bunny

I'm a native Floridian, so my experiences might be different than yours...   Indeed, my body does seem to function better in colder weather, to a point.  If it gets too cold, my body struggles to maintain temperature and I start to go into the early stages of hypothermia, not fun. 

Humidity is the toughest part of living here for me, much more so than the heat.   Believe it or not, nights can be more brutal than the daytime.  80F with 100% humidity at night gets me worse than 95F w/40% humidity mid-day.   I've even had times when I've had to go back OUTSIDE because the AC inside a building isn't working properly and it's overly-humid inside. 

As others have mentioned, cooling towels are helpful.   I find keeping hydrated with water (not other drinks) makes the biggest difference for me.  If I'm going to be outside for awhile, I carry a small rechargeable fan which does help.  Likewise, trying to stay in the breeze or airstream of a fan helps.  

At home, my dehumidifier is my friend, even with the AC running.  It's amazing how much better I sleep with lower humidity.

It's been a few years since I've had the flu (thankfully!) but the last time I did it was a bad case of it and my resting pulse went from it's normal ~35-55 bpm up to ~90-100 bpm.   IIRC my blood pressure also went up quite a bit during this time.  It felt quite uncomfortable, but as others have mentioned, elevated BP + pulse are normal when the body's immune system is cranking away. 

As part of a different procedure (fecal transplant for C. diff) , I had to get a colonoscopy. Due to my condition, the GI doc thought it was best to skip anesthesia entirely. This ended up being a great decision!

The prep WAS bad. And I echo Ancy's suggestion of drinking more fluids. Hopefully I'm not being too graphic here, but after the first two runs to the toilet, subsequent runs caused an intense burning sensation down there after going. This was the result of the raw gastric juices making contact with the rather sensitive tissue down there. Cleaning off with a wet piece of toilet paper after going each time quickly remedied this. I mention it only because no one else mentioned it to me and it made the experience far more bearable. Unfortunately for me, the deluge never stopped and from ~5pm to 6am. I was up ALL night. I had 'saddle sores' from spending so much time sitting on the toilet. I ended up driving to the hospital with a towel underneath me just in case. Thank God (literally!) I was able to get to the hospital before the next rumbling happened. Yes, I drove myself.

For my procedure, it went rather smoothly. I went to the hospital, they started to prep me like a regular patient when I stopped them and said we're not doing anesthesia. They were rather puzzled, but looked at the charts and saw the notes. They gave me an Immodium to stop prep-induced diarrhea, started a saline IV on the top of my hand, which caused me to pass out. Why, I'm not sure, as I've actually done my own blood draws before and I've never had a problem with blood draws from the elbow or arterial blood gas draws from the wrist.

Once I was back among the living, it was back to the operating room. I was rolled over on my side, given oxygen (ick..hated that feeling), and the Dr started the procedure, using a pediatric scope. During the entire procedure there were 2x ~3 second periods where I yelped from pain when he was pushing air into my colon. Yes, that part hurt, but the pain was over as quickly as it came on so it wasn't that dramatic. I did faint very briefly at one part, and came close to fainting at a few other parts, but I faint very often in real life and hadn't slept in almost 36 hours, so I chalk it up to that. We had discussed this previously, so any time I started to faint, they'd pause and wait for me to feel better.

I have a very twisted and self-deprecating sense of humor, so the ******* jokes were flying fast & furious with the staff, Dr, and me during the procedure. "Everyone calls me an *******, now I've got video proof!" The whole procedure took less than 20 minutes. At the end I joked "wow...all of that and you didn't even buy me dinner!" They wheeled me into the recovery room, wherein I scare the recovery nurse -- I was fully conscious and she wasn't expecting it. They said I was free to leave, but I asked if I could sleep as I hadn't in 36 hours. No problem. I slept for about 2 hours. When I woke up, they brought me breakfast with a note from the Dr, "how about I buy you breakfast instead?" Touche.

After that, I showered, got dressed, and drove to work! I was at my desk by 12pm. Everyone at my job was surprised to see me and thought I'd be gone for at least 1-2 days. They couldn't believe it. I felt fine, actually.

RE: IBS, my GI doc and I had a few discussions on it. The short: we both aren't too sold on it as a real diagnosis. Real symptoms, yes. But as to the cause, GI docs label someone with IBS and that's the end of it -- they don't seek to find the cause. After my fecal transplant, my GI tract went through quite an adjustment period. I started having gastroparesis and what most docs would have called IBS. EXCEPT in my case we knew what had changed -- the bacterial flora of my intestines. Nothing else. So we knew where to look. After some tweaking of the intestinal bacteria through diet, a little chemistry, and fermented/live foods, the bacterial colony balanced itself out and life was good. It's been over two years now, no problems. Well, no GI problems. I still am very orthostatic, still have POTS/dysautonomia, still pass out very often, but the GI's working fine.

