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!

For me, I had a couple of episodes in the grocery store. My hubby went to get the car and I saw sitting at the door unable to walk and he kept driving around the parking lot wondering why I didn't come out. ha We had no idea what this was yet. Finally I was able to make it to the car as he drove up again.

I was unable to stand when I was at the vet once. Thought I would pass out. That was very odd. I thought I must be nervous, but I have taken pets to the vet many times.

Then on my anniversary, we went out to buy a ring I wanted and that night everything stopped working. I could barely walk to the bathroom...All of those horrible symptoms of the failed autonomic nervous system.

Horribly dizzy and lightheaded. Unable to sit, but even in bed, I felt the same.

If you have this, it is possible it can get worse, but everyone is VERY different.

Yes, several times I got so ill, it felt the same. Then, a couple months later everything failed. There was not one second that I felt ok for years.

You should get a bp monitor and keep track of it. Might help the doctor. Some people do get the Holter monitors, yes. I hope you can get help soon. For now, drink a lot of water. It is the first thing a doctor should tell you since there is a lot of pooling of blood and that can't hurt to do of course.

If your dizzy spells are when you are sitting up or just walking around, yes, I'd get a monitor to see if you are in AFIB....

Dizzy when standing up suddenly, is different...orthostatic mostly.
This is more like the autonomic symptoms. Sudden change in
position therefore is characteristic of autonomic issues. But autonomic can also occur when changes of position are not present.

When the atrium of the heart goes into a fibrillation state, the blood cannot be pumped out properly and fainting or dizziness happens. This can be when walking, sitting in a chair, standing.
This is risky because while the blood is stalled in the heart it may begin to clot, and then the clots may end up in your brain as a stroke.

So yes, I'd get tested. Some internists will do the Holter monitor but you can see a cardiologist too, for this. A cardiologist will most likely do a tilt table test too.

Thanks Sally,

I feel really bad for you, it sounds like you really have had a rough time with this!
I have a heart rate monitor, but it only shows the avg and max heart rate. Guess I need one that shows the lows.