juliemc77

I have always had heat intolerance, but it had gotten worse after I was diagnosed with POTS three years ago. In those three years, I pretty much spent spring, summer, and fall in bed, unable to do anything because of the heat. I wear short-sleeved shirts with no coat in the winter, and people think I'm nuts, yet, I'm still hot when it's 20 degrees out! It really didn't matter what the temperture was outside/inside, I was just always overheated, constantly, it's like my body didn't know how to cool itself down...and of course the warmer the weather, the worse it was. I've sworn up and down that the midodrine, which was started just after the POTS diagnosis, was the culprit, because it was soooo much worse than prior to the Dx and starting midodrine. A month ago, I held firm and asked to come off the midodrine. Last week, I was down to 5mg/day and it was in the mid to upper 70s here and I noticed a huge difference. In fact, Saturday was my first day completely off the midodrine and it was 77 degrees in my house and I was cold! I could feel the warmth, but it wasn't really affecting me. With activity, I still get warm, and can even get a little overheated, but it's nothing like it has been the last three years, and I'm able to recover a lot quicker. The real test will be when it gets into the 80s/90s, but I'm a little bit more optiomistic this summer having stopped the midodrine. When I complained about the heat, my doctor recommended a cooling vest; I never did get one. But, I did find that putting an ice pack on the back of my neck and lying down for a bit would help cool me down quicker. Also, a friend told me to run cold water over my wrists...I thought she was nuts, but I have to say, it really worked for me. Best wishes for us all to make it through the summer!

Glad to see a post on this, as I have been contemplating a medical ID bracelet for some time. I came across http://www.medicalert.org, which was posted on the FAQ's post in this forum (it's a pinned post). Because of the lack of knowledge of POTS, and because certain situation and conditions can affect how my body works, it seems like a service like this would be a better route. I fear that if I had just a bracelet and it said even understandable terms like tachycardia, it's not enough for EMT/ER docs to work with. At least with this service, the docs can call and get a complete picture based on medical record information. I've already had to deal with medical procedure issues due to the POTS, that resulted in a 6-month delay, and I was "with it" to explain it all (again and again and again). I can't image what would happen if I was brought into the ER unconscious and not able to tell them anything! I haven't made a decision yet and I'd like to hear what others have to say. Has anyone used this particular service? A similar service (are there others?)? What are your thoughts? Please weigh in...I think the idea of a medical bracelet (at a minimum) is something we should all consider.

Puppylove, thanks for asking the question. I am also considering Mayo. I know that the one in Rochester has the Autonomic Neurology Subspecialty Group so it would make sense to go that route, however, the travel expenses would be more for me. My parents live relatively close to the one in Arizona, so I'd be able to save some $$ by staying with them, but I don't know much about the doctors there. I've seen a few people mention Dr. Goodman, but I don't see POTS or dysautonomia listed as one of his specialties, but from the sounds of it, people on this forum seem to go to him. I'd love to hear more stories about Mayo and other facilities/doctors so I can make an informed decision. Thank you to those who have posted so far.

Not sure what your diagnosis is or symptoms are, but here is my story. I've had 2 colonoscopies and 2 upper endoscopies. I had both procedures at once in December 2011, post-POTS diagnosis. It took 6 months for all the docs to sign off on the procedure because my HR was too high (before we started the meds to get the HR down for the procedure, my resting HR was 110+). Fortunately, I had a GI doc who knew a little bit about POTS and was very cautious of the high HR. Usually in these minor procedures, you have the option of an anesthesiologist (or their nurse) to be in the room monitoring you through the procedure...I would highly recommend this, even though it's an additional expense. Make sure when you go in for pre-op testing you TELL them everything (don't rely on them to read the piece of paper you fill out in the waiting room). In my case, neither one of the pre-op anesthesiologists I saw knew a thing about POTS (not surprised), but at least they recognized an excessive HR as an issue. The first time I went to get the pre-op clearance, they requested test results from various docs and concluded that I needed to see a cardiologist who would need to evaluate me and sign off. On to the cardiologist, who started me on metoprolol, and after a few adjustment (and 6 months later) I was cleared for the procedure by the cardiologist, as long as I took the metoprolol before the procedure. Back to pre-op for clearance, and it was almost halted. They eventually signed off, but stipulated that if my HR was too high at the time of the procedure, they would cancel it (this is not something you want to hear when you have to "prep" (aka, clean out your system) the night before and it is not a pleasant process. Fortunately, I had had both procedures done in the past, so I knew it was no big deal. Wake up, go home, good to go. Knowing that helped me remain calm before the procedure, which ultimately kept my HR low enough for them to proceed. But, I also had to make sure I was laying down for awhile before the procedure (I asked to come in early to do this...it's the only way I can get my HR down and stabalized) and had to stay cool (I was given ice packs). For me, the colonoscopy is more of a nuisance because of the prep. The procedure itself is relatively quick and painless. I don't remember how I felt after the first one (back in 2004), but this last time, I was just a little sore for a few days, kind of like having menstrual cramps. The moral of the story is, make sure you tell the pre-op anesthesiologist about your condition and any symptoms (HR, BP issues, etc.) so they can determine how best to handle the situation and determine if you need to take some of your meds the day of the procedure (or even come off some meds at some point before the procedure). Also tell them of any problems you may have had with anesthesia in the past (I used to have a hard time waking up, but ever since I started mentioning this to them, I usually wake up feeling pretty good). You may want to also get advice from the doc(s) who are treating your condition. Hope this helps, and best wishes! And in case you're interested in the outcome, they found remnants of internal hemorrhoids (which explained my bleeding), as well as gastritis and something else in the upper realm that I can't remember.