stellaluna

Thank you so much. It is so hard looking at all the options without the input of someone with experience. I will give that one a try. Thanks again.

I am thinking about purchasing a wrist HR monitor (a few also have BP). I am an active elementary teacher during the day. Normally, I listen to my body warning signs to alert me when I need to slow down and work from a sitting position (I have never passed out thankfully--very worried that will affect my employment if I reach that point). I'm hoping a wrist monitor (subtly hidden under clothing cuff---also many people wear those step and health bands so may not be so noticeable....) could help me see when i REALLY need to slow down/sit down. I have an arm cuff BP/HR machine but cannot/will not check while teaching and with students present. My question is--- because there are so many options and such price differences sometimes, does anyone with experience with them have recommendations or ones they did not find helpful / useful for whatever reason?

I just went to the hospital where I had my "positive" TTT. I asked for my results and specifically also asked for copy of the raw data. (I don' think I got what I was asking for.) The person helping me showed me what was available to print. What he gave me was just a paragraph/summary of my high, low, range and most upsetting an interpretation of my affect/emotion. It said I appeared anxious and nervous and crying at one time!!! I told them at the start I was anxious about the nitroglycerin due to a recent history of reactions with (CT contrast, chemical stress echo tracer and other chemical sensitivities and allergies). I had this done on the cardiology floor of a medium size hospital. (They called this part of the floor the outpatient CathLab) At start of TTT, I said I was concerned that my baseline HR would be higher than my normal and affect my results. SO ANNOYED that another medical person would suggest anxiety especially when the test was positive. I AM NOT ANXIOUS ABOUT STANDING UP! My heart rate increased 60 bpm and returned to normal after laying down. Sorry--need to rant to people who understand. I did have tears at one point because it was so uncomfortable (I told nurse this!) and I was trying so hard to power through the 40-some minutes to get the data I would need. I was in that catch 22--not wanting to pass out because I never have (who would want to anyway..? silly) but feeling so near black out and knowing it would likely mean a diagnosis. Also the onset of nitro was nearly-painful for me; felt it in my neck & stomach pain. I was not anxious per say during test but very uncomfortable with the intensity of symptoms we all know so well intensified by TTT and then my issue with the nitro. I also was very specific describing symptoms I experienced during the test to the nurses (extreme racing, palpitations, tingling in legs, odd feeling in back of my head, and others) that I would have expected her to note in my chart-----NOTHING. I went for my records in hopes of taking to a POTS-educated Dr. Also annoying that no Dr was present for my test. Two nurses or one nurse and an aide did the test and kept running out of the room to ask Dr. what to do when the machine beeped alarms (assuming because my BP was too low and/or HR too high. Dr. peeked in once to say "You're fine" and Nurses kept asking /telling me every few minutes I can stop anytime I want. At the start of the test the two nurse people seemed to have some confusion about why nitro was being used vs. other drug--forgot the name. Wish I felt they knew exactly what they were doing! I did feel safe the entire time but just a bit frustrated now. I left being told (my nurses--not the attending Dr. who was busy or elsewhere rest of time) I was symptomatic and it was positive though because I did not faint it is harder to clearly have a cause of my symptoms. A different dr. interpreted my results. Oh--- Also, I was misquoted on the chart, it said "I don't want to do this" when test was stopped when actually I said, "I don't think I can do this anymore, I need to lay down" after being prompted and asked every few minutes if I wanted to stop!! Anyway, sorry to highjack your thread. I guess I meant to respond and mention to you---- why would a dr. suggest increase water intake AND salt from someone who just had symptoms leading to a TTT to anyone other than a POTS patient?!!?!

In my daily life, I don't push myself in general unless very necessary. I suppose I mean, I sit down often and give myself breaks. ( I am a teacher and used to standing, walking and being on my feet most of the day but I have changed this. However, I have never fainted). I read recently the advice "You are not stronger than your blood pressure". A nurse told me that the best thing for me if I feel near faint, is to get down on one knee (to avoid a head injury if I did faint). At work, I have strategically placed chairs and sit much more often and ask students to come to me (vs.me making rounds of the room sometimes) or bring me items--NOT how I would like to do things or how I have done things in the past but my new normal. However, sometimes my ego gets in the way and I do feel like I have a bit of mind over matter.... ( I would never test this in the charge of children or in a dangerous situation but...). During my TTT, my HR surged with a rise over 60 beats and my blood pressure dropped so low that the nurses were shocked and just waited for me to pass out. I had to stop at about 40 minutes in because it was so unpleasant and uncomfortable. I was concentrating/meditating the whole time on geting through and not fainting.. passing out seems scary to me because it would be a tipping point (no pun intended...) in my medical plan (not that I don't welcomethe POTs diagnosis because it is a long-awaited answer and piece to the puzzle). I don't know if I'm making sense.

Jittery nauseous....5 times per day? Ugh... Can there just be an easy magic fix to this with no side effects please!!!

