Prognosis for autonomic dysfunction

[Richard1030]

I have been feeling pretty bad since June.  I have had nausea, shortness of breath, dizziness, fatigue, weakness, chills,sweats and more.  I was diagnosed with autonomic dysfunction this weekend.  I was also told I had orthostatic hypotension and was in the hospital this past weekend.  They tried daily IV fluids but I remained orthostatic.  I was told that with the autonomic dysfunction there was not much they could do, except put me on a medication that would seriously raise my blood pressure.  I already have high blood pressure and was advised not to take ny of my hypertensive meds.  I have a neurology appt. on Nov. 2 and have been told that since this is considered a chronic problem there is no urgency.  I have been trying since early July to get to the bottom of all this, first at the VA hospital in NH and then at the VA hospital, here in Atlanta, GA.  In NH, after 3 ER visits and 1 stress test, they said all my results were normal and they could find nothing wrong.  Here in GA I have been diagnosed with prostatitus, bradychardia, and orthostatic hypotension.  After my recent 4 day hospital stay, I was told they think it is an autonomic dysfunction.

Is this something that I am just going to have to learn to live with?  My search for a prognosis for autonomic dysfunction on the internet has not been very encouraging.

Thank you.

[Heiferly]

Yes, in most cases Mayo Arizona can diagnose dysautonomia such as POTS and head up treatment for it as well. They have a partial autonomic lab, which is sufficient for most patients. I believe Dr. Goodman is the main dysautonomia doctor there; you may want to look him up. I would ask for a genetics consult as well at Mayo, to evaluate for collagen disorders such as Ehlers Danlos, since there's a family history especially.

Best wishes for you and your son, let us know if there is anything else we can help with, H.

[PamOJ]

My son was just diagnosed with POTS. I believe he also has dysautonomia and possibly Ehlors-Danlos Syndrome. If we go to the Mayo Clinic in Phoenix, AZ, will they be able to diagnose dyautonomia? The reason we know he probably has it is because my husband's sister also has both AD and EDS.
Thanks,
Pam

[Heiferly]

None of the satellite locations of Mayo or Cleveland Clinic has a full autonomic lab. I'm not aware of a full autonomic lab at U of Buffalo or Columbia either. NYU has one but it's focused on familial dysautonomia, which is much rarer than the types we typically see in this group. If you want more information on diagnostic tests, let me know.

[Leena425]

Mayo clinic,Cleveland clinic,univ of buffalo,Columbia in NYC. Btw...mayo has many satellites...I.e.,new york,Florida, long island. Diagnosis and protocol can be found there.

[dotty9947]

I have been having a terrible time with the diagnosis of the specific dysautonomia I have. Can you suggest where to go or whom to contact? I live in Chicago but would be willing to travel.

[mtgardner]

This is an old thread and La La last posted  on this thread in 2010.  You may need to click on her name and send her a private message to get a response.  When you come to an old thread the same participants may or may not still be following it so if you don't get an answer from her you may want to try this other method.  You can also start a new thread by posting your question on the main page...I hope you connect.  Marie

[Becca14]

LaLa, I was recently diagnosed with POTS and have an appointment scheduled at Cleveland Clinic.  Who did you see that said POTS can be cured?  How would you describe your experience there?

[LaLa4]

Make sure to get the tilt table test, it seems to be the main test as a starting point for diagnosing and investigating any form of dysautonomia.  
I have a progressive kind of POTS and was recently told at the Cleveland Clinic that it's possible to be "cured".... first time I've heard that about the type I have but this dr. is a renowned specialist so I'm keeping my fingers crossed.

[Richard1030]

Thank you for your responses.  I find them all helpful and encouraging.  I have not had a tilt table test.  I was scheduled for one while I was in the hospital but the doctor cancelled it because he decided it was not neccessary.  I see the neurologist next Tuesday and guess I will go from there.

Thanks

****

[mtgardner]

I do not live on a mountain that is very high and my living here has nothing to do with autonomic dysfunction!  I moved here when I retired and before my diagnoses.  That said, high altitude can be a problem for some with autonomic dysfunction. Some members have mentioned having trouble traveling through the mile high Denver area and there are some cautions about the pressure level in planes  that can effect some people with AD.  On the Dinet site under "Things to Avoid" there is a reference to this.
Realize it is a caution not an absolute!

The physiology of altitude and it's effects on autonomic dysfunction is referenced in a few journal articles and is complex.  There are many different mechanisms involved. Not everyone would be effected to the same degree at the same altitude.  I know with my form of autonomic dysfunction which is Pure Autonomic Failure I may start hyperventilating at some level.  I have not tested that so far but know I have been
to 5000 feet early this summer with no problem with SOB on exertion.  Everything depends on your particular condition at the time and many factors.  Some people but certainly not everyone needs and perhaps a small percentage need supplemental oxygen on flights.  Most of us have more then one condition and our abilities change a lot depending on many things. It is something to be aware of.

