yogini

My parents are overprotective and incredibly supportive. My mom stayed with me for several months when I first got sick. I found that when she left I was able to do a lot of things that we/she thought I couldn't. I think we sometimes don't realize how much we can do until we try. And, of course, it was a struggle to get her to leave (and she keeps offering to return at the littlest flare up!). It's easier for me to assert myself because my family lives far away and I only see them a couple of times a year (during which I don't really mind being taken care of and spoiled). Reading what many of the members here go through with family, I would take an over-protective family member any day! Maybe it'd help if you or your doctor told your husband that it would in fact HELP you to improve if you were more active.

I confess to eating more sugar/carbs than I should. Just can't break away from pasta and cookies! I do take hot baths from time to time, but not as scalding as I did pre-POTS. I just get a little tired or tachy, so I am OK as long as I rest or go to sleep after. I love drinking fluids so that isn't a problem for me. Every once in a while, I'm late taking my meds. But I don't forget b/c I can feel it right away even though I only take a fractional dose of atenolol. I'm with doctorguest. Since I can't do all of the things that used to make me happy, I allow myself to do the things that are tolerable POTSwise, even if not "recommended". Don't feel guilty - enjoy what you can!

If this is a newly increased symptom, you should see a gastro about it.

You are probably getting razor burn b/c your skin is dry. If you tolerated the electrolysis on your eyebrows, it should be the same for your legs. I haven't had electrolysis, but had a test patch done for laser hair removal. I felt dizzy for a 1/2 hr or so and then I felt fine. I think it was due to the pain - but it supposedly doesn't hurt as much if you take Advil before. There are dermatologists that do electrolysis, so it might be better to take that route so you can discuss the potential effects. Although I like the effect of the laser, I'm sticking to Epilady for now b/c I'm hoping they'll come out with cheaper technology in a few years.

I always say I have a rare condition which basically causes my blood pressure to be too low and my heart beats fast all the time to compensate. I get a lot of crazy symptoms from it- the worst ones are fatigue and headaches since my heart is beating too fast and I need to rest a lot. That usually makes sense to people. And when related stories hit the news (like when the Wiggle got POTS), I forward the article and explain it is about my condition. My immediate family members and a few of my good friends have read a lot about POTS. For the rest of the people I think the above explanation is enough. I agree with Jennifer that people don't want to hear a whole long story and medical terminology tends to scare people away.

I agree with Maxine and some of the others on the salt. The things that regular people consider salty like chips don't do it for us. And Gatorade actually has less salt than a serving of chips! My main source of salt is 2 cups of organic chicken broth daily, each with 750 mg of sodium. I remember reading an article that frozen and canned foods are also good for people with POTS. I can't stomach most of those, other than very specifc brands of things (like Amy's Organic Pizza). Tomato sauce in a jar is pretty good too. I also agree on the MSG. I used to use Campbell's soup and then another powdered broth which had MSG. I think companies sneak in MSG by using other names for it - like hydrolized vegetable protein. My headaches went down when I switched to organic broth.

Here is an article in today's New York Times about how pro athletes are now drinking Pedialyte for hydration. I got a kick out of it and thought some of you might too, since this is news in our little corner of the world. The article says that Gatorade has come out with a higher sodium version and a lower sugar version (yay!!) to compete with Pedialyte. I have to find these and check them out. Three Yards and a Drink That Tastes Like Dust WHEN Tom Glavine, a star pitcher for the New York Mets, earned his milestone 300th victory on a hot and humid night last month, he had a secret weapon. It was not illegal. It was so safe a baby could use it. In fact, manybabies do. Between innings, Mr. Glavine sipped Pedialyte, a liquid sold alongside diapers in drugstores that is meant to quickly rehydrate toddlers experiencing diarrhea. The neon-tinted fluid that comes in grape and other child-friendly flavors contains electrolytes such as sodium, potassium and glucose, which happen to be the basic ingredients in most sports drinks. Without an iota of marketing effort from Abbott Laboratories, the maker of Pedialyte, the over-the-counter remedy with a teddy bear on its label has developed a small and devoted following among professional and amateur athletes, a trend that long-distance runners seem to have started sometime in the 1980s. Link to rest of article: http://www.nytimes.com/2007/09/09/fashion/...amp;oref=slogin