I just had my last eye exam in December. Checking eye pressures started a bit of dizzness, dilation got me pretty good. Fortunately the dr's office isn't too far from my house. I drove straight home, struggled to get up the stairs and flopped on the couch. Didn't even get a chance to check my vital signs, but I know my body wasn't happy. Woke up about 2-3 hours later feeling good.

I don't have IR lamps, but I do have small space heaters in my bathrooms. Humidity, rather than heat, bothers me most in the bathroom. I also tend to get cold very easily, so the heaters are my best friend. When I get chilled, no amount of blankets/towels will do. Only external heat works, and it works wonders for me. If I'm in a hotel and get chilled, I'll fire up the hair dryer as a temporary fix.

SO = significant other. I've had POTS since my pre-teen years, maybe even earlier. The level of symptoms has varied widely over the years from being mostly bed-bound to almost feeling normal. I have a long medical history and to this day the Drs can't explain why I'm still alive. I had one say I was just too stubborn to die. The most true thing one of them said was to throw out the medical textbooks as they no longer seem to apply to my body. If anything, some of the worst health I've had has been when Drs try to force my body to act normally.

Do you have any other info on that study? I'm always interested to see what others have seen/learned.

I'm not sure how the heck I pulled 4.2 miles off last week. I had been doing ~1-2 miles and that would wipe me out for a few hours afterwards. I was walking around today outside and maybe did a mile and ended up sleeping for 2 hours afterwards. Go figure.

I'm not sure if this is true for anyone else, but the most difficult time for me with exercise is immediately when I stop exercising and afterwards. My pulse drops almost immediately and the dizziness hits hard. Sometimes I'll pass out, other times I'll just feel terrible for an hour or two. Literally, my pulse will go from 140 down to 65-80 in just a couple of beats.

I'm just starting to get back to the gym and have had a rough few weeks just barely able to keep a slow walking pace where I'd pass out shortly after exercising. The other night I just got fed up with my body and basically ignored it's complaining and just beat my body up on the elliptical for an hour. I had my SO with me and didn't care if I passed out, threw up, or anything else. 1 hour later, I survived. My body was shaking/trembling, heart rate was erratic, I was dizzy as h*ll, but managed to squeak out 4.2 miles. I was shocked to realize that a 5k is only 3.1 miles. I never thought I'd be able to complete a 5k; I've always wanted to do a marathon.

As far as the aftermath, my BP and pulse were substantially more "normal" even when I slept. After 16 or so hours my body went back to its normal weirdness. I actually felt quite good, despite being exhausted. I'm hoping to give it another go this coming week and see if it was a fluke and if it's possible to improve.

I had to do a fecal transplant last year due to a C.Difficile infection which thousands of dollars of antibiotics failed to make a dent in. They did a colonoscopy as part of the procedure but the Dr was absolutely scared of my body. As a result, -NO- sedation was performed and they used a pediatric scope. Not even a saline drip. They did place an IV cannula just in case they needed to push drugs but nothing happened.

There were two times when he was pumping air in which were very painful but the pain resolved within 10 seconds each time. I did get lightheaded and my BP dropped a bit but I was fine, nothing worse than my body acts in its normal daily weirdness. The prep was honestly worse than that. I got a bad case of booty burn from the prep and had all sorts of BP/electrolyte issues from that. I'm not sure if going without sedation is an option when they're cutting polyps out, but after my experience I can't understand why doctors routinely put patients (and their bodies) through sedation.

As soon as I was discharged, I drove to work feeling good and put in a full day's work and drove out of town the next day. I had scheduled being off work the whole day (and worked until 4 pm the prior day) so I didn't need to go back to work - I honestly felt that good where I wacted to get some work done.

If I ever have another colonoscopy I'll gladly do it without sedation again.

Have you thought about how you're going to get there? For me, the travel itself can sometimes be the worst part.

Back in February I had to stand in line for 80+ minutes at JFK airport because of the TSA's incompetence. The blizzard just happened and this was the first day the airports were back open...TSA had ONE security lane going for the entire terminal, and decided to shut down that lane for 15+ minutes for a shift change. Normally I don't need a wheelchair, but I was wishing i had one that day. Kept going between sitting on my carry-on & the floor. Really wanted to lay down but there was nowhere for me to do so. It certainly made me reconsider the necessity of a wheelchair in such situations. I've also since enrolled in US CBP's Global Entry program which will allow me to bypass the security / immigration lines most of the time.

Similarly, I'm only good for a few hours at a time in the car. Depends on the car, how I'm feeling in advance, and if I'm driving or not.

