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About missy

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  1. 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.
  2. Hi everyone! I've been relentlessly googling as the waitlist to see an autonomic specialist in my country is a few years long and I figured I better educate myself while I wait. I've been sick for most of my life but other symptoms/issues took the forefront and my autonomic symptoms were never my biggest complaint - until recently, when they've begun to ruin my life and I had to stop working. Because I have EDS-hypermobility and a provisional MCAS diagnosis, I've been referred to the autonomic specialist for POTS testing as they usually go hand in hand. But in my research about POTS, I came across AAG and how one of the symptoms of AAG is Adie's tonic pupil/pupil dysfunction. Does anyone know how often serious pupillary autonomic dysfunction/damage would be seen in other forms of dysautonomia or is it just AAG? I was diagnosed with Adie's tonic pupils 10 years ago, and both my pupils are permanently fixed and dilated - they don't react at all, they've been totally "paralyzed" since I was 15 (I'm 25 now). I've always felt the Adie's was connected to something we were missing because it seems like too weird of a coincidence otherwise. However, my autonomic symptoms aren't overwhelming severe; there are good days and bad, but up until a few months ago, I was mostly able to work full time and live kinda normal life (in between surgeries and medical appts, that is!). I have a large list of symptoms, but the most relevant are temperature regulation issues, postural dizziness, pre syncope, postural headaches, bouts of tachycardia, some bradycardia, shortness of breath, fatigue, frequent urination, nausea, abdominal pain/GI issues, etc and OH (diagnosed last year, my usual blood pressure is 90/something). Would AAG or any dysautonomia cause an elevation in inflammatory levels like ESR? (A shot in the dark but I thought I'd try!) Could POTS (probably a more likely cause for my issues) still be connected to my pupil problems? I appreciate anyone to takes the time to read this mini novel - I'm so sorry it was this long!!! Thanks for any insight you may have, I can't tell you how much I appreciate it. Have a great day!!!