Lately, I too rarely get a fever when sick. I typically run low normal 97.5. When I am sick and feel feverish/chills might be 99.5 but often like you sue1234, might be just terrible malaise if I am fighting a virus. Interesting HeartandSoul, that prePOTS, you got fevers... Glad you are feeling better, sue1234.

Yes! I've always been somewhat crackly but seems like increasing with age or as of late. My joint cracking is more or less/ at different times. Elbows, knees.... Ankle is more bothersome sometimes. The one that feels really weird is the breastbone--sternum I think. Awkward feeling!

The fighter in me (not all days...) will continue looking for a doctor who will provide good care OR refer to someone who can offer expertise. I know what you mean. Sometimes knowing someone understands or empathizes can make all the difference. This summer, when a nurse took the time to do a modified tilt test in the ER and time stopped in my head and I realized what was going on; POTS... I was actually relieved because she was listening to me. The doctor then came in though and said I was just dehydrated. I know many people on here are probably family with with Spoon Theory but I only first read it a few months ago... and I cried; for two reasons. One, I connected with it and it explained what I could not yet. Two, I am I teacher. I have always thought that I was sympathetic and thoughtful about the needs of families with medical issues. But I never really understood. I didn't realize the struggles and effort of the little things like walking up to the school building door to pick up their child every day. In this way, I suppose POTS is making me a better teacher even if I do have to sit down more often. www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Alma, I was diagnosed with mild MVP (no regurg) aprox. age 8-10yrs. I have had chest mild pain & palpitations I have always associated with MVP and was told it was fine. In the past few years, echocardiograms showed it was changing slightly (other valves involved) and now some regurgitation, though sounds like no where near your ordeal reading your blog. Doctors are not suggesting a MVP plan right now. I was on Inderal to deal with tachycardia, palpitations and BP issues for MVP in my 20s. This summer I had severe dizziness and near fainting. Looking back, I may have had POTS symptoms much early than past 6 months but only recently orthostatic issues of (standing/walking). I had a CT scan (unrelated begnign lesion issue; 8th CT in many years but this time I reacted) that seemed to set everything in to overdrive this summer. I think it may be the chemical sensitivity piece though maybe also the dehydration of fasting before the CT scan contributed to it. My cardiologist says I need to stop thinking of myself as "sick". Her words... I went to her with concerns about my dizziness and BP. She also said, And even if it is POTS, there is nothing she can do. Lovely, huh. I had to suggest the idea of POTS and the tilt table to her so looks like I will be heading for a new doctor with POTS education. I have had that book for many years. I see the MVP dysautonomia connection in many people. I don't know if it is disproven as it is a bit outdated but I still pick it up now and then. Little did I know when I first got that book that the POTS part when be important info for me...

Makes sense that pooling can have an effect on pins/needles feeling. Current diagnostic criteria leads to estimate of less than 3% pop. with MVP.

Alma, thanks. I wonder if its MVP related in combo with POTs. I just had a Tilt Table Test yesterday. The pins and needles feelings were a bit more intense than at home and also felt in the hand/arm that had the blood pressure monitor on it. Only after quite some time and after they administered the nitroglycerin--hope I never have to take that again. That was an awful feeling (the nitro effects not the pins/needles) but I tend to be chemically sensitive with many things.

Yes. Thanks sounds like I need to get this sorted out before the TTT to have best possible, accurate results. So for my test, they said continuing current meds was fine. I was slightly annoyed that they did not tell me until the call the day before that I would not be able to drink (even water) or eat for 4 hours before my 1pm appt. Had I known, I would've taken a full day off work and not a 1/2 day as I become more symptomatic when I am not drinking LOTs of water and if I skip lunch. I wonder what the reason behind that one is....

Yes. Thanks sounds like I need to get this sorted out before the TTT to have best possible, accurate results.

I am undiagnosed POTs. I have mitral valve prolapse with regurgitation and have become increasingly POTs symptomatic in past 6 months. My question today is .... when you do a 10 min or so poor man's TTT at home, afterward when you lay or sit with feet up, do you experience tingling or extreme pins and needles feeling in your feet?

Uggh... I was given no direction about continuing current meds or stopping any. I was told by scheduler to have a driver (in case I had "trouble" with the test) and that I would be given a call the day before the test. Perhaps they will suggest something on the call. I am on daily Topamax (migraine) and Xanax. Skipping the Topamax makes me feel tachycardic sometimes--warns me that I forgot. I also have mild Mitral Valve Prolapse with regurgitation. I worry that skipping my AM Xanax will raise my baseline heart rate and affect my proper diagnosis on TTT.... Frustrating experience (no surprise right?) with the cardiogist but at least I finally got the TTT order from after many tests and appts and gently asked about POTS. My neurologist (for migraines) said "that's a cardiologist" issue. He also suggest it was anxiety despite my log of heart rates and BPs carefully recorded (and clearly leaning towards POTS per Vanderbilt ) as suggested to be taken and recorded daily by cardiologist. TTT this week, We'll see...