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Moderator

Headache and Migraine Group: Let’s connect

Posted by Lisa Lucier, Moderator @lisalucier, Feb 27 1:49pm

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?

Interested in more discussions like this? Go to the Headache & Migraine Support Group.

jrsjc | @jrsjc | 5 days ago

I assume everyone has tried the CGRP medicines, like Vyepti and Aimovig. They seem to held me as a preventative. My problem is that I can't find a rescue drug that works. Triptans, and Advil don't help at all. Any suggestions?

REPLY
Jody aka mojo244 | @mojo244 | 23 hours ago

Hello, I believe that I have commented on this group but never introduced myself.
I’m Jody, a 62 year old male, Marine Corps veteran, Deputy Sheriff K-9 handler/trainer veteran and stage IV cancer survivor. Among many post treatment complications chronic migraine is one of them.
I have been battling this migraine for 8 1/2 years and the pain level holds a 7-10 24/7.
Sumatriptan was my go to for 9 days per month but once I reached 60 years old I could no longer be prescribed any Triptans due to the risk of stroke they are known for.
Qulipta and Nurtec have a $400 copay with my Medicare so those are not an option.
I do receive Botox injections but it took approximately a year to signal any relief and then it only worked for approximately a year and then was no value.
However, for my last round of Botox my NP injected the entire dose into my neck. I felt relief within 30 minutes and it lasted 2 months. Now when I say relief I mean from a 10 to a 7 and I can gladly deal with a 7. I’m in my 3rd month and I am in the 9-10 pain range but I’m getting close to my Botox injections. I’m really hoping that the next round will do as good or better than the first neck injections.
I am finding that Bayer Back and Body will take the edge off from a 10 but I only take a couple per day and not every day.
Anyway I’m convinced that my migraine is caused by the damage the radiation has caused to my neck.
As for my cancer, I was in Stage IV base of tongue, throat and lymph nodes. I had too much cancer to consider surgery so I was hit as hard as they could hit me to kill it. So far so good!
I blame the cancer on the contaminated water I was victim to while stationed at Camp Lejuene in the early 80’s. The VA however denied my claim because I never complained about any of my illness while on active duty…keep in mind that was in the 80’s and my diagnosis was 8 1/2 years ago?! Anyway that obviously is a moot subject.
Anyway I’m hoping my experiences can help someone.

MOJO

REPLY
1 reply
jrsjc | @jrsjc | 18 hours ago
In reply to @mojo244 "Hello, I believe that I have commented on this group but never introduced myself. I’m Jody,..." + (show)
@mojo244

Hello, I believe that I have commented on this group but never introduced myself.
I’m Jody, a 62 year old male, Marine Corps veteran, Deputy Sheriff K-9 handler/trainer veteran and stage IV cancer survivor. Among many post treatment complications chronic migraine is one of them.
I have been battling this migraine for 8 1/2 years and the pain level holds a 7-10 24/7.
Sumatriptan was my go to for 9 days per month but once I reached 60 years old I could no longer be prescribed any Triptans due to the risk of stroke they are known for.
Qulipta and Nurtec have a $400 copay with my Medicare so those are not an option.
I do receive Botox injections but it took approximately a year to signal any relief and then it only worked for approximately a year and then was no value.
However, for my last round of Botox my NP injected the entire dose into my neck. I felt relief within 30 minutes and it lasted 2 months. Now when I say relief I mean from a 10 to a 7 and I can gladly deal with a 7. I’m in my 3rd month and I am in the 9-10 pain range but I’m getting close to my Botox injections. I’m really hoping that the next round will do as good or better than the first neck injections.
I am finding that Bayer Back and Body will take the edge off from a 10 but I only take a couple per day and not every day.
Anyway I’m convinced that my migraine is caused by the damage the radiation has caused to my neck.
As for my cancer, I was in Stage IV base of tongue, throat and lymph nodes. I had too much cancer to consider surgery so I was hit as hard as they could hit me to kill it. So far so good!
I blame the cancer on the contaminated water I was victim to while stationed at Camp Lejuene in the early 80’s. The VA however denied my claim because I never complained about any of my illness while on active duty…keep in mind that was in the 80’s and my diagnosis was 8 1/2 years ago?! Anyway that obviously is a moot subject.
Anyway I’m hoping my experiences can help someone.

MOJO

Jump to this post

Thanks for your story. Sharing some success is always good for us migrainers. I get Botox too. But, I'm curious where in the neck do they place the injections? Pls let me know. Thanks. Jim
PS: I'm on Medicare as well and have bought Qulipta. While Medicare won't pay it all, I have a supplemental prescription insurance through Blue Shield and that covers the co-pay.

REPLY
1 reply
Jody aka mojo244 | @mojo244 | 15 hours ago
In reply to @jrsjc "Thanks for your story. Sharing some success is always good for us migrainers. I get Botox..." + (show)
@jrsjc

Thanks for your story. Sharing some success is always good for us migrainers. I get Botox too. But, I'm curious where in the neck do they place the injections? Pls let me know. Thanks. Jim
PS: I'm on Medicare as well and have bought Qulipta. While Medicare won't pay it all, I have a supplemental prescription insurance through Blue Shield and that covers the co-pay.

Jump to this post

I think the injections are to:
Anterior Scalene
Posterior Scalene
Middle Scalene
Upper area of the Trapezius
Top ridge of Trapezius

My supplemental insurance doesn’t cover my copay until I reach a large out of pocket maximum. 🤷‍♂️

MOJO

REPLY
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