BP doesn't fall when you stand. In POTS your heart is beating fast to keep up your BP. If your BP is increased through another means, then it takes the burden off your heart and your heartbeat slows down. That is the theory. Midodrine also works on the same theory, but increases BP withough increasing blood volume. You may want to start off with beta blockers if HR is your biggest problem. Since the mechanisms of POTS aren't fully understood, most people have to try diferent meds to find the right one(s). You can pick certain meds (and rule others out) based upon your symptoms, but in the end it's trial and error. The thing that helped me the most is Paxil, but I didn't find that until 3 years after getting POTS, after trying 2 betas, florinef and midodrine.

Try DVDs if you can't find a class. In addition to tai chi, restorative yoga and stretching are really great and POTS-friendly, as they can be done on the floor.

If you enjoy it and it makes you feel good, then use it once in a while and that will probably be OK. But I think any short-term benefit would be outweighed by the long term effects of smoking on your heart and lungs. If you've just been diagnosed, there are probably lots of more traditional treatments that you haven't tried yet. I'd go with those first rather than trying to self-medicate.

I have a cardiologist in Manhattan who is very knowledgeable about POTS. I found him from the NDRF list and have been seeing him for about 3 years. I am sending you a PM....

It sounds like you may have some problems that are interconnected, especially if you are sure you have lyme and POTS. You probably need someone to look at you as a whole, rather than treating individual symptoms. Maybe a reclining wheelchair so you can lie down or a lyme dr that is available by phone?

I think that he has the right to be disappointed AND depressed - he spent a lot of time and effort toward something and just missed his goal. However, I think your friend needs to be sensitive to YOU and your illness when she shares her problems. Healthy people forget what we go through and we have to speak up for ourselves, tactfully of course. I always try to be suportive to friends as much as I can. When it hurts too much, sometimes, I push back indirectly, like if someone whines about being sick, I say "I know what you mean, I actually feel like that most of the time due to my chronic illness." Or I say "I wish I could be more supportive to you, but it's hard for me b/c my condition makes it hard for me to do simple things like walk. Maybe it'd be better to talk to someone else about this."

i hate takeoffs and landings too. i dont wear compression hose anymore, but i do wear it just for flights, and that seems to help. also putting my feet up or across the seats next to me. for the congestion, you might want to talk to your dr about whether it's OK for you to use a neti pot. it helps clear things out w/o any medicine.

I would think dehydration would be the biggest problem from so much diarrhea. You would lose the Paxil most likely if it runs right through your system - if you go to the bathroom shortly after you take it.

Breathing exercises might help you. I invested in a Resperate machine, which costs a bit, but has lasted me 4 years (and is still running). I try to do 15 minutes of slow breathing each morning, which calms my system down to start off the day. Dr. Andrew Weil's breathing CD is also fabulous. Breathing exercises work in the moment, but they also have a great long term effect if you do them regularly. I have also gotten into yoga and meditation in the last couple of years. If you can find a restorative yoga class near you, it is something I think almost anyone with POTS can do. There are no downward dogs, just lying around on pillows with lots of soft music, candles, etc. You leave feeling like you went on a week's vacation. If you can't make it to a class, see if you can get a DVD and try it at home. Regular yoga and meditation are great, but they are a long process. It has taken me 2 years (on and off), but I finally think I "understand" meditation. It seemed impossible at first, but now I can actually sit still and feel what it's like to be totally relaxed. Yoga and meditation are exactly about what carinara said - living in the moment and not thinking about bad things from the past or future worries. Though it is a lot easier to learn these techniques when you are not stressed and then apply them when you are... Feel better!

I am confused. I thought Lexapro was an SSRI?

Dizziness was by far my worst symptom. I don't think there is any med to treat it. If you find something that helps your heart rate and blood pressure, that might help. I went through the whole inner ear investigation too, and vestibular rehab, but it turns out my symptoms were from POTS. I am MUCH better now than when I first got POTS. Have you tried betas or midodrine?

While there are many good stories/articles written by patients about POTS, I am not sure this is one I want to rely on. I think the author of the article is a little confused. Mitral valve prolapse syndrome, or MVPS, is an old name for dysautonomia. I think the MVPS center in Alabama tends to call it MVPS rather than POTS. In any case, MVPS is separate from mitral valve prolapse - the prolapsed valve that is extremely common among women - I've heard 20-25% of women have it. The conneciton between MVP and POTS has been discussed a lot on the forum before and I think it's up in the air. Finally, I am annoyed that this author focuses so much on depression. Perhaps it is her experience, but it is not a large part of POTS for many of us - and I wouldn't my friends. etc. to read this article and get confused that POTS isn't a physical condition.

