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.

@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’m happy to hear that you found something that works for you! I’ve been wanting to try Botox for my migraines to see if it will help. I’ve had imitrex for a while but it doesn’t always work. I’ve also taken naratriptan(same family as imitrex) I’ve had them since I was about 10 or so and I’m 39 now so I’ve been dealing with them a long them and I’ve tried just about every medication under the sun to help my migraines. They get unbearable sometimes. Migraines really effect my life negatively and I really need to find something that helps in the long term

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@mjlacb8892

I am a 61 year old female and have had headaches as far back as about 8- 10 years old not sure of the young age but I do remember little blue pills, little red pills but as of today, not one day as gone by the I have been with out a headache. I wake up with them and go to bed with them, not one day of my life have I not had a headache. Did EEG's a few times, CT Scans and many different types of pills. Currently Klonopin better then nothing at all. They called the Daily Chronic Headaches to Cluster headaches. Anyone else with the same issues and suggestions. I also suffer with Afib so medications as I get older scare me since I had 1 antiphallic shock ( I think I spelled correctly) so new meds make me nervous now. Anyone else with the same headache issues?

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Wow! I’ve had migraines since around 10 years old or so. And I’m 39 now and I have migraines or cluster headaches most days and they’re really bad a lot of the time, like right now. I’ve take a few different migraines meds, imitrex works sometimes. I was thinking of trying Botox for my migraines since a few people on here say it has helped them a lot. I can’t take much ibuprofen or Tylenol as I have Crohn’s disease also. I’ve never heard of klonopin being prescribed for migraine relief especially since it’s a benzo and it’s usually used for for panic/anxiety attacks.

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@pml

I had very bad migraine headaches in the 1970’s. I was in my 30’s and in graduate school. I was on Meprobamate and Tylenol #4 every four hours just to keep the pain away. About once a month I ended up in the Emergency Room for a shot of Demerol because the pain got so bad. The medications took my appetite away. I got down to 110 lbs. I looked like I was dying. I had seen 6 specialists and none of them could really help. My Mom and I had been praying for 2 years but it seemed like God was just ignoring us. Then I got a new doctor who insisted on taking the pain medications away because he said I was addicted to them. I had 3 pain pills left and that was it! I was devastated! I left the doctor’s office and went and bought a big bottle of wine and sat in my car and told God that I would probably become a wino because that was all that helped with the pain except the pills. I cried and prayed really hard. I went home with my 3 pain pills and the wine. I never had another headache! I never took the 3 pain pills that I was so “addicted to.” I finally threw them out. I also didn’t drink the wine until Christmas. God answers prayers but only in his time. So keep praying and don’t give up. I’m 79 and still haven’t had a headache! I’ll say a prayer for all of you who are suffering so badly with these awful migraines. I wish you all the best.
PML

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I’m sorry but your comment isn’t in any way helpful or productive. Especially for those of us who are atheists or agnostics. And I use to be a Christian and I prayed all the time for god to take away my migraines and nothing happened. Also opiates don’t help migraines really so it’s interesting that a doctor would prescribe you Demerol for a migraine. Maybe doctors didn’t know that in the 70’s? And depending on how much Demerol you where taking and for how long matters when it comes to addiction. Withdrawal from opiates is horrendous and awful. 😢

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@marley8

Hi Im 24 years old (Female) and just started getting migraines in February. I have had to take a medical leave from work and its causing a lot of anxiety for me because I now have no income. I was having headaches daily and was not able to get them to stop. I drank no caffeine, drank more caffeine, changed diet, sleep, tried the triptans etc. Ive also been getting massages and going to the chiropractor as that was recommended to me. I did have a five day break with no headaches but I cant seem to figure out anything different during those five days. I then got heat illness and got a severe headache and they have been occurring regularly again since then. My migraines cause immense pressure in my face (around the cheek bones) and that symptom is really hard for me to deal with. I can do things for some of the other symptoms like sensitivity to lights etc but the pressure is so bad. It feels like someone is squishing my face really hard. I have no sinus issues or sinus infection. Im additionally suddenly having issues with my sleep which though unrelated has made life tough. It is 4:42 am as I type this and I have yet to go to sleep. My circadian rhythm is completely off. Ive been a great sleeper my whole life and never really have had any issues except sensitivity to sounds that make it hard to fall asleep. now im completely unable to fall asleep until its around 6 am. even if I stay up a whole day and try to reset. If I take sleep medication I sleep for 14-17 hours which doesn't help to regulate the sleep. I lay there for hours and dont fall asleep till morning and that is really frustrating. Anyways I live alone and I dont know anyone in the city I live in except for the people I know at my job so I am completely alone and I just wanted to talk I guess here with people also experiencing migraines and headaches.

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Wow, that’s interesting that your migraines came on so quickly! I’m really sorry that this is happening to you. And that it’s causing you anxiety with your work. Not having an income can be very stressful and anxiety inducing(I know from experience) as I’ve had migraines since I was a kid and I’m 39 now. I’ve missed many opportunities just cause of migraines and that doesn’t cover all my other health and mental issues. Have you been able to try any preventative migraine meds yet? Also do you have insurance? Because a lot of people on here said that Botox has helped there migraines a lot. And that’s the next thing I’m gonna try for my migraines. I’m here if you have any more questions! As I’ve had migraines for so long I feel like I might be able to help you. Best of luck to you. Also try excedrin migraine. Also I don’t want to scare you but since your migraine onset was so quick you might want to have an MRI, to rule out anything to do with your brain. Sending you some good vibes!

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@bethechange86

I’m happy to hear that you found something that works for you! I’ve been wanting to try Botox for my migraines to see if it will help. I’ve had imitrex for a while but it doesn’t always work. I’ve also taken naratriptan(same family as imitrex) I’ve had them since I was about 10 or so and I’m 39 now so I’ve been dealing with them a long them and I’ve tried just about every medication under the sun to help my migraines. They get unbearable sometimes. Migraines really effect my life negatively and I really need to find something that helps in the long term

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Unfortunately Botox hasn’t continued to be an effective preventative. Imitrex still helps but I also use a gel pac and caffeine most mornings.
It’s totally trial and error in finding relief for those of us who have had migraines for decades.
I also think migraine headaches can change over time. Mine have changes but they never go away.

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Does anyone have severe dizziness with their headaches?

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Hello, this is my first time here. I used to have terrible migraines that would last 24 hrs. or sometimes 48 hrs. Twelve hrs on one side and then switching to the other side. Food definitely was a factor but each person needs to learn which foods trigger migraines for them. Dr. Speed, at John Hopkins Medical Center had a list of possible triggers. I believe it was on the internet. Zaler

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Hi, I am 69. I have had migraines from the time I was 4. At 15 the dr gave me what I thought was miracle pill. It worked. I decided to read about it (in the 70's pills would come with a long long paper stating what it is) well come to find out it was barbiturates. I flushed it away. My migraines were bad bed for 7 days no smell, or light and would throw up. As I got older they changed. It wasn't until 2021 that I took the Pfizer covid vaccine, now my migraines are really horrible. I get it for 3 days in a row. this year alone have gone in to get shots cause can't take the pain. Sadly no one knows what causes it and how to prevent it. I journaled for many years, no consistency and no way to put my finger on cause.

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