Anyone know about Autonomic Dysfunction?

[Chuck-PA]

I was just diagnosed with Autonomic Dysfunction.
The doctor told me very little about this. It is about the blood flow in and out of the heart. He readjusted my meds and gave me a few new ones.

I am hoping to feel better soon.
I feel light headed and dizzy. I have shortness of breath upon exertion.
My blood pressure (too high, too low - passing out) and pulse (too fast, too slow) have been all over the place. Swelling in ankles and legs, they are starting to go down.

I have been in and out of the hospital since August.
He placed me on Coreg, Proamantine, Amitriptyline. Any experiences with this?

 

[mechurchlady]

Here are some sites that may help. You need to find out specifically which disorder you have as treatment and ways to improve lifestyle vary.

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787
The term 'dysautonomia' is not a diagnosis, but rather it is a reference to a group of disorders in which there may be one or more very different problems with function of the autonomic nervous system.

http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
that is the NIH federal site information.

http://www.ndrf.org/ans.htm
This one is a scientific explanation of how the Autonomic Nervous System works and is not too hard to follow. A lot simple than my college text books.

National Dysautonomia Research FoundationP.O. Box 301
Red Wing, MN 55066-0301
ndrf@ndrf.org
http://www.ndrf.org
Tel: 651-267-0525
Fax: 651-267-0524
This site has books, videos, a forum and other information

 

[onesadduck]

I feel like I should have some great wealth of information here as my little sister had Familial Dysautonomia. Don't look at my sig and think "Oh no! She died young, I will, too!" because she obviously had a different dysfunction than you have. If you had FD, you'd have known long ago, and would have far more symptoms than you do.

The problem with autonomic nervous system disorders is that there can so many different symptoms, even among the same disorder. There are so many different things that can go wrong or be disrupted when the autonomic nervous system glitches. Don't take this to mean it'll get worse, or you'll develop more symptoms- I just mean that for one body system, there are so many different things that can go wrong in the form of different conditions.

My little sister did have problems with erratic blood pressure, usually low. She was put on medication to regulate it, and got better in that area. While it's not great that you have this, and I am bothered by your doctor's lack of explanation, I'm sure you'll be fine.

If I were you, I would email your doctor asking for more info. You should figure out what specific autonomic dysfunction you have.

Basically, the part of your nervous system responsible for regulating blood pressure is not functioning up to par, which can definitely lead to what you've described. So you and your doctor will have to do that for you in the form of medications and possible exercise and diet plans (not saying "lose weight", you may simply have to stay away from certain activities or foods- or maybe not). My sister at list a mile long of medications and things to avoid- but she had a different dysfunction, and her symptoms were not confined to the circulatory system.

Good luck, and don't back down. Demand information from your doctor.

-Alisa

 

[KPeveler]

i will soon be diagnosed with ANS dysfunction - that is, dysautonomia... for me, probly generalized dysautonomia. its my heart rate, BP, blood sugar, digestion... it really sucks, but at least you got a diagnosis! it is very hard to get diagnosed... the sites that people mentioned were good... also check out butyoudontlooksick.com, just for some support!

 

[Chuck-PA]

Thank you all for your input.
I see the doctor again in March to be retested to see if the meds he has me on is working. I will definitely be a bit more prepared with questions and all when I return.
I see many doctors for various other diseases and they all seem to call me
"the man of many symptons"

The other doctors are starting to think the other problems I have, may all be related to this autonomic dysfunction.
It will be so good to know if this will be true. I have been not feeling myself for about 7 years.

 

[baloo's girl]

My dh has dysautonomia (in fact, so does Greg Wiggle for the Wiggles). His version is also called orthostatic intolerance. My dh was in the Navy when his symptoms were triggered. It took years for them to figure out what was wrong with him. He has the passing out spells, digestion issues, mood issues, dizziness and fatigue. He was finally diagnosed in Birmingham, AL at the Mitrovalve prolapse center-after going all over the country in military hospitals with no answers. Their website is http://www.mitralvalveprolapse.com/INDEX.htm.htm They are an awesome facility. My dh saw Dr Watkins.

Today, dh's disorder is much better controlled. It tends to flare up when he's stressed or does to much physical stuff-yard work is just too much for him in the summer. Good diet and exercise help some.

