Back From Testing- 2 Tilt Table Tests!

[ajw4790]

Hi everyone!

Welcome out there to all the new people! Many of you sound quite similar to me. I will try to answer more of your specific posts later.

I know that some people had said they wanted to know how my testing went, and it was just kind of different in general so I thought I would share.

I spent a long day doing testing at Cleveland. I was in the Neuro. ANS lab for the morning and in the cardio. lab in the afternoon. (I did learn that at least part of the lab is called the Syncope Lab- someone had asked me if I was going there and I was not sure...)

I did not get to see my dr. which I was told before I would, so that was frustrating. Also, I did not recieve everything in the mail and what I did not tell the whole accurate picture, so I was not really prepared for everything that I walked into. But, all in all I think it went well, and I really did learn that different hospitals/labs and drs do these tests quite differently. It is actually pretty amazing that there is such a difference. Going into the testing I already had a lot of tests done before including a TTT and QSART. They both were positive before as well and I was diagnosed with POTS and Small Fiber Neuropathy.

I really did question going into the testing do I really need another TTT? Another QSART? The previous ones were about 1.5-2 years ago, so some time has passed. Also, this time I was ONLY off of my BB (Atenolol), and still on Cymbalta, Zoloft, Primidone, Neurontin etc. So, I wasn't sure how symptomatic I would be still on all these meds, and I don't really ever feel the BB does much for me, and I did not miss it these days I did not take it (except for during testing!!! )

So, I ended up having a QSART (which was done quite different than my previous one- I think this one was more in depth and "old school"). Then, I did the deep breathing and Valsalva tests (these were not too bad). Then I had the neuro. TTT. I had a neuro. TTT before. I thought they were both quite different, and my overall responses to them I felt was different as well. They only tilted to 60 degrees which felt weird, I was tilted to 70 degrees at least before. They also did not strap me in well. I did not feel like I was fighting gravity as much in this position. I think my BP was relatively stable at a normal measurement. My HR I think increased significantly (30+ bpm), but I do not think it went too high or as high as my previous test. I snuck a peek at the numbers they wrote down, but I do not have the results yet. They had what I think was a resident in there to supervise in case things got dicey (made me feel better ) The dr. said something like the analysis hasn't been done yet so I can't tell you the results, but we can see why you do not feel well when you stand. (this is while I am still on TT) I thought it was nice to have a dr. look at me so seriously and say something like that- that they can see with their own two eyes why things like this make me symptomatic! She was someone that I thought- Wow! I would like her to be my dr! She also described scientific processes well, by breaking it down and talking about cells like they were "characters" and added comedy to it. It was refreshing to see a dr. with GREAT bedside manner!!!

In cardio. I had the blood volume test and ANOTHER TTT! (Yes, TWO TTT ) I was not ready for two TTT! The second though proved to be much different. It was a SITTING TTT. I stupidly thought sitting- that can't be too bad! (and they acted like standing no problem- this shouldn't be too bad). Not true! The blood volume part wasn't too bad- the IV started getting really painful when they were pushing all the meds in quickly. Didn't like having to lay still with nothing under my knees- my back kept spasming. Then for the Hemodynamic TTT they injected the radioactive tracer, sat me up to 60 degrees and let my legs "dangle" off the bed. First few minutes were not too bad, lightheaded, foggy, getting a little overheated, the WHOOSH all of a sudden I am burning up, felt I was going to puke everywhere, head spinning, very foggy feeling, very uncomfortable, and because of the test you have to stay still- I just wanted to get up and writh in "pain" and nausousness. I also was working on a migraine! It did not help the EKG machine was beeping like nuts- I was thinking, like what the HECK- I was just SITTING there! Is this for real!? Sitting makes me feel like this? After I started getting pretty bad and the monitor was going off they lowered my head (I think past "normal") and put my legs back up. Then they stood down there holding my legs up for like 5 minutes as I tried to return to normal. I know my HR shot up- not sure how much. But, the really cruddy feeling I think came from my BP decreasing quite fast- not too low (I've had lower and up and moving around), but it went from the 120/80 (ish) to 90/50 within a short amount of time. That was just NUTS! Then, I won't bore ya more, but I felt like crap the rest of the night and got so sensitive to all light, smell, movement, everything... it was pretty bad! Not fun at all!!!

