can you have autonomic dysfunction and not POTS

[brethor]

Hi

Can you have dysautonomia and not have POTS or do they always go hand in hand???? I have tons of the physical and neuro symptoms but not as much of the blood pressure issues so I am confused??

Bren

[mtgardner]

Hi!  Sorry you are having the types of problems that lead you to post here but welcome to the forum!  I have autonomic dysfunction with labile BP instability, orthostatic hypotension, and no heart compensation to low BP.  I had the tilt table test then went to a doctor in Arizona and had the QSART testing and catecholamines testing.  My BP is at the best control I have had it with guanfacine and pyridostigmine.  The pyridostigmine also helps my muscle weakness which seems to be a neural junction disorder. I also have Raynauds and Hashimotos.  I have small fiber neuropathy and severe sleep apnea which were also identified by the same doctor in Arizona at the Mayo clinic there.

I would caution people to look for specific doctors that others have recommended or ones with specicif history and interest in autonomic dysfunction.  For instance I have heard wondrerful things about Dr. Grubb.  When you have autonomic dysfunction it is usually hard to find a doctor nearby that has expertise.  I have to go some distance across four states to get to mine.  There is a list of some doctors on the POTS PLACE site. There is no one anywhere near me that has the ability to treat this.

I am now dealing with another problem of brain not talking to bladder.  I have just done the testing for a possible INTERSTIM implant.  The test wires in my sacral nerve seem to be working well!  I feel I am making progress on this.

Anyway, yes there are many types of dysautonomia.  I seem to have lost the pathways to the baroreceptors that conrrol BP.  My heart rate doesn't speed up when I walk up hills.  It also does not speed up when my BP drops making fainting really interesting.

Will hope you find some answers.  Marie  

[POTSgirl85]

Bren, have you been tested for POTS?  Have you had a tilt table test?  Depending on the subtype of POTS, you wouldn't necessarily have blood pressure changes that you might be expecting.  Heart rate is where you would see more issue.  What kind of symptoms are you having, and are they when you're laying down, sitting, standing?

[bilieann]

hi, i woke up one morning almost exactly a year to life changing symptoms and have never felt the same. I have Autonomic Dysfunction or Dysautonomia. I have Orthostatic Hypotension, POTS, Nero-cardiogenic syncope, and Orthostatic Intolerance. I was 18 when got sick, and now just turned 19. I cant drive, go to school or work, most of the time cant even attend church. I still have more tests to be done because my body hasn't responded to treatment, 3 weeks ago i had my first port placed in my chest for saline infusion treatments to get me out of the bed. wondering if anyone could give me any advice or help. I had my life taken from me at such a young age and i would do anything to be able to feel okay again.

[brethor]

thanks everyone this is a very scary disorder!! The worst part about it is my heart never feels right anymore yet echos, most ECGs come back normal

bren

[Sharingme2]

Right...POTS is just one form of Dysautonomia.

[beema36]

Bren,  I don't think I have seen you on here before. Nice to meet you.. Yes you can have dysautonomia without having POTs. There are many types of it. Just to name a few there is neurocardiogenic syncope, orthstatic hypotension or intolerance, pure autonomic failure etc. If you look on the health page on this site you can find a lot of information. Hope this helps.
Beema