I am a little worried about our trip to Disney next December. I'm hoping that we can work up to the walking-and I guess we'll take lots of breaks throughout.

Good luck and I hope you get some good information!!

 

[LauraVV]

I was just diagnosed with Autonomic Dysfunction.
The doctor told me very little about this. It is about the blood flow in and out of the heart. He readjusted my meds and gave me a few new ones.


I have been in and out of the hospital since August.
He placed me on Coreg, Proamantine, Amitriptyline. A

My son has a diagnosis of dysautonomia. I expect my daughter to also get this diagnosis. I am also symptomatic.

It is a dysfunction of the autonomic nervous system. It's not really caused by heart problems although mitral valve prolapse can cause dysautonomia. It is caused by dysfunction of the autonomic nervous system so it's really more a neuro problem than anything.

Elavil is an antidepressant sometimes used for dysautonomia. Beta blockers are also sometimes used.

Here are some of the symptoms we have as part of dysautonomia: orthostatic hypotension (fall when getting up from seated position due to blood pressure changes), inappropriate pupil dilatation, pulse instability, blood pressure instability, temperature control instability (fevers when not ill, no fever when ill), splotchy colors on skin, diarrhea, constipation, fatigue, dyscoordinated peristalsis, falls, reflux, mind numbing fatigue, incontinence, neuopathy, migraine, etc.

Dysautonomia is often caused by another disorder. For example, it sounds like yours is related to cardiac issues. Ours is related to metabolic disease (a neurometabolic disorder or an inborn error of metabolism).

http://www.umdf.org

We use thermotabs to help raise blood pressure. I use stimulants to help me stay awake.

http://www.neuropathy.org/site/PageServer?pagename=Type_Autonomic

 

[Chuck-PA]

My son has a diagnosis of dysautonomia. I expect my daughter to also get this diagnosis. I am also symptomatic.

It is a dysfunction of the autonomic nervous system. It's not really caused by heart problems although mitral valve prolapse can cause dysautonomia. It is caused by dysfunction of the autonomic nervous system so it's really more a neuro problem than anything.

Elavil is an antidepressant sometimes used for dysautonomia. Beta blockers are also sometimes used.

Here are some of the symptoms we have as part of dysautonomia: orthostatic hypotension (fall when getting up from seated position due to blood pressure changes), inappropriate pupil dilatation, pulse instability, blood pressure instability, temperature control instability (fevers when not ill, no fever when ill), splotchy colors on skin, diarrhea, constipation, fatigue, dyscoordinated peristalsis, falls, reflux, mind numbing fatigue, incontinence, neuopathy, migraine, etc.

Dysautonomia is often caused by another disorder. For example, it sounds like yours is related to cardiac issues. Ours is related to metabolic disease (a neurometabolic disorder or an inborn error of metabolism).

http://www.umdf.org

We use thermotabs to help raise blood pressure. I use stimulants to help me stay awake.

http://www.neuropathy.org/site/PageServer?pagename=Type_Autonomic

I passed out again this weekend and was admitted to the hospital.
My pulse is too fast or too slow when laying down and standing up.
For the past few days since being home when I go to sleep my arms and legs have been jerking around and I have been stuttering. Every test they did came back normal so everyone is puzzled about what is giong on and therefore I have to remeet with all my doctors to discuss where we go from here. I just wish things would settle down and I can lead a somewhat normal life.

 

[baloo's girl]

Chuck, I'm sorry to hear this. But try to stay positive-you WILL be able to live a fullfilling life. My dh had terrible episodes early on, but he's much better controlled now. There's not much he can't do. I hope you can get a plan worked out with your doctors.

 

[luvdzny]

My 18 year old DD was diagnosed with Dysautonomia about 1 year ago. She has been having many problems since she was an infant but we finally found out what is causing all of them. It is not at all unusual to have a lot of normal test results with this illness. DD had been going to doctors for years and some of them thought it was all in her head. We finally found a great cardiologist her recognized all the symptoms and referred us to a neurologist. The neuro knew what tests she needed and they all came back abnormal. After years of being told that there is nothing wrong it was almost a relief to finally have a diagnosis!

I don't know where in PA you are, but here is a link to doctors that specialize in autonomic dysfunction:

http://www.ndrf.org/physicia.htm

there are a few in PA. Good luck, DD is really quite sick, hopefully you will have much better luck!