Chronic meningitis vs. dysautonomia

[twilightmom2491]

My daughter was diagnosed with dysautonomia one year ago. She had viral meningitis in 07 and has not been in good health since. At this time, she has been ill for 2 weeks with excruciating pain in her posterior head, neck and spinal region. Pain meds (codeine) do not relieve it and I am concerned that the pain is not just from a dysautonomia flare but from meningial irritation or some other cause. Any suggestions for pain relief or possible causes? Her doctors can not determine an obvious cause but I know that it is more than just TMJ or a flare- it is too severe.

[zmklmom9]

My daughter has also been diagnosed with autonomic dysfunction. She had viral meningitis in 2004 and several other illnesses since then.  The Pain Rehabilitation center at the Mayo Clinic in Minnesota can teach her how to manage and lower her pain and stress levels, and improve symptoms of POTS. There is a waiting list, so get her on it ASAP.  We both went there, and we are able to function again.

[twilightmom2491]

Hi and thanks for your timely reply. She has had CT and MRI scans in the past but none recently. Before her diagnosis of meningitis- we went through two doctors and an ER visit all of whom sent us away with the thought that she was experiening migraines. I finally took her to the second ER (Children's hospital of Philly) b/c I knew that there was more to it. At first they too were saying migraines and after a spinal tap that looked clear but then the testing did reveal meningitis- despite her lack of light sensitivity and ability to tuck her chin etc. I have not had good luck or rapport with anyone in CHOP's neuro dept. b/c a couple of years back she had a right sided tremor for 6 months and they all but stated that it was just in her head. I went back to them once again after her meningitis b/c it was as if she had chronic meninigitis but they did not run any further tests and once again concluded that she had migraines despite knowing that she did have heart rate fluctuations prone to standing, dizziness etc and extreme fatigue. After another year, a NP at my Peds office recommended a diagnostic specialist at CHOP who finally nailed down the dysautonomia umbrella label- still never given a specific type though. I am going to a cardiologist next week in VA- someone who was helpful to another girl on the DYNA website so I am trying to hold out hope. She just had a slew of bloodwork done yesterday after her visit to CHOP but the specialist would not address my concern that it was a possibility that she could have meningitis on a chronic basis. Even though I know she could have these symptoms with Dysautonmia, I feel that there is something else, something more and yet no one seems to want to address it. I know that I need to learn to be more forceful but I also do not want my daughter to have to go through another spinal tap unless necessary and the doctors don't seem to feel that it could be meningitis- but she has the same symptoms and multiple people were wrong last time. However, the specialist did comment something like "even if she did have it again-how would it be treated? She recovered didn't she." Frustrating and not real helpful when you have to watch someone in so much pain. As for injury- she has not ever fully passed out, she just blacks out and grabs the wall or other objects until it passes. I am ready to consider chiropractic or acupuncture at this point. She is also so nauseus that she has barely eaten for 10 days on top of it.

[AireScottie]

It must be awful to watch her suffer so much.  Is it possible she's gotten meningitis again?  Halbashes has some good ideas; it really does sound like a case for a good neurologist.

[halbashes]

I'm sorry your daughter is experiencing so much pain.  Has she had an MRI or CT of her head?  I'd recommend seeing a Neurologist if you aren't seeing one already.  If she experiences fainting spells with her Dysautonomia, could she have sustained some type of injury?