spinner

Get a cheap oximeter to see what your HR is doing. And get your bp checked WHEN its happening.--possible?

You may "feel" palpitations, but it might be something else? Hopefully the cardio can help.

Other questions: are you still using caffeine? Food allergies such as gluten or dairy? Potassium level ok?

Not eating processed foods with MSG?

In my experience these ALL cause problems.

Im baffled as to why people with DA dont universally swim, even if there is some hardship involved such as driving further to a pool.

Its a weightless aerobic excercise and addresses all POTS obstacles such as pooling, constriction, etc.

It also keeps you cool instead of overheating.

And the sequential rythmic breathing seems to regulate heartbeat and BP.

In other words, its the perfect excercise for POTS.

Ive become acquainted wiht the word SUDDEN. Anything SUDDEN or EXTREME is bad in general. I can walk at a pace, but if i climb a hill or speed up, mayhem. Have no idea why. Cannot exert and call it exertion syndrome. It must be the vagus

quotient, or constriction/BP. The body is not compensating for that sudden strain.

I hate to say this, but there may be truth to the idea that you have to full faint out before he takes notice. Doctors hear extreme stuff ALL DAY. They get immune from real issues. To them they are only symptoms, to be proven by tests. If no positive test, no concern. WE are our own physicians in the sense that nobody knows how we feel like we do.

i definitely improved when i started sweating normally aagain. Staying fit is essential and swimming is perfect for several reasons. Anyone with POTS can benefit from swimming it would seem, the pressure is miraculous. Also the cool pressure seems to help with constriction and maybe pooling, and the regular breathing sequence seeems to improve breathing for some.

I hate that your experiencing this, and I can relate.

I have some sort of transition issues every night. The breathing issues in the transition go from spells of being mild to major. When it gets bad, I can go days without sleep. It seams that the more tired I get, the worse it gets. I have trouble with my transition to being awake also.

There is a lot of physiological changes that happen in the transition from wake to sleep, and sleep to wake. It does not surprise me that those of us with autonomic dysfunction would also have these problems.

Like yourself, just getting real tired can trigger it.

It seams that autonomic problems and sleep transition is not widely understood. It is difficult to get it identified by a professional.

I suspect that some of us have mini panic attacks in the transition. Not that we emotionally panic, but the body does. Also there is a type of transition sleep apnea, that is central in nature. We enter a period of subdued breathing drive, and our CO2 builds up. We are startled awake, with a need to deep breath. The deep breathing can lead to hyperventilation. The deep breathing is a natural response to the higher CO2 levels.

Bipap with O2 helps with this type of apnea. The problem for me has been getting it diagnosed. I have never been able to get to a sleep study while in a flare. A home study might be in order for the next one. We will see.

Investigate these things for yourself, and discuss this with a doctor. If you have the problem every day, you may be able to present during a study. It would be helpful to find a sleep specialist that is familiar with autonomic dysfunction. Make sure they take you seriously. You might be able to get some help with this. I know that I am not giving up. It is an awful symptom to have.

If you do not have one, get a oximeter. It will be a way for you to check it when you want to. I have found that my O2 is regularly dipping to 90 in my sleep, but they will not call that anything until it gets to 88.

I am sorry for the rambling post. I have been trying to figure this out myself.

Good theory. I wonder if there are issues with impulses to breathing muscles during this phase. Also if electrolytes are balanced, and potassium and magnesium is good. Sleep position is important also, as well as confirming no apnea. Not just standard apnea, but a need fo bilevel, snoring, and if you are stopping breathing or if thats just a sensation.

I try to work but 8 hours of stress is too much. I can handle about 6 hours, or 8 hours of "easy" work with no real exertion.

Sleep is a huge issue. Go to work tired, leave exhausted and barely able to function.

I forgot to add that direct sunlight was a nightmare then. I suspected it had something to do with vasoconstriction.

I stayed out of it for a LONG time, and i used vitamin d to compensate.

Dont ever be sorry, because it is what it is. We all question ourselves sometimes---is this really happening to me? This doesnt make any sense.

Aout 1.6 to 2.0 years ago i started burning up and saw a physician who had worked for national institutes of health here in US. He was more of a mast cell guy than POTS or DA per se. He immediately remarked, "youre not sweating". He warned me that i could potentially be suffering "anhidrosis of sympathetic nervous system".

It got scary then because it was winter here and one time someone lit a fire and i nearly fainted straight out (we've all been there too).

He confirmed a negative on mast cell (surprised) and my next symptom was that i was never thirsty. In the wake of this, i got severely dehydrated one time, and my heart rate slowed down to dangerously low--i was hallucinating. STAY HYDRATED no matter how you feel. Ended up in ER late at night while traveling---totally hallucinating and barely made it there. I had no concept of being thirsty and wasnt smart enough to keep drinking wate ranyway, because all my life i'd used water for thirst only.

He prescribed pilocarpine to see if i COULD sweat, which i could, but it was very little. Flash forward six months and i finally got the POTS sweat test cleveland clinic and was "diminished". Actually to me, it was major because it took me about 30 min to start sweating much at all in a 115 degree box.

