bunny

peregrine: I've actually been using electric blankets/mattress pads for some 15 years now. Initially my Dr had me using it back in the anorexic days to keep me from burning cals for body heat. Since then I've used it to make up for the fact that I do get cold easily. I just bought a new electric blanket back in October after my last blanket stopped heating. I absolutely love it! It has a programmable pre-heat setting so it comes on before I get in bed. You can also program the off-timer. I think it's something like 3/6/10 hours. Heavenly. Unfortunately last month's incident happened at a hotel and not my usual cozy bed. The shower stool is a good idea. I've had them in the hospitals. I've been reluctant to get one for home, for particularly no good reason. I ponder it then tell myself that I'm not that sick. Although I do usually wear my helmet in the shower and for a little bit afterwards. Sometimes I'll make it through the shower fine, then it'll hit me when I get out of the shower and start to dry off.

I wasn't into organic foods at all before POTS. BUT, one of my college degrees is in microbiology, with an emphasis on industrial and infectious microbiology. Two of my professors had come from the business world and worked for very large food producers. It's very likely that all of us have products from these companies in our homes. After seeing how the US food supply and US food manufacturing works, I (as well as my classmates) changed my food habits immediately. Upton Sinclair's The Jungle seems almost quaint compared to the adulteration of food products we were shown and taught to do. I now also avoid processed foods as much as possible. When you process something, particularly for the purpose of making it last longer on the shelf, you're often altering the nutritional content. After all, the bacteria, mold, and pests find this food attractive for the same reason we do -- nutrition. If they won't eat it, why would you want to? I'm not sold on 100% organic foods either -- the organic label doesn't mean exactly what consumers think it does. Many of the larger food producers now have gotten into the "organic" business and their definition of organic is quite different than mine. I try to go organic when it makes sense -- foods which retain more of environmental compounds than others, and foods which are at the higher end of the food chain (beef, chicken, etc.) I buy local as much as possible, which varies by market. In NYC, I find I'm able to eat well quite easily. Even healthy restaurants are easy to come by without resorting to hippie-esque establishments. In Florida's suburbia, forget it. All of the restaurants near one of my homes are chains. Gotta love the fluorescent-orange sauce from that "Neighborhood" chain. Nothing natural there. Even the supermarkets are iffy. Trying to find true fresh bread w/o preservatives is a lost cause here. I'm absolutely thrilled we finally got a Trader Joe's (and more planned!) in Florida so I don't have to go to Whole Paycheck. I have noticed empirical improvements in my health due to these changes in my diet and improvements in my POTS symptoms. I've changed more than just going from synthetic to organic. More fresh fruit & veg, less grains, less processed foods. The fact that my hair's growing thicker and multiple people have noticed this says quite a bit. Blood sugar levels are also much more stable this way.

Just curious to see if there's any sort of link here. I know it was mentioned in another thread that someone's neurologist said they weren't any more likely to develop Parkinson's than any other person. BUT I can't help but wonder as my grandfather had and died from Parkinson's, and I also have tremors from time to time. Both of my grandparents on my father's side had dementia in their final years as well. Since I had the tremors starting in my teen years, I had intentionally skipped any careers (surgery) which required fine dexterity just in case it struck me.

Usually my chest pain always starts as sharp pain, almost a stabbing/tearing if you will. That can last for up to an hour. After that it's just a dull sore ache that won't go away and lasts for a few hours, but no more than 12 or so. I've gone to the ER several times with it but no one's ever been able to come up with a reason/dx. The one time I had an audible clicking with each heartbeat. So loud that people 3-6 feet away could hear it and the docs though I had some sort of artificial heart ticking away in there. I would have loved to have known what was actually going on then.

Lemons beat me to it -- sometimes sleeping seems to be just as tiring as being awake and active! I find reading takes concentration, at least the materials I usually enjoy reading (medical/scientific journals, bible commentaries, financial reports). When I'm feeling my worst, I usually will focus on music (listening, finding), or photography. If I'm not feeling good enough to go out and take pics, I'll pick up Photoshop and work on some of the photos I've been taking. No matter how rough I feel, I've committed myself to going outside at least once a day. That in and of itself can be a chore, but has kept me sane throughout all sorts of illnesses. There've been times when I've been bed-bound in the hospital that I've had to absolutely beg to get outside for a bit, but it was worth it.

High heat + high humidity can be a real problem for me. My body doesn't seem to start to sweat until I'm not feeling good or am sick. My extremities usually feel icy. I'm generally always cold. Body temp runs on the lower side (96F/35.5C). I also have a problem with chills (flu-like chills, the ones that are just flat-out painful). Once I get chilled, there's practically no way for my body to get un-chilled without some external heat source. I had this happen last month and even after 2 hours of being in bed underneath a heavy jacket + comforter + blanket, I still had the chills. A long warm shower took care of that, but left me with the POTSy fun of dizziness & lightheadeness. Given the two, I'll gladly take dizzy over having the chills. Cold weather doesn't cause increased POTS systems for me; I just get chilled way too easily. Even in the summertime I still sleep with an electric blanket gently going.

