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Wow, thats tough. Ive been to ER more times than for the entire rest of my life for everything else.

I suffer from the opposite, low HR, bradycardia.

I carry a pulsometer. I use salt to speed it up at times.

On the plus side, it you go into ER with a pulse around 50 or lower you go right in.

I hope they can find a way to manage you so that you can avoid this. The ER is not a place for

any diagnoses. They just stabilize you basically. Most doctors know dysautonomia but they really

dont know how to treat it unless you get a neurologist on staff there.

We all seem to suffer through the summer here. October is my best friend.

Read the ingredients carefully----most soups are loaded with MSG or high fructose corn syrup.

Beef broth might be a start. Oatmeal, pudding, apple sauce much like liquid diet.

Smoothies: yogurt, fruit, ice, wheat germ or flax seed.

Ensure or Boost im pretty sure has lots of protein as well.

anyone know if licorice can cause a HOT feeling which doesnt show up in regular temperature checks

Sounds like the condition i was checked for laryngeal reflux. Different than regular gerd? I raise the bed to sleep in. Also have sleep apnea

which worsens it. Can cause shortness of breath.

Apparently the prescription strenth laranzapol reflux med is much better than OTC.

Im suffering mightily this summer, despite relocating north from SC. Im limping toward fall.

I cant seem to function in anything above 72-75. Humidity is horrible. AC running 24/7.

Swimming is what makes me feel normal at least for that hour a day.

Nausea has been worse lately, constant companion.

Luckily i dont do syncope, pass out, but i come close. I dont use the inhalers, i pretty much have my own route, using

02 when needed and klonopin.

I cant really imagine that passing out stuff---i hope you lay down before it comes on!

Ive only been recorded with serious tach a few times, and out of control bp or heartrate similar. I dont have the orthostatic symptoms that

are classic.

I have everything else

-extreme heat intolerance, short breath, weak, fog, dizzy, syncope, sleep disturbance, disregulation of sympathetic nervous system,

blood pooling, slow stomach content emptying and excercise intolerance in the sense that i cant spike my bp --i have to do slow rythmic excercise so

my tennis days are over.

Cleveland Clinic confirms diminished sweating but not low blood vol. Ive also suffered from low adrenal function at times.

On the positive side, swimming like so many is a miracle worker, because it seems to lower my CORE temp (not recorded temperature) and helps the blood stop pooling, and my veins regulated.

Strangely, bradycardia is a bigger problem, im recorded as going down as low as 44 hpm.

One time, i became delerious while driving and barely made it to hospital where they had to raise my heartbeat.

I have to remain hyper hydrated, and electrolyted. (lol).

I also use klonopin, which seems to be the miracle drug for many of us. It does not give me a buzz nor do i feel hooked on it. I use

it as needed to pull out of a flare.

I use this forum as a tool----to help myself learn from the threads, and to help others by sharing what ive learned.

Its really not to make friends even though i try to be friendly in general, etc.

For some reason, theres more of a friendship emphasis over at the sleep apnea board for guys, which IS dominated

by males.

Good job.

Many of us dont have classic POTS bp/heartbeat problems, so i wonder if we can also share it as dysfunction of the autonomic nervous system in the science of neurology.

I dont consider myself to have POTS because i rarely go into the classic symptoms, but ive got everything else associated with dysautonomia

I havnt even thought of it, but it seems like every clue you can find helps down the road

It seems from reading hundreds of these threads that dyspnea (shortness of breath) in Dysautonomia is frequently the worst symptom if you suffer from it. And we all know that we each develop routines in dealing with sudden onset symptoms of any kind. I'll relate my own situation, please share yours in depth if you can. If theres one thing I've learned ----something you share can make a miraculous difference in another sufferer.

EXPERIENCE It almost always happens suddenly. One second Im fine the next Im in serious air hunger. My first response is to hyperventilate but that only seems to make it worse. My next reaction is to always review the last hour first, and then the last ten hours. I can usually come up with a correlation to the trigger but not always. Naturally the first thought concerns hydration--as much as we try, we all sometimes forget to drink from time to time. If Im in deficit, try to down a PowerADE ZERO immediately or a Dr. Oz homeade gatorade: sea salt, agave, potassium chloride salt mix.

