Hey Sally,

Did you ever try IVIG for the dysautonomia? If it is autoimmune in nature, I have heard good things...

No, I am healing the Autonomic Neuropathy (Dysautonomia/POTS) with supplements and diet. It is going very well! I was unable to sit up or walk. Now I can walk and do more. I have also had CFS for many years and that is doing really great.

To answer your question, my hands used to be cold and my feet also. I wear socks or SOFT UGG slippers at home. Even in summer, but the AC is on keeping me cool. With Dysautonomia, you cannot keep your temperature regulated. My hands and feet are much better now. I can go without slippers and sleep without socks now. I am improving.

I hope you can figure out exactly what is wrong. With Dysautonomia, everything automatic stops working so there are many problems. Adding that to CFS and wow, it is a mess.

This link discusses the test results:

http://xa.yimg.com/kq/groups/2161622...+RECEPTORS.pdf

This discusses further:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536520/

It appears that you have a diagnosis now.

Use of anticholinergic drugs would perhaps accentuate symptoms.
Nortriptyline has anticholinergic effects. So you might discuss its benefits vs risks with your doctor.

Thanks for looking into this mrsD! That is a great correlation between the Nortriptyline and the Neuronal Acetylcholine Ganglionic Receptor. I don't think anyone else would have caught that!
YOU ARE AWESOME!

Hey Sally,
It looks like my Neuro is moving forward with sweat test and tilt table to prove out dysautonomia. I wish I could rely on getting better with just supplements, but I have been on the supplements/diet for a few months and I am still add symptoms each month. (I realize the supplements can take a while)
So, the first plan of attack is IVIG. I am apprehensive about it, but I feel like I am backed up against the wall. My quality of life is sucking wind right now!
Is there any advice you have for me of things to watch out for? Do you monitor your blood pressure daily for spikes and drops? Do you see certain types of doctors regularly?
I am going to look for a Integrative doctor (like yours)where I live and see what he/she has to think about my case. I am working to feed my mitochrondia, but I get very little exercise, so the axons dont have much work to do. I have been super athletic for 22 years, and now I can hardly walk. It is killing me inside, I must get back to some form of exercise or I will never get better. Just being able to get the diagnosis in relatively short time is a huge weight off my shoulders and I consider myself blessed. I feel so sorry for others who struggle with this relentless disease and never get a diagnosis or wait an exorbitant amount of time. I was lucky the the neuro did not give up, although he tried three times. I explained to him that I was not going anywhere and we were going to figure this thing out together. Not sure he really wanted my help, but he got it and he is being very helpful now. Guess we have learned each others personalities and we try not to step on each others feet now

I'm glad you will get tested. Good you told the doctor to keep looking for what is wrong.

As far as the supplements. I have what half of people with Dysautonomia have, Autonomic Neuropathy as the cause.

So, supplements to treat the nerves in the whole body are the only way to heal. Most doctors have no clue about all of that. Integrative MD's have much more training. I am sure they vary though.

This healing is taking years. Dysautonomia is serious and debilatating. I was unable to sit up, I felt I would pass out 24 hours a day, dizzy, horrible nausea, feeling SO hot 24 hours a day, bp was HIGH, could not hear noise without being ill, fragile in every way. So many symptoms since nothing in the autonomic system worked.

I have had this for 3 1/2 years. It is hard to get better when you have it so bad. Each case is different. My doctor has not seen anyone with it this bad.

I hope you get an answer and begin treatment and slowly heal. There are some great forums if you ever need that.

I do see my integrative doctor to update him. He is SO happy I am so much better.

For "exercise" you need to flex your feet forward and back. That is very good. Also, you can lift your leg one at a time off of the floor or chair as you lie down or recline. You can move, you have to just find ways. I have many ideas. I just don't know what all you can do.


Your neurologist can learn. I learned a TON from reading. I have a textbook also, ha. The info is out there on Pubmed etc.

About my bp. I had to take Benicar for three years. My bp was so high. I take my bp several times a day. I am OFF of the med now!!!!! No more med! My bp is good now most of the time.

A man in my out door group has this and it is quite obvious, however he hikes, kayaks and this year has begun more extreme white water kayaking. I've even seen him stand up in a kayak while shaking. He's probably close to 60 and has a great attitude. So I guess whatever we get, we have to keep moving even when our bodies want to sit.

Some can stand and do things, some are bedridden. If the blood does not stay in the brain there is no standing or sitting. No choice there. Many faint 20 times a day.

Each case is different. Glad that man can do things. Those activities are impossible for most people.

The Autonomic nervous system is in charge of digestion, excretion, breathing, temp. regulation, blood flow, heart rate, on and on. All vitals and organs are affected.

The Autonomic Nervous System is supposed to keep our bodies in homeostasis. It can be very serious for most people. Every illness you have on top of it brings a relapse. Some find a cause like Lyme etc and they can improve.

Hey Sally,

I have been having the dizzy episodes about once or twice a day. So far I have been able to continue to do normal day to day things but today I had a pretty bad one. I am wondering if it is due to a sudden drop in blood pressure. When you were having a dizzy/nausea episode, were they all pretty much the same? Did you progress and have worse episodes after the first onset? I am wondering if this is just the beginning of these episodes and they are going to get progressively worse. Should I go see a cardiologist and wear one of the 24 hour monitors for BP? I feel like I am just turning over stones and finding new horrible symptoms each week or month. I feel like I need to get a handle on this aspect of the problem quick before I pass out while driving or something like that.
Thanks for your help!