Had My 3 Hour Autonomic Testing Today..

[mjan]

OK..I get a great new neuro ...the ONLY one in Wisconsin with an autonomic testing lab. Plan to argue that point with my insurance as he will end up costing me more..anyway.. He orders these autonomic tests.

I HAD a TTT before by a cardio/physio kind of MD. IT was postitive. BUT today I a different version. THey dont use that med that accentuate your auto symptoms. This they hooked me up to a computer where you finger AND your arm were constantly recording you BP/HR. Then he had me blow into this device and try to stay 10 secs with the dial around 40. That was a little like blowing out your brains..but not that bad. Then he tilted you to 60 degrees. NOw I got my symptoms but I came INTO the test with dizziness...headache..had to stay there around 15 mins. Its not pleasant.. and I was afraid that I would get WORSE symptoms cuz being off my beta blocker was already causing me such high BP/HR and dizziness. But.. I survived.

Next was a QSART test.. any one know about this?? ITs a provoked sweat test where they wrap these devices around your foot..leg..arm.. this device that holds Catecholine sp? and then its pressed into you with this little electrical current. It measures your sweat the size of an eraser he said..with that C chemical. What is THAT for??

Next is the FUN part!! The TST or thermoregulatory sweat test..where you wear this horrible paper 2 piece bathing suit..and lay on a comfy table in a very warm room. THey keep taking your temperature until it reaches a certain point.. or.. as he told me.. you cannot stand the HEAT LOL any longer.

OH but first they dust you with the die..its light orange but then turns deep purple where you sweat. Its a STAIN that takes a lot of scrubbing and several days to weeks to finally get it off your skin. OH.. did I mention that they TAKE PICTURES of where you are purple???? So cute..

Ok.. the tech keeps coming in to check on me..take my temp..but noticed I was not turning purple.. (not sweating yet). Came in again.. and again.. still not sweating. It took nearly the whole test or when I reached that correct temp before I started turning purple. Its a MESS to shower and get off..but they give you lots of times..towels.. etc.

So.. who knows about this .. what does the neuro learn from the results??

Thanks, Jan

[janiedelite]

Hey this is fresh in my mind since I'm still at Mayo and did these tests just last week! Wasn't the sweat test horrible??? I had to do a 3-hour EMG (where they put needles in your muscles) and I still prefer that to the sweat test. I was really cold at the time of the sweat test and it took them over 1 and 1/2 hours to heat me to 100.4 degrees. I drank a liter of water right after the test (I turned all purple), but due to being off antinausea meds, antihistamines, and advil I spent the next night vomitting with a migraine. I was so sick my hubby wanted to take me to the ER, but I got him to just call the on-call neurologist instead who told me to take tylenol (I couldn't take anything else without messing up other testing).

My TTT showed a 40-50 beat increase in my pulse and diastolic hypertension. My valsalva test (where you blow in the tube) showed phase 4 overshoot (my BP was over 200/100). My QSART was normal. And I sweated normally. Basically my neurologist said I have hyperadrenergic POTS but that my autonomic nervous system seems to be functioning fine.

I recently posted under the topic "appt with Dr. Fealey at Mayo Rochester" about all the other tests I've done and what they've shown.

Take care, Janie

[julie f]

Hi Jan,

I think I was at the same place and had the exact same tests. My test results were not off the charts enough to get a whole lot of feedback. They did suspect that I had sjogrens disease and sent me for a lip biopsy to confirm that diagnosis. I wasn't real thrilled with the blue bikini either. I did turn purple, and looked nasty. When I had to blow into the tube, I kept telling the nurse it was making me more dizzy than ever. Luckily she was sympathetic, but I still continued with the test. After all was said and done, I felt frustrated because I basically was told the same things I had heard before. Yes you have a chronic illness, here are some meds to treat your symptoms, and there is not much else we can do right now.

Hopefully things turn out better for you.

Julie

[mjan]

Hi Jan,

I think I was at the same place and had the exact same tests. My test results were not off the charts enough to get a whole lot of feedback. They did suspect that I had sjogrens disease and sent me for a lip biopsy to confirm that diagnosis. I wasn't real thrilled with the blue bikini either. I did turn purple, and looked nasty. When I had to blow into the tube, I kept telling the nurse it was making me more dizzy than ever. Luckily she was sympathetic, but I still continued with the test. After all was said and done, I felt frustrated because I basically was told the same things I had heard before. Yes you have a chronic illness, here are some meds to treat your symptoms, and there is not much else we can do right now.