TRIGGER If I had to make an educated guess by percentage: (and I'll bet everyone is different)

1. Heat. 30% As Dr. Grubb has said, DA is essentially a thermostat control problem, not a dysfunction in your heater or air conditioner. The sympathetic or autonomic nervous systems go berserk when your circulation system tries to make an adjustment and fails (constricting arteries, trying to lower blood pressure by increasing heartrate etc) --WEAKNESS onset

2. Food 30%. Blood flow issue related to digestion or leaky gut syndrome---DIZZINESS onset

3. Allergy/Chemical 20% Involving food allergies (mine in order dairy, peanuts, eggs, wheat) and chemicals (deathly allergic to MSG, aspartame) and histamines (even from something like canned fish). I have an Epi Pen but i also carry CHLORTABS from walmart or benadryl. Avoid benadryl if i can because it makes me exhausted.

4. Adrenaline/Stress/Sleeping Problems 10% Working too much, some kind of relationship conflict, or just being run down by not enough sleep or for some of us sleep apnea (either obstructive apneas or centrals---"the brain not signaling your autonomic system to take a breath). This is by far the WORST scenario---waking up gasping for air. Cant call this a DA problem, and yet so many of us have sleep disorders and the literature shows a direct correlation.

5. Excercise Intolerance 10% (sudden spike of blood pressure such as suddenly running up a flight of stairs) I used to play tennis which is nothing but a series of sudden movements followed by rest. Worst sport in the world for POTS. Now i do slow, steady, rythmic movements. Swimming is my daily utopia and stress reliever.

STRATEGY

Immediately take a Klonapin or half of one, 1 or 2 chlortabs, try to not hyperventilate, keep the epi pen handy in case i accidentally ingested something allergic, turn the AC to max (dont usually take a cold shower because im afraid i might pass out in the standing position), lay flat, and sometimes use my oxygen concentrator for 20 minutes with my head elevated on 2 pillows.

In extreme cases prepare to go to ER. On a few occasions have gone into ER, but in several more have sat in the waiting room of the ER (extreme dizziness and weakness) and "wait it out".......often times within an hour im ok again but head straight to bed at first opportunity

Add NIACIN to my list.

Research showed it helped people with anemia but a doc told me it can really

screw you up.

Caution with that one. It made me sick.

The article was interesting, and its "buyer beware" as there doesnt seem to be much info available.

It does give us pause, if we have good 02 saturation, then it was saying adding more can be harmful.

But my own question would be "does the extra 02 help a person struggling to breathe?"

It seems obvious to me from experience with doctors that they go by vitals, and if im at 98 they assume

im not having breathing problems, but THIS IS NOT TRUE.

Pulse oximetry doesnt measure EFFORT.

One time I was in ER and I'd been struggling to breathe for about 10 hours. The 02 helped, but they

discharged me and i went back to struggling.

We cant give medical advice on here for this exact reason. I have sleep apnea alongside DA and the

02 concentrator makes me feel better with about 20 minutes of therapy.

Im willing to take that chance, and i havnt suffered any ill effects that i know of, but once again,

a respiratory therapist is probably the way to go with questions.

They seem to use these hyperbaric chambers for extreme events but whether they'll become

the latest fad (like michael jackson who used to sleep in one) or a dangerous trend .............who knows yet?

I'll share my own horror story. My sister is a nurse who's in charge of the complete employee healthcare of a major hospital.

Her comments about me PUBLICALLY IN FRONT OF FAMILY MEMBERS are that my "aches and pains" are just normal

for a 50 year old man.

Keep in mind i used to be a complete athlete, playing tennis tournaments in 95 degree weather, and playing most every other sport. My "vital signs" are almost elite, a very low heartbeat, and perfect blood pressure usually.

And yet as well all know here, people can be ********. Excuse my language, but nobody knows what youre going through, and the statistics dont tell your story.

We all know what its like trying to function, trying to breathe, trying to walk up a flight of stairs, trying to work, trying to

endure the summer heat, trying to resist the urge to go to the ER when our heart is beating through our chest wall.

At some point I stopped caring what other people thought, including family. My own wife is on record denying that Im as sick

as I say. And yet, for 50 years I was healthy as a horse and know my body and exactly what it can do.

DA put me on notice that i was no longer in charge of my life,---my health was.

I narrowed down my list of so called friends, and i literally laugh off doctors who have no clue. After all, they've

never gone down this path and if they had, it would shut them up so fast they'd be embarassed to be called a

health professional.

Trust your own instincts, and forget everyone else who gets in your way. Get rid of that doctor. He's a fool.

If people dont believe you then do you really need them in your life?

Smoking is a brutal taskmaster, they say its more addictive than heroin.

