yogini

Ernie, The others have given you good advice. I think this is the appointment you've been waiting for for a few months? I just wanted to say I'm glad it's here and I wish you luck with the new doctor! -Rita

Amy, I understand how you feel about worrying about what the doctor might say. I didn't even tell one of my doctors that I went to Mayo because I was worried that they wouldn't be supportive. But I am glad that I went and it was something I just needed to do for myself. And I think the most important thing here is taking care of yourself, regardless of what the GP might think. It sounds like it's worth seeing the rheumatologist, because there is at least a small chance he/she could find something. If nothing else, maybe you should go to keep up the good relationship with your psych, because your psych believes you and wants to get to the bottom of things. And if the rheumatologist doesn't find something, hopefully your psych will continue to work with you until you get a diagnosis. By the way do you need a referral from your GP for this? Would your psych be willing to talk directly to the GP to explain why you need to see the rheumatologist? Hang in there, Rita

Tearose, You're so sweet to check in on me. For some reason I've been more dizzy and tachy than normal over the past few days. I have had few other weird symptoms, like dry, scaly hands, too. I am extra nervous, beacuse I have been slowly tapering off my florinef over the past 4 months, and I am down to the last quarter pill. The last 2 times I tried this, I crashed. So right now I am just loading up on salt and fluids and hoping that I'm not headed for a potshole... Will keep you posted. I usually have the heart monitor on unless I am just sitting around (or sleeping) at home. It's been a total lifesaver... By the way, I didn't get the chance to respond to your eariler posts, but congrats on how you handled the situation with the NY dr and Mayo! -Rita

Thanks guys. I do feel better (as I always do) after reading your posts. I think it's supposed to be warmer next weekend so I will wait until then to finish up my errands... Tearose, what kind of heart monitor do you have? I've got a Polar heart watch. Thanks, Rita

Tearose, I was about to suggest a body fat scale too. I am at 28% body fat, so I am a real horror! I've gained 13 lbs post-POTS, which I was hoping was water, but I'll bet it's fat...oh well... Merrill, I have a Tanita body fat scale, which I think is the most common brand. It sends a super small current through your body. I think it figures out the % because the current runs through muscle faster than fat (though I might have gotten it backwards). Oh well, back to the Golden Globes... Rita

I think I may have asked a similar question before, but I can't seem to find the post! I was feeling pretty well this afternoon. My pulse was in the 70s/80s sitting and standing today so I decided to go outside to run a couple of errands. I was OK at the store across the street, and then I went outside and walked almost a block and felt my heart start to pound. I looked down at my heart watch and my pulse was 120. It's definitely not the worst tachy I'd had, but it scared me enough to make me come home. I mean who knows how high it would've gone. I am wondering whether this was totally because of the weather, because when I came inside my HR went back into the 90's. I think this has happened to me a few times before. I know that POTS patients can be sensitive to the cold just as the warm weather, but do any of you get so tachy right away after being outside for just a few min? Can't wait for winter to be over, Rita

Sorry Danelle that you are having arrythmias. I have a question for you and the others - how can you tell when you are having arrythmia and/or your heart is skipping a beat?? I have arrythmia sometimes because it's shown up on tests. I can tell when I'm tachy but am not really sure I can sense the arrythmias. (Probably something I don't need to worry about if I can't tell it's happening, but just wondering) Also, I tried magnesium oxide (low dose 200mg) a month or so ago for heart rhythm and fatigue. I got the worst tachy on that day that I'd had in months. I am too scared to try it again, so I am just sticking to the BB and trying to get magnesium through food. It does seem to work wonders for so many others on the board, though. -Rita

The others have given you great advice. I just wanted to add that exercising too much may also trigger your symptoms. You may want to start off with something more low key like yoga, pilates or walking and then build up to running. I was in great physical shape before. After getting sick, I find that I get too tachy with the exercise bike. Like you I worry about it, which makes things even worse. I am just sticking to pilates for now, and will go back to the exercise bike after I have had the chance to build up my strength. There was a great post about exercise a couple of days ago, which has good suggestions. Feel better soon, Rita

Melanie, Sorry you are having a rough time. I agree with the others that the beta blocker could be lowering both HR and BP and working against you. On the other hand your HR is going to 158 on the beta blocker, so who knows. If your BP is dropping really low, it sounds like florinef or proamatine (which you talked about with your dr) would be worth a try. I think you can find the recommended starting dosages on ndrf and potsplace.com. It sounds like your cardio is difficult and on top of that doesn't know much about POTS. Is there a POTS specialist doctor in your area that you can see instead of having to go back to Mayo? I would check on the doctor list on potsplace.com. If there isn't one in your area, maybe it would make sense to find another cardiologist, EP, or GP that's more knowledgeable or at least cooperative. Feel better soon, Rita

