Cardio Tilt Vs Ans Tilt

[Becia]

Apparently there is a big difference on these. Never knew it until yesterday.

Had my last day of testing at Cleveland Clinic yesterday, with a QSART and a ANS tilt table test. I had been without Midodrine, Florinef, and my claritin for three days, and the drive was miserable, except for the fact the driver put the rock music on and I was happy passing out.

I had failed my TTT back in July when I was diagnosed, within 30 seconds. Couldn't get a BP, heart went from 70 to 170 like BAM, and I was close to going out when they pulled the plug.

Yesterday, they had me doing all sorts of breathing work before they tilted me, and I was certainly more wired up than I was with the first one. The tilt was the worst, but it was only for 10 minutes. I almost passed out near the end, but they got me down and told me I did make the full 10 minutes.

I asked about my BPs and HRs, and asked since this test was done differently than my last, what is it she is looking for, because my BP's were in the "normal range" (120 systolic, but they were falling, and my last one they considered a "bottom out" reading) and my HRs were showing growing tachycardia, but if they weren't looking at the cardio issues, what autonomic stuff is there to see? The tech's response was just simply "we're looking for autonomic changes." Would that be how the BP and HR are corresponding? I'm not sure what was supposed to show autonomic issues here, I guess i'm still thinking of cardio issues.

My QSART had me CRYING. Oh, my word, I think I would have rather gotten another tattoo than go through that (i have two, done years before this issue), and the doctor supervising everything thing thought I was crazy. The tattoos just felt like light scratching, this was searing, burning, sharp pain that hurt so much I was bawling. But I made it through. I'm confused on what that's supposed to show though; I feel like I should know the answer, but I honestly don't remember, so can anyone enlighten me?

Slowly weaning back onto my meds to avoid slamming my system with so much, and end up ill-er than I already am. Not looking forward to being back on a double dose of Florinef, and called my doctor to give him my numbers to see if he might agree to let me keep it lower. Hate those headaches. It was nice not having such a bad one the past few days.

Here's hoping this stuff shows something... I hate traveling so far, for something so fast and brief, because then you gotta travel back, lol.

[Chaos]

Glad you survived all your testing at CC.

The QSART is to measure your sweat reflex which is a way to measure autonomic nerve function.

I didn't do the 10 minute TTT at CC because I'd had such a bad reaction in the cardio version earlier in the day. I know at Mayo though when they do the 10 minute neuro version they measure beat to beat BP/HR changes as they tilt you. Maybe CC does the same. They are able to see specific types of changes that correlate with various issues according to my neurologist.

Sure hope you get some answers after going thru all the testing. Hopefully they'll have some helpful recommendations for you.

[Becia]

I still live in fear that this doctor is gonna tell me I'm fine, when I know I'm not, and I've had other tests to prove this. This TTT came after many months of medications, and working hard to sit up and stay up (depending on how bad a flare is, I can pass out really easily), and I looked at the readings and they were a "normal bp range" type of number, which I haven't been in ages because of meds. All I could think of is I'm still feeling all these symptoms and this basically tells her I'm fine.

The doctor I'm seeing there used the words somatization disorder or conversion reaction in my last transcription, which have me extremely freaked and mad. I wouldn't wish the symptoms I've dealt with on anyone, much less imagine them for myself. I imagine myself biking along the city bike path, running and playing soccer with my nieces, and working again. Not crying in the shower because the water hurts me, passing out because I merely washed my hair and my hands were above my head.

So yeah, I'm hoping these tests show whatever they are supposed to show. My friends keep saying if they are negative, that's a good thing, it's something else, but I'm just afraid to the doctor, she's just gonna think I'm crazy.

[Gemma]

Hi Becia. The way you decribe how you felt during testing and that you almost passed out, i am pretty sure it will show something. I on the other hand had a good day while doing testing st the center I visited and was told that my symptoms are not of the autonomic dysfunction nature, but could be something else. Although like almost 10 doctors say that it is dysautonomia. I have checked everything else posible, so what else can it be, something thats hiding really good . I started thinking maybe its just CFS, but I do not match all the symptoms.

Anyways, wait for the results and dont worry for now. Thr doctor at the clinic also told me that I dont have dysautonomia after my autonomic testing showed normal. She basicly wrote me off, saying I need to look somewhere else. But few days later my blood catecholemines came back and my NE inreases when I stand up, so thats abnormal.

My local neuro doc said that POTS sometimes can not be diagnosed by testing unless it is a very severe case. I have good days and bad days and also never passed out. So if my test is done on a good day, it will show negetive. Plus the technician was talking to me thruout the who,e test and I think my results are a little off, because I noticed at home when I talk during the time measuring BP, it either gives me error or it show slightly higher HR. I told that to the doctor but she didnt care.

I hope you will get some answers and some good recomendatins. Keep us posted. I am thinking of going to either Cleveland or Mayo next. Cleveland is much easier to get appointment. Were you tests prescheduled already? And do they allow to see other specialists like Mayo does, or just one doctor?

[Racer]

My neurologist explained to me that the main difference between the cardio TTT and neuro TTT was the specialty of the techs and dr doing the test and interpreting the results. Evidently they cant have neuro and cardio techs and doctors in the same room doing the same test... that would be to crazy and conserve to much time and money.

I fainted during both the cardio and neuro TTT. The cardio TTT was positive or negative according to if I fainted or not, and they left the table up till I was totally unconscious. The neuro TTT they wanted to keep me up as long as possible, but avoid me fainting. Unfortunately I couldn't speak a word once I reached the point of nearing faint, and they couldn't get the table down fast enough.

I thought the qsart was very painful also! I am not sure if the level of pain is normal. I rank it up there with the pain felt pealing bandages off a bad burn.

[Becia]

With my cardio tilt, within 30 seconds, they had their answers, and put me down before I passed out. This time, i managed the entire time, but felt VERY symptomatic for the 10 minutes, which gave me some anxiety no doubted. I just know the feelings I got when they tilted up, and even the feelings I had when I tilted down, no cool, and I'm hoping that gives whatever answers we need to see if this is bigger than POTS.

I had been told some are more sensitive to the pain in a QSART, and I was on that level... all I know is it was horrible. The entire day was actually the kind of stuff that makes me want to throw in the towel when it comes to further testing. I'm trying to figure out in my head what is it I'm hoping they will find, if it isn't POTS, if it is POTS, whatever. I guess I'm wanting to customize my meds and care a bit more, so I can become more managed with this, instead of the up and down cycle I've been on since July. This will make the third place I've gone to figure out further, and I'm honestly just tired. Really, really tired.

[Becia]

Hey Gemma,

For Cleveland, I was referred there from a neuro that saw me as an inpatient in the hospital, and the ease of appointment once my insurance cleared it was great. I unfortunately had to see the doc first, then come back for tests later because I needed to be off certain meds at certain times before them, and now am waiting for the results to be all back and finalized before I can make another appointment to check in with her again. I'm wishing I could do this as a phone call next time because travel is 4 hours one way for me, so it makes for a very long and hard day and recovery period. No word if they can do that next though, need to make some phone calls this week.

[Gemma]

Keep us updated with the test results.

[IceLizard]

Hi Becia,

I know you have gone through a lot and must be so, so tired. I hope these tests give you some answers. After all the trouble they have put you through, you deserve it. (And no, I did not know there were 2 types of tilt table tests, thanks for the info )

Best wishes!