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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.

mablesmith | @mablesmith | Mar 6 10:41pm
In reply to @docb99 "Hello I’m a 75 year old female. Retired professor. Grandma of 3. Mom of 3. I’ve..." + (show)
@docb99

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.

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I suffered migraine from 20 years old until past 60 years old. Trying many meds until finally Imitrex was developed along the way and it helped. Mine came on with an aura in the right temple and what looked like broken glass. They usually lasted 3 to 4 days with vomiting. I'm now 80. Two years ago I was diagnosed with Ramsey Hunt Syndrome which has caused severe headaches, not as bad as migraine but BAD. Dr. prescribed Topiramate 100 mg at bed time and it has worked. I sincerely believe nothing has ever hurt as bad as the migraines I had when I was young, they were truly debilitating. When I hear of someone having a true migraine my heart aches for them. I wish all of you are able to get help.

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1 reply
aznasimage | @aznasimage | Mar 8 3:41pm

I wake up with pain, vomiting, light sensitivity. My headache is fully engaged by the time I open my eyes.
Is this typical? I did not suffer from migraine until I developed dysautonomia.
Imitrex worked for years, but I have recently started experiencing abnormal heart rhythm when I take it.
I have a platelet disorder so many pain relievers are not recommended. I have no idea where to go from here.

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vickilf5 | @vickilf5 | Mar 9 7:45am

I’ve had migraines for most of my life. I’m 61 now. Used Maxalt successfully but recently the headaches became more frequent and I had to take more Maxalt than my doctor was comfortable with. I’ve had other treatments over the years including Botox injections that did nothing. Finally after a new evaluation by Neurology (specializing in migraine) I started Emgality, a once a month self injection. Absolutely life changing. I have not had one migraine since September. Mild headache occasionally but no big deal. Truly incredible.

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lzimm | @lzimmerman | Mar 9 10:07am

I am 62 years old and have suffered from migraines for 20 years. I used to get them 4 days/week and have tried every medication, Botox and other injections currently on the market as well as some non traditional ideas. Rizatriptan (Maxalt) did help a lot in stopping my migraines when they occurred. However, it did not reduce the amount migraines and at times I had rebound headaches. I now get Vyepti infusions quarterly and only experience one migraine/month. I still use the Rizatriptan as a rescue drug when I do have a migraine. This has been life changing for me.

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1 reply
mikaylar | @mikaylar | Mar 9 10:24am
In reply to @lzimmerman "I am 62 years old and have suffered from migraines for 20 years. I used to..." + (show)
@lzimmerman

I am 62 years old and have suffered from migraines for 20 years. I used to get them 4 days/week and have tried every medication, Botox and other injections currently on the market as well as some non traditional ideas. Rizatriptan (Maxalt) did help a lot in stopping my migraines when they occurred. However, it did not reduce the amount migraines and at times I had rebound headaches. I now get Vyepti infusions quarterly and only experience one migraine/month. I still use the Rizatriptan as a rescue drug when I do have a migraine. This has been life changing for me.

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Did Botox help you at all? I am getting Botox on the 19th. Not hopeful as it did not work 8 years ago.

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1 reply
lzimm | @lzimmerman | Mar 9 2:35pm
In reply to @mikaylar "Did Botox help you at all? I am getting Botox on the 19th. Not hopeful as..." + (show)
@mikaylar

Did Botox help you at all? I am getting Botox on the 19th. Not hopeful as it did not work 8 years ago.

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I did 8 rounds and it helped 4 of those times. It greatly reduced the severity and number of migraines for the times it worked. I experienced minimal impact the other 4 times. Good luck with your injections. I hope it works well for you.

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1 reply
mikaylar | @mikaylar | Mar 9 3:23pm
In reply to @lzimmerman "I did 8 rounds and it helped 4 of those times. It greatly reduced the severity..." + (show)
@lzimmerman

I did 8 rounds and it helped 4 of those times. It greatly reduced the severity and number of migraines for the times it worked. I experienced minimal impact the other 4 times. Good luck with your injections. I hope it works well for you.

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I am more worried about my eyes and how close it will be. I have macular degen & glaucoma. The neurologist has agreed to keep it directly away from my eyes.

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katew | @katew | Mar 30 1:14pm
In reply to @mikaylar "Thank you, Lisa for opening this group to us. I have had this headache for 5-1/2..." + (show)
@mikaylar

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.

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I just wrote a long comment that disappeared. I guess it wasn't supposed to be. Just know you are not alone and I now know I am not alone. A lifetime (my parents first consulted a doctor when I was 5) of frequent to near constant to constant headaches has been my life. I just try to ignore them as much as possible, using ice, steam, darkness, and quiet when needed,and acetaminophen as a last resort. I just refuse to stop living my life because headache pain keeps nagging at me.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 3 11:05am
In reply to @mablesmith "I suffered migraine from 20 years old until past 60 years old. Trying many meds until..." + (show)
@mablesmith

I suffered migraine from 20 years old until past 60 years old. Trying many meds until finally Imitrex was developed along the way and it helped. Mine came on with an aura in the right temple and what looked like broken glass. They usually lasted 3 to 4 days with vomiting. I'm now 80. Two years ago I was diagnosed with Ramsey Hunt Syndrome which has caused severe headaches, not as bad as migraine but BAD. Dr. prescribed Topiramate 100 mg at bed time and it has worked. I sincerely believe nothing has ever hurt as bad as the migraines I had when I was young, they were truly debilitating. When I hear of someone having a true migraine my heart aches for them. I wish all of you are able to get help.

Jump to this post

Hi, @mablesmith - glad the sumatriptan (Imitrex) finally helped you with your migraines.

You likely have input that could be helpful in these discussions on migraines and auras and on pain:

- Migraine Auras: Do you take any treatment that controls it?
https://connect.mayoclinic.org/discussion/migraine-auras/
- Daily headache pain: How did you get relief?
https://connect.mayoclinic.org/discussion/daily-headache-pain/?pg=1#comment-1109557

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ekj1234 | @ekj1234 | 4 days ago

I am a 73 year old retired school teacher. I started with migraine headaches after my son died tragically 15 years ago. They have progressively gotten worse over the years and I have been on different meds,, Botox, shots, and am currently taking Qulipta daily. Nothing seems to work for long. Headaches usually come in the afternoon/evening and are now probably considered cluster headaches as I get them almost daily. Imitrex and a cold pack in a darkened room for a couple of hours usually help. I am miserable and not sure where to turn next. Any suggestions and or help would be greatly appreciated!

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