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Ttt-5 Min


Auntwinnie
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I was so excited to have an appointment today with a neurologist that specializes in Autonomic Function. I wasn't sure what to expect as this was set up by a neurologist that I saw in Jan-I wasn't sure what they were looking for or what tests they were going to perform. When i got there they took me into a room with a TT so I was thinking great-here we go. He explained they would do 4 tests. One was a sweat test, one a controlled breathing test breathing, one a test where I blew against a pressure and then a 5 min TTT. they had difficulty getting a baseline on the sweat test and dried my leg a few times then decided to perform the test anyway. Then they couldn't get a baseline on my finger BP cuff because of my raynauds-but also decided to proceed. I couldn't see all the numbers but my heart rate was around 70 when resting and went up to 95 average for most and the blowing one around 100. During and after the blowing one I was very dizzy and bad head rush. They put me up for the TTT for 5 min. and my heart rate went around 95-100. We finished the test and the dr sat down at that point and asked about my symptoms-he asked specific questions about thirst, SOB, what causes me to be dizzy. I know I have most of the symptoms. after that he said he doesn't think I have an autonomic issue-he doesn't think I am developing one and that perhaps I am deconditioned from having less mobility due to my scleroderma. He recommended I increase my exercise tolerance slowly by increasing the strength in my legs-like pilates. I just don't know waht to think. I didn't know about this appointment until yesterday. A couple months ago I went to my family dr with info on POTS combined with my symptoms and he began a referal to a dr in Hamilton that specializes in POTS. My husband and I are wondering if I should keep that appointment and have the TTT redone by him. Id love input from ANYONE about what to make of this appointment. I don't have any numbers right now-I will get them when he sends the written report to my family dr I hope.

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This is my personal opinion just based on reading your paragraph and how I would interpret it if it were me - he can't technically diagnose you with POTS because you didn't meet the clinical 30 bpm rise on the TTT. You just missed it by a few beats it sounds like - so he's saying in laymen terms "well you're close to having POTS so you should try to prevent it getting any worse."

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Thank you for your responses. My husband and I both walked away saying we should be happy to not be diagnosed with this - however it still leaves me with no diagnosis and horrible presynocope that is making it hard for me to live a normal life. Over the past year I have been consciously increasing my activity level trying to get into better shape and because everything I read is that no matter how crummy I feel I have to work on increasing my cardiac tolerance. Has anyone else had a TTT that was only 5 min and with no blood drawn or medication given.

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Guest Hanice

Im so sorry. I missed the 5 minute part. I guess that is kind of of strange.. they should at least hung around to see what happened even if you didn't immediately fit into the pots catagory. Did they suggest a stationary bike?

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Cupcake momma. It was In London. Very nice people just not what I expected. Hanice yes he did suggest a stationary bike. I have been steadily increasing my cardiac activity level over the last year-I am a very busy mother of 5. I don't sit around. I am overweight but not horribly. I am adding more specific exercise but as of yet it hasn't made things better.

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Some of us do not meet the criteria for POTS (hr increasing at least 30 bpm on standing) every day--symptoms can be quite variable for some people. Because the results they got in 5 minutes sound borderline (very close to criteria for POTS) I think I would question whether 5 minutes was enough time to determine a diagnosis and also if it should be tested again.

Can you take some hr measurements at home (sitting and standing) over the next week or so and share them with a specialist?

I think another consideration is how you feel. If you are feeling poorly, you need answers and treatment. Exercise is great, and will likely help improve your symptoms, if you do have POTS, but it may not be enough for you.

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If you are dizzy, have presyncope, increased HR, etc and nothing else has showed up on other various tests, I'd say that you surely have POTS or some other form of dysautonomia. It's not normal for the HR to increase like that as far as I am aware. There is a normal jump but not that much. I know how you feel and having kids as well, it's tough and living a normal life is SO hard. I really hope this DR can help you to feel better!!!! good luck

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I had my autonomic testing done at the Hamilton clinic and suggest that you keep that appointment. From what you write, I think the Hamilton clinic does a more thorough TTT. It typically lasts 15 minutes, unless you pass out earlier, and it also involves blood work so you don't get the results immediately. Even mild autonomic dysfunction can lead to strong symptoms, so I think it is best to find out for sure whether you have any autonomic dysfunction.

Any exercise you can do is also very good. Just start where you can and try to work up slowly from there.

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I've never heard of a 5 minute TTT. My son had one for 40 minutes in Cleveland, and 10 minutes at the Mayo Clinic. My daughter had one this year in St Louis for 40 minutes. In my opinion, 5 minutes is not a very conclusive test. If you can have another one done for a longer period of time that would be more conclusive of actually ruling out POTS.

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Is your doc willing to treat you based on symptoms? I personally think people can get too caught up in the strict definitions of different types of dysautonomia. Testing gives them a direction to go in as far as treatment. My HR didn't make it to 30 beats but I'm still on a beta Becs it controls my symptoms.

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