what type of dysautonomia is this?

[lilbit985]

Hello- I hope that someone can explain this to me. I have orthostatic hypotension-chest pain awful in the morning-then goes to sweaty hands,then later they get ice cold.Feet sweat,body hot although I constantly run a low temp.weakness esp after a small amount of exertion- I know I should'nt drink coffee but I find it hard to get thru the day without it.Sometimes I feel dopey-like I'm stoned-eyes feel wierd,vision gets blurry-get startled when hearing a lou noise. the list is long-wierd pain in left eye(behind it)numbness of skull-pain between shoulders(feels like nerve pain)at the base of my neck.palpitations and can see my chest jump while my heart beatsall that started 3-4 yrs ago- also developed urinary incontinence.. I feel that this is a dysautonomia-I have kept track of my b.p. & Ndrf advised me I meet the criteria for dys. w/ pots-what I want to know is could this be pure autonomic failure? one day I'm not so bad-the next I feel terrible-wat can I do? My dr said nothing is wrong-although he never ran an tests-he admits my bp is erratic-any help is appreciated-thank you :)

[supineallthetime]

It is common with dysautonomia to have to weed through doctors before getting one that will do all the investigation necessary.  It sounds like you will need to both press your doctor tactfully to continue seeking answers, and also seek out other docs... particularly specialists that know what to look for or at least acknowledge that something is going on.  I'm afraid that seems like the norm in this field... patients having to be very persistent and run the gauntlet of many doctors.

I have read a bit about PAF but don't know too many specifics about it's diagnosis.  From memory, it sounded a bit like a diagnosis of exclusion... meaning once most other possible sources of neuropathy have been excluded then one concludes that it is simply pure autonomic failure.  Your symptoms do seem like that is a possibility.  Also, POTS is often (most often?) lacking a distinct known cause and I think it can encompass much of what you describe.

If you are having clear neurological developments then there is a chance some neuro testing can turn something up.  Also, be sure to do a "poor man's tilt" on yourself and seek a tilt table test to pin down the pulse increase of POTS definitively.  Depending on the pattern of pain, fibromyalgia can be considered and it has similarity/crossover to POTS & CFS.  Endocrine issues probably need to be considered, they can throw up at least several of the symptoms you mention though perhaps not all?  And if there are signs, autoimmune sources of neuropathy should be sought out.

Bottom line though, if a doctor says there is nothing wrong but you know better, you have probably reached the end of the line in their abilities and need to seek a new doctor (usually a new combination of doctors) for these sorts of conditions.

[lilbit985]

Hi. Thank you for responding. I have done the poor man's tilt and it showed marked decrease in bp as well as 20-25 pt increase in heart rate. when I contacted NDRF,they said I meet the criteria for pots/dysautonomia.I realize it has a cause and tring to find the cause has been difficult.Like I said, my Dr said it's in m head,my mom thinks the same thing,but I know something is wrong. She does'nt see what I am going though,I hide alot of my symptoms to avoid hearig anything negative.No insurance has made this even harder to resolve.I was given xanax and these symptoms persisted even while on medication,I have back tracked and believe this to have been triggered by levaquin-esp. sinse I recv'd a very high dose while on xanax withdrawls 3 yrs ago. I am concerned that this will progress into paf, I am mentally exhausted from this,and don't have a support system. I live in Ga.,and Drs in my town are'nt the greatest.I will continue to seek answers- I do have a good endocrinologist that I believe will be able to help-we are doing catecholomine tests next-thank you & God bless.

[Heiferly]

If POTS is suspected, the best referral you can get is likely to an electrophysiologist-cardiologist (EP Cardiologist) at a major teaching hospital who can run a tilt table test (TTT) for you to establish or rule out the diagnosis of POTS.  I do not think from your description that PAF is likely, however, if it turns out that a specialist recommends that PAF be ruled out you may want to go to one of the hospitals with an autonomic clinic for comprehensive testing.  Vanderbilt in TN would be the closest one to you.

The catecholamine testing is a good start and has implications regarding several different possible diagnoses including POTS.