I just noticed that I have bruises under my big toenails on both feet. I think this may have happened a few weeks ago when I was walking around with compression hose and I'd let my toenails get a little long (sorry for the graphic detail). I remember my nails really hurt that day. But I had dark nailpolish on my feet and just saw the bruises when I removed the polish. So I'm not really sure when or how it happened - and have never had this before. Has anyone gotten bruises due to POTS or compression hose or know why it happens?

Is Wellbutrin an SSRI? If not, does anyone know the difference between Wellbutrin and SSRI's?

Hi. I've had this problem - I don't think there is a standard understanding of POTS/dysautonomia. I have gone back and forth with many doctors telling me what I do and don't have. After a while I just gave up trying to get a definitive answer. If this new doctor is not a POTS specialist, he might not know the right terminology. Since Mayo are experts in this area, I would go by the terminology they used. Did you get a letter from them saying what your diagnosis is? Did they say autonomic failure or POTS? If you have any doubt, give them a call. In the end, I think many people here have trouble getting the correct label for their condition, but the label is not as important as the testing and treatment. You could give your new doc some articles on POTS or ask him to talk to your other doc or Mayo to make sure they are all on the same page. I know this is easier said than done. Frankly, I got fed up with all the back and forth a long time ago I just decided to take what I wanted to take from each doctor. If you are still trying to figure out what is wrong with you, maybe you want to continue with testing with BOTH this new doctor and your neurologist. Good luck.

I think IV saline accomplishes the same purpose and may be easier, cheaper and safer than a transfusion. But it seems like only a few people use saline - it is controversial, I'm not sure why. For me the effects of an IV (which I only had a couple of times) lasted for a day or two. Have you tried florinef? It increases blood volume in a more constant way.

Hi Linda, I believe that an issue with the vagal nerve or vasovagal reflex is basically the same thing as having dysautonomia. Does this doctor have experience in treating autonomic issues? Do your doctors think your GI problems are separate from the autonomic problems? Because the problems seem to usually be related to one another. -Rita

Pooling just means that blood is collecting in the limbs. I can tell that it's happening when my legs are red - they used to turn black, but now just red. The pooling doesn't always match up with how I'm feeling - I may feel "normal" when I have visible pooling and I may feel awful when I don't see any pooling. I don't think you necessarily feel when it's happening.

I think I asked my dr if I could only get tetanus (b/c I didn't want anything extra to trigger my POTS), and he said that tdap was standard these days and recommended. So I went with that. My dr has info about my shots in my file, and he checks it each time I go in for my physical (which I don't always remember to do on time). People that don't go to their drs regularly probably aren't current with their tetanus and other shots. Not to mention all those people who aren't even insured, tho that is another topic entirely...

Well, I did give some articles to my therapist on Monday. I told her that I when I talked about my health that found that some of her comments were not helpful and gave her some examples of this. She told me she knows that my symptoms were caused by my health, and that the only thing she found confusing was she couldn't tell whether the symptoms were caused by POTS or the medications I was talking. Funny, because I'm always saying this to her myself - that I hate taking BBs because they cause low BP and fatigue, the very things I'm trying to get away from. I'm not sure whether it matters why the symptoms are happening, since I don't have any choice but to take the BBs. So I didn't quite understand her point. She did seem happy to get the articles and thanked me for them both when I gave them to her and again at the end of the appointment. So, all in all, I'm not sure what to make of her response - though she at least seemed receptive to reading the articles. We'll see what she says next week and how she reacts when I mention my symptoms from now on...

