@A MyMSTeam Member
My 15 yr old was prescribed topamax as well for chronic headaches. The 100 dose has helped a lot, but neither she nor I want this drug as a lifestyle. I see she has lost weight too. Im afraid for her of the weaning off symptoms. We tried one acupuncture session, need to have more to really see results.

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A MyMSTea...

I get that pain too, often so bad that I cannot turn my head at all, and it extends throughout my right jaw and deep into both shoulders. I've found that with regular trips to the acupuncturist (Gua Sha is especially helpful - they use a soup spoon to work tension out of muscles in the neck, and Cupping has helped my shoulders & upper back a LOT), chiropractor (traction pull & alignment adjustments), and massage, I'm now able to keep it mostly at bay, although I'm still bad about going regularly as a preventative (it's not cheap to keep up, but definitely I'm learning the hard way that it's well worth it!). There's some interesting links between spinal cord injuries and MS. Curious if you've ever had a concussion? I'll post some articles that helped me learn more & treat my pain in case they are helpful to you:

https://www.uppercervicalcare.com/multiple-scle... - fascinating that 100% of MSers in this study had a history of cervical spine damage (I had a horrible skiing accident 20 years ago that the chiropractor believes could be related). Something about how the damage prevents healthy flow of spinal fluids throughout the body....

http://www.chiro.org/research/ABSTRACTS/Eighty-... - this one too is fascinating to me.

https://multiplesclerosisnewstoday.com/2017/04/...

I successfully weaned down to 50 mg. When I went down to 25 mg the pain cane back even with the dry needling. But I had no side affects with very slow weaning off orher than pain coming back st 25 mg. The first therapist I went to for dry needling was painful at time. The second one the Lord led me to is so much better, and much less expensive. Try another dry needling specialiifbthe one session didn’t help. I pray this is helpful. My current one is a chirynot a PT.

I have horrible pain in base of skull of right side, the muscle running up from neck into skull. PCP said it was migraine and put me on 100 mg Topamax nightly as preventive med. I had used ice packs before. Pain would go to at least a #9. Topamax finally stopped them. Spring fwd 5 -6 yrs. Progression of MS caused early stage dementia and topamax crosses the blood brain barrier, so I tried to wean my myself off the topamax. Down to 50 mg daily was okay, started on 25 mg, the pain came back full force. Then neurologist diagnosed the pain as neurogenic headaches, not migraine, caused from MS, and nerves in the neck. Recommending dry needling. I stayed on the 50 mg topamax, and very very fearfully tried the dry needling (similar to acupuncture but not as invasive) since my daughter used it as therapy for Crohns disease and helped her pain a lot. It DID NOT hurt when the tiny tiny needles were inserted along the nerve or muscle line where the pain occurs, just a slight tingle. He is a licensed chiropractor, etc. The needles go from lower neck right up into midway of skull. First, it was once a week, then once a month. Haven't had a treatment for 2 months and no more pain. But, do require the daily dose of 50 mg topamax (I take generic version). Hope this was helpful. Oh, and yes, the pain does radiate sometime into my jaw. It actually hurts to lightly touch that side of jaw. But, it is under control, with acceptable levels of pain, then I use ice packs. Just one of my many, many symptoms of the MS Monster taking control of my CNS.

I'm so sorry your not feeling well! One of my first exacerbations was my right jaw and ear was excruciatingly painful. I had TMJ (tempromanibular joint). They had to do surgery and lock my jaw shut for a little over 3 months. Things were a little crazy then, like you now, I don't remember my neck hurting, but anyway it's been 20 years and no more problems with jaw or ears! 😀 Maybe you should go to an oral surgeon and let them check it out...good luck and your in my prayers 💜