How can I help my 15 year olds debilitating migraines from EDS?

Welcome @candace317, I can imagine that you are very concerned for your daughter. I'm tagging fellow EDS members who have also talked about having migraines or headaches with EDS and/or also having POTS - members like @deb914 @cutlertc @mhjs123 @briisessions @julianned @hedstrong @guderianj @spoeps @anniemaggie @nlamont @katemschultz @lisafl @jthigpen @lifetimepain @wittmack @breick and others

While we wait for others to post about their experiences, you might wish to read these blog posts written my Mayo Clinic EDS experts:
- Headaches and EDS – Common and Painful https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/headaches-and-eds-common-and-painful/
- POTS Part II: Treatment https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/pots-part-ii-treatment/

Candace, is your daughter seeing an EDS specialist?

I would suggest try to find a support group of teens that have same diagnosis in addition to getting as educated as you can. Also you might find a support group of parents with children with same diagnosis for yourself

Have you taken your daughter to a headache center? There are several in the country.

Hi, she sees a neurologist for headaches. They prescribed Topiramate, and the tripans, which are not helpful. She can't tolerate the nasal spray rescue medicine. I'm thinking Botox is next though she's against needles. I just bought a Cepahly in hopes that this helps. She sees the neurologist again on 4/27. Appointments are difficult to get.

Thank you. She is seeing Dr. Mooney at the Pain Rehab Clinic at Childrens Healthcare Of Atlanta at the center for advanced pediatrics. I do not know if that person is an EDS specialist. I would love any Atlanta recommendations if you have them. Should I push insurance to get her to Mayo PRC in Rochester? I am pretty sure I can get it approved but don't know if treatment will vary?

Thanks - I am a member of the facebook groups in Georgia for parents of children with EDS and POTS. We are attending the virtual EDS conference all day on 4/1/2023. We are attending the zoom support group for teen on 5/21/2023. I have not found anything sooner and have posted on the parent group about getting teens in Atlanta togeter but no response yet.

Anyone know about efficacy of cephay, antinausea watch, Ketamine or Prolotherapy? Acupuncture, Acupressure? Desperate here. Thanks!

Where do you live? Cephahly didn't work for me and no medicines have, but she is young. Younger ones seem to have better luck. Try to get a neurologist who deals only in headaches.

Atlanta area (Suwanee, NorthEast of Atlanta)

There is a Mayo Clinic in Jacksonville, Florida

I was told that Rochester was the place to go for POTS and EDS. Jacksonville is much closer! Would that location have a pediatric pain rehab program like Rochester?