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Tests Normal???


mjan

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OK.. I had a really BAD attack while working Thursday. AND I majorly messed up at work!! I am making MAJOR errors..it could cost me my job if they add it all up. This time I couldnt fake it any longer.. my vision was blurry and focus in and out..tachy..and had to leave work.

I never received results of Autonomic testing 3 weeks ago.. so I called both the PCPs office and the neurologists. His RN called me with the results of my tests and also got set up to see my PCP in 3 weeks. My PCP is on Maternity leave and so no one read the letter from the neurologist.

I will need to get the results on paper as now I dont know what he was saying for sure. I DONT have to see the neurologist again. He wants me on Rx Clonidine as my Beta Blocker has not been working well enough to stop these "episodes" I get where my BP goes up high I get tachy..spacey..dizzy and now my VISION is burried or my focus gets completely messed up. IF bad enough.. I end up not being alert..or able to move at all.

The TT test..says I was little tachy then returned to normal. My first TT test with a cardiologist was not normal. AND my BP/HR seems to shoot UP before it drops back to normal. I do not get the really low BP. And I dont really get these changes in major ways standing..somewhat.. it all happens SITTING DOWN. Anyone else?

The Valsalva test was not too bad whatever that means.

The TST had low volumne.. sweat took too long and it was too low.. thats the one I dont think I understand..too low?

The dye SWEAT test..well.. I didn't SWEAT!!

So this RN told me to increase my SALT and fluids and stay out of the heat. Now I have high BP.. why uptake the salt?

AND.. does this mean I DO have an autonomic problem..just NOT POTS??? Which I am ok with.

He did order Echocardiogram and carotid ultrasound..which I have had but he wants an updated one.

AND he still thinks I might have narcolepsy with cataplexy..so .. I need a Mutliple Sleep Latency test to measure it and find out for sure.

I have DAYTIME apnea along with nightime..and get this.. when I get my tachy episodes..when they get really bad.. I can no longer MOVE my arms ..legs..or keep my eyes OPEN.. I look unresponsive.. or ...doped up..BUT I CAN HEAR EVERYTHING!!! I just cannot move!! I am left exhausted barely able to walk..so its not your typical narcolepsy episode where they fall sleep and get right up feeling fine. MY episodes keep me exhausted ...wiped out as my BP/HR goes up HIGH.. then drops to normal range.

So if I have narcolepsy with cataplexy its ALWAYS related to autonomic symptoms first!! Go figure

feeback Please?? I did go to a sleep disorder/narcolepsy forum and they get the blurry vision and MICROSLEEP where you are awake but pause..like an petitemal or absence seziure. I have been doing that as you do not know until someone TELLS you.

I am lost...

Jan

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Hi Jan,

I'm sorry you had such a hard time at work :( . I'm no expert, but the sweat test sounded abnormal which would mean autonomic dysfunction. My BP doesn't drop very often either, and during my TTT was alternately normal or high (up to 160/90's) and my heart rate increased about 40 points. But my sweat test was normal (that is, I sweated a ton!). The doc at Mayo said that the sweat test is a good indicator of central autonomic function, and that my venous pooling, painful skin, etc. were symptoms of peripheral autonomic nerve damage. I would think that with your sleep issues, apnea, etc. that combined with the abnormal sweat test would be red flags for dysautonomia.

Was the RN from your neurologist's office? Can you schedule an appointment with the neuro to really talk about the results and your symptoms? My mayo neuro said that my high BP (which is only high when I'm standing or doing something like talking then comes back down) is due to high norepinephrine in my system. Have you had a catecholamine test?

I was advised to increase salt and fluids because my high BP is a result of my body's attempts to compensate for my venous pooling. So if I can increase my blood volume then I'll have less circulating catecholamines. It helps somewhat but if I overdo it my BP is high and pulse is too low lying down.

And I'm sorry, but I can't remember where you were getting your tests done? Take care, Janie

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