Ttt Tomorrow, Nervous On Top Of Existing Adrenaline Problems

[Traceyf]

I am scheduled for my first TTT tomorrow at Beth Israel in Boston Ma. I am suspected hyper POTs. What should I expect to happen at this test? I am a nervous wreck lately, almost home bound the past month due to adrenaline, lightheadedness and overall lousy feeling. I had upped my klonopin to deal with day to day life but my paperwork says I need to be off it for the testing. I have also been on a beta blocker for 12 years to control migraines. I have been off that now for 1 week, and feel horrible. Anyone's help as to what I can expect during this test would be a godsend.

Thanks

Tracey

[Chaos]

It seems that every facility does them differently. I've had them at several of the "big name" places but not at Beth Israel so can't tell you specifically how they do theirs. I

In my experience, they put in an IV port "just in case they needed access quickly", had me rest for a certain length of time 5-10 minutes to get baseline readings while they were setting things up and then began the test. You have straps over your knees and chest usually to hold you in place. You should try not to move at all, which is INCREDIBLY hard to do. (Certainly made me realize how much I automatically try to compensate for fluctuating BP/HR with movement.)

They always told me not to talk other than to report how I was feeling. So pretty much you just stand there until you either feel so bad they put you down, or you faint, or they see the results they want.

I haven't had any TTTs where they did the injections of meds that some people have had.

I should clarify that these were the procedures that were followed when I had TTTs done by cardiologists. These tests lasted up to 45 minutes- in theory anyway. When I've had TTTs done by neurologists the TTTs were only 10 minutes in duration and they didn't start IVs.

Good luck! Take your meds with you as I know I really wanted my beta blocker as soon as I could have it after the test. LOL

[kitt]

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[Traceyf]

Thanks for your reassurance. My paperwork says they will test my heart rate and blood pressure in response to deep breathing, active and passive standing, head up tilt table testing, skin responses to deep breathing, and mild electrical stimuli. It also says do not eat 2 hrs before the study, and that its all non invasive and painless testing. I am assuming there are going to be additional tests to the TTT?

I just want some answers...either way!!

Tracey

[spinner]

I'll put my two cents in since ive been through all this at cleveland clinic, and because my primary medication is klonopin.

1. Be thankful you can get such incredibly advanced technology to find out whats going on. They CAN and WILL treat you if anything shows up. Theres always a chance it wont (for example, I passed the blood volume and tilt tests). You could have another more minor condition such as adrenal fatigue or deficiency. You have to keep beeing "your own physician" and doing loads of google research. I find that forums like this are easily the most helpful.

2. Make sure the person that goes with you is mentally strong. There is a certain amount of brain fog and stress in "getting around". Dont be afraid to use a wheelchair. They also have oxygen at these places if you need that. You can also call for a shuttle. The person with you should be able to carry your bag, organize your papers, and give moral support. IF its a spouse, let them go in with you to doctors so that they can recall what was said. It may be something helpful.

3. Take notes. You'll forget somthing you need to do.

4. Find a local pharmacy you trust right away.

5. THere may be multiple blood tests so SPACE THEM OUT. If you have low blood volume this can be important. Dont go in the lab 3 times a day. Go every other day and do them all.

6. Be careful of any fasting they require. Follow instructions to get the right readings.

7. Wear comfortable shoes. There can be a lot of walking in these things.

[Traceyf]

Thanks Spinner

I was tested for adrenal issues last week by an endocrinologist, I had blood drawn, then had a shot of ACTH, then blood redrawn. My results were normal. What s the test they do for blood volume? I m being tested in the autonomic lab, was told if failed the doctor I need to see for treatment has a 1 year wait!!!! Not sure what I will do in the interim as that seems absurd!