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Headache and Migraine Group: Let’s connect
Welcome to the Headache & Migraine support group on Mayo Clinic Connect.
If you or someone you care about has headaches or migraines, this is a great place to talk with others with similar experiences. It’s a welcoming forum to learn from each other and share stories about challenges, coping strategies, setbacks and what helps.
Take these steps to participate in the group:
- Follow the group.
- Browse topics.
- Use the group search to find answers to your questions.
- Introduce yourself.
Pull up a chair and chat. Why not start by introducing yourself? What is your experience, or your loved one’s experience, living with headache or migraine (i.e., what type, how long since diagnosis, how it’s managed)? Have a question, tip or story to share?
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Migraines and Restless Leg Syndrome
@chrismast12
Yes that’s correct, prior to that I had weekly onsets for many years after headaches turned to migraines.
It’s been a difficult battle for sure but we must fight the good fight!
Wishing you the best
MOJO
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1 Reaction@lisalucier Loosely, I've been diagnosed with New Daily Persistent Headache, which basically means they come out of nowhere, have no known cause, hardly go away, and last for months to years.
I'm on vitamins and have had 1 botox injection. Thanks Lisa.
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1 Reaction@mojo244 Thanks for your response. You've had a severe headache 24/7 for 9 straight years?
@chrismast12
I started getting headaches shortly after getting tinnitus in 1983 while in the Marine Corps. Through the years the headaches turned into migraines and for the past 9 years it’s been a 24/7 migraine at a pain level of 8-10.
I was told by my oncologist that since my tinnitus and migraine was caused by; a. Toxic water at camp Lejuene and b. Increased by cisplatin there is nothing that is going to help with my condition.
In about 2022 my primary provider insisted I try verapamil and Baclofin and referred me to a migraine specialist.
So the specialist increased the meds and began Botox injections.
Now during this time my pain level was at 10 nearly all of the time. After a year(4 injections) I began to feel relief and had more 8 pain days than 10’s.
About 4 more injections later I began having less 8 days and more 9-10 days.
Now the injections are administered to my neck as well as the typical areas.
I also have cervical dystonia which was caused by the toxic water and worsened by the radiation treatments.
I’ve only had 3 injections to the neck so I can’t say if it’s going to work or not.
I have heard from others of very good results from the Botox so it would be worth you getting referred to a specialist.
But I would personally stay away from plastic surgeon that does migraine treatments and use a migraine specialist!
I hope you get relief soon!
In the meantime try Excederin for migraine it might help?
MOJO
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1 ReactionHi, @chrismast12 - welcome to Mayo Clinic Connect.
I'm sorry to hear you've had a headache every day for 4 months. That's a lot of headaches.
Have you been diagnosed with a certain type or headache/migraine by a headache specialist in neurology, chrismast12? If so, what is your diagnosis and current treatment plan?
@lisalucier I am a new chronic headache/migraine sufferer (4 months every day headaches) and would love to connect with others. I am looking for any resources that may help me deal with this incredibly hard situation. Thank you in advance.
@ekj1234 hiya I have been in the same boat as you, tried everything until a doctor told me to give up the medication and do neck exercises 3-4 times a day, watch some YouTube videos and to my surprise I’ve not had a migraine for the past 4-5 weeks give it a go
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3 Reactions@mojo244 Also, you're not supposed to take more than eight/month because they can causes rebound migraines.
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2 Reactions@migraineelaine - will you elaborate on your "looking like a Neanderthal" comment? Are you indicating some kind of disfigurement from the shots?