spinner

Thanks for bringing up this topic. I cant add much to it but i want to study it. Food can either send me to a flare, or it can relieve one coming on. I notice a meal containing processed flour (white) causes serious problems. BORING is best. Oatmeal, fish, turkey burger, bananas, etc. I tend to thrive without problems on a light meal of these.

Im trying to decide on a cooling vest based on easy use, comfort, cost etc. Can you break down how you selected your particular one, what the limitations are, for example do you feel hot/sick in other parts of your body than your abdomen? Do they work for 4 hours or more? What level of heat can they handle? What about direct sunlight? How much of a hassle is wearing the vest?

I understand your concern. What causes more anxiety, the disease or itself we have here or the mental stress from fear? I dont want to say "dont worry" and yet youre a younger guy and a cardio referral is a baseline beginning point for many physicians with these kinds of symptoms. For many with ANS problems they "mimic" other problems just like food allergies "mimic" every other disease. And the docs have to "rule out" heart problems as a sort of first step procedure. Theyre probably looking to rule out any potential arrythmia/congenital defect. If youre an extreme weightlifting then your seriously stressing your body/vascular system/various neurological sysstems/ etc. I personally swim, walk, bike. I gave up tennis 2.5 years ago. Tennis is nothing but a series of explosive sprints followed by rest. Maybe cut back/eliminate caffeine, MSG, aspartame while youre waiting for these tests. Have you researched the effects of these? Theyre staggering for anyone with even borderline problems. And MSG is basically in almost everything processed. Caffeine speeds up your heartbeat. Aspartame is a poison that can be digested. Im sure you'll be ok as they continue seeking out answers. But i'll bet 80 percent of us here have been down the cardiac referral path.

Realistically it would seem any PERSONALLY stressful event to your ANS/immune system or endocrine? could flip that switch. I had "sudden onset" and yet i was an untreated sleep apnea for years. Used to wake up gasping many nights. They call that oximetry plunge. NO doubt that was a shock, and i remember feeling about 2 days a week drained and dizzy. Yet later i developed leaky gut, could have been set off by overdoing a major batch of antibiotics following dental surgery. Which set off extreme food allergies, and then palpitations when i ate those foods. But they pretty much know now that STRESS is the worst thing in the world for you---can cause MS, parkinsons, etc. Just the stress of excitotoxicity (MSG, aspartame, ETC) can set off fibromyalgia. I personally believe any extreme stress can set this off, a death, divorce, failed romance, job, boss, kid, etc.

Man what an Idiot I am. First summer out of South Carolina here in 20+ years and I was sure it would be easier. Instead discovered northern Ohio to an absolute swamp----75 percent humid, no airflow, hot blaring sun instead of "lake effect" clouds, .....in general like living in the bayou in july. Ironically to "compensate" for the cold winters they blast 80 degrees into their homes, hospitals, schools and most buildings in the winter, usually natural gas, which instantly dehydrates you. Im going back to cleveland clinic after them checking my thryoid numbers again, but what meds help anyone? Ive heard of fluorinef, lyrica, potassium, etc. but is there a specific med developed for DA or hypothalmus patients that help prevent vasodilation? Im ready to go the chemical route here. Im also getting a cooling vest finally. September is going to be my best friend. Im the only soul around who loves FREEZING cold and being outside in it. Gatorade, salt, is helping in the meantime but im not going to tough this out anymore because im constantly flaring.

For one thing, many of the symptoms and triggers of POTS and dysautonomia can be brought under control over time and experience. With time comes discernment and perspective. Myself, I have pretty much uncontrolled heat intolerance. Its ridiculous, I get overheated in stuffy 72 degree rooms. And yet, I've relocated to a midwest climate and am enduring the summer, and also swimming in a cold indoor pool every day. The cold antigravity situation is CONTROLLING my worst symptom as is hydration, potassium, plenty of rest, and a host of other things, whereas a terminal disease such as pancreatic cancer cannot really be controlled. In the case of unregulated cardiac events just about everyone here has had them and THOUGHT they were going to die and didnt. We can gain more and more information about controlling them and changing our lifestyle. For some extreme cases it seems prudent to move very close to an outstanding cardiac hospital so that in the rare event of something extreme it would be a quick five minutes to the ER. Personally, Ive actually gone to the ER waiting room many more times than ive actually gone in. And then theres time. Many people simply get better, especially as they learn how to follow what works including the excercise regimens and diet guidelines. I went to Mayo Clinic and i'll never forget them telling me how thankful i should be that i dont have the HOST of problems they were looking for such as ALS and Lupus that would be much worse IMHO.

