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Heat literaly controls my entire life. If i go into a warm building i have to get out no matter what. I cant work in any kind of heat above 70. I cant go to church if its warm. I cant workout in the heat. I usually swim. I cant go to social events if its going to be warm. I live for the winters, but even then people crank up natural gas furnaces inside so id rather be outside or at home where i keep the temp at 65 or below. Nobody understands this of course.

I guess I live life "deliberately". Insteaad of just doing what i feel like doing, I think it through carefully. What do i have to accomplish today? How much strength will that take? What time should i eat? How hot will it be? (i suddenly like the weather channel). How much have i had to drink? If im excercising how hot is it? Should i swim instead? If im walking i always walk uphill in case i need to walk back (downhill). If im biking i make sure i can coast home if needed. I rarely make plans ahead, im spontaneous in case i dont feel well that day. People dont understand. I NEVER go anywhere without my satchel that contains gatorade, aspirin, and clonapin. And I rarely go anywhere thats more than a half hour from some sort of medical facility in case i go into a nasty flare or event that could potentially cause problems. I dont fly anymore. In short, everything is thought through, but i dont let anything but the heat stop me from doing what i want to do.

Another great topic. I have sleep apnea, and getting out of a regular routine can definitely make that worse. But with chronic illness we get exhausted and cant fight off sleep. It can be a catch 22. Id have to say that napping can make my apnea worse, but not DA. It seems like REM sleep heals worsening flares.

Ryan, this is a brutal topic for a lot of us who have been to ER with out of control palpitations, debilitating weakness, or shortness of breath. During those times none of us feel like we can function whatsoever. Even so, hospitals are extremely reluctant to give up a bed to anyone who is not in some sort of "grave" situation that is life threatening. I was admitted to a hospital for two days last year but thats the only time, but ive been to ER probably 7 times in the last 2.5 years. Several times ive gone to ER and just sat in the waiting room hoping i didnt faint and just waited it out. Lol, ive sat there reading a magazine and other people have wondered why, but ive just said "im making sure i dont pass out" or whatever. I did that at Cleveland Clinic once during a nasty flare and they more or less insisted i get checked in (they have an awesome ER system) but alas nothing "life threatening" of course. Theres one hospital im aware of that brilliantly has set up a BP machine in the waiting room and they'll check your BP for free. Also you can get 02 if you need it. More oxygen never hurt anything. I have an oxygen concentrator i bought off craigs. Use it occasionally but make sure obviously i dont overdo it at a high level. It helps when im "struggling to breathe" (the politically correct expression, because if you go into ER and your oximetry is 99 percent theyre going to tell you youre not having breathing problems, missing the point entirely that youre struggling to breathe, even if youre getting enough 02. Breathing problems are something altogether different. You can say "im having trouble breathing" but doctors only go by oximetry and heartbeat and EKG etc. So unless they suspect anaphylaxis or serious arrythmia etc they'll observe you and release you. Theyre also checking for bloodwork and hydration. And you can always get hit up with the "patient has anxiety" diagnosis when they have no idea what else to say. Its a catch 22 but if you genuinely feel like you need to stay overnight I'll be honest that I'd tell them that you'd been passing out or something equally serious. Otherwise they might write down "panic attack" if they dont observe your heart or BP going wild. I have continual bradycardia but ive never been admitted for it. Have you tried clonapin? Gatorade? Magnesium? D3? Most everyone has something that smooths them out during a crisis. But consider the idea of simply going to ER waiting room if youre feeling awful and hanging until it passes. Better to be there than not if it gets worse, and if passes you can simply head home and save a lot of money. My two cents.

Great question, but nobody can answer this for you other than your doctor since obviously no medical advice is given on here. I suspect you might get ten different personal opinions from 10 different people. Ive noticed that excercise is absolutely essential for some to prevent DA from getting worse or from making a personal functionally disabled. On the other hand your body will tell you end of day if you did too much I suppose by a nervous/ cns, sympathetic, automatic, peripheral, whatever nervous system overload. For me that feels like the aftermath of a seriously exhausting heat illness of some kind. I can only say for myself i pace myself with excercise but i keep at it. I push myself occasionally but its more along the lines of increased time rather than bumping my BP to extreme levels. I avoid heat obsessively and hydrate myself obsessively. I also have a pulse oximeter so i can track whats going on. Mostly I walk, but i also bike and especially swim. But its at a much lower extremity than my previous tennis days. Im the turtle, not the hare these days. But ive found I enjoy a slow steady 1 hour walk in the cool of the night or a 45 minute steady swim.

