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Autonomic Testing


Darlene
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My last trip to the mayo clinic they repeated the standing/laying down norepinephrine test (I think that was the most important and useful piece of info for me). They also seemed to be very interested in sodium levels and vitiam D(I was really low on vitiam D). They also tested for Celiac, CMV and EBV (active levels). They also did tested for Pheochromocytoma, not sure if that was via blood or 24 hour urine because of my high norepherine levels.

I also agree to try and find the underlying issue so if you have any guesses and your insurance will pay for the blood work I would get it done.

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I have dysautonomia, and would like to know the cause. I would like to be tested for diseases that can cause autonomic dysfuntion. Whatever it is, it causes alot of pain in my joints and muscles. Sometimes I get this all of a sudden burning sensation in my back and arms and feel weird. Nausea. Light sensitivity. excessive pupil dialtion. My right eye feels straineded, and see a floating blurry spot. Diahrrea just about daily. Pain that itches (itching feels like its on the inside). Numbness is my pinky and ring finger. my feet use to feel like they were burning, but that symptom finally gone away. Had a weird attack after eating something with MSG (felt like I was being electrocuted, and had an auro without headache). Can't drink alcohol (flushing/tachycardia). Eggs and Icecream make me nauseated. I can't blow up baloons or sing without feeling light headed. Mouth feels dry at times (like I can't get enough to drink). Sometimes I itch all over. Memory loss. Frequent urination. fatigue. I am sure there is more symptoms I can't think of.

I was put on lexapro and coreg, so the dizziness, and tachycardia is better. Would the meds make a standing up and laying down norpinphrine test in accurate?

Does Grubb do autonomic testing? This is who I see. Or refer me to Mayo, or Vanderbelt, or someone close to lyons, OH or Adrian, Michigan.

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I would also like to know which autoimmune disorders are the cause or correlated with POTS/ dysautonomia.?

Naomi..... what does the test you had ran "Standing and laying norepinephrine, epinephrine and dopamine and Angiotensin II (2)", what do those specifically decide or show?

Thanks

Traci

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I know for me my intial CMV infection(I got this in my 20s I guess most people are exposed to CMV and it is mild as a kid) which lingered for 9 months and was very serious was what preceeded my first year long POTS attack. I had POTS symptoms before that but they usually resolved much quicker. When I got my intial CMV infection the doctors could not believe how long it lasted. When it started to go to my eyes they freaked out, the doctors said the only cases of CMV this bad they had seen were people with AIDS(which I do not have and have been tested for multiple times because doctors always say I have a weak immune system) I was finally hospitalized. The CMV pain was very severe, every gland was so swollen and I was exhusted but unable to sleep because of the pain. I hate pain meds and the dr kind of tricked me. They said I had to break the cycle of pain and I nedded to sleep. I finally got better when I went in the hospital for a long nap. I remember them giving me a ton of fluids and then something that knocked me out. I sleept for 3 days and that was then turn around getting better from the CMV and my POTS.

I know whenever my POTS has been bad I have tested positive for high levels of active CMV and EBV. I also know when I do not get enough sleep for a few days my glands pop out the EBV levels get high. I think it is all related in some sort of bad cycle, stress, no sleep, EBV/CMV, POTS, but which causes which?

One out of town specialist brought up CFIDS but my local dr is old school about conditions like CF and CFIDS(which bothers me but I don;t have a big choice of dr's).

Traci, when I did the, Standing and laying norepinephrine, epinephrine and dopamine and Angiotensin II test it is what showed I had Hyper-Pots. Basically when I was lying down my levels were normal and then after 10 minutes of standing up the levels (espcially noreinephrine) were sky high. It is a really simple test (not sure how costly) but if you think you might have hyper-pots I would get it done.

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I think that any autoimmune condition could cause a dysautonomia if your immune system started to attack your nervous system. Some of the autoimmune illnesses I was tested for included Sjogren's, rheumatoid arthritis, and lupus. There's another POTSy here who has ankylosing spondylitis. Other underlying diseases Mayo tested me for included amyloidosis (had a fat pad biopsy), diabetes, cryoglobulinemia, lyme, thyroid issues, and many more that I can't remember. I was diagnosed with small fiber neuropathy, so they were also testing for any cause of SFN.

I stopped all my meds for several days prior to and during my autonomic testing. It's great if you can get your catecholamines drawn during your tilt testing, but what's important is that you are lying quietly for 30 minutes prior to having your supine levels drawn (they inserted an IV for me at the beginning so that I wouldn't be stimulated from being poked by the needle twice). The you stand for 10 minutes and have it drawn again.

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"Naomi..... what does the test you had ran "Standing and laying norepinephrine, epinephrine and dopamine and Angiotensin II (2)", what do those specifically decide or show?"

Well there is conflicting information about this. My understanding is if you have an elevated standing norepinephrine (over 600 I believe) and combined with TTT results, they may diagnose you with POTS. And if it's really high, they may diagnose Hyperadrenergic POTS. Mine was 1001 - Dr. Stewart thought this was very noteworthy, but didn't use the term HyperPOTS - so I don't know. There's also something in the literature about Hyperdopaminism - not sure about the epinephrine. And Angiotensin 2 is elevated? in some POTS patients.

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