September 10, 2015 at 1:12 pm #898
I’m 50 y.o. now. In my 20’s, I complained of unexplained nausea, constantly. They found no good reasons for it, after many tests. They put me on Compazine, and I used it for five years before I started getting nauseous from the medication. I also became very motion sick during those years. I still have to be the driver of the car, or I cannot go. I also had, since about 20 years old, heart palpitations and nearly fainting during those episodes. I was told it was MVP. I had a few food intolerances, too, such as to wheat, milk, strawberries and rice. My digestion seemed sluggish, and I couldn’t tolerate large meals.
Fast forward to my early 40’s, and I got very ill with new symptoms. I began feeling short of breath, feeling like fainting, brain fog, tinnitus, migraines, more nausea, unexplained coughing, and a strange pressure in my head that seems to be just above the back of my throat. Not to mention that my BP is chronically low, such as between 89/58 to 100/60. I’ve developed food sensitivities galore, am sensitive to all sorts of odors, and now also get ill from EMF’s and EMR’s. If I’m having an anaphylactoid type of reaction, my BP might go to 120/80, and then the doctors think that it is normal…but truthfully high for me. My body temp swings from 97.8 to 91.3. I have been noted, in doctor’s offices to have arrhythmias. Also, in 2012, I was told by a cardiologist that my echo shows no MVP after all! So, my heart palpitations and arrhythmias are not from MVP.
So, I had ANS testing, three weeks ago. It came back negative! I was very upset when I heard this. After all these years, I want to know what is going on. I’ve been diagnosed with PTSD and also Multiple Chemical Sensitivities, but I know that in both cases, there is a neurological issue going on, and when I look up the symptoms of dysautonomia…it really hits the nail on the head. I have almost all the symptoms.
Three weeks later, and I still feel over-stimulated from that test. I am having more episodes of my worst symptoms, and the volume was turned up on them. I went to my neurologist today, and she says she doesn’t think that the test could be wrong. I told her that I almost faint from sitting to standing, and that has only been since the ANS testing, and she said it is because my blood pressure is low. She suggested I eat more salt. (You’d pucker just watching me salt my food! Imagine if I wasn’t salting?)
Could the ANS testing have been wrong? I certainly felt ill enough during that test that I was certain it was going to show positive for dysautonomia. They noted on the test results that I had, “Orthostatic Symptoms” but that there is no evidence of autonomic nervous system impairment. However, it was noted that I had arrhythmias during the tilt table test and one of the breathing tests.
The neuro is sending me to a cardiologist. Is there a better way to approach these doctors to have it looked at more seriously? The neurologist said that a vagus nerve impairment wouldn’t show up on ANS testing. She says she doubts I have VN impairment, but I disagree….with all of the issues I have going on….it is very possible. The PTSD alone could’ve put too much overwhelm on the vagus nerve, no?
Thanks for the help, in advance. I know that this got long.
FLSeptember 10, 2015 at 1:16 pm #5653
Oooops, I meant to put this in the POTS section of the forum. Can it be moved there? Thanks!September 11, 2015 at 12:41 pm #5654Dr. DianaKeymaster
Hi FL, my ANS testing (except for the TTT) was also negative. That is how I knew I didn’t fall into their usual categories for autonomic dysfunction. Do you have a copy of the book? If so, you’ll know that years ago, I read two large textbooks on dysautonomia, but my kids and I did not fall into any of the categories discussed in the books. That is when I knew we were on our own in figuring this out — something (or many things) were getting missed. Starting at the beginning, you sound like you have many symptoms of high intracranial pressure. Have you been able to try Diamox to see if that gives you some benefit? 😉September 24, 2015 at 4:54 pm #5659
Hi Dr. Diana! Thank you for the reply. Sorry it took so long to check in. I have not read your book, yet, but now that I know you have a book, it is on my list. Thank you for letting me know. I haven’t tried Diamox, but will look into that. I can’t usually tolerate any medications.
UPDATE: I went to the cardiologist, today. He barely looked over my paperwork, then came over, took my pulse, seated, and asked me to stand up, again. He then asked, “Have you ever heard of POTS?” I was stunned! I replied that that is what I think I have. He said he thinks I might have it, too.
Then, he pulled out the report from the ANS testing, and he said that they made a negative diagnosis on dysautonomia based on what my blood pressure was doing, but he sees that my heart rate WAS an issue during the test, and he noted that right there in his office, my heart went from 80bpm sitting to 115 standing, in just seconds after I stood up. He said that isn’t supposed to happen, and that my arrhythmias during the ANS testing, 6 weeks ago is also telling. We’re doing and echo-cardiogram and 24 hour heart monitor, next week. He is leaning toward POTS, though.
So, I may have my answer, soon, and then I will be able to get on with doing whatever treatments I need to do.
Oh yes, and he also suggested that I might want to look into Mast Cell Disorder. He said he had one other patient with POTS who got a lot better when she started to treat for Mast Cell Disorder.
This is all very new to me, so I have a lot to learn. Thank you for having this place to exchange information. It is invaluable!
FLSeptember 26, 2015 at 10:42 am #5660Dr. DianaKeymaster
So good to hear from you! There are many things in the book that may help you, as many of us show a similar presentation. You’ll read why I do not think mast cell activation is the heart of the problem for many of us, too. Please keep us posted on your progress!:)
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