Between then and now i got a bipap machine rather than cpap, and its improved the damage done to my sympathetic/autonomic nervous system somewhat, and today, i sweat normally, get thirsty, and can "cope" with heat (although i moved north to escape the 100 degree junk. Its very humid here though.

It strikes me that these nervous system disorders have symptoms that can come and go as you "heal" at times. And I know your fear---theres nothing more scary than not being to do anything for fear of overheating. People have no idea what that is like.

So do a lot of research on "heat intolerance". I also have "exertion intolerance" and this has not improved much.

Research is your best friend because these things are highly individualized. Check out periodic paralysis (potassium) too. Use low sugar sports energy electrolytes. Consider a sweat test. Have you checked mast cell? PM me if i can help. You can overcome this but like everything else you gotta be armed with information

http://stoppotsvirginia.blogspot.com/2012/08/hydration-salt-and-peeing-renin.html

"""""""Facilitates norepinephrine (a type of adrenaline) release from sympathetic nerve endings and inhibits norepinephrine re-uptake by nerve endings (prevents it from being reabsorbed), thereby enhancing sympathetic adrenergic function (again - helps keep your veins squeezing to circulate blood, and keeps levels of adrenalin normal in your system. So too much Angiotensin II may INCREASE norepinepherine, which the hyperPOTS group, and many POTS people in general have higher levels

I retrained my sleep position from strictly back to side and stomach. Took 6 months. Now i revert there naturally.

When i go on back, i get reflux problems. Doesnt affect DA, however can make apnea worse, although im on bipap which prevents problems.

Strange. I had sudden onset and was a tennis player. Havnt hit a ball since, because tennis requires extreme bursts of sudden blood pressure spikes. Immediate flare following.

Ditto, can weight lift. Pick up fairly heavy objects standing in place and lift.

BUT, cannot lift something heavy and CARRY it--in particular upstairs. Such as a 50 pound suitcase. Again, another 24 hour flare.

*one day at work we went to the warehouse unexpectedly and climbed 3 flights of stairs. Immediate flare-like symptoms. Lymph nodes rock hard, dizzy, weak, out of body experience, short of breath. Strange given that i walk SLOWLY 4 miles a day. Im not out of shape, just cannot "suddenly" spike my BP.

Anyone else? Any meds that have helped? Blood vessel articles?

The apnea meter was done by Mayo, separate. A night that I slept well.

The sleep study will be discussed with a local pulmonologist tomorrow. I think that she will be my best bet for figuring this out. She understands autonomic dysfunction and is taking me seriously. She also understands this is a come and go problem for me. When I flare again, she will get me right in for another study. This last flare involved me waiting for the referral then the appointment then the study. Too much time passed and it was not caught.

She went as far as to do an arterial blood draw before the study and have someone there to draw when I woke up. She wanted to do more than measure CO2 levels during sleep.

She believes it is similar to what you mentioned at the beginning of this thread/poll, but not certain exactly what is involved. In short the nerve involvement as a result of the neuropathy is sending faulty signals leading to a reduced breathing drive. Then leading to higher CO2 levels. Supposedly the reason I wake up with the labored breathing. That my body is trying to reduce the CO2 levels, which can lead to hyperventilation and starting the problem all over again.

I have these spells when I am awake to, but they are almost always when I am especially relaxed. Either soon after I wake up or in when I am especially tired during the day.

My complaint is different than the general shortness of breath that I experience. It is as if a switch is made and I enter another breathing mode altogether. When I am flaring I cannot seam to relax to sleep without entering this pattern. I can go days without real sleep.

We are going to try the sleep test again when I flare again. What she wants is to have enough to information to get the insurance company to pay for a BiPap (sp?) with oxygen. She thinks this will help me through the transition and allow me to sleep. I will share the results from the sleep study after tomorrow's appointment.

I intend to push this issue until it is resolved. It gives me too much grief not to. When it is bad, it is real bad.

Very sorry youre dealing with this. You are not alone.

Worst case scenario you can buy your own bipap on craigs or elsewhere. cpaptalk.com is the best resource for

such an emergency.

Sleep tests are expensive and dont always reveal whats happening in one night. Many people have no other option

but to learn how to treat themselves quite frankly.

I basically prescribed my own jump from cpap to BIPAP therapy.

Modern sleep medicine is not that detailed----ive gotten more help by going to

cpaptalk.com

They know more than most sleep docs there.

A few of us diagnosed our own bipap. We set our own pressures (which is not illegal but you

have to do carefully).

An overlooked problem are THROAT muscles collapsing causing exhilatory vibratory snore. NOT

tongue obstruction.

Most snoring is caused by EXHALATION not inhalation.

A bipap will prevent throat muscle collapse with constant pressure.

Honestly, excpet for the mildest case, i'd always consider a bipap to rule out snoring. Central

apnea is less common, but periodic breathing is a problem for many.

IN severe cases a VPAP machine can prevent centrals.

