Katherine G

On 11/1/2017 at 4:51 AM, Jojo79 said:

I get this breathing issue very badly. If I'm lying flat a while it helps. If I get up in the morning without having drank alot of water I will get it kick in pretty quickly. It feels like from the stomach upwards there is no oxygen and all my body parts from chest up to head are having oxygen squeezed out of them. I absolutely hate this symptom. I believe the bodies ability to pump blood upwards against gravity is impaired in many of our cases and therefore you have less oxygenated blood getting up there quickly enough. I think this was explained to me or I read it. I suffer dramatic bp drops so this makes sense to me. I noticed when i was on 0.2 fludrocortisone I felt like my upper body was much better oxygenated.  The fludro had risen my bp right up. The bad news was that this brought on the most agonising intracranial hypertension.  So this proved the theory that increase in blood pressure and flow up to the head improved my breathing. Sadly for me my head nearly exploded with the pain! 

A leading Professor in the field of autonomics told me not to get up without drinking a full glass of water in the morning and to keep drinking. I was told not to stand still, to fidget and to squeeze a stress ball to trigger the autonomic response and thus aid the blood flow upwards. 

The professor's advice is very interesting.  I was probably dehydrated when I dropped dead on the concrete, and I later found out in the hospital that I was low on potassium so I got a few potassium pills.

On 10/30/2017 at 6:45 PM, Clb75 said:

I had a doctor tell me that shortness of breath happens because blood is not getting to the upper parts of our bodies, including the brain and lungs. 

That is true, but it doesn't sound like dysautonomia.

Hi All

I had an acute episode of dysautonomia Sept. 29 when I passed out on the concrete after work, my very first day at commercial dishwashing which is more intense than you would imagine - lots of stooping, hot steamy air, and uncertainty about where things go.  I felt my lumbar area getting very painful as I was working, and later upon walking away from work trying to breathe as in outer space.  I was hospitalized and the CT of my lumbar spine revealed nothing.  My heart testing was normal as well.

Right now it's excruciating , and I cant help but wonder if the back pain is related somehow to the dysautonomia.  I am still easily out of breath when walking.  Before this episode I was able to walk a mile with groceries in my hands.   I think one aspect of dysautonomia has to do with the inability to tolerate gravity.  That's my theory at least.

The crackdown on opioids is inhumane.  I don't know what I would have to do or say in order to get some, or at least some prednisone.  I ordered some hemp CBD oil in a desperate attempt  at pain relief.

Thanks for hearing me out.  I would appreciate any suggestions about the back pain and breathlessness.  (Unfortunately I am overweight and that gave the doctor a copout about my symptoms.  She admitted that I had syncope but did not say the word dysautonomia.

Sincerely,

Katherine S.

6 hours ago, vepa said:

I get this too. I find that if I lie down as soon as I feel it starting, I can breathe easier and also prevent myself from passing out. Yes, I have lied down in the middle of a store before. At the very least, its much better than falling and hitting your head. 

Thanks for sharing.  I fell and got into a fight with the concrete and the concrete won; I got a black eye and a goose egg

12 hours ago, Clb75 said:

I had a doctor tell me that shortness of breath happens because blood is not getting to the upper parts of our bodies, including the brain and lungs. 

6 hours ago, vepa said:

I get this too. I find that if I lie down as soon as I feel it starting, I can breathe easier and also prevent myself from passing out. Yes, I have lied down in the middle of a store before. At the very least, its much better than falling and hitting your head. 

Thanks for sharing.  Yours sounds so much like what I have.  For me, simply walking is enough to set it off.  If I just stop walking when I get those breathless signals it subsides and I can go on after a few minutes rest.  What's more, I have very little tolerance for exertion.  A new job as a dishwasher with no break was what set off my first episode.  I'm afraid of another; I always will be as I feel there is no cure when it's about the autonomic system.  To make matters worse people who aren't really using their noggins will say it's because of my being overweight.  How many overweight or obese people pass out from light walking?  No more than the slim ones I'd say.

12 hours ago, KiminOrlando said:

What kind of doctor do you see? Cardio? Have you seen a neuro? Pulmonologist? Have you had a pulmonary functions test?

I only saw my GP for a discussion of my syncope episode.  She suggested a pulmonoloist but I feel my lungs are fine.  However, I feel a treadmill stress test would reveal more.  But then, they will blame it on my weight.  They would not believe that a few months ago I could carry groceries home a mile.  In my opinion, a neuro would be the best place to start.  But first I have an appt with a D.O. as a second opinion.  Also, I feel that even though my cardiac monitor was normal that my heart warrants a cardiologist.

Thank you for your concern.

Hi,

I'm new to this forum.  I'm really scared I won't make it very long if another really bad attack occurs.  My breathing wasn''t just hard, it was as though I were in outerspace where there is no oxygen.  This happened on Sept 29.  I banged myself up as I fell on the concrete.  I was cleared of heart condition by 24 hr monitor and sonogram.   This incident came on the heels of my first day at work (in a long time) and I had just gotten off.  Since that time I rested and recovered (for some reason exertion hurts my low back) and then got another job doing the same rather strenuous dishwashing job.  Coming home from my firsts day off there it was the same story:  I took a few steps and suddenly couldn't get enough breath so I had to pause and that helped.

If anyone knows anything about how dysautonomia affects breathing, let me hear from you please.

Thanks.

Katherine G