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dizzyape

Tilt Table Test tomorrow - Is it as awful as I've read?

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I have my TTT and other autonomic testing tomorrow at Vanderbilt. I'm super worried as I've never passed out before. I'm also worried about the fluctuations in bp and heart rate.  I am working an event on Sunday and will be on my feet for 10 hours.  Does the TTT wipe you out for a few days? Just wondering what to expect.

 

Thank you!

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You will be wiped out that day, but should be 'normal' the next day, or I was. Have you been upping your salt & fluids? Don't do it tomorrow. Just be regular. The salt will take longer to get out of your system, so it is too late for that now. 

My TTT wasn't that bad and I did pass out. To be honest, I was relieved somebody in the medical field finally saw it. I felt like it was the beginning of getting help.

Good luck!

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As awful as you've read it could be, remember that it will be controlled and monitored by people who actually care and know what they are looking at. They actually want to know as much as you do. My experiences at Vandy have all been good ones. I hope they get you answers!

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I've had 3 TTTs. Only the first one was horrible (started to cry during it from the tachycardia and was bedridden the rest of the day). The other 2 were progressively better but I think that was because I was on my way to figuring out what I had and was starting to load up on salt and water.  Good luck to you.  I had a great experience at Vanderbilt. They really helped me the most.

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Well I did my TTT. It was awful and I had them stop two minutes before it was finished. I had tachycardia up to 140 and my bp got up to 145 (not sure what the dystolic was.) I am wearing a 30 day heart monitor, had blood work done to check my epinephrine and norephinephrine levels.  I will be seeing a neurologist soon.  I was given a diagnosis of Ehlers Danlos 3.  My doctor said that I definitely have some orthostatic tachycardia as well.  It's nice to have some answers but I think I still have a road ahead to get everything diagnosed.

 

 

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It depends on your POTS to be honest. I have hyper pots and when I was tilted upright I went into hypertensive crisis and couldn't speak. But I have really bad problems with blood pressure. I felt like poo for a few days but I recovered. My first TTT wasn't so bad. But my symptoms have gotten worse. I hope everything goes well!

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Glad it is over for you Dizzyape. So, EDS Type 3? Did they see any craniocervical instability? I think we talked about it before and speculated about it.

With that monitor, push yourself to do everything you can possibly do to get as many different readings as possible. It is a pain, but they need the data.

Vandy is good.  EDS 3 is a HUGE chunk of your diagnosis. It is a long road, but you made significant progress today. Congrats!

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Thank you KiminOrlando! I have been super tachy since my appointment. I am getting up to the 120's. From your experience is this normal? Is this what everyone meant about feeling crappy after the TTT? 

I'm not sure about the craniocervical instability they didn't check that. I just did the breathing exercises, TTT, blood work and got the event monitor. I will be following up with a neurologist. Is that who do the cranio instability test?

 

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Yes, that is what it was for me, and I would get near syncope very quickly, so I couldn't get up and walk around much for the rest of the day. For me, I was better the next day.

My instability was diagnosed with imaging. A neuro looked at an MRI. You need to mention your dizziness to them and if you think it relates to your neck movement, ie yoga. How did they diagnose your EDS 3? Hypermobility? I'm trying to rule out EDS 3 in me right now. Who diagnosed it? Rheumatologist? 

I just saw a neuro on Wednesday who said I was too complex for him to give a second opinion on the craniocervical instability surgery, so he is referring me back to Mayo to the original neuro, but with new imaging and diagnosis to see what he thinks now. Things have come full circle.

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I saw Dr. Muldowney at the Vandy Autonomic Clinic and he was amazing!!!! He sat with me for over an hour and talked about every symptom. I was given the Beighton (sp?) test and definitely had hypermobility. I thought my being able to bend my pinky back so far was normal and that my loose elbow skin and flexability were just traits I had. I would have never thought they were indicators of an illness! I guess that along with my TTT results and other symptoms made him certain I have EDS 3.  He also mentioned that I definitely had some orthostatic tach but not necessarily POTS.

My next step is Neuro, I will definitely mention the dizziness when I move my neck. I'm hoping an MRI will give me more answers.  

I hope you get this figured out with your original neuro! Keep me posted.  This all so new to me, I was just doing research today and found research that links POTS, EDS and Mast Cell....I'm sure i have have a lot more tests in my future.

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Dizzyape, I am glad you had a "good" appointment! I have had only good experiences at Vandy. Dr. Peltier (neurology) is excellent there and I have seen her several times. I hope you find both answers and improvement.

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