New Daily Persistent Headache Support Group

After looking at my symptoms and having a tilt table test a doctor diagnosed me with dysautonomia as well as NDPH. It has a wide range of symptoms all dealing with your Autonomic Nervous System (ANS). Your ANS controls any automatic response in your body including breathing, body temperature, pulse rate, blood pressure, digestion, and many other things. My symptoms partially attributed to dysautonomia are high pulse rate while standing (went from 66 to 117 during tilt table test and they get concerned with anything over a 10 bpm jump), lightheadedness, dizziness, inconsistant blood pressure, pupil dilation, blurry vision, low body temperature, and trouble thinking/concentrating. All of these are also partially pain responses to the headache.

Has anyone else been diagnosed with this?

We share some of the same symptoms! But, I do not think I'd fit the diagnosis criteria for the dys. Thank you so much for sharing.

I was diagnosed with this in my early 20's. Goes with my mitral valve prolapse. I used to be a fainter. This mostly went away when I first got pregnant / gained so much weight. I haven't fainted in years.

There used to be a mitral valve prolapse / dysautonomia center in Birmingham, Alabama. Do you mind if I ask where you were diadnosed?

LBelle

The Mayo Clinic. That was the only new information they gave me. MHNI had told me everything else they did, but never mentioned dysautonomia.

What Dr. did you see at the Mayo clinic? Did you see someone in pediatrics? We took my son there last year. He has many of these symptoms and they never mentioned it.

I saw a pediatric neurologist named Dr. Mack. He didn't mention it until he saw the results of the tilt table test. He almost didn't even do that test.

We saw Dr. Mack too. I wasn't real impressed. They didn't run one test while we were there.

we saw DR. Mack also. he was the first DR. who didn't say my daughter was faking it and actually 'got it' and gave us the dianosis of NDPH. He did have my daughter see a sleep specialist at Mayo who had her wear this thing on her wrist that supposedly measured her sleepiness during the day and verified that she was in fact sleepy! WOW! They also tested TSH. Mayo is not a good place to go for continued headache treatment but when your headache starts with in illness and you think that it's more than a 'run of the mill' headache you fell like they should be the ones with an interdisciplinary approach to find the underlying illness.

did he tell you it would go away in 2-4 years? that's what he told us. not happening.

everyone should have their TSH tested if you haven't. i saw a 'mystery diagnosis' show recently about someone with hashimoto's disease which is an autoimmune disease that destroys the thyroid gland. one of her main symptoms was headache (although it didn't come on suddenly like NDPH).

I have had my T5H tested. We weren't impressed with Dr. Mack either and I wish we could have written a complaint about about his intern.

They didin't run any blood work while we were there. We have found out since then that my sons tsh level was off. All they told us was it should go away in about two years but not to call them if it didn't.