Hotel-wise, my preference is for Marriott's Residence Inns. Free breakfast always, and many of them also offer free dinner. They also have kitchens/kitchenettes and will even do the grocery shopping for you. Every one I've stayed in recent years has accessible rooms as well. Definitely not the cheapest, but they've treated me well. Most of the properties have been renovated over the past 2 or so years as well.

I usually pick the hotel based on brand & what's nearby. I usually try to stay within a reasonable distance of a grocery store/bodega and an office supply store/Kinkos for any work-related things which might crop up. The past 3 hotels I've stayed in had grocery stores / bodegas within 3 blocks.

Absolutely nothing for breakfast. My stomach's usually not ready to handle anything + my blood pressure's usually low in the mornings. Attempting to eat breakfast will either cause me to yak or pass out.

Definitely have an arrhythmia, but no specific type has ever been identified. IIRC it was just too random for them to attach a specific type to it.

As far as passing out due to palpitations, I've passed out while having palpitations, but I wouldn't say I passed out due to them. The palpitations were more secondary to everything else which was going on.

TCP: Good tip on the cool-down rinse.

Also, something for people to try is putting a fan in the doorway of the bathroom. I find the steam/humid air makes matters worse for me.

I still drive, but I keep very close tabs on my body. If anything's not right or even think I might have any issue, I delay the trip. I view it no different than any normal person. People shouldn't drive if tired or impaired. Same goes for me. I also get feedback from my car -- its controls are very heavy so I can feel how much strength I have.

High humidity kills me. I had a contractor doing some work on the house today and he had the attic hatches open and some of the walls cut open, letting humid outside air in. Even with the AC running I started feeling not-so-great. I also remember having lunch at a restaurant whose AC wasn't working too well and it was very damp, same thing. Taking a shower also can also do a number on me.

I keep a dehumidifier running at home and it seems to help a lot.

Have you tried showering at different times of day? My body has a rough time getting going from sleeping. I usually wait at least an hour after waking up before even considering a shower. Even then, it's hit or miss. I try to keep moving the entire time and try to avoid reaching up.

That's interesting... I get the same symptoms after eating, especially weakness, dizziness, and the BP drop. My drs theorized that it's the blood vessels in the digestive tract opening up to exchange nutrients. I try to plan my day so I can take a nap after eating. I figure if I'm not feeling well, I might as well not be awake. Carbs / protein / processed foods seem to be harder for me to digest than fruits & veg. I also seem to do better when "grazing" over a few hours than trying to do a sit-down meal.

Friday7: Not sure if you can swing it, but check CraigsList for portable air conditioners. They don't work as well as regular ones, but can give you a little relief for a room or two. FWIW the twin-tube models work better than the 1-tube. They sit entirely inside your room and just have a hose that goes to a little flat panel which sits inside the window. Never had anyone complain about mine and I'm in a HoA area.

Older thread, but still interesting and relevant. Has anyone ever received a plausible explanation for their chest pain? I've been through all sorts of tests, but never have had a good explanation for the cause.

DeGenesis: No, I can't say that I have...but usually when my body's acting up, I try to let it sort it out...and often just take a nap. Naps (or passing out) seems to be like a reset switch for my body.

5 minutes seems way too short to me. I passed out around 6-7 minutes, and I was the fastest my cardiologist's office had ever had. BP/pulse spiked around 4 mins then precipitously dropped and I went into asystole. Their protocol was the typical 40 mins then iso for another 15-20 minutes if I didn't go out in the first round.

I never went through with it, but one of my GPs was strongly pushing for me to get one back when I returned to college. From what she was telling me, it was just a matter of her filling out the paperwork, mailing it in, and waiting about 6-8 weeks (or more). Reasons were going to be cardiac issues & need to conserve energy. I was too strong-willed (prideful?) to accept it. In hindsight, with as bad and far away the student lots were from the buildings, there were plenty of times the disabled placard would have been nice. Walking 1/2 mile in 95F weather with the sun & humidity, carrying a heavy backpack wasn't fun and often left me spent by the time I got to class.

In some ways I'm glad I didn't go for it though -- Florida's definitions for revoking a driver's license due to medical reasons is quite wide, and the last thing I need is the DMV getting nosy. In Florida, if you've had ANY dizziness, loss of consciousness, sleep problems, or any other myriad of conditions over the past two years, it's an automatic denial / medical review. Not to mention the medical review board is notoriously slow. I've heard a medical review can take 6-12 months.

