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Shortness Of Breath: Stopping A Flare From Worsening


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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

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Spinner, Do they give you a breathing treatment or just oxygen when you go the ER? Or something else? I have my own pulmo-aid, but that and the rescue inhaler will just make me more dizzy and doesn't seem to help me to breath. The meds I use for it is Xopenex, which I know isn't as effective as albuterol but Xopenex isn't suppose to increase your heart rate. I generally, eat a chewable vitamin C, drink hot tea, while putting a hot rice pack on my lungs alternating front and back. Sometimes I need to get a warm bath (not too warm). This usually gives me some relief, although I wonder if some day it's just not going to be enough. Curious what they would do for somebody who claims to be not getting enough breath if they are not wheezing.

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Curious what they would do for somebody who claims to be not getting enough breath if they are not wheezing.

They would most likely check you with a pulse oximeter, and probably give you a breathing treatment.

I get minor cases of asthma caused by pollen allergy. I dont wheeze, but tend to cough and gasp. Between fits of coughing and gasping, you wouldn't know I am having a attack. The few times I have went to the er for this, I told them what was happening, what I needed, got the breathing treatment, symptoms resolved and I went on my way. Never had a problem getting treatment for this.

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I go through this a lot, just suddenly "bam." I try to use my yoga techniques for breathing to slow myself from panicking, but sometimes that doesn't work. If I end up with a really cold feeling, I know I'm going to pass out, and there's nothing I can do about that part. When I pass out, according to those around me, I stop breathing for about 20-30 seconds.

Laying down, fan blowing some air at me, give me about an hour or so, and I'm usually good. Foggy, but good.

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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!

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Sometimes I get down before I go out, other times it's been really sudden, and there aint nothing I can do about it. Hence how I ended up on crutches for almost two weeks, because I apparently hit the floor pretty hard and my roommates thought I had broken my hip or dislocated it. When I came to, I asked for some help sitting up because my back was really wrenched, when he started to move me, I screamed.

I'm a little afraid to leave my room, because the house is hardwood and stone, my room is carpet. Already hit it twice this morning, my fault, had to get up quickly, and it didn't work quite as I would have hoped.

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  • 6 years later...

Hi Spinner, I have almost exactly the same breathing problems you describe with very similar triggers. However, even my baseline is a constant state of air-hunger (not being able to get a satisfying breath) with flare ups from the triggers you describe. I also have Hashimoto's and mast cell activation syndrome. Since you posted seven years ago, have you made any progress since then? I take zyrtec and zantac every day, twice a day, and so far, those are the only medications that have helped at all. I used to be a long distance runner and a full time teacher, and now I'm mainly house bound (at the age of just 32). I also have developed severe sensitivity to synthetic fragrances and MANY foods cause me to get severe air hunger (despite the pulse OX  reading 98-100%). My other symptom is flushing in my face that is very painful and feels like my cheeks are burning. Please let me know if you have any more input on what helps. 

All the best,

Sarah

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