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Autonomic Dysfunction

Posted by Tuckerdoodle @tuckerdoodle, Jul 15, 2017

I am curious about this topic, which was mentioned during a recent doctor's appointment. I have been sick for 15 months with vague but debilitating symptoms. The short version is I had sinus surgery 02/2016, developed Shingles & mono 4 months later that was the result of an undetected sinus infection. Treatment with antibiotics and steriods for a month cleared the infection, but I have been left with other problems. I have heart palpitations, GI problems, fainting, dizziness, extreme fatigue, weakness, body temperature problems and with tingling sensations in my legs and lung pain. I have been scanned, stress tested, tilt table test, endoscopy, colonoscopy, EMG, ECG, heart ultrsound, blood work and now have a loop recorder for the heart. I get a swelling sensation in my chest on the left side that causes dizziness, belching, pain and fatigue. I do have a hiatel hernia and gastritis. I am gluten free, dairy free, red meat free and have been to 15 doctors. I went to running 3 miles a day, lifting 50 pound bags of grain and hay, working full time and taking care of my family. I presently can do small amounts of housework. The last doctor mentioned Autonomic Dysfunction and told me to research...google is vague and cannot find a doctor to who treats this disorder. Any suggestions wil be helpful...running out of options.

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cyp238ress | @cyp238ress | Jul 25, 2024

My recommendation is that you have a skin punch biopsy to check for small fiber neuropathy. I have SFN, and many of your symptoms are consistent with SFN. You will want to check with a neurologist to see if their particular office is able to complete this procedure for you. I wish you the best.

REPLY
kdalda75 | @kndaustin71 | Jul 25, 2024
In reply to @joker3070 "I've recently been diagnosed with Vasomotor/autonomic disorder. My blood pressure is very erratic. It can hit..." + (show)
@joker3070

I've recently been diagnosed with Vasomotor/autonomic disorder. My blood pressure is very erratic. It can hit 200/95 at the begining of the day or whenever, then a few hours later, can hit 80/54 or lower. It has gone low enough that I have passed out. I have a number of problems, diabetes, kidney disease, heart disease, to name a few. Ive had multiple stents and a heart bipass surgery.
Recently, I had heart attack symptoms so I took my nitro pills, I took two before the symtoms stopped. Then a moments later, I started experiencing stroke symptoms, so I went to ER. while there, my blood pressure hit 260/120 or something like that. I had already been diagnosed with the autonomy. They now have taken me off all blood pressure meds, accept clonodin 2x daily, AS NEEDED, no more than 2. For fear of my blood pressure dropping to low again. They have sent a refural to the mayo clinic. I'm not sure how the process works.

First, has anyone else here experienced this?
Secondly, what is the process of a mayo clinic visit. Do they have guest rooms available for the person that brings you there? how does this all work?

Any information would be greatly appreciated.

Jump to this post

I believe that Mayo Clinics offer concierge services that will help with planning, organizing you trip etc. Look at the web site of the clinic to where you will be traveling. Even just entering
"mayoclinic.com will be you access to numbers to call. Best of Luck! I have spoken with them before and find them to be very nice, willing to assist, even with air travel and knowledgeable.
Hope this helps.

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1 reply
joker3070 | @joker3070 | Jul 25, 2024
In reply to @kndaustin71 "I believe that Mayo Clinics offer concierge services that will help with planning, organizing you trip..." + (show)
@kndaustin71

I believe that Mayo Clinics offer concierge services that will help with planning, organizing you trip etc. Look at the web site of the clinic to where you will be traveling. Even just entering
"mayoclinic.com will be you access to numbers to call. Best of Luck! I have spoken with them before and find them to be very nice, willing to assist, even with air travel and knowledgeable.
Hope this helps.

Jump to this post

Thanks for your help. Very much apreciated

Joker3070

REPLY
marierizzo | @marierizzo | Feb 14 11:07am

I dont know if my comment was actually posted I’m new to this site
I have dysautomia my blood pressure goes very high and drops as soon as I’m standing. Im pretty much confined to a chair
I was pit on droxidopa, which is for Parkinson’s but my doctor has given it to me for my condition. So far it hasn’t helped much. Ive only been on it less than two weeks. Im praying it helps. Marie

REPLY
1 reply
cheyne | @cheyne | Feb 14 2:01pm
In reply to @marierizzo "I dont know if my comment was actually posted I’m new to this site I have..." + (show)
@marierizzo

I dont know if my comment was actually posted I’m new to this site
I have dysautomia my blood pressure goes very high and drops as soon as I’m standing. Im pretty much confined to a chair
I was pit on droxidopa, which is for Parkinson’s but my doctor has given it to me for my condition. So far it hasn’t helped much. Ive only been on it less than two weeks. Im praying it helps. Marie

Jump to this post

Hi,
I have the same problem with my BP, it has a will of it's own regardless of any medication. I can no longer medicate for high BP as it can suddenly drop when It feels it wants to. My BP only drops a little on standing, but being medicated it can drop far too low, suddenly. It is safer not to medicate but I keep a check on my BP and get myself to ED when it goes beyond 240/140. I have Autonomic polyneuropathy which is what is interfering with my system.
Cheers

REPLY
cheyne | @cheyne | 2 days ago

Hi,
I found a lot of information on Google regarding Dysautonomia and the Autonomic nerve. There is also Dysautonomiainternational.com which is helpful. Dysautonomia being the umbrella term for autonomic diseases.
I have been living with most of your symptoms and more for 13 years until finally diagnosed late last year with Autonomic polyneuropathy. I do not get swelling in the chest but I do have to put up with fake heart attacks and now refuse hospitalization while they discover it is not a heart attack.
There are many diseases that cause these symptom which is why it is difficult to diagnose. The Autonomic nerve controls all the actions the body does with out our thinking about them, add in the polyneuropathy and that covers all the rest nerves and sensing.
I started believing everybody that I had a psycological problem until the right Dr at the right time recognised the symptoms. The relief of knowing what is causing my symptoms was the first positive step forward in a long time. It hasn't made any changes to what I live with but the relief of knowing what it is not has let come to grips with the problem.
When the symptoms are bad, they constantly change because of the compromised nerve endings, I just have to sit it out waiting for any improvment to get mobile again. I just live each day as it comes dealing with the symptoms anyway I can, hopeful of a better day tomorrow.
Cheers

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