But, I made it back in one piece, so WAHOO!!!

Sorry about my chattiness!!!

[Angelika_23]

Was this for the autonomic dysfunction center at CC? Or did you make an appt with a specific doctor and they ordered these tests? I am thinking about going to CC, and wondering if this is something I should expect as well...

Thanks,

Angela

[Ernie]

Hi,

Wow, that's a new one. 2 TTTs on the same day. I would not want to be in your shoes. One is hard enough.

Thanks for sharing.

[ajw4790]

Hi,

Yes, I saw a specific neurologist (PM for name if interested ), and he ordered these tests in both labs. I would not discourage anyone from going there. Overall, I thought it was worth it and that the tests accurrately displayed my "normal symptoms" in regards to what they were testing. I do not think that doing both TTT are necessarily "normal" protocol, because they had to call and check that it was his intentions to do both. I did not get the full cardio workup, so if you go there under cardiology to the syncope clinic I think the experience is slightly different. The tests I got in the cardio department are part of what they "normally" do (I believe).

I feel that the drs, nurses, techincians etc. there are much more caring and A LOT more knowledgeable than other places that I have been. I was very impressed by the different tasks in different genres of medicine that the techs and nurses were able to do (they were doing/reading blood tests, performing the tests, proficient in using IV's and administering drugs, using the machinery, and noting and doing minimal analysis of the data (reading EKG strips etc).)

I am interested if it sheds any light on anything that I did not already know, or I guess if not it backs up the previous diagnoses.

Any questions just ask!

[all4family]

Hi AJW,

Wow, what a day you had. But it sounds like you will get a lot of answers, and if nothing else understanding of what is happening. That is very interesting that they did a sitting one. I get the same problems sitting sometimes as I do standing. As a matter of fact if I sit still to long I get just as bad as if I stand still too long. I have more than once now tried sitting to feel better, only to end up going down anyway. I would be very interested to hear more about the sitting test, and how it turns out for you. I hope you get good answers. Thank you for sharing your experience.

Suzy

[firewatcher]

Way to Go! You are AMAZING to make it through all that. I hope they can find something to help you.

Glad to have you back! :blink: :blink:

Jennifer

[babettess]

Hi,

I was so glad to read your post. I am going to the Syncope Center at Cleveland Clinic on Monday. It's good to know that they are knowledgeable and understanding.

I have never heard of a sitting tilt table test. How interesting! When I went for my first tilt table test, the nurse doing the test couldn't get the heart monitor to work while I was being tilted so she finally put me back down. After she got it to work I was tilited and got to do the whole test all over again. How fun!?!? I can't imagine doing two tests purposely. I wasn't given any meds with my test though. I have't had the QSART or breathing tests at all.

Did you know ahead of time that you were going to have tests that day? I have called and asked if I am scheduled for any tests and they said no. It would be nice to know if they just order the tests at the appointment and then if you get them done that same day or if you have to go back. I will have a 5 hour drive to get there so I am going up on Sunday, but I need to know if I will be doing tests after my appointment so I can make extra arrangements for the family if I am going to get home really late on Monday night. Hubby is taking me and has to work Tuesday.

I am sure happy for you that your visit is over and that you might get some valuable information from all they put you through. Hope you recover quickly from all you endured.

Babette

[EarthMother]

Wow! That is an amazing adventure. Thank you so much for sharing the details. I could not imagine being able to go through all of that back to back ... heck, I couldn't imagine going through any of it and making it out in once piece. Way to go for you! You are a true POTS Pioneer.

Keep us posted on what the findings reveal!

~EM

[ajw4790]

Hi,

Thanks for your replies. Yes, I knew I was going in for testing. I had already had an appmt. with the dr. over a month ago, and he then ordered these tests a week or so after I had returned home. So, this time I just went up for testing.

[Rachel]

Thanks for sharing about your testing. Glad it's over for you!

I hope that the information from the tests will give valuable information to your doctors for your treatment plan.

Rachel