Hopefully things turn out better for you.

Julie

YEAH I wondered what it will show. I DID NOT seem to sweat..for a long time in the hot room. But what a mess to clean up. ~!!!

Yes he suspects I have Sjogrens too. Heard that the lip biopsy is not a reliable test and it can leave your numb. Did you have that lip biopsy yet?

BUT I noticed that even tho I was not sweating much or at all my EYES and MOUTH got moist!! I have to take a pill for saliva..my mouth is so dry..and Restatsis for my SEVERE dry eyes. I also have Dry EARS.. go figure. BUt its a source of infection as I do not produce enough wax.

Lets keep in touch

Jan

[julie f]

I did have the biopsy in Milwaukee in October. I do still have some occassional numbness in that area, but it is not too bad. I was really worried at first, because it was numb for a long time. Do you know if there are any support groups for all of this craziness in the Milwaukee area. I live north of Milwaukee.

Julie

[all4family]

Did anyone have trouble on the breathing test? I know it was hard, but I couldn't get my number past 20. The lady doing my test said not to go past the 20, because I couldn't. Just wondering.

Suzy

[mjan]

Did anyone have trouble on the breathing test? I know it was hard, but I couldn't get my number past 20. The lady doing my test said not to go past the 20, because I couldn't. Just wondering.

Suzy

HI Suzy!!

YES at first I had a hard time getting UP to the 40..then sustaining it. It seemed to finally get up to 40 and it deflected then rather quickly. When he told me he needed a good 10 secs to measure.. I really really tried!!

Did your tech.. yell and cheerlead you on?? and ON??? LOL..

Well maybe the fact that you could not even DO the test will tell them something. Let me know ok?

Jan

[mjan]

Hi Jan,

I think I was at the same place and had the exact same tests. My test results were not off the charts enough to get a whole lot of feedback. They did suspect that I had sjogrens disease and sent me for a lip biopsy to confirm that diagnosis. I wasn't real thrilled with the blue bikini either. I did turn purple, and looked nasty. When I had to blow into the tube, I kept telling the nurse it was making me more dizzy than ever. Luckily she was sympathetic, but I still continued with the test. After all was said and done, I felt frustrated because I basically was told the same things I had heard before. Yes you have a chronic illness, here are some meds to treat your symptoms, and there is not much else we can do right now.

Hopefully things turn out better for you.

Julie

Yes Julie.. what else do they do? You have a chronic illness..and meds will be the treament. I DO see an amazing nutritionist who has this unbelieveable tool that measures our electrical system via autonomics. He has been trying to BUILD UP my systems.. with whole foods that are ground into tablets. These foods are much needed to help with any area your brain or body systems need to be helped.. detoxed from heavy chemicals..or reduce inflammation which causes many of our symtpoms. He cannot diaganose or CURE in any form..but man has he helped.. alot. I just dont seem to sustain these improvements but I would have been much much worse if I had not had this nutritional program. In fact my last 2 neuros have told me to return to him as they could observe the difference once I did.

Lets stay in touch.. compare experiences if you do not mind..do you? I don't want to intrude.

What are YOUR symptoms?? My newest are vision..focus problems. AND even on my beta blocker I am getting breakthrough symptoms..tacky..high BP..keeps going higher and higher than before. I have muscle problems for years..and pain issues. MOST are manageable. But when I SPACE out.. I cannot work.

Stay in touch..

Warmly, Jan

[ajw4790]

Hi,

I just wanted to add an answer to what the QSART is for. It tests for small fiber neuropathy (autonomic and sensory neuropathy). EMG tests for large fiber neuropathy (motor neuropathy). I didn't have the other sweat test, so no stories... I had a breathing test, but I do not think the one you all mentioned. So, sorry I don't have much else to add.

[mjan]

Hi,

I just wanted to add an answer to what the QSART is for. It tests for small fiber neuropathy (autonomic and sensory neuropathy). EMG tests for large fiber neuropathy (motor neuropathy). I didn't have the other sweat test, so no stories... I had a breathing test, but I do not think the one you all mentioned. So, sorry I don't have much else to add.