For further research:

1. inflammation (see dr. hyman)

2. Allergies onset

3. leaky gut syndrome

4. esophogeal reflux

5. blood vessel restriction

6. sleep disorder setting off asthma

7. constricted airway or anaphylactic

8. Wheat (see modern wheat and dr. davis) and "wheat belly"

9. see breathing techniques (deep diaphragm breathing)

10. Consider keeping your environment cool, or humidifed or not

11. a possible environmental allergen (mold)

12. blood disorder, anemia,

13. blood vessel constriction causing asthma

14. a more severe reaction to excitotoxins (MSG , aspartame, do you drink diet soda?)

---processed foods? Leaky gut?

Blood pooling, or vessell constriction problems? Or sodium probems? Or inflammation problems? Or allergic problems? Quite complicated.

My air hunger feels like I can breathe just fine, sometimes I'm even panting like I've been exercising, but it just doesn't feel like I'm getting enough oxygen. I also feel like I have to take deeper breaths. The vessels in my neck always feel constricted during these times and my chest feels heavy although I do not test positive for asthma and I can fully inflate and deflate my lungs. Mine generally happens when I'm going up steps, walking up even a slight incline, or if I talk for too long at one time. I don't actually get out oof breath on the recumbent bike or doing the core strengthening exercises my PT has me doing on my back (slightly elevated). This leads me to believe that my issue is truly based on my blood pooling issues which are significant (even had lower extremity dopler to prove severe venous insufficiency. )

Air hunger is often called anxiety but in my long experience with it is an autoimmune inflammation

response caused either by an ALLERGIC response (your body is suddenly allergic to milk or more likely excitotoxins like MSG--in most processed foods and WHEAT ---see 'wheatbelly"),

.....the results of sleep disorders

...the results of acid refluxes including esophogeal reflux

.....or an antibody

For research see Dr. Hyman, Dr. Cheney and fibromyalgia, anything on celiac, anything

on MSG and excitotoxins (never drink diet soda or consume MSG), milk onset allergy,

and especially LEAKY GUT information (Dr. Hyman). The key is to keep a close diary of causation imediately prior to onset of air hunger. What set it off?

It could simply be inflammation in your body, or it could be the wendys chili you ate 12 hours before.

See, theyre right in a way. Your' body is extremely anxious although you have no psychological

disorders.

Anytime you are sick your body is anxious. It is telling you it is sick because it doesnt work the

same way it has for your whole life.

I got sick when i was 50. This is a very common age to experience a first serious medical

issue. Naturally they told me i was "anxious" when i couldnt breathe right (palpitations, pvc's,

neurological inflammation, sleep apnea, sudden onset, extreme heat/exertion sickness, etc).

I WAS anxious. But i was also sick. I knew exactly how my body worked and i knew something was wrong with it.

The diagnosis is pure **. WHY are you sick and therfore anxious? Its the same with "panic attacks". Its not that you are panicking psychologically. Your body is essentially going into a form of shock. An autoimmune response. And autoimmunity is fairly far along in terms of actual sickness.

Ive seen Dr. Jaeger and Dr. Shields (neurology).

I dont seem to have classic orthostatic intolerance but most symptoms of POTS and several

other conditions including sleep apnea.

Dr. Shields uncovered several high antibody issues. I also did the sweat test. Took me

a long time to start sweating.

My conclusions are that your sympathetic nervous system can be damaged by lots of things--

including untreated apnea, but also excitotoxicity untreated (glutamine) which damages LOTS

of body central functions.

Onset can apparently be caused by apnea, but also obviously childbirth, leaky gut syndrome,

inflammation, etc.

Ive found that Johns Hopkins has linked all of these things.

I have "sudden onset" like many of you but many concurrent problems. Could have been

caused also by heavy antibiotics.

My worst symptoms are breathing problems and exertion and heat intolerance.

I went from being a tennis player in 90 degree heat to struggling to walk up stairs overnight.

Obviously this is in conjunction with moving slow and taking it easy physically in the morning. And staying hydrated.

But it seems that creating blood pooling or vagus problems is not smart early on

All the "experts" recommend multiple small nutritious meals--particularly to start your day to establish

consistent blood sugar.

I do MUCH better when I skip food until midafternoon.

My energy level is good. The second I eat it plunges.

Anyone else?

Anyone ever done a longer fast and seen longterm results?

I'd love to see them make a correlation to leaky gut syndrome (intestinal permeability) and hormonal issues (thyroid, adrenal) as well.

I trained myself to take a cold or lukewarm shower.

Basically you don't stand under the stream, you wash one area at a time

no problems

1. Sometimes not eating prevent blood pooling and autoimmune triggers?

2. Sometimes keeping MOVING makes us feel better instead of sitting around

I feel TERRIBLE for you. And we don't give "advice" here. But I can share my story.

This is a constant issue with me and here is what ive done to MANAGE this as best I can

1. clonapin has helped me overcome these scary episodes (yes its a benzo)

2. LEAKY GUT SYNDROME/inflammation, food allergies is a progressive autoimmune disorder related to dyspnea--short of breath.

KEEP A JOURNAL. WHEN do you get out of breath? Have you fasted for a day? Seen results?

Your blood could be pooling or your body is having a continuous loop autoimmune response CAUSING the dyspnea after eating,

exerting, overheating, etc.

PM me if you like, this has to be fought and managed very meticulously.