I just started taking them a couple of weeks ago due to high triglycerides. I think it takes a few weeks to kick in, but I haven't noticed any difference so far. I store my fish oil in the freezer - that is the trick to prevent them from upsetting your stomach. My big concern was mercury, but many brands are purified to eliminate mercury.

By the way, when I had a housekeeper, I worked out an arrangement where she would call me the evening before to confirm. That way if my place wasn't ready or I wasn't feeling well, I didn't have the pressure of her coming. Maybe you can find someone who is flexible...there are a lot of out of work people out there...

I used to have a cleaning lady every two weeks. It took me a long time to 'let' a housekeeper into my house. I felt violated having someone come in to my space. I wouldn't want anyone to touch my private things, wash my undergarments, etc. Well, let me tell you that I got used to it pretty quickly! It was fabulous. When you have someone you can trust (get a reference from a friend), it makes a big difference. Then I took some time off work and wanted to save $. Now I work from home and live in a small space, so there is no room for the housekeeper. Mine likes to talk a lot, so I can't get anything done with her around. Life is short and it's important to live as much as you can. You have limited energy with POTS, and if someone else takes care of the housework, you can use that same energy to spend time with loved ones, do something fun or at least do other work. I do understand why you hesitate, though. I think part of it is feeling like you SHOULD be able to do the housework. Healthy people dread doing chores, but many with POTS would give anything to be able to do them. Why not give it a try, and if you don't feel comfortable you can always stop?

Has anyone ever heard of drinking a tea made of honey and cinnamon for getting health benefits? A friend mentioned it to me and I researched it online and am going to try it. It seems like there isn't much to lose - at least it's something with "normal" ingredients that's not expensive and tastes good. Here is the info: http://countrykitchenpantry.com/2007/04/15...eight-loss-tea/

It's definitely possible to have mild POTS...and, though you can never be sure, your symptoms do sound similar to POTS. Probably a good thing to get tested.

I asked my cardio about H1N1 and he said to wait and see the side effects, availability, etc. I've gotten the same advice from 2 docs in a row. I also keep asking people - my dental hygenist, physical therapist, etc. and noone seems to be getting it...so I am not worrying about it for now!

It's hard to interpret the study from the blurb. First line just means that it's not one of the go to treatments of choice, which makes total sense. First line would be something like BBs or florinef. There are so many risks and expenses with pacers and they aren't appropriate for everyone, so they clearly aren't first line. I think pacers help best with slow and stopping heart rates for NCS (as opposed to POTS). Many who get them don't have a choice - either their heart stopped on the TTT or they had a failed ablation. If you do have a choice to wait, there may be other medical options you can try first - there are meds that speed up your heart and BP. Ask your doc lots of questions about other options and maybe even get a second opinion...or two! I know you need to feel better soon but it probably makes sense to think it though and take things slowly on this one.

I just went thru something similar when my COBRA ended. In NY none of the big insurance companies even offer to sell insurance to regular folks. I had to set up my own law firm and get it through the city bar association...maybe you belong to a similar professional group? Ehealthinsurance.com is also very helpful. They gave me lots of good info, even though I didn't use them in the end. Don't worry too much about the certificate of continued coverage. They mail that out (under law) the week you coverage ends - mine offered to send me mine early but my new insurance said I can just send it whenever I get it.

You can always cancel at Mayo, even at the last minute. I'd get on the waiting list and pursue local drs at the same time. (But I would double check on that, b/c I thought waiting list at Mayo was the same as a rejection?) Anyway, the local docs are the ones that will manage your case in the long run. I would try one of the docs in your area listed on the DINET main page - maybe you can find other people in your area and get a recommendation. You also might have better luck with a electrophysiologist cardio than a neuro (neuros aren't usually helpful unless they specialize in conditions).

Yikes - fainting so much is not good. Is there an electrophysiologist cardio near you? I'd try to find any doc that is willing to prescribe various POTS meds for you until you find one that helps. Maybe you can find other people in your area on DINET who know of drs. And there are other people who faint - maybe you can find out what treatments work for them. How is your BP? Usually people faint b/c their blood pressure is too low. You could try stuff to boost your blood pressure - lots of salt and water and compression hose.