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Regular Member

Date Joined Jun 2011
Total Posts : 36
   Posted 8/24/2015 12:04 PM (GMT -6)   
My 21 year old son, E has NDPH. When he was 18 years old, E developed Thoracic Outlet Syndrome; not a candidate for surgery; in March 2014, we finally found the right TOS doctor and E was able to correct a great deal of his problems with an orthopedic vest. Last July, just at the tail end of his initial recovery, E developed a headache. It has never left. The headache has migraine features and a postural component. It increases in intensity when E is up and about. When he lays down it decreases and he sleeps well. He does not have a spinal leak. Migraine can also cause pain in other parts of my son’s body (knees, shoulder, hands). E is under the care of the pediatric headache clinic at University of California San Francisco. He has run the gamut of protocols, including DHA and Thorazine in patient stays. Next up is a lidocaine inpatient. My questions for the forum: Anybody out there have a similar profile to my son? E had quite a bit of neck involvement with TOS; has anybody heard of or consulted with Dr. T. Rozen re NPDH and neck issues; Have nerve blockers worked for anybody with NPDH; Botox?

Need to get my little guy better; he has had to drop out of college and is really missing his old life.

Forum Moderator

Date Joined Apr 2012
Total Posts : 7483
   Posted 8/25/2015 10:27 AM (GMT -6)   
Wow, he has been through at lot. Very specific problem, not sure what kind of response you will receive, but if someone, knows they will answer.

My best intuition is it is coming from the neck, lot of nerves there to get pinched or inflamed to cause headaches.

I wish you the best.
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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