I'm more sensitive to humidity than I am true air quality. My home has an elaborate climate control system, so there's plenty of filtering, plenty of fresh air. I keep humidity tightly controlled between 43-46%. Temperature varies by season, but ~70-72F for heat, 75-80F for cooling (inversely-proportional to humidity). If the humidity gets too high, my nose will get congested in my sleep, which will wake me up in the middle of the night. High humidity also makes it a bit more difficult for me to breathe when awake. Fortunately my workplace stays a chilly 72F/40% all year round. As far as cleaning goes, my home has tile floors everywhere except the bedrooms, so dusting happens a few times a week, otherwise I'll end up with dust bunnies. I have a Shark Vac-then-Steam unit which works quite well for taking care of the tile floors, but I still find myself using a regular mop & bucket a few times a year for a good deep clean. I'm not chemically-sensitive, but I try to use harsh chemicals sparingly. I'm also a huge fan of the microfiber cloths. I picked up a pack of them from a janitorial supply house and they are able to do just about everything I need. For cleaning windows, I stole an idea from a local ice rink and use a little bit (1 tbsp) of Dawn blue dish washing soap in a bucket of hot water. Vinegar works good at cutting grease as well. The only real issue I have with cleaning is if I'm reaching up above my head. Sometimes this will trigger an instant dizzy spell or even get my vision to gray out a bit. That's when I know I've done enough of that for the day. Dust & common pollution doesn't seem to effect me. I do quite well in large congested cities. I do find that carbon monoxide (being behind a badly-tuned car) seems to hit me stronger than others.

Has anyone tried just straight oxygen (without the increased pressure of the hyperbaric chamber)? I've been curious but never had the opportunity to try it.

They didn't actually show a tilt table in use or even talk about it. Just the sensational bits Ie: fainting, hearts stopping, a person being rushed to the hospital via ambulance.

well, it was just on. Partial text transcription of the segment can be found here: http://abcnews.go.com/blogs/health/2012/02/28/fainting-can-indicate-deadly-heart-condition/ The "deadly heart condition"? Cardiogenic syncope. The news segment made it seem like you were in imminent danger of DYING if you didn't run out and get a pacemaker. Unfortunately, this is blatantly false. It's been a few years since I've researched the topic (deaths due to cardiogenic syncope) but I wasn't able to come up with a single medical report of it happening. To be honest, the report felt like it was sponsored by Medtronic or other pacemaker manufacturer.

Does anyone's heartrate actually jump instantly? I notice it most when I am stopping exercise (ie: running to catch the train). My heartrate may be in the mid 100s while I'm running but within a few seconds of just standing there or just sitting down, my heart rate will go from ~140 down to 70 in one heartbeat and stay at 70, then dropping back down to my resting 50s after 5 or so minutes. It doesn't happen all the time, but often enough. I usually feel short of breath & nauseated when this happens.

Maybe I'm just an oddball, but sneezing usually makes me very dizzy. BUT say 10 mins afterwards, I'm not sure. I can't say I've ever noticed. I have a slight cold at the moment so I'll keep an eye on it. I'm curious now.

Has anyone had an anesthesiologist refuse to put you under due to POTS? Back when I was having major GI malabsorbtion issues, the GI wanted to do an endoscopy, colonoscopy, and possibly exploratory surgery. It had been over a month since I was able to digest protein and I felt like death warmed over for the appointment. BP was running ~80/35. GI doc was gung-ho on getting me in his new surgery center. His gas man vetoed it immediately, especially exploratory surgery. At the time I didn't mind as I thought the GI doc was completely out-of-line with his recommendations, but it does make me wonder about future surgeries.

Where's the options for below 60? I'm normally in the 50s when "resting", 60-70 bpm when actively engaged (sitting upright & thinking, focused on something, not exercising), 30-50 bpm when sleeping. Standing usually will shoot me over 100 easily. Exercise can run it all the way up to 180 or so. There's of course my heart's "resting" rate, 0 bpm, when my heart chooses to take a couple second nap (asystole).

