missy

Normal TTT - what now?

4 posts in this topic

Hi all,

I have hEDS, Chiari malformation, mast cell problems, celiac disease + a few others. For years, I've had fatigue, syncope/pre-syncope, blood pressure and heart rate issues - my usual blood pressure was 90/60 and would frequently drop, especially during mast cell reactions. Multiple doctors have theorized dysautonomia was the cause, and 2 years ago a doctor diagnosed me with orthostatic hypotension. Last week, after waiting almost a year, the doc called me up to have a tilt table done.

There was 15 minutes of standing, then another 15 minutes of standing while they administered isoproterenol. I had been having an incredibly good day and had few symptoms during the test - I barely felt like I was standing, I was resting on the bed so much (I'm morbidly obese and I wonder if that affected things). My heart rate did not meet the requirements for POTS, and my blood pressure remained stable, so they have listed my results are normal. I have no idea what the actual BP/HR measurements were - I will find out when the doctor compiles the report in a month. I did not actually meet the doctor or get to discuss any of my issues - I was just sent in for the tilt table, and since my results were normal, the doctor elected to not meet with me. No follow up. I do now my heart rate got pretty high during the isoproterenol portion of the test, because they told me it was too high and they were going to stop the isoproterenol and bring my HR down. But in all, I have more symptoms in just a few minutes of standing on my own then I did during the TTT.

I am completely devastated. I know I have dysautonomic issues and the orthostatic intolerance has worsened incredibly over the last 6 months. I used to get daily chills from blood pressure drops but my blood pressure has evened out to a normal reading and not caused many issues since starting treatment for mast cell a year ago (max doses of H1, H2 blockers and sodium cromolyn) - at least, that's the only thing I can think of that would have improved my life long history of low blood pressure. My heart rate continues to bother me and the week after the tilt table was the worst I've been, autonomically speaking, in a long while - my swallowing, breathing, heart rate, digestion, headache, nausea, etc affect me daily but were extra awful. However, I am considered to be fine.

Are there other issues that cause similar problems to dysautonomia but aren't dysautonomia? Why would the tilt table be normal when my history is filled with dysautonomic problems? I'm not in the US and this doctor is our only specialist, country wide, so I can't even see another doctor or have another tilt done. 

I have been getting increasingly worse for the last year and all my tests keep coming back negative and I'm at the end of my rope. Any thoughts or suggestions welcome.

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POTS isn't the only dysautonomia, so you could have a different diagnosis in the category.  The link below lists dysautonomia disorders other than POTS.

http://www.dysautonomiainternational.org/page.php?ID=35

Your test may not have been done correctly, may have not been interpretted correctly, or may have been done on an unfortunately asymptomatic day.

 

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I'm in the exact same boat. Apparently improperly done TTT, and my report showed only the BASELINE heart rate and blood pressure, not one reading during the test although I know my pressures were below 90. Grrrrr. Doctor didn't see me either. Thank goodness my test didn't use isoproterenol because I don't think I could handle it. I can't get in to another doctor until August. My TTT was in January and I didnt get results until March or April.

I'm also getting worse and worse. I hope you find an answer as well. I'm thinking I have cerebral hypoperfusion which they did not check for. Also, the stress of getting to and around Boston, parking, trying to stay on time, finding the place in a rush... all of that improves my blood pressure. It was definitely higher because of all that, and I bet your situation was similar.

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I had a TTT done in 2012 and it was supposedly normal. Even though my heart rate shot up.

last year, in 2016 I had a TTT done by an autonomic specialist and I do have POTS and dysautonomia for sure. If you think you have POTS, I recommend buying a blood pressure /heart rate cuff for your wrist. Omiron is the brand I use and its usually $50 you can order online. Its pretty accurate so start taking readings and recording. If you give me your readings, I can help give you some direction.

Take readings resting, then after 3, 6 and 10 mins standing. If your heart rate goes up 30 or more beats a minute then you have POTS. Also look out for your b presdure bouncing around because in my experience that can make you feel poorly. If you do have issues, work with your doctor and show him. Depending on results perhaps he can recommend a beta blocker or other appropriate med.

getting a diagnosis is first step and easy part but finding right meds is hard. I am diagnosed but still not well. Also if you have a holistic doctor that will look to see whats causing your issues perhaps you can gey to root of problem.

you can message me personally if you have questions. Thanks

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