Day 53 of migraine 15 yr old daughter

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PJess
Regular Member


Date Joined Feb 2012
Total Posts : 26
   Posted 1/6/2016 9:07 PM (GMT -6)   
My 15 year old daughter has had migraine headaches at least once per day for 53 days. We have been to the ER five times, done CT scan, MRI, lumbar puncture, numerous sets of lab work, seen two different neurologists, ENT, Opthalmologist, TMJ Specialist Dentist and probably more that I cannot remember. All tests were "normal" with an exception of her bloodwork testing positive for mycoplasma bacteria (usu. walking pneumonia). She also definitely has TMJ/TMD, but not bad enough for full time day splint or braces. She never showed any symptoms of pneumonia, however several times at ER, she had severe chest pains and rapid or irregular heart rate. Some of that, I believe was attributed to all of the meds that they have been trying on her. Of course, they want to say, "She's stressed out/anxiety", but it began at home while at complete rest on the couch.They did chest xrays and EKGs and EEGs and diagnosed her with Costochondritis (inflammation of the chest wall). Other symptoms are flu-like fatigue and all over body aches and excessive tiredness (but, these could also be as a result of meds or the migraine itself. She does have some days that are better than others, when she actually feels close to normal for several hours, but she has never gone 24 hours without a severe headache. She has been put on antibiotics 3 rounds (in case of infection and for the mycoplasma), numerous NSAIDs and anti-inflammatories, muscle relaxers, triptans (Maxalt, Compazine, Relpax - all which caused severe chest pains, rapid heart rate and psychotic episodes like hallucinations). She was on Topamax for three weeks and I was terrified of the side effects because she is a 4.0 Honor student with a brilliant memory and she was having trouble remembering the words to her favorite song. I have been researching and have discussed with my new neurologist how I do not just want to try to put her on any preventative measures without knowing what is causing this. We have also tried beta blockers (which lowered her BP so low that we ended up in the ER with 82/55 BP). Something was not adding up. The TMJ dentist felt like it was tension and muscular and put her on muscle relaxers. She got some relief for a few days on them, but she had started taking Topamax at same time so it was hard to tell if she was getting relief from the MRs or the Topamax. She has missed four and a half weeks of school and midterm exams at this point. The stress of school work is compiling on top of everything else for her. We need help. She also got Botox injections a couple of weeks ago (which apparently didn't work). We started dry needling and PT yesterday and today. It seemed to trigger an even worse migraine, as well as soreness at the injection sites. Our PT is our neighbor and friend and is very trustworthy. He believes a lot of her headache is coming from very tight muscles in neck and face and head. He feels like continued PT and needling will eventually loosen the muscles and give her some relief. I do not like her on all of the meds. We need a solution. Has anyone had any experience in having trouble breaking the migraine cycle? Today we started another Medrol pack. (my idea). I am hoping that between these steroids and the PT and dry needling, we will have a SOLUTION to what is causing this. On Monday, we go to cardiologist to rule out heart issues from the above issues that she presented with during the duration of this headache. Help!!! Anyone out there have advice?

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 1/11/2016 10:48 AM (GMT -6)   
I suggest going to a hospital the specializes in neurology and has a headache center.

John Hopkins
Mayo clinic
Jefferson University
Cleveland Clinic

keep searching....

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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