Sounds like your stress level is through the roof, and its helping you deal with the insanity

of this disorder.

Is there a healthy alternative? Im not into yoga, but i do swim, and the breathing is

beyond therepeutive meditation or whatever.

Its a type of calm where you dont need anything else.

Do you have a link to the definition of a cholinergic crisis?

Id understand that as a dysfunction in your sympathetic nervous system and your unsympathetic.

I have had crises of bradycardia where my pulse rate has gone as low as 44, but that was probably

a combination of dehydration, salt, glucose, arrythmia, and the klonopin im on.

I get very weak and disoriented when that happens. Is the mestinon helping you that much that

the trade off is worth the aggravation of these problems?

Is there a cardiologist who specializes in this near you that you can see ASAP?????

It would seem you need to be closely monitored for awhile, and within easy distance of a good

hospital at this time should you need it.

My two cents.

Corina, a lap belt of good quality will keep you floating near the surface of the water and prevent that heavy

pressure. Also, when i say swimming, i dont mean the all out thing, i mean a slow steady comfortable

movement in antigravity with cold water. Water aerobics or just walking in a shallow pool is just fine f0r many.

I like swimming too and swim on a weekly base at rehab. Though I prefer cooler water (like you mention) I need to be watched over which isn't possible in a normal setting. What I find strange is that when I haven't been able to go for a few weeks I experience a huge pressure when I first get in the water again. It makes me even get out of the pool and try again a few times until my body can handle the pressure. At that point I'm okay again!

This all sounds new age, but theres something to it.

STRESS is your worst enemy, which is what he is saying.

Emotional stress, exhaustion, fear is the worst kind of stress.

And gut depletion destroys your bodies ability to fight stress. ALso adrenal function.

So I found the article interesting. POTS after all is a collection of symptoms with a specific

usually unknown cause.

Gut bacterial disturbance is as much a reasonable prognosis as any other.

I also have the improbably LOW heartrate, normal is about 53, and i have gone as low as 44. Meds obviously can slow you down. As does dehydration. Or a flare.

At the same time ive gone tachy for no reason.

Ive been athletic my whole life, so my HR is naturally low. I keep a pulse oximeter and recommend you get one.

When i check friends HR on it, im shocked that its 75 or even up to 100 which is normal range.

Im often half their HR.

For those it helps temporarily, wonder if its an excitotoxin inhibitor on a short term.

In other words, slows the neuron firing for a bit--as dr. cheney described with FM

research.

Ashley,

I don't usually faint - never fainted since my symptoms started or after the TTT, and in my case this has nothing to do with taking the right meds or using whatever counter-measures to prevent myself from passing out. The fainting during my TTT has a long story behind it and my dr agreed that I have only POTS but no NCS.

I did faint as a kid a couple of times - once during blood work and then I don't recall the circumstances of the other events. Regardless, back then I was told that there was nothing to worry about. They were isolated incidents (years apart) and there are so many reasons for a young girl to faint, most of which are entirely benign.

You should take it really easy after the TTT. The first time around I needed almost a week to recover - fainting is not the most pleasant experience.

Take good care of yourself.

Best,

Alex

Ive never outright fainted either but ive sure come close hundreds of times.

When i was a kid with the swine flu faccination i went down. But it wasnt a classic syncope.

Back then they'd use the old breathe into a bag deal.

hard as it is to get a diganosis like that, we all know its atually a relief to know whats happening!

Happy that you have test result but sad to know that it is Ncs. At least you know what is holding you back and doctors can help you get started on the right track. Keep us posted and go have a nap after that salty meal.

shoot, chest pains are highly subjective right? I mean, when i had sudden onset i FELT those PVC's.

I still get the very rare stabbing left side of heart slight angina but thats only once ever few months.

But even with tachacardia we feel pain in our chest wall. And then with any muscle spasms they

can present with "pain".

Same with anxiety from what i understand. And as far as panic attacks its impossible for all butthe experienced and

a physician to tell the difference between real pain and muscular/anxietal or real angina

yep, sudden onset here too. Carted off in an ambulance while out walking the dog. PVC's.

Most likely made worse by extreme food allergies and a drink. Severe milk allergy. Have never

been the same since that night. Cannot exert and cannot function in temperatures above 75 fr

I have zero tolerance for alcohol. Even a small amount makes me deathly ill. Up until about 8 years ago I would enjoy an occasional beer or glass of wine without any ill effect then almost overnight everything changed but then life as I knew it also changed.

Janet