Yeah, there are plus sides. One is not taking our health for granted any more. And like you said you weed out the superficial so called friends real quick. I dont know how many times ive been told BUT YOU LOOK FINE. For those idiots to be honest the only way they'll ever understand is if they get struck down in the prime of life and then realize what total **** they made of themselves making snap judgements regarding other peoples misfortunes.

Obviously we'd all say to seek the best medical treatment you can find in a major health system such as mayo or cleveland clinic. The second thing is keep a diary of what symptoms are happening WHEN, and after WHAT. For example, food allergies, and in particular MSG and ASPARTAME act like poisons in many people. For me personally, when i ingest MSG (and its in almost everything processed) i get many of the symptoms yours describing-- breathing problems, extremities, vertigo, etc. Finally, keep going on forums and correlating symptoms. You may want to be tested for Lyme, thyroid, adrenal, metals, deficiencies, leaky gut syndrome, and a host of other neurological or cardiac considerations.

How do you experience time now that you're dealing with a chronic illness? For me its weird. I work much fewer hours so I have a lot of time space to fill and that can seem to drag. Also, just dealing with the doctors, records, supplements, lifestyle can be laborious and boring and infuriating which slows things down. On the other hand, giant chunks of time can seem to fly by because I dont mark the days and weeks the same way i used to according to holidays, trips, and schedules. Sometimes I forget what day it is. It all blends together. I had sudden onset 2.5 years ago and I cant tell you if the time has gone by faster or slower than normal. Just different. Its almost like I measure my days by how effectively Im preventing flares as much as anything else. Also obviously theres no such thing as a wild stresful day anymore because i just cant live that way. I cant run from one thing to the next. I deal with one thing at a time. No multitasking. Ive learned to appreciate the simple things in life a lot more. A cool fall day. Being able to do a 3 mile hike at a slow pace. A much quieter life because loud noises drive me nuts. And much less time in crowds at places like malls, busy restaurants, or big family gatherings because i avoid them. I prefer to hang out with 1 person at a time.

May I ask what breathing problems you have and what triggers them? Ive been dealing with flares for 2.5 years, and even now im learning how to deal with/manage/prevent them. One of the worst, i learned recently, is MSG, and its basically a flavor enhancer in almost EVERY processed food you can think of hiding under all kinds of names. I mention it because i know it causes all kinds of breathing problems by itself. As far as new symptoms, my most debilitating one that was later onset is heat intolerance. I could handle some amount of heat before but now i take a lot f care not to get overheated whatsoever. My greatest concern is getting caught in traffic on a hot day, or the electricity going out--well i could sleep in the basement i guess.

i have normal ekg's but bradycardia most of the time. The doctors dont even bring it up. I read it on the med records.

No,. but the spinning vertigo in my head lasts up to 3 hours if I get real coffee. When you drink decaf, and you buy at gas station, you WILL eventually get the real stuff because some clerk didnt read the bag right. Thats why i never go anywhere without a clonapin to handle something like that.

JKN, i never liked the heat, but i could endure it before. Now that SC humidity is a blast furnace. Being in Ohio---im thankful every day because i know what thats like. I think of like a giant sauna. I know it will get hotter here soon. Its been up around 80 several times, but it is NOTHING like Columbia SC. To be honest I cannot wait until October 1 or so. I get seriously excited when it turns cold. Its like winning the lottery, those fall days when it goes down in the low 50's. My energy level spikes.

Sounds good if it works for you. I have no idea how cops/firemen can stand the heat wearing all that stuff. As a guy, im probably too clumsy to deal with all that, although its probably easier to do than it looks.

Luckily I feel vertigo coming on way ahead of time, so i wouldnt be in the pool if it was bad. There doesnt seem to be a good answer to stayiiing awake during a flare for me because i cant drink coffee. The answer for most people is a caffeine jolt and getting up and moving. But with this kind of neurology not possible often times. Luckily i have a hobby of studying theology which keeps my interest during flares.

yeah, we have to be careful to observe exactly how were' feeling on a given day as to what we attempt. I never PUSH myself like the old days. I remember football practice as a kid, they wouldnt even allow us to drink water, you had to be tough. But anyone with overheating issues learns real fast being tough means going horizontal. Whether syncope or just a flare and the bed. Before I excercise i make sure i feel strong enough. If I feel hot the first ten minutes i stop in the summer. If I ride a bike i ride up hill always so i can coast back home. I make sure to swim in pools that has a lower water temperature. And always hydrate before any of it. If Im traveling and get a little overheated a freezing couple of gatorades helps.

