Headache and Migraine Group: Let’s connect

I'm tagging @danny5 @dlydailyhope @richardfrancine @jenapower @grandmar @benchi300 @nathalietremblay @mercuryrose @gracie2020 @faithann64 @jalo @docb99 @mlpults @joannbar @taterjoy @gussie @mollyquah @suzbuck11 @jals @coachgail29 @daylily4me @linamend @mikaylar @ksdm @mcgrathcreative2 to get the new Headache & Migraine support group started. You've all mentioned headaches or migraines previously.

How are you all doing with your headaches or migraines? Do you have any suggestions for new members or pitfalls you'd encourage them to look out for?

Hello
I’m a 75 year old female. Retired professor. Grandma of 3. Mom of 3.
I’ve had migraines for over 40 years and tried all the typical interventions. Imitrex worked for me.
My headaches morphed into horrid and constant head and neck pain and looked a lot like occipital neuralgia. I had occipital and auricular nerve injections that did not help much for two years. I could not sleep laying down at all.
The headaches then began to occur every morning and I was taking daily imitrex and using an ice pack every morning for an hour to relieve the pain.
My neurologist suggested Botox because the headaches were daily and I would be covered by Medicare.
I’ve had two sets of Botox injections so far and it’s better. I can sleep laying down and I’m not waking with a headache.
That’s my story.

I’m 73 and have been looking for a treatment for migraine for years. I have tried multiple medications, none of them have worked. What are some more innovative treatments that fellow migraine sufferers have been made aware of that I can inquire about?

It's great to hear from you, @docb99. Not being able to sleep lying down is really hard. I only had to do that a night or two after a septoplasty years ago, but I had a tough time getting any sleep sitting up in an armchair all night instead of lying in a bed.

It sounds as though the sumatriptan (Imitrex) plus ice pack was working okay to relieve your morning headaches, but the botulinum toxin (Botox) is working better. Is that accurate? Would you share more about what getting the botulinum toxin injections was like?

@rubonimo - welcome to the new Mayo Clinic Connect Headache & Migraine support group. You mentioned trying multiple medications for migraines and looking for a treatment that works for years. What treatment options have you tried so far? Did you find they gave you a little relief or none?

My episodic migraine with aura converted to Chronic migraine a few years ago. I’m currently experiencing about 4 migraine days and 15 headache days per month. Happy to connect with others.

There are multiple Botox injections done at once in the forehead, temple, neck, shoulder areas. They are quick pin pricks. I don’t find it painful but some might.
The first injections did very little. The morning headaches were a bit less painful.
The Botox seems to get less effective after about two months.
The second injections have helped. I am not waking with headaches daily and when I do they are less intense. I am at about two months since the second set and effectiveness may be fading.
I’m due for a third set in mid April.
It is not cosmetic Botox but it does affect your muscles. My right eyebrow gets raised while my left eyebrow doesn’t. I’ll ask my NP next time. My NP said there can be eyelid droop but I haven’t had that.

Thank you, Lisa for opening this group to us. I have had this headache for 5-1/2 years every day/all day. Many tests, medicine, doctors; no answers. I am having Botox on the 19th. I tried this many years ago with no luck but I am desperate now. Seeing a medical masseuse today again. She helps a bit for 20 minutes and is expensive. Bless you all who suffer. There is also a site Migraine.com which supports us.

Have you considered seeing an Upper Cervical Chiropractor? They can take specific x-rays to see if your atlas is out of alignment causing the headaches. Mine was out of alignment, sitting over to the right of my c-2 vertebrae. After 5 adjustments my headaches are becoming less, I am going to continue going until my head is sitting on right and I don't have these horrible headaches each and every single day.

Best of luck!

Hi, @cbogoros. Welcome to Mayo Clinic Connect. Glad to hear you've found something that is helping your headaches.

Other members have mentioned alternative or complementary treatments in the Headache & Migraine support group. It is always a good idea to talk to your doctor about complementary or alternative therapies you're considering and do your research about their effectiveness.

To add to your research, I found this publication on chiropractic and headache from the Journal of Manipulative and Physiological Therapeutics. It's published by Elsevier, which you may know publishes many medical journals:

- Evidence-Based Guidelines for the Chiropractic Treatment of Adults With Headache
https://connect.mayoclinic.org/comment/1251467/.
I appreciate the advice that fellow Connect member Quazar offers. This discussion is part of the Connect Headache & Migraine support group and the Just Want to Talk support group. The member's health concern was new daily persistent headache (NDPH):

- How to Avoid Quacks and Snake Oil Treatments
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments
Fortunately, more and more academic medical centers and headache specialists are open to discussing and integrating complementary medicine. I hope your primary care doctor or your neurologist specializing in headache is someone with whom you can speak openly about your interest in and use of integrative and complementary medicine. Does your medical center have an integrative medicine department?

Thank you, my appologies.