*dont know about fluorinef or anything else until we try it, frustrating but everythings trial and error *i went through a period where i virtually stopped sweating. Luckily a doc gave me something to initiated perspiration and it seemed to jump start my system. *I dont think people realize how stress is the main universal trigger. Even a desk job..........your adrenaline can pump up and down with the problems and mental activity. Youre also exposed sometimes to loud noises, confrontations, phones, demands, and it can easily send you into a flare, not to mention any kind of traffic commute.

The key to it seems to be controlling all triggers. No heat, no sudden exertion or BP spike. Nothing after a heavy meal, caffeine etc. I do a walk/bike/swim 6 days a week unless im flaring. Its a slow consistent plodding workout, but i love it. I make SURE theres no stress or multi tasking going on. Keep the phone at home. No radio or conversation. Just solitary relaxing event. Consistent, same time,. Swim is best for antigravity and cools your inner core. Also de stresses completely as all muscles are involved.

---anything involving a maximum amount of sudden exertion --anything involving a high level of noise can produce a stress flare in my immune system/nervous system

"sitting at my desk" definitely sounds like a stress trigger. You may not be aware of your level of exertion just sitting there, but my last major flare happened at the end of a work shift. I could feel it coming on. It was also my last Er visit. Could be that your adrenals were working overtime for awhile and you felt ok, but then they bottomed out and couldnt produce any more cortisol. Total crash but it seemed to come out of the blue. You can get a standing order cortisol order from your doc, and go directly to a lab and have blood drawn to see whats happening. Other possibilities could be an excitotoxity from something you ate for lunch? (MSG?), or an electrolyte/potassium/salt/hydration problem showing up. Im going to try to get on fluorinef myself shortly and see if that smooths out these type of electrolyte flares. Meantime gatorade lite can help prevent them. I wonder myself about "triggers". I used to know what would bring on a flare but now, not so sure. I'm with you Spinner - heat is a definite problem. I guess it is because we don't perspire so, we can't cool down like "normal" people. I just am at the point that I think my nervous system is so messed up that just about anything can "trigger" a type of flare. I was sitting at my desk at work today when I suddenly felt like I was going to die - not anxiety - just bottomed-out my blood pressure, ears began ringing loudly, lost the ability to focus my eyes, couldn't talk straight, turned an exquisite shade of pale. I told my co-workers that I was in trouble, popped an extra midodrine, drank a Propel, and waited for my BP to rise enough so I could drive home. I really don't have any idea what triggered this particular flare. These episodes are occurring more frequently and without warning - sometimes lasting days. Go figure.....

Dunno but it can make it unbearable. First time at Cleveland Clinic i caught a cold THREE times in a month. And I never catch colds, and i was using that hand stuff the whole time.

Weird. My first trigger seemed to almost always be sleep apnea triggering me into a nasty flare that left me pretty much unable to move. I was weak and short of breath and felt like somebody had hotwired me to 2000 volts while sleeping, turned it off, and then I'd awoken.---extreme agitation (like drinking 50 cups of coffee) and exhaustion (like pushing my lungs manually in and out to breathe) Later my worst trigger seemed to be food and I was confirmed sudden onset various food allergies including milk cassein, peanuts, and especially MSG and I'll flare into tachychardia, bradychardia,-- and extreme weakness for up to 48 hours. Much worse if I got hold of a heavy flavor additive, it almost made me manic. Who knew Wendys chili was loaded with MSG? Or KFC? Barbecue sauce. Spaghetti sauce? endless Then it was "sudden exertion" where I accidentally spiked my blood pressure/pulse suddenly. Like forgetting not to run up stairs (old habits die hard). Or yanking on the lawn mower cord hard-----immediate bedridden 24 hour flare. I dont even know if this is a "trigger" anymore because i NEVER do any sudden extreme exertion. Now, its HEAT. I thrive in cold or even freezing situations which is why i hit the pool everyday i can. Im almost normal in an antigravity cold situation and can even stress myself like the old days. Its the only time I truly feel completely normal. But the other day a friend asked me to help look for a used car. Naturally with DA heat intolerance in the extreme i looked on weather.com and confirmed it would only be low seventies that morning. We got onto the parking lot and the sun was actually a direct blaze onto the asphalt and within seconds I knew I shouldnt be out there. It was the direct sunlight on my skin (at the same temp Id have been ok in the shade). After nearly ten minutes of that, and nearly going syncope I rushed back to my cars AC, started driving, found two cold gatorades, popped two mega potassium pills with some extra salt, and threw down a clonapin to handle the increasing vertigo. i knew I was in trouble, and sure enough I ended up with flare symptoms for almost 2 days--I'd only go outside after dusk but once again it was almost like my internal wiring had been fried including what I call the empty head sydrome---as if no blood was flowing in there. Weird, Im wondering what my next major trigger is going to be because when I started out it DEFINITELY was not heat. Now heat controls pretty much every minute of every day.

