MightyMouse

I take E, primrose oil and DHA. I don't know if these help at all with my POTS/NCS, however, the E and primrose definitely help with my bloating and cystic breasts and cramping related to my menstual cycle. When I'm off those, I'm in a lot more discomfort. Nina

Wish I could earnestly say yes to your question...but my answer to you is, no, not really. I have used NADA, aka enada, which seems to help a little. The best thing I've found is to stick to a consistent sleep/wake cycle. Nina

From DINET's physcian's listing, there are these two doctors: Michigan Dr. Sid Gilman Department of Neurology University of Michigan 1500 E. Medical Center Drive Ann Arbor, MI 48109 734-936-9070 PAF/Secondary Autonomic Disorders, MSA Have plans to develop an autonomic laboratory Dr. Felix Rogers 2205 Riverside Drive Trenton, MI 48183 734-675-2220 POTS, NCS, PAF/Secondary Autonomic Failure, MSA you may see the full listing at: http://www.dinet.org/physicians.htm You may find additional listings of docs who specialize in ANS issues at: http://www.ndrf.org/physicia.htm and http://www.americanautonomicsociety.org/ Nina

Most ssri's have similar types of side effects. I can tell you that I had nausea, yawning, and intense aggitation. You might want to check out the PDF download on http://www.paxil.com/ you'll find it on the lower left corner of the intro page, it says "Prescribing Information for Paxil? (paroxetine HCl)" Nina

POTS can go into remission or resolve completely for a small subset of people. This may be the case for folks with sudden onset, such as a viral onset, where once the virus runs its course, the body is able to heal. It's not likely for those like myself, who've had symptoms since early childhood, likely from birth. Additionally, for some, symptoms can be progressive, but moreso for the subsets with a DX of Pure Autonomic Failure (PAF), Shy-Drager, etc. Some autonomic docs believe that women who go through menopause may experience an increase in symptoms--I was warned of this by Dr. Grubb at my first visit. Nina

I had no problems starting florinef and did not have any side effects a few years back; however, many people do report having side effects such as headaches, rapid fluid gain, etc. Also, when my doc restarted me on florinef after being off for several months, it shot my bp way too high and I had to stop (it never did that in the years I took it before...something like 3 years?). Nina

Jess, living with this for my entire 39 years, I can tell you this: you'll go through cycles of good and bad, all of varying lengths and intensities. My best advice is to stay as positive as you can, while continuing to seek answers and help in the medical realm. Hang in there. Nina

Thanks for posting that--interesting--I have DSL so it was only a few seconds to load each video clip. If you have a slower connection, you may just want to do the sound clips. Nina

Could be either or both--especially if it's new for you, let you doctor know. Nina

You are welcome Dan--I hope that it really helps you. I've been gut-spasm-girl for several weeks, last night was ghastly. Thank goodness for my meds or I'd have gone to the ER too. Keep hanging in there dude! Nina

Yes to many of the things you experience. I get rashes, but mine are allergic in nature. I've taken Celexa at a low dose for 2 years now. The first few weeks were ****...I was extremely aggitated and nauseated, but once that passed, I think it did help me with my GI functions. Welcome to the board. I hope you find useful information here. Nina

The standard stuff for allergic reactions that require immediate attention are any reaction where you've got a fair amount of hives, any respiratory difficulty, and most especially, any swelling of the mouth, lips, tongue, throat, etc. Nina

Ooh Dan. That just stinks. I hope you get some ideas from NIH. I think we all have our own ER horror stories--I've had a few doozies. I always have to weight out if I feel bad enough to run the risk of having them make matters worse (been there, done that, don't want to go back). Dan, I hope the spasms back off. Nina

Oh, by chain reaction, I mean that any subsequent things I eat or come in contact with give a high likelihood of give me hives, rashes, etc.