Miriam, I went to Mayo in Sept. and was SO worried about the flight. At the time I was feeling terrible -- much worse than I am now. I loaded up on fluids and salt, wore compression hose and kept my meds with me, and I didn't have any problem on the flight. The flight wasn't that long, but I made sure to get up and walk around a couple of times to help the circulation. I would suggest watching the movie or bringing bringing a book or music to keep your mind off POTS. One thing which REALLY helped was notifying the airline in advance that I needed special assitance. I was stressed out about having to wait in horrendous security line at LaGuardia and walking what seems like miles to the gate. Normally, I could handle this distance, but I wasn't feeling well and I didn't want to take any chance that I'd miss my appointment. So on the way there, I decided to use a wheelchair from check-in until I boarded the plane. This was an extra safety precaution to make sure I made it onto the plane. Once I got there, and on the way back, we just hopped a ride on the cart and that worked just as well as the wheelchair. I am hoping to go to CA by myself this spring, and I think I will again use the cart . Hope you have a safe flight and a productive trip!

Have you had your blood sugar checked recently? I find this happens to me when I haven't eaten enough, I think my BP is dropping. I don't know much about blood sugar, but the low/no sugar diet may affect things. For some reason, it also happens to me when my BP starts to creep too high. Just theories - I know you've gotten a lot of other theories already! Hope you get to the bottom of it soon, Rita

Mary, I am very sorry you are dealing with so much right now. I agree with the others about getting help from friends/family and/or getting counseling if you can somehow find a way to do so. I know this is easier said than done. Also, maybe it would help you if you got away for a few days (either with or without your daughter). Is there is a friend or relative that you can stay with? Sometimes it helps to take a break, so that you can feel refreshed and have a new perspective when you get back. By the way, I know what you mean about insurance. I would like counseling too and I was waiting until Jan 1 when I switched from an HMO to a PPO. Under the HMO counseling was only a $25 copay, but under the PPO I have to pay for 50% of the cost myself! That is so crazy and frustrating, because the PPO is supposed to be better insurance. So now I don't know what I am going to do. Oh well. Best wishes, Rita

An event recorder didn't work for me. I sent in a ton of recordings when I first had POTS, but they were all "normal" even though I could barely hold my head up sometimes. My arrythmia and tachy did show up a couple of months later when I was hospitalized for a night and hooked up to the fancy machines in the hospital. Totally frustrating. I am with Nina, thank god for the TTT!! Thankfully, my docs have been OK with adjusting my meds based upon the changes I report from self-monitoring my HR with my HR watch. Good luck!

Hey Mindy, Just wanted to wish you well at the Cleveland Clinic. On the med question, I think it just depends on the person and the meds. I only take two meds, and since May I have tried 3 times to go off florinef. I was never sensitive to any meds before, but it didn't work when I followed the doctor's directions on reducing the pill. After posting about it, I realized that the only way I could do it was 1/4 pill at a time, and that seems to be working. But each person is different and you will get great guidance from your doctor on what to do. As for blood clotting, I don't know whether there is a link to POTS. I have read that healthy people sometimes get blood clots on airplanes because of pooling. So if you have pooling because of dysautonomia, I can see how it could be related. -Rita

Hey Lisa, Sorry you are feeling so tired. I totally understand where you're coming from. Between work and light cooking/cleaning and errands I am left with zero energy. And what energy I do have, I like to do something fun if I can! I still try to make myself exercise at least a couple of times a week, even if it's only for 10 min or so. For me, exercising at home is really important because its hard for me to get around, and I need to be able to lie down if I get tachy right after the exercise. Pilates really worked for me over the summer. I used a DVD and most of the exercises are on the floor. I even lost a few pounds. But then I went to Mayo (after I had a big crash) and they said I should focus on my legs. I tried ankle weights for a while, and resistance bands (which didn't seem to give me enough resistance), and then I bought a little peddle exerciser. It is a mini-version of a bike which sits in the corner of my living room. I just ride it for 10 minutes when I have the time and feel up to it. And I can watch TV while doing it too! I am going to slowly increase the time, and eventually I will go back to the gym. Anyway, I think any kind of light exercise would probably be good if you can handle it, especially if it involves the lower body. And I would recommend either pilates or the peddle exerciser, because they both seemed to have helped me. Also, walking is really good too - on days that I don't exercise I at least try to take a walk or two. Good luck, Rita

Sorry your daughter is ill. That kind of a response of a tilt test does suggest some kind of dysautonomia. It could be POTS or NCS. People with these conditions have all sorts of symptoms, so I don't think there is a general rule that you can't have POTS if you black out. What medicine is your daughter taking and in what dose? I take florinef which is a steriod and in some cases causes potassium loss. It is a really potent drug, and insomnia, headaches and stomach problems are common side effects. So it could be the dysautonomia or the medicine which is causing your daughter's current symptoms. Is the doctor a dysautonomia specialist? There is a list of doctors on potsplace.com that might be able to give you further info.