My current work contract has me working 140 miles away from home, so I stay in a local rented apartment during the week and go home for the weekends. ~2.5-3 hrs depending upon traffic. Worst was 5 hours. Overall, as long as I don't eat much, drink plenty of fluids before driving, and have enough energy left, it's not bad. I usually kick my shoes off before I start and keep my feet/legs active during the trip. Sometimes I'll even prop one foot/leg up on the seat. Worst-case scenario is if I'm feeling sick or exhausted and eat a heavy meal, and am a passenger. Guaranteed I'll have an issue there so I'll just recline the seat slightly and lock the seatbelt tightly and see if I can fall asleep before it hits me. Sometimes I'll add a glass of wine and then I know for sure I'll be sleeping before I pass out. I much prefer flying at this point -- I can get up and walk around if I need to and most importantly, there's someone else doing the driving. I'd say go for it anyway! Make a few short-ish trips and work your way up to it. You could stay home & feel sick or be in the car & feel sick. Either way, you're still going to feel sick. You might as well get some benefit out of the time.

POTS + NCS here. GI issues as well although I believe I have most of that fixed now. Add tinnitus & osteoporosis in there as well. I find people mentioning allergies quite interesting, particularly denabob's mention of being allergic to drugs. The only thing I ever put down on dr's office info sheets for allergies is needles, as they cause a very adverse reaction (anger). I don't have any known allergies, but my body doesn't appear to be a fan of many drugs. Most drugs will cause me to violently vomit after taking them. I'm not sure if it's an allergic reaction or just God's way of making sure doctors don't try to prescribe a pill and think that'll solve the problem.

Dx'd at 24, but looking back I see it all the way back to my teens, possibly even earlier. It also explained a lot of why I held certain postures (I've always preferred the fetal position when sitting) and why I find myself fidgeting with my legs so much.

I gray out, if not pass out on many roller coaster rides. My doctor wasn't too terribly concerned about it and said as long as I go with someone else & try to stick to rides with full/larger restraints & get the restraint as tight as possible so my body doesn't whip around when I pass out. Ironically, this means I have to skip some of the tamer rides that only have a lap bar. I feel exhausted afterwards, but I still love going on them. The one ride I've skipped is Epcot's Mission:Space ride. With my heart going into asystole sometimes, 4+ minutes in a centrifuge scares me. Asystole for a few seconds here & there doesn't worry me. When there's the potential for it to be minutes with no way for me to get out of the situation, no way. I tend to ignore my symptoms and push through no matter what, but even here I draw the line.

Brain fog + GI probs would be the things I'd like to eliminate. As a second tier, the chest pains. I've had the fatigue/dizziness/fainting spells for so long that the few times it all goes away I feel strange. Feeling dizzy = feeling normal to me.

I've had various types of heart rhythm issues for as long as I can remember. Sometimes it's bad enough that most blood pressure monitors won't be able to get a proper reading. I now have a critical care patient monitor which manages to get a reading no matter what is happening. It's also reassuring to be able to do a quick ECG and confirm that it's just my body's abnormally normal and something new hasn't popped up. Doctors have had mixed reactions to my ECGs and various cardiac tests over the years. Those with aggressive tendencies were pushing for a pacemaker + multiple drugs, while those with a more conservative approach have advocated for close monitoring and observation. I've chosen the latter -- I work around too many electrical & electronic things that could seriously interfere with a pacemaker. I figure I can always get a pacer if I really need it.

How long of riding in the car before you find yourself feeling ill? You've ruled out the type of car (I know Cadillacs are particularly boat-like in their rocking). Do you have trouble when sitting for a length of time at home as well?

I'm generally considered to be a very quiet, docile person, so this doesn't affect me often. I'm very slow to anger. When I do start to raise my voice, I do notice the dizziness increasing. I think it's definitely related to the breathing (increased pressure) needed to produce a louder voice that is the trigger. I've never passed out from raising my voice, but I don't feel well afterwards.

Back when I was going through GI ****, celiac was usually the first thing every GI doc tried to blame it on and discharge me with instructions not to eat gluten. So, I did what any true scientist would do -- gluten binge! 2 straight weeks of packing as many gluten-laden foods as I could eat at every meal and my symptoms had mostly subsided. Informed the Dr of this and he was incredulous that I'd try such a stunt and even more angry that I'd challenge his dx. He then wanted to do exploratory surgery... No thanks. Its been 3 years since I finally figured out my GI issues and treatment on my own and the only GI issues I've had since then have been due to gluttony, not gluten.

Well, I did have one cardiologist who thought I should get an implanted pacer/defib. After reading that this wasn't life threatening, then looking into the side effects and complications of a pacer/defib, I opted against it. It's been quite a few years now and I still don't regret not getting it.

All of the medical literature I've seen as well ultimately says POTS isn't life-threatening in and of itself. Now, if you experience syncope, then that can be a problem if you happen to faint in the wrong place / wrong time, such as driving. I too was surprised when I learned of this. Don't forget that this DOESN'T mean we won't get additional injuries or live happily ever after. It's just not lethal in and of itself.