Connect
← Return to Head and Neck Concerns in EDS/HSD
Newsfeed PostNewsfeed Post in blog Ehlers-Danlos Syndrome
Head and Neck Concerns in EDS/HSD Jan 11 5:01pm | By Samantha Campbell (@samanthacmaa)Comment receiving replies
Hello, my son 17yrs, has had a headache that has not gone away for 2 years. it goes up and down but is never gone. He was recently diagnosed with hEDS. I am trying to find treatment options or even a support group to help him cope. A 15–17-year-old boy is not prepared to deal with this. I have been pushing for 2 years to figure out why he has had this headache, I am hopeful this new diagnosis may open doors to help. Any guidance or support you can give me would be much appreciated. We live in southern California.
Replies to "Hello, my son 17yrs, has had a headache that has not gone away for 2 years...."
I'm 55 and have had headaches my whole life. My sister was diagnosed with hEDS and has had multiple surgeries to correct joint instabilities. I haven't been diagnosed, but have almost all of the symptoms of the disorder. I saw a dietician to get my dehydration (which causes headaches) under control and physical therapists for lax joints. The last therapist was familiar with eds and various treatments. I was having issues holding up my head at my desk job and thought it could be another reason for my headaches. She gave me stretches for my neck, strengthening exercises, did dry needling in my trapezius muscles. She also did a technique called counterstrain. I'm not sure which of these activities helped the most, but I only get headaches on occasion and they're a lot less debilitating than they used to be. I found that a good physical therapist is amazing. Good luck!
Connect
Hi @jrgraves1, this must be so hard as a mom. You've come here to a good place to start. If you're not familiar with it, you'll also want to know about The Ehlers-Danlos Society https://www.ehlers-danlos.com/
It's a wealth of information and support, including a directory of professionals.
- Healthcare Professionals Directory https://www.ehlers-danlos.com/healthcare-professionals-directory/
You may wish to join the discussion in the Bones, Joints & Muscles support group. Start here in this discussion:
- Ehlers Danlos Syndrome (EDS) & HSD, calling all types!
https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/