Rachel, I had my booster shot back in May. I do agree that in the US a 10 year booster shot is recommended. For me, it was the 10th anniversary of my last shot- after I tripped and cut my leg on a rusty door - klutzy me! I was worried about having a POTS flare up, but it was basically fine. I just felt dizzy for about 1/2 hr - the same reaction I have when I get the flu shot. My arm also hurt for almost a week, but I think this common w/ the tetanus shot. Good luck!

Flop/Katherine, I will PM you. As for the Dinet brochure, I think the old one was a great summary. The new one is more about Dinet than POTS...which is fair enough, but isn't what I want to give to my therapist. Deucykub, the JH article is one of my favorites too. Does anyone else have any ideas? Thanks again, Rita

I'm looking for articles summarizing POTS to give to my therapist (and also to add to my own collection of articles). I've done some internet searches and looked at some of the articles listed on Dinet, NDRF. I may wind up using some of those, but a lot of them are very technical and also specific to certain aspects of POTS (as opposed to being a general overview of the condition and its symptoms). I would like to add at least one or two that are more user-friendly and not too long. Also, Nina, is there any way to get a copy of the old Dinet brochure? Thanks!

By the way, I just wanted to clarify that I am prepared to end things with the therapist if she doesn't seem open, but I just wanted to try giving her some info first...

Hi Emily, I used to rent a lot (pre-POTS) and from what I remember, the rental agencies only offer limited brands/models of cars. You may want to check on their websites, which usually list the available models. Also, if you go to the rental office at an off-time, the agents are usually helpful... maybe they'd even suggest something for you or let you sit in the seat to see how you feel. -Rita

Laure, Glad you're doing better. I know someone had posted asking about you a while back. Hope the treatment continues to work. -Rita

Thanks guys and especially Doctorguest. I appreciate all of your replies and support! I did some web searches into how/why to terminate a therapist - and none of the reasons that were cited (putting down you and your family, being egotistical, etc.) would really apply here. My therapist has been fairly normal, so I do think it's a great idea to give her some articles. I did have a hard time finding someone decent who accepted my insurance, so it'd be better if I could make it work. Although my therapist doesn't have other patients with POTS, she does treat others with chronic illness. I'd have hoped she was a little more sensitive, as some of the issues (like fatigue) are not unique to POTS. I know POTS is pretty complicated - and I don't expect her to understand the ins and outs of it. But I do need her to understand that the main symptoms I tell her about are part of the illness and that I'm not causing or contributing to them. I think its a great idea to give her some articles to explain. I think I gave her some when we first started, but since it's been a couple of years I should probably do it again. We'll see how she reacts - I hope she'll be receptive! My appointment is on Monday, so will let you know how it goes.

I've realized that whenever I tell my therapist that I feel fatigued from POTS, she asks me whether I'm taking a good multi-vitamin. I do take one, and I've told her this many times. If she's asking this question I feel like she doesn't understand the severity of our fatigue - as if it can be cured by simple vitamins....don't we all wish! This is despite the fact that I've told her there are many weekends when I don't have the energy to get out of bed. Also, whenever I tell her I have a tachy episode, she always asks me whether I was really worked up about whatever I was doing. For example, I took a short day trip on Sunday and had some unexpected severe tachycardia. She asked me whether I felt anxious about going on the trip - which I wasn't In fact, I took the same trip 3 times last year and didn't have any problem...so I was walking along on my merry way when the tachycardia hit me from out of the blue...which is how it usually happens. I feel like her question implies that I'm worrying myself into a tachycardia spell, which isn't right and not what I need to hear. I'm already upset that my POTS has been worse over the past several months. I've worked with this therapist for 2 years and overall I've been satisfied. But I'm frustrated because I've told her many details about my illness and I'm still getting these kinds of questions from her. Am I being too sensitive? I have a tendency to keep quiet - should I say something to her about this? Any advice would be appreciated.

Get well soon, Melissa.

Hi. I think some of what you've expressed in your posts is normal for someone newly-diagnosed with POTS. However, if you're spending a lot of time thinking about these issues, the thing that will probably help you the most is counseling.