Dysautonomia and the heart as well as the mind!

[deadrocked]

I normally am on The Heart Forum, but as my problem looks like it's dealing with the brain and it's functions, I need to ask you folks a question or two. HISTORY-4 heart cath's in nine months. 3 heart stents on 2nd cath. Reason for caths - rapid elevation in BP and Pulse. CHRONIC. ECG showed Ischemia, multple MI's - Nuc Stress shows NO MI's. Currently diagnosed with Dementia, cognitive impairement, HTN, HBP, CAD, Angina, Diastolic Dysfunction. For the 'dementia' cognitive impairement, they tried Arricept - did not work, moved me up to Namenda - good for 2 or 3 hrs after taking meds. Normal heart meds on the high side for levels. During my last stress test, the technician and pratitioner stated that after looking at my records, it appears that my problems appear to be stemming from Dysautonomia. They say that, that is the probable reason for all of the Cath's eccept for one. The Dr's to this point cannot state why I can not be stabilized on my BP and Pulse. Why I have developed a cognitive impairement leaning towards dimentia (dementia) - Definite short term memory problems, loss of smell, numbness and or pains in legs and hands. Impotency started to occur 2 or 3 months ago - not because of side effects of meds.
I am a 49yo male still with a long way to go - we hope - and need to know if there is any way to work through this if it is Dysautonomia? My Cardiologist, Internest are stumped and the Dr. treating my memory problems and impairements has stated that the Brain is the KEY to the body. Is there a cure??? Is there something that can be offered to myself and others in the forum?

[CCF-Neuro-M.D.-PW]

The autonomic nervous system is the means by which the brain controls the various 'automatic' functions of the body - blood vessel and heart control, lungs, glands, GI tract, sexual function, sweating etc. Therefore, autonomic nervous system dysfunction can cause a wide range of symptoms.

Of course problems furhter down the line at each organ level can cause similar symptoms such as cardiac disease, phaeochromocytoma (this is a tumor of the adrenaline producing glands that can be evaluated by some urine tests, should be ruled out)

The neurologist (and in particular a neurologist specializing in autonomic disorders) can do an array of tests of the nervous autonomic system to search for evidence of pathology - sweat tests such as QSART, and sweat powder testing, cardiac tests such as blood pressure response to valsalva maneouvre, pupillometry, and others

Dysautonomia can be caused by a variety of condiitons such as congenital neuropathies, diabetes, amyloid disease, medications, among others. I cannot be more specific in your case without knowing more. If you have some cognitive problems, and loss of smell, dysautonomia you should have a brian scan to rule out a mass lesion in teh frontal lobe, or hydrocephalus (enlargement of the brain spaces)

The autonomic section of the neuromuscular department at the Cleveland Clinic (run by Dr. Robert Shields) could give a second opinion and perform the above tests if so wished

[deadrocked]

Sorry for the add on, other problems that are increasing as time goes by (like the unstable BP and Pulse) are Sweats, shortness of breath (pulmonary test results were A+), dizziness.
As I said, alot of Dr's. are unaware of Dysautonomia or shrug it off and say that a person has NUMEROUS ailments, each to be treated individually.
The problems posted, I know are not only being experienced by me. How do we (in the forum), find help? How do we treat something like this, and with whom?
If you were in "our" position, how would you proceed?
Thanks for your response.

[jan]

Have you checked out the forum on the National Dysautonomia Research Foundation's site?  I will put a link up to it, it's long so if it doesn't work then just go to www.ndrf.org and then to discussion.

http://216.149.163.247/cgi-bin/forumdisplay.cgi?action=topics&forum=NDRF+General+Discussion&number=1&DaysPrune=20&LastLogin=

[deadrocked]

Thank you Jan. While I have been in that site, I must have overlooked that area.
I regard to the Cleveland Clinic. Their reports back to me have been excellent!!!! Atleast dealing with the heart. I also have had family go there for treatment and well, what can I say - Their now healthy.
I'll check the site - thanks

[qfish]

A related discussion, Dysautonomia or Vasovagal Syncope Mis-Diagnosed was started.