New daily persistent headache. I feel alone with my pain

My daughter was diagnosed with a chronic daily migraine 8 years ago. The pediatric neurologist told us that we could try magnesium, and many other supplements as well as every other pain medication but nothing seemed to give Riley any pain relief. The onset I believe was started with her first shot of Gardasil. At 13 years old. She had many antibiotics and steroids that knock it out for 6 months then she got a 2nd shot and I believe shortly after the headache returned and has never stopped.

Sorry to hear about your diagnosis. My daughter continues her struggle and complains about colder weather in Idaho. When temps drop or barometric pressure her headaches intensify beyond the daily 7 that she has been able to tolerate. I pray they are able to find the cause and treat your headaches.

Have you discussed trying Botox or Ubrelvy?

Thanks for the reply mbixler. As soon as she was old enough we had her in for botox. Unfortunately, nothing changed. I will check on the Ubtelvy. We tried every other medication on the market and no help.

Good luck! I’ll be saying prayers for you and your daughter.

@determineddad and @nathalietremblay I was diagnosed with Chronic Daily Migraine in 2008. I have had the same head pain, in the same spot for 19 years. My pregnancy was the jumping off point. I feel like I have tried everything. I'm sure I have not. I started getting the Vyepti infusion which takes about 30 minutes and I go to an infusion center. It helped by itself for about a year. Then my neurologist recommeded I try botox (again). Now we do both. Botox every 12 weeks and Vyepti every 12 weeks. It works out well. I basically have a "procedure" every 6 weeks. Now, I know that is not possible for everyone. And I'm not sure the age requirement for the Vyepti. Has your daughter disscussed this with a gynocologist? That is super personal and you do not have to discuss that publicly. Just something to consider. I also use Ubrelvy as a rescue medication. Qulipta was somewhat helpful, but not totally. Do you use any form of blood pressure medication? Also, I know its not "great" but caffeine can be helpful. I usually keep a small can of coke or dr. pepper with me at all times. Acupuncture, massage, blue light blocking glasses, sunglasses, ear plugs, and an understanding and emapthetic support system have also helped in different ways. I don't love giving advice, but I do feel like this is the space for that. I hope I haven't over stepped. Again, no need to reply with the super personal information about your daughter. Best of luck to you both!

I've had a migraine every day for 2.5 years. Tried Vyepti infusions. Im on Botox now along with Ubrelvy every other day. Severity is a bit lower but still have them every day. May be adding Qulipta to the mix. I think mine are due to C1-C2 nerve compression but MRIs and US show nothing. FYI, I also have RA.

Has your daughter tried propranolol? I had chronic daily migraine for years until my sister (a physician, although not actually a neurologist) learned about propranolol. It was the only thing that stopped the migraines and essentially gave me my life back. Everyone is different but for me, the relief was almost immediate and I never wanted to go off it. I’m surprised it isn’t used more often by neurologists for intractable and chronic migraines. Hope this helps your daughter.

I am sorry to hear that you are struggling with this condition as well. It is good that you have a clear reason for these headaches. We have been looking for causes and treatments for 8 years. She tried the Botox and every medicine or treatment available at the time but the pain persisted at the same level. Last year she had an MRI on her back after more physical therapy the results were negative on any spinal compression that may be a cause for headache. We continue the journey to find cause and treatment. There is always hope and prayer that we all will find a solution.

Thanks again Kaitlyn. I really appreciate your willingness to share your experience and strength with us. The Vyepti infusion was not considered until we tried all supplements, accupuncture, physical therapy, Botox and the pain medication options. Riley was young and we tried to get her to use some mindfulness, relaxation techniques. Another diagnosis was celiac so when all of the restrictive diets and supplements didn’t work she was told that she has to stop eating gluten products. That was a blessing now she can address that condition. Sounds like many people are being diagnosed with other diseases when looking for help with these headaches.