THANKS for explaining that. After doing some research I think I had read that. Actually getting OFF the testing table.. was the worse. I told him that I get electrical shock like pain that shoots down both my legs. BUT it also locked up my leg muscles majorly=spasticity. I could not move my legs.. and had to be helped to the chair. It was wearing for sure. BUT when I was on the softer but firm table in the warm room where you lay and wait to sweat.. that I could get off of without my trouble.

SO.. yes he knows about my shooting pains and muscle problems. With my last neuro..I had EMG on my arms which was postiive but never on my legs which give me more symptoms.

Thanks for your response.. good luck with your health issues.

Jan

[ajw4790]

Hi,

If you are lying flat on the table that can cause that kind of reaction when you get up. I too have that kind of reaction when I get up due to lordosis of my lumbar spine etc. So, if you can when laying like that put something under your knees to help your back out.

[all4family]

Did anyone have trouble on the breathing test? I know it was hard, but I couldn't get my number past 20. The lady doing my test said not to go past the 20, because I couldn't. Just wondering.

Suzy

HI Suzy!!

YES at first I had a hard time getting UP to the 40..then sustaining it. It seemed to finally get up to 40 and it deflected then rather quickly. When he told me he needed a good 10 secs to measure.. I really really tried!!

Did your tech.. yell and cheerlead you on?? and ON??? LOL..

Well maybe the fact that you could not even DO the test will tell them something. Let me know ok?

Jan

I am glad to hear I am not the only one who had a hard time. She actually didn't cheerlead me, I think because I either came close to fainting, or I did faint. I never can tell. My chest hurt, and I ran out of air in 2 seconds. And still only got it to 18. But on my report it said that my blood pressure response and heart rate response were normal. It didn't even mention the fact that I only did it at 18. I guess for this test it is not for testing breathing. The first time I did it and was trying to get it to 40 all the blood rushed to my head, and everything started going black in a circle. Next thing I remember she was trying to get my arms down and telling me to hold real still. Comparing the tilt table to the breathing test the tilt table was easy for me. I also got a rash where the cup thing was strapped to me. The lady said she had never seen anyone react to that. I'm such an odd duck.

I'm glad you got your testing done. I hope things go well for you. Take care.

Suzy

[mjan]

Suzy.. and others.. would like to hear of your experiences with these tests.. esp the blowing one. What were the final reports??

Suzy.. even when I had got to 40 I could not sustain. I asked what the purpose was.. what would be helpful. The tech told me that I got to 8 secs finally holding 40ish..but not long enough. He needed 10 seconds sustained to measure..whatever they were measuring LOL.

So..if you could NOT do this.. dont worry. THAT in itself should tell the neuro you have problems.. ya think?? LOL

Take care.. it will be a nice journey following all of you in this journey of life..

Jan

[all4family]

Hi Jan,

On my report that I am sure doesn't have all the values on it, it says the blood pressure response to the valsalva maneuver were normal. then is says the heart rate responses to deep breathing and the valsalva maneuver were normal. This completely shocked me, because I thought if there were going to be any abnormalities it would be on that test. after doing the test I felt like I was blacking out. As I started to come to I looked at the b/p monitor, and it was 76/- which I thought was awful low, but I don't know what is normal on that test. Aparantly that was. If I get copies with more info/numbers on it I will let you know what they were. I thought the test wouldn't be positive, because I felt really well that day, and I didn't even come close to fainting. But mine was positive for orthostatic intolerance. On the tilt test it said my heart rate had exceeded 120 bpm, but didn't stay there. It kind of makes me wonder how high it is when I feel really bad. I have since gotten a heart rate watch, and can tell you it goes pretty high. In line at walmart the other day the lady was doing some kind of a price check, and I kept telling her never mind I didn't want it because I was feeling real faint. I looked at my watch because I am trying to make notes, and it was 168. It was the first time I felt really bad like that, and understood why.

I hope this helps you some. Did you get the report from your test? I want the second by second one of mine, just because I am so curious. Was the doctor the one that did the test? Or was it a tech? Mine was done by a tech. I was glad, it made me less nervous, and she was a really nice person. Just me and her in the room. Take care of yourself, and I hope you find all the answers you are looking for.

Suzy