I'd rather keep my license and make the decision to not drive, or postpone it and rest, when I'm not feeling well -- a decision I've made plenty of times. I don't see my situation as any different than anyone else's. Even people who are perfectly healthy have times when they shouldn't be driving, like having the flu (delayed reaction time, impaired senses), after having an alcoholic drink, too tired, too emotional, too distracted, or because of some med they're taking. If anything, I'm a bit paranoid about how my body's doing and will call it off long before most people would. I end up driving ~20,000-25,000 miles a year and just factor in extra rest time to make sure I have time for whatever my body needs first.

It depends how you define what a "good" or "normal" blood pressure is.

When I first started down the POTS/NCS journey, the cardiologists I saw tried all sorts of medications to make my body act "normal". The medications made the numbers look pretty, but I felt *******. After awhile of playing med roulette, I decided to skip them for a week and felt quite a bit better. Numbers looked bad, but I felt (relatively) good. The ultimate conclusion was that my body's normal isn't the same as the textbook normal. It was only then that I remembered what a frustrated hospital Dr told me after I woke up from a coma due to anorexia -- "Your body may look the same, but it'll never run the same way again. You might as well throw out the textbook because your body obviously hasn't ever read it." Probably the wisest and most accurate words ever spoken to a Dr to me.

I am curious if anyone else experiences something like this, where they find their body seems to work better at non-textbook normal values. Mine feels better on the low end of things, but it's a narrow window between low/feeling good and too low/feeling rough.

I vary based on how I'm doing. If I'm feeling rough I've been told I actually look gray. Full of colour when feeling good.

POTS was secondary to anorexia nervosa for me. Managed to cure the anorexia, but the POTS symptoms remained. In short, getting down to a BMI of 11 wrecked my body's organs and regulatory systems and they've never fully recovered.

I think it depends how you define full recovery. In terms of functioning and living life? Yes, absolutely. As far as 100% seeing every single symptom go away, probably not as much, but I do think it's possible to have them reduced down to where they're not interfering with your life.

For me, I've had times when I was practically bedridden but was too stubborn to stay in bed, even if it meant immediately collapsing on the floor as soon as I tried to get out of bed. Due to this and GI issues, there was a period of time where I literally was living on the bathroom floor -- it didn't make sense for me to be anywhere else.

Exercise and spending time standing up has made the biggest improvements for me. I know for some this seems like a monumental challenge, but it can be done. Even just standing up for 1 minute at a time helps. My first tilt table test had me passed out in <5 minutes, the fastest they'd ever seen. Last night I was standing in a parking lot chatting with a few friends for 45 minutes straight with no symptoms.

I spent the better portion of this year (9+ months) battling Clostridium difficle (and idiot, cruel doctors) and still mostly worked and tried to function the whole time. I won't say I was functioning at 100%, BUT I was functioning a heck of a lot better than most "normal" people with C.diff do -- so much so that two GI doctors I saw refused to believe I had C.diff because I was still functioning. I just wouldn't eat all day. When I'd get home, I'd eat, get sick, and eventually pass out on the floor or if I was lucky I'd find my way to bed. I also was trying all sorts of digestive enzymes and probiotics which lessened the impact.

Still, I work a job where I'm on the road the majority of the time. I've not done the calculations for this year, but last year I was on the road for ~220 nights. I've even started climbing towers again and have another radio tower climb scheduled this week to repair a failing antenna & radio array (body willing). I still drive ~500 miles a week.

That said, I'm not symptom-free (yet). On Friday, I was very symptomatic. So much so that my SO made me wear my helmet. I ended up passing out twice. Still, I'm having fewer & fewer days where the symptoms are interfering.

For me, it's been an exercise in being flexible and maximizing my time when I can. I know my body's not going to be reliable 100% of the time, so when I'm feeling well I try to get everything I can done so I will be able to have some down time when my body's not cooperating.

I saw someone mention mind over matter. I don't think you can will this to go away, BUT attitude does matter. I've never accepted I'm sick. It's part of the reason I am symptomatic at times -- I use every ounce of energy out I can get from this body. I'm not willing to let this stop me.

I worked at a cancer center whilst in university and saw a wide variety of reactions to cancer from the patients and their families. Those who had the best outcomes had the best attitudes. They were the ones who remained themselves throughout everything. They were the ones who refused to be called cancer patients or even cancer survivors -- they were still the same person they always were. Cancer was just a speed bump or detour on their journey.

Nope, no flu shots for me. If you pull the actual study data, they're barely better than 50/50. There's been a few years where flu shots (statistically) put you at a higher risk of getting the flu, although no one has studied what the actual mechanism was that year which caused those who got flu shots to be at a higher risk of flu.

There's been a few times over the years where I did get them but it was more to give my body's immune system something else to beat up rather than beating up me. Been a good 6+ years since I've had one and given the data and the new adjuvants used in them, I don't see myself taking a vaccine for anything any time soon.