Headache and Migraine Group: Let’s connect

Posted by Lisa Lucier, Moderator @lisalucier, Feb 27, 2025

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.

Profile picture for lynns21 @lynns21

@bradley99
Hi Bradley, have you tried triptans for your headaches? They helped my migraines. When my husband was your age, he had cluster headaches. Worse than migraine. They came on suddenly. He stopped drinking alcohol and other headache triggers. The doctor prescribed inderal (propranolol) and oxygen. The oxygen helped. This went on for several months and just like that they were gone. I hope you get relief.
Vitamin E caused my migraines.

Jump to this post

@lynns21 as for Triptans, my primary physician and migraine specialist both agreed taking me off Triptans when I turned 60 years old, they said it can cause stroke after 60.
My VA provider said he never heard of the caution but didn’t want to over ride the other 2 providers…all I know is that Sumatriptan works but I’m left with no relief due to high copayments of other migraine medications 🤷‍♂️

REPLY

I have been suffering with chronic headaches and migraines for the last 15 years. I think I have tried most of the options available to me and am currently doing the Emgality shot which make my headaches more controllable but they’re still there almost every afternoon. I just read an article about VNS or vagus nerve stimulation helping chronic headaches and migraines. (AARP newsletter). Has anyone tried this? Apparently it is FDA approved to reduce inflammation. Feedback would be most welcome.

REPLY

I get Botox every three months for my headaches. It helps a lot for two months . The third month it starts to not help much. I have had no side effects . I recommend yo u try it. Good Luck. Bernie Boy

REPLY
Profile picture for bradley99 @bradley99

Hello, I am 45M, fairly new to headaches. About 2.5 years now. I have been having trouble deciding what headaches I have. I dont get Aura or nausea or vomiting. More so either a dull throbbing ache all over or a sharper pain behind my left eye. I have made some lifestyle changes in the past 12 months, but more this January cause I spent Christmas day in a dark room for six hours. I abruptly quit coffee, alcohol and stopped using OTC meds on the regular. Looking back that was probably a bad thing to do and should have tapered off those items. But here I am, only used Ibuprofen once in 3 weeks and have started taking Riboflavin, Magnesium and CoQ10 daily. It seems to help some. I am also keeping a food diary and headache chart. The first 2 weeks in January were brutal, but seem to have gotten better. However I did have one yesterday out of nowhere that went on for 14 hours. More of the dull aching kind here lately. Also wondering if getting an hour massage is triggering as well? Last two times I've had bad days 48 hours post massage. Im thankful for this forum and hope to learn and help my mood. Headaches have cost me some things the past couple years.

Jump to this post

@bradley99
Hi Bradley, have you tried triptans for your headaches? They helped my migraines. When my husband was your age, he had cluster headaches. Worse than migraine. They came on suddenly. He stopped drinking alcohol and other headache triggers. The doctor prescribed inderal (propranolol) and oxygen. The oxygen helped. This went on for several months and just like that they were gone. I hope you get relief.
Vitamin E caused my migraines.

REPLY
Profile picture for bangerang512 @bangerang512

I’ve had chronic migraines for decades. I finally found a neurologist who worked to find the right combination of treatments for me (QULIPTA, Ubrelvy, and Botox). Botox greatly improved my quality of life and helped so much with my migraines and my latest diagnosis, cervical dystonia. I had a change in heath insurance in 2025 and I no longer qualified for the Botox Savings Program. I’ve been off Botox for just over a year and have lost 2 jobs due to migraine absences. I still struggle with feelings of guilt or shame, as if my migraines are my fault. New year, new insurance. Trying again for Botox approval to see if I qualify for the savings program so I can afford treatment. Chronic migraines have completely upended my life.

Jump to this post

@bangerang512 It is criminal that these vital treatments are so unaffordable. Do you by chance have access to Kaiser Permanente health insurance? I live in California, Have Kaiser and am on Medicare and my treatments cost $15! I wish you the best of luck!!!

REPLY
Profile picture for bangerang512 @bangerang512

I’ve had chronic migraines for decades. I finally found a neurologist who worked to find the right combination of treatments for me (QULIPTA, Ubrelvy, and Botox). Botox greatly improved my quality of life and helped so much with my migraines and my latest diagnosis, cervical dystonia. I had a change in heath insurance in 2025 and I no longer qualified for the Botox Savings Program. I’ve been off Botox for just over a year and have lost 2 jobs due to migraine absences. I still struggle with feelings of guilt or shame, as if my migraines are my fault. New year, new insurance. Trying again for Botox approval to see if I qualify for the savings program so I can afford treatment. Chronic migraines have completely upended my life.

Jump to this post

@bangerang512 sorry for your situation. I was placed on disability due to stage IV cancer and also have chronic migraine with pain level 8-10 24/7. There’s no way I could hold a job as my migraine affects my entire life.
Have you applied for disability? You should talk to your care team about disability!
I’ve been receiving Botox for a few years now and it’s no longer helping.
I can’t take Triptans because I’m over 60(63).
Nurtec and others are $400 copay so those are out of the question for me.
I wish you the best!
MOJO

REPLY
Profile picture for suszy39 @suszy39

@bernieboy Good news, wonderful to hear positive help.

Jump to this post

Thank you Bernie boy

REPLY
Profile picture for suszy39 @suszy39

@hsk I believe Botox is given every three months. I was getting trigger shot every three months then medicare pushed us out another month (which is difficult for me). My Nerve shots will be coming this week, looking foward. Best to you, it is bad enough suffering from these issues without having somthing like this happen. I am very sorry, but I am sure after another shot it should clam it down.

Jump to this post

@suszy39 thank you

REPLY
Profile picture for bernieboy @bernieboy

Botox is given every three months. I have been getting Botox for a year and it works. At first I didn't see any change but in the last3 months I have seen my headaches getting less. I use to take Tylenol 3 times a day & how I take it once a day. Don't give up on Botox if it works for me it can work for you. Bernie Boy.

Jump to this post

@bernieboy Good news, wonderful to hear positive help.

REPLY

Botox is given every three months. I have been getting Botox for a year and it works. At first I didn't see any change but in the last3 months I have seen my headaches getting less. I use to take Tylenol 3 times a day & how I take it once a day. Don't give up on Botox if it works for me it can work for you. Bernie Boy.

REPLY
Please sign in or register to post a reply.