Thought of some more: Funny Finding Nemo Rush Hour/Rush Hour 2 Shrek/Shrek 2 Drama Mystic River (sad) A Beautiful Mind Pieces of April (really sad, but good ending) Rabbit-Proof Fence Beaches (sad) Steel Magnolias (sad) Foreign Central Station (Brazilian) East-West (French) Talk to Her (Spanish)

I just saw Wimbledon last weekend. I watch a ton of DVDs, because I subscribe to Netflix. It's much cheaper and more convenient than the video store, especially when you have POTS! I really liked Terminal, Collateral and Something's Gotta Give. If you are into alternative movies, Garden State is a wonderful movie too. I rent TV shows that I always wanted to watch but never had the chance to, like old seasons of HBO shows (Sex & The City, Six Feet Under, Curb Your Enthusiasm) and 24 (which I never thought I would like, but I am totally addicted)!

I am not sure we are that similar. I had a positive TTT, so I definitely have POTS, whereas your diagnosis seems unclear. It also sounds like you are able to do most of the things you used to do, while my life is still pretty limited by POTS. I can make it to and from work (sometimes barely) and I can do other activities sometimes, but not often. I have a constant feeling that the ground is moving up and down when I walk, I walk at snail's pace, and am tired all the time. There is no way I could be on my feet all day, go rollerblading or do the other things you talk about doing. I am getting better slowly, though, and I do think I will make a full recovery. I think you need to focus on the positive. Even on the off chance that your symptoms continue in the long run, it sounds like you would have a very fulfilling life. By the way, sorry you didn't get into Mayo. There are other places to get testing, though. You seem very persistent, so keep trying. That's the only way you'll get answers.

Congratulations on getting a diagnosis - that is really great! Hope you can get the testing you need soon.

I just have a constant post-nasal drip, which is nasty but at least not visible. I am always worried that it is blood, because I tend to get bloody noses from time to time.

For most people, 105/65 supine would NOT be considered hypotension and is well within the normal range of BP. My understanding is that it is also normal for BP to increase from lying to standing. If you want to know whether there is a problem with your baroreflex response, you can simply have the valsalva test. I don't know whether these reflexes can be "damaged", per se, or whether they just doesn't respond properly. I agree with tearose that it might be a good idea for you to go somewhere and have all of these tests so that you can know once and for all whether any of these issues exist. I can tell you that I have many, many more symptoms than you, and all of these tests came back negative for me, except the TTT and the fact that I have documented orthostatic hyoptension and tachycardia. Like you, porque, I have been told by several doctors that I will be completely better over time. I have accepted that this is likely the case, but I also understand that there is a possibility that I won't get better. Right now that possibility seems remote, so it doesn't make sense for me to worry about it. Unfortunately, I don't think any further testing or theorizing about what is wrong with me will help me at this point. Only time will tell whether I will get better, and in the meanwhile I just need to be patient. I understand that having an illness is something that everyone deals with it in their own way. If you are having trouble dealing with this, maybe it would help you to get counseling.

I agree with Nina. In my own case I'd assumed that I had nerve damage, but my tests from Mayo indicate that I don't (or that any damage had healed by the time that I got to Mayo). I am glad that I don't have the damage. Unfortunately, I still have plenty of POTS symptoms, though.

Here is a description from potsplace.com: Hypovolemia (low blood volume) sometimes occurs in POTS patients. Reduced plasma renin activity often accompanies the low blood volume. Reduced levels of renin release consequently result in reduced secretion of aldosterone. This would be expected to impair renal sodium conservation thereby contributing to hypovolemia (Streeten, 1999). Findings suggest that the impaired renin release may possibly result from sympathetic denervation (Jacob & Biaggioni, 1999). Physicians believe hypovolemia and inappropriately low levels of plasma renin activity may be important pathophysiological components of orthostatic intolerance (Jacob, Robertson, Mosqueda-Garcia, Ertl, Robertson & Biaggioni, 1997). Also, I think (but am not sure) that people get hypovolemia from other medical causes, then develop POTS-like symptoms from the hypovolemia.

Emily, I don't know much about GI issues, but I am so glad you're able to see your doctor today. Please let us know how it goes, and get well soon! -Rita