I have developed skin allergies as well as systemic allergies...basically, my immune system is very over reactive and once a reaction starts, it's like a chain reaction. The only thing I've found to help is to stay on zyrtec and benedryl daily, adding zantac during a reaction (zantac, while used for acid reflux, is a type of histamine blocker). Nina

You are welcome, welcome, welcome Nina

Dan, owner of a bag of brains, this is the other bag of brains talking: get better soon. Big hugs to you. Nina

Ribbit... trying to break into the top ten...only at 11 (for those who aren't getting what I'm talking about, it's ToadGames, of which Dan is a prince among toads) Nina

Okay Dan, what were you doing in the hospital? Huh? Inquiring minds want to know. Okay, Mighty wants to know. Nina

Hey, I've passed out in Amsterdam too... oh, but that wasn't from POTS I had a VERY good time there for New Year's 1998 turning 1999. We did, in fact, "party like it's 1999." I have a bad habbit of passing out while mowing the lawn or gardening. I'm sure half the neighbors must think I'm a drunken lush or something! Nina

One of the medical things that still cracks me up happened during a test at a big-name hospital. I was supposed to stand for an HOUR...off meds. Yeah. Well, about 45 minutes into it, I'm standing, but my body is trembling all over, I'm pale, sweating and my heart rate was through the roof. The nurse was taking my bp periodically, and this time she pumps the cuff up at least 5 times and is mumbling "that can't be right, it only says 30"--she then called in the doctor and told him there was something wrong with her bp cuff. He takes my bp and looks up at me (I'm still standing, wobbling a LOT, but standing). He takes it a couple of more times, and looks confused. He turns to the nurse and says "your cuff is not broken, her blood pressure is 30, but I don't understand how she's still standing up." Yeah, me either. The sweet part was that at the end of the test, he sat down and talked to me for a while. I think he was completely shocked that I could be conscious and talking with a bp that low. He asked me how I manage to get out of bed each day and function--and I told him "I don't know, I just do." When I want to make myself laugh I just think of that nurse's confused face. Nina

Hi, so sorry about your miscarriage As for the risks from pregnancy, I'm not sure that's there's a completely clear answer. I asked that question of Dr. Grubb (an E.P. Cardiologist who sees many POTS patients) when I saw him at my first appointment. He felt that I wasn't at any higher risk, but was more concerned with how I'd keep up with the energy needed to care for a baby, toddler, etc. Granted, I decided that I would not have a baby, not because of my POTS, but because I have many other health problems as well. I think it still may be possible that there are additional risks to a pregnant woman and baby if the mother has POTS, however, there's really not enough medical information out there to conclusively say either way. Hopefully more members will respond to your question. Nina

I'm with Michelle on this one. I will tell you though, that some docs DO check out this board and others, but their time is so very limited, so it's unlikely to get ongoing participation. I think that one of the best ways to get the point across to the doctor's who work with us is to continue to share during your appointments, as concisely as possible, how dramatically your life has been affected by having POTS. My old GP and I had an understanding--He knew that I'd never show up at his office unless whatever was going on had become too much for me to manage w/ good sleep, good diet, over the counter meds, etc. Also, some doctors are just beyond convincing; many have been socialized through their educational system to make assumptions about patients that are not in our favor (such as the mental leaps made when they see someone with POTS: we look well and don't have abnormal blood work, so the first thought is then a psychological problem like depression). I think the first step toward fixing that is to go to the source; one of my old jobs had a list of knowledgeable doctors (we screened them) who were willing to give guest lectures that we arranged and our staff accompanied them. Worked great in developing a better system of screening young children for autism...don't see why that couldn't work for us too... however, I could see that being a bit farther down the road for us as DINET continues to grow. Nina

I tend to get very symptomatic when I'm getting sick, such as have the flu, sinus infection, or even just fighting a cold. If your symptoms don't slow down, go to the doctor. Hang in there! Nina

You might want to try asking your question on the NDRF forum, which you can get to by registering with http://www.ndrf.org I know there are several Canadian's on that discussion forum, and they've mentioned a specialist in ....hmm...Montreal, I think? I know that's a LONG way from where you are, but might be worth a shot. However, the Mayo Clinic in Minnesota within the US might be closer for you. Nina