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Dysautonomia


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Is anyone here dealing with dysautonomia? Two doctors have suggested it, we see a specialist in two weeks. My teen is having trouble regulating pulse, bp, and temp--during one appt, his temp was 96.7! Blood pools in his hands and feet. And, he's lost 55lbs in a year. Lots of other sx, too.

 

Could this have been caused by PANDAS? What is the treatment for it?

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Is anyone here dealing with dysautonomia? Two doctors have suggested it, we see a specialist in two weeks. My teen is having trouble regulating pulse, bp, and temp--during one appt, his temp was 96.7! Blood pools in his hands and feet. And, he's lost 55lbs in a year. Lots of other sx, too.

 

Could this have been caused by PANDAS? What is the treatment for it?

Can be caused by lyme and co-infections. Google disautonomia + lyme

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Yes, I have severe dysautonomia. They aren't exactly sure what causes it but I see a dysautonomia specialist and he suspects viral but I guess it could be any kind of pathogen triggering the immune system then causing auto-immunity. Almost all M.E./CFS patients have this suspected b/c the body is attacking the CNS. I don't know.

 

It is best to see someone who specializes in dysautonomia b/c a regular cardiologist will just tell him to exercise and drink fluids. Has he had tilt table test to specify what type of disorder it is? I have hyperadergenic POTS, which is a bit different than regular POTS.

 

I am taking beta blocker, sodium chloride tablets, using compression shorts, and keeping feet elevated as well as drinking things with electrolytes - that is very important. I think the biggest problem we face is retaining fluid but I was no able to take florinef due to side effects though it can be very effective. I am looking into other ways of retaining fluid: possibly desmopressin or licourice but have to run it by doctor first.

 

I wouldn't look into much of what causes it b/c there are so many theories, it's mind boggling. Essentially, it is malfunction of the CNS in connection with auto-immunity. Another article I read recently said that physical trauma, emotional trauma, or autoimmune disease causes it. For me it was extreme stress coupled with viral infection and already having CFS.

 

I saw a normal cardio in my city and he told me he doesn't use medication just extreme exercise and when I told him I am basically bed-bound he told me "I know it's hard but you have to have the will." So check out the docs you see before-hand and go to DINETS to find doctor recommendations so you won't be let down as well as ratemds.com. I had tachycardia 24/7 even in my sleep before I was given beta blocker, so meds can be helpful; non invasive is salt tablets, increase salt intake, and electrolytes.

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There are other medicinal treatments such as midodrine but I hear the most effective is saline IV infusions which are expensive and have to be prescribed by dys. specialist then approved by insurance. Best of luck.

 

I am only on my 3rd appt. with dys. specialist though I've had this for 5 years.

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  • 2 weeks later...

A good place to start "from home" would be:

 

- compression garments (recommend shorts)

- increased liquids with electrolytes

- using sodium chloride tablets from a local pharmacy (dissolve in water and use whenever drinking for meals)

- elevate feet whenever sitting and sit whenever possible

- take breaks through-out the day and lay on couch - get feet up (gives heart a break)

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You'd have to research dysautonomia. But typically we have terrible tachycardia especially upon standing and walking. When we stand our blood pressure drops, heart rate shoots sky high, dizzy, and fainting. I have a type of dysautonomia where I had tachycardia 24/7 even in my sleep. It's a huge malfunction with the CNS. The only real way to test for it is to get a tilt table test.

 

When I was tilted my heart rate shot up to 145 bpm and I started fainting. The blood rushes from the head quite fast and pools in our legs and feet which is why compression garments help.

 

There are different types of dysautonomia. Check out DINETS and you can read about them.

 

Basically, for the past 5 years, I have been running on adrenaline and crashing all the time b/c of this dysautonomia. Can't sleep either. Can't retain fluid (go to the bathroom all night like tonight). Anything that retains fluid helps - sodium and electrolytes.

 

It came on suddenly for me, except that I remember being under an insane amount of stress. A lot of people have fainting episodes before getting diagnosed.

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