i have this REALLY REALLY bad and im wondering if its from the intense neck pain+ehlers danlos..

anyone else have it? how do you deal

Dysautonomia
From Wikipedia, the free encyclopedia
Dysautonomia
Classification and external resources
ICD-10 G90.
ICD-9 337.9
MeSH D001342

Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), vasovagal syncope, mitral valve prolapse dysautonomia, pure autonomic failure, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), autonomic instability and a number of lesser-known disorders such as cerebral salt-wasting syndrome. Dysautonomia is associated with Lyme disease, primary biliary cirrhosis, multiple system atrophy (Shy-Drager syndrome),[1] Ehlers-Danlos syndrome, and Marfan syndrome for reasons that are not fully understood. In a study on orthostatic intolerance and EDS it is suggested the occurrence of these syndromes together can be attributed to the abnormal connective tissue in dependent blood vessels of those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures. This in turn leads to increased venous pooling and its hemodynamic and symptomatic consequences.[2]
http://en.wikipedia.org/wiki/Dysautonomia




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Oh and the similar threads section at the bottom of the page has threads posted on other forums here, so that might be helpful too.

the links may not show correctly- but it does show the titile & forum that it is in.
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Hi yes I have DA too - it is caused by (one of the causes) EDS.

Its hard but I just have to work through it as best I can as I have a child and a job. Off to see a specialist again soon - so hoping I just get more than salt and water as a med!!

yay! another edser. good luck with specialist, i have yet to find a doc who i like

my neck pain has made a turn for the worse in the last week, SO intense and tight, that it is triggering episodes of this.

on friday i was at a laptop *shudder* for 20 minutes and i felt the back of my neck and head clench up, i was so uncomfortable. then i stood up to talk to this woman so i could leave and i actually got her confused for this other woman. its like i wasn't even there. pretty scary.

I was lucky enough enough to see the top UK specialist in EDS, he also gave me the fab news that I have dysautonomia!

What type do you have/what does it affect - is it Pots/OI or something else?? Apparently if you get it with EDS, the DA will not get better, so we have something to look forward to lol

I have DA, affecting my HR,BP, gut motility, RLS, Pots and not sure as yet if it is the cause of my lowered kidney function. I hate this thing! And now TOS (must have been bad in a past life)

Mine is just getting worse and worse and I am seeing another specialist and I want meds for it now, because as soon as I wake up, bam, I am hit by all the symptoms and I cannot take it much longer.

i am not sure what type of eds i have...probably hypermobile type, maybe vascular but that seems less likely. i definitely have bad POTS and maybe neurocardiogenic syncope (??) the older i get the worse it gets. im surrprised i havent fainted at work yet.

my heart rate and blood pressure are all over the place. recently i found out my electrolytes are out of balance too, my magnesium was .5 and my potassium got up to 5.7. POTS is linked to salt wasting and a hormone called aldosterone. i just tested for mine this morning to see if they were low, i'll post the results when i get them. if my electrolytes are still messed up and my aldosterone is normal, then maybe its my kidneys

you are VERY lucky you have specialists to go to. what meds have you tried for DA? i guess i should at least see a cardiologist. right now i am spending all of my money on stabilizing my shoulders with physical therapy. i believe my tos was started by my shoulders being too hypermobile. people with eds (especially women) must be predisposed to getting TOS.

i cant take it much longer either. im amazed i can get up and go to work in the morning. im in so much pain and constantly foggy headed and dizzy.

I have no meds - just salt and water! This is of no use at all. I am going to London to see specialist soon and will discuss it with him then.

My hr/bp is all over the place too. BP either drops real low, goes real high or remains about the same on standing. My HR goes through the roof often rising 50 or more - it use to rise between 25/35 on standing but its getting worse.

lolol ive been drinking salt water too, i swear it hasn't helped me either

i tried to measure my bp immediately after i stood up (from lying down) several times and it wouldnt even give me a reading. kept saying ERROR.

Hi there. Know this is ages old, but is there a link between TOS and POTS? I had TOS triggered by cycle accident. But have since been diagnosed with POTs, too. I am hypermobile. Who did you see in the UK? I am in the UK, too. Hope you are doing ok. Hard to cope at times. Best get off here...!

i am in the usa but maybe someone else can comment

i think almost every who is hypermobile has some form of POTS pretty much, has to do with our signalling being hypersensitive/off

my autonomic symptoms got better when my magnesium increased, its still too low tho