Like everything else in life, a handful are, and the rest are utterly worthless. A better question is- has your illness made you a more empathetic person?

My wife didnt believe I was sick and she is divorcing me against my will. So I guess the answer is no to answer your (sexist) question literally

The ability to adapt and thrive is uniquely human.

Yes, but it comes along with the other symptoms of a flare, not just heat alone. For example, eating white processed flour, and then overheating a bit, and then major problems. Im currently living in Ohio and was doing very very good before this heat wave hit in June. Before then, it was unusually cold and I was humming along fine except for the local propensity to blast natural gas heating in buildings. So now instead of avoiding being inside im basically trapped inside

Yup. I was working regular 9 hour days and then i had a really stressful crazy day. The last hour i had a meltdown i could feel on the way. Barely made it home went to bed. Got up 1 am took a clonapin. Got up 5 am in trouble and ended up in ER. Last time thats happened in a year. Dont forget just about anything can be a significant stressing event in DA From heat, to diet, to family troubles, pain, dehydration, headaches, food allergies. Anything that flares you including your digestive tract can send you into a spiral. For me hitting the bed and hydrating in a cool quiet place is best, sometimes for 24 hours.

I havnt gotten rid of it all yet, but im severely allergic to processed flour. Id love to dump gluten but i only have so much energy to control every aspect of my life.

would anyone add sudden onset of other chronic conditions such as food allergies, leaky gut, extreme reactions to excitotoxins such as msg, aspartame, etc.

Good read. The impact of all the nervous systems is definitely relevant to every kind of symptom.

Thanks, blessings to you all. I suppose they have some expensive test or another that might determine this, but ive been through a hundred of them, and the endo just gave me a monthly megadose for a year. I hadnt been taking them recently because i rarely get into the heat at all, but every now and again i like to put a sweat on and make sure my sympathetic NS is working right and that im sweating (was a problem previously). Well, big mistake, but cant live life in a bubble. The first sign of all this is a sudden immediate cramping in the low extremities apparently. One more activity to avoid unfortunately, but its all a big learning experience what works what doesnt. Im always pushing for a normal life back and a lot of times hit a wall.

I WONDER HOW HE'D DO IN AN ANTIGRAVITY, COOL, PRESSURED ENVIRONMENT SUCH AS A SWIMMING POOL. For me it is the closest time that i ever feel completely normal and refreshed. Even just walking in the water is remarkable.

We talk about heat intolerance here, which is my BIGGEST obstacle to living a normal life. My endocrinologist suspects possible periodic paralysis which is emptying of potassium out of muscles and can be dangerous. Today I decided to walk slowly in the shade for 45 minutes at a slow pace. Im always testing my limits trying to see what i can do. I developed leg cramps, weakness, dizzy, and barely made it home to the AC. Luckily ive got the megadose of potassium from my doc at cleveland clinic. Also drank down a Dr. Oz gatorade homemade, and hydrated. Anyone else dealth with this?

can you explain where you buy the cabbage, what kind, how you juice it, and whether you mix other things with it.

May I ask what specific thing youre afraid of situationally? Passing out? Getting lose? Racing hearbeat? I wonder if effexxor or clonapin might help? Or xanax? Im wondering if you supplement with magnesium, d3, b12, zinc, etc? They also say tryptophan is something natural that helps with this along with deep breathing techniques. Of course im not offering up easy solutions to complex problems.