Yeah, i go overboard now and again and pay for it. Usually in the form of a giant bowl of ice cream, some kind of pasta that sets me off (kraft macaroni cheese has MSG in it), or sausage sandwich. Always go into a fog for 24 hours. The decaf needs to go because it simply messes with my gut, whch in turn messes with my nervous system. But ive been drinking it in the mornings since college, thats a long time habit. I just dont feel awake until i have a cup.

The damage to my various nervous systems was caused by low oximetry in sleep apnea. Now i cannot tolerate hardly any serious stress. When i have a flare my head feels like glass. Any sharp or rythmic noise and im in bed. And I have trouble working more than about 6 hours. Run down like the energizer bunny.

Im not aware of nutribullet. Can you explain the benefits.

Ive relocated to Ohio from South Carolina. IN SC it gets to be high nineties for a few months. Absolutely unbearable. I remember last summer trying to mow the lawn and nearly keeling over with syncope. It was probably insanely dangerous. I cannot stand being inside with a temp above 72. I prefer it around 65 or even lower. I can walk outside even if it approaches 80 as long as theres a light breeze and no direct sun. My body can cool itself off but of course i hyper-hydrate and dont get too far from the house. The AC broke in my SAAB and im trying to save money now to start a tiny business so im not gonna fix it, just looking to september. The people in Ohio all think Im nuts because they all want to move to SC and i love cloudy rainy days. I used to not sweat, but hyper hydration along with a scrip for pilocarpine seemed to have jump started my sympathetic nervous system. Im VERY thankful for that. Not sweating is completely debilitating because its dangerous.

Blue, thats for sure. Cold water is magical. I think it lowers the inner core temp, which is under rated with neurological nervous sytem isssues. Wouldnt surprise me either that the compression helps. The problem is, when im flaring I just cant get the strength to move. And ill admit it, im afraid of getting into a pool and not being able to drag myself out or passing out in there. Might be embarassing being dragged out of there and making a big scene. I usually just stay in bed, but i cannot stay awake in bed if im flaring.

Im wondering how everybody on here deals with their caffeine addiction? I elminated regular coffee in favor of one very big decaf from circle K each morning. Now im considering dumping that, because it seems to agitate my CNS, heartbeat (even that small amount of caffeine) and definitely whacks out my leaky gut symptoms and seems to draw blood to my abdomen. The kicker is that it heats my core temp up (im guessing) which causes further problems. Ive given up eggs, milk, MSG, any alcohol, but dang it, NOT my decaf!! I never drink soda, but then again, im not tempted by it.

I use it all salt, magnesium, l lysein, antihistamines, and potassium. Gatorade when im feeling rough in the morning.

If the symptoms are distressing considering sampling klonapin. Many are afraid of this drug but ive been on it 2.5 years as needed. Something about binding itself to nerve endings. It DEFINITELY helps me breathe better anyway. I use it as needed. The swimming is something EVERYONE should try. I personally believe it helps regulate the autonomic or sympathetic nervous systems.

The advanced testing sound crucial for many to make progress. I wonder if others might benefit from an oxygen concentrator (can buy on craigs list) or a CPAP breathing machine. There is a machine called an S9 by RESMED that literally helps you breathe in and out. It anticipates when you begin to inhale and gives you a boost. I think it could help many here. You can add 02 to it if needed. Its also important to breathe COLD air, without too much humidification. Not dry, but water soaked air is hard to breathe. Think of a sauna. Even a fan will help many. They also have mini ventilators or VPAP type machines. I think other causes can be food allergies related to nervous system breakdown. Anything with MSG is really bad, as well as histamine. Most of our food is saturated with MSG. Or others drink aspartame sweetener. THey BOTH interfere with breathing giving anaphylaxis type symptoms. Its in everything. Spaghetti sauce, KFC chicken, soup, salad dressings, sausage, ravioli, and hundreds of others. You HAVE to learn to read labels. Avoid any processed foods. Others are allergic to milk, eggs, etc without knowing it. Theyre actually suffering respiratory allergic reactions as much as DA issues i think. Finally, SWIMMING is a huge help to me personally, Its antigravity aerobics and it regulates my breathing and lowers my internal body temp. Id swim twice a day if i could. You cant believe it until you've tried it. I swim an hour a day many days.

POWER ADE ZERO OR DR. OZ SEA SALT, GUAVA, POTASSIUM BANANAS, SWEET POTATOES