We had a discussion of this on another thread earlier in the year that was interesting.
Hope this helps answer your question.  Marie

[laikastar]

Hi, can I ask why you live on top of a mountain? does the low atmospheric pressure help? Guys, to all of you out there, it is quite OBVIOUS that if our veins are too soft like a wilting flower, the less pressure we put on them the better, right? it is obviously all a vein problem!! why, if not, with all forms of autonomic dysfunction, water puts up the pressure - think of a floppy balloon when filled with water, the plastic of the balloon might not work well but the water somewhat compesnates for that

[vbc2000]

Hello Richard,
Welcome to the forum.  There are many caring and helpful people here so I think you're going to find it very beneficial to be involved with the forum :)

I was just diagnosed with Neurocardiogenic Syncope in June and I know exactly where you are right now.  It's all pretty overwhelming and seems like a big, complicated puzzle.  There's alot of information out there that kind of just brings up more questions but information is power so it's all worth reading.  

As Marie and bluewind said, the prognosis depends on the diagnosis and it sounds like you need more testing to find the exact diagnosis for you.  Looks lke you're in GA so I'm not sure what AD specialists are there, but a good place to start is a Cardiologist.  Hopefully the VA hospital there can do the basic cardiac testing.  I think you will definitely need a tilt table test so see if you can get that.  It seems to diagnose or rule out alot of AD conditions and that's how I got diagnosed.  I'm going to be seeing a Neurologist and it seems they are a key to treatment/diagnosis too.  I hope the VA is going to be cooperative and not give you too much trouble in getting the care you need.  As Marie said, we are our own best advocates, especially since alot of docs don't seem to know alot about some of this.  

I know this is all hard...but it helps being here - that I can tell you for sure.
Stephanie  

[mtgardner]

Welcome to this forum Richard.  It is sometimes hard getting diagnosed and some people wait years to get the right diagnoses.  You did not say what tests were done and what was ruled out but hopefully you did have a tilt table test and got cardiac tests as well.

There are many different autonomic dysfunctions and a lot of journal articles on the web but this link has a nice concise summery of the overall category including prognoses although it is general.

http://en.wikipedia.org/wiki/Dysautonomia

Here is a good link to prognoses and postural hypotension from the Mayo clinic.

http://www.mayoclinic.com/health/orthostatic-hypotension/DS00997

My cousin's husband recently went through a lot of hoops for evaluation by the VA for tachycardia and hypotension.  They had to be very persistent but at last check he had been put on a medication that lowered the pulse rate and he feels like a new person.  His wife says his anxiety level is so changed.  

There are some people who's autonomic dysfunction is secondary to something else that once controlled or alleviated they have more manageable symptoms and a small percentage actually no longer have autonomic dysfunction.  I have seen at least three cases of that.

If it is possible for you to go to an autonomic function lab or get into a study through the National Institute of Health so that you can get autonomic function testing you may find more answers.  It helps to be as persistent as you seem to be as you are your own best advocate.  Through reading other's stories on forums here I have asked for some tests that have shown deficiencies in vitamin levels and thyroid.  Everything you discover that is off level and fix can help everything overall.

It is tricky to treat medically when you have both high and low BP.  There are a few journal articles about it on line.  I have a different diagnoses then you but I started out with hypertension and on three BP meds.  I weaned off all of them gradually as my BP continued to lower.
I am not saying this is how things will be for you but it is an example of how things can change.

There are many ways to raise you BP when it lower suddenly and ways to keep it from doing so at times. Drinking a pint of water raises mine 40 points in 30 minutes.  I can lay down with my feet above my heart, like over the sofa arm while waiting for it to come up.  I also spend part of the afternoon with my feet elevated on a stool rather then having my feet down all the time.  There are lots of ideas on this forum for low BP,
and living with that.

I wish you the best and hope you find the answers you are seeking. Marie

[bluewind95]

Hi Richard, and welcome to the community.

The things with dysautonomia is that, well, it's a very complex problem and not even the doctors understand it very well. Therefore, an accurate prognosis is a difficult thing to get.

From what I understand, the prognosis depends in great part on what kind of dysautonomia you have. A progressive one, well, yeah, the prognosis tends to not be very nice. If not progressive, then there really is little way to tell. Sometimes, dysautonomias go away, other times they're here to stay. Learning to live with it is probably the way to go, even if it goes away, for it will help you while it does so. And if it doesn't go away, well, it will help you too. There are things you can do that will help you feel better.

Good luck with finding answers