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.

Profile picture for covidstinks2023 @covidstinks2023

sjd416, Bless you. You have really been through it and I empathize. Migraines are terrible. So many things can be a culprit. I went for a long time and hardly had one and now I have
started back with them.

Does anyone in your immediate family have them? My dad had them.

I will be alternating Ubrelvy & Maxalt. Ubrelvy eased my migraine in 10 minutes. Ubrelvy
made me nauseous, so I am going to take Emetrol for nausea with it per my doctor. Nurtec
did not work for me. Zomig works the best, but, insurance will not cover it. I was on Imitrex
for years. My doctor then said you have to rotate migraine meds. I agree. I do find that
the migraine nasal sprays and dissolvable meds work the quickest.

I do take 200-400 mg of Magnesium Glycinate and Vitamin B2 for migraines. It took
a while to tell a difference, but, I do believe it helps.

I cannot tolerate any of the SSRI's for migraines at all. I find that if I take the Maxalt as
soon as I feel the first twinge of a migraine, lie down in a dark room with a heat pack, doze
off for a little while, I can get relief. If I try and stay up and keep doing things, the migraine
gets worse.

There is such a thing as a Migraine Cocktail at the ER. I have never had that, have you? Also,
there is a Magnesium Infusion for migraines a friend of mine received and he had great
relief.

A hot shower or soak in epsom salt helps with the soreness in the back and neck after a
migraine is over. I also use Volataren Gel on my back and neck with a heatpack....I have
a lot of arthritis.

I agree that the weather has been so strange this year. I have allergies and am prone to sinus infections, which triggers migraines for me. This was the hardest spring I have ever had.

I do have arthritis in my spine which triggers migraines as well. I find lack of sleep can cause
them as well.

COVID brought on some of the worst migraines I have ever had....I had a bad case of COVID in 2022.

I have had migraines since the 3rd grade. I use to throw up on the school bus with the headache.

I find some of my migraines are heat induced too. If the humidity is real high it will bring
on a migraine. I will usually get one when it is going to snow as well.

Foods that are a culprit are red hot dogs, soy, MSG, ham of any kind and homemade fudge.
I do believe sugar is a trigger as well.

Staying hydrated is very important and watching caffeine intake.

I am praying for you to get relief. Keep me posted. Blessings and you are not alone.

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I use cbd cream from Amazon on neck shoulders. I have tens unit. I avoid brown wheat products. I’m trying ashagawanda

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Profile picture for nikcs @nikcs

Hi all, this is my first time posting here and I'd like to share my story to see if anyone has any insight.

I'm at 24 year old male that's been experiencing daily headaches for the past 2 years that vary in intensity. ~70% of my days are spent in a moderate-intense pain, ~20% are spent in mild pain and ~10% of my time is spent (mostly) pain free. Aside from my headaches, I'm healthy. I exercise a ton, eat relatively clean and don't drink / smoke. I have a healthy relationship with my partner, and a wonderful family.

Before I go into detail, I'll note I've had the normal checks, CT, MRI and bloodwork, all were normal. I also had a sleep apnea test and was normal.

My neurologist has diagnosed me with 'migraines'. That's all I know.

The best way to describe these headaches is like my head is swollen, I can feel something off at the back of my head, and it is almost like blood is struggling to flow to the front of my head, and it pulses behind my eye. It pulses, all day, almost everyday. It's not sharp or piercing, more dull. It's only every on one side of my head. It used to be mainly on my right side, but now moves between eyes. Generally the side I wake up with is the side it sticks with me all day.

Other symptoms include:
- loss of appetite
- nausea
- fatigue
- sensitivity to sound
- poor body temperature regulation (I get very cold or hot),
- ear ringing
- I sometimes get a 'fluttering' around my eye cavity where it meets my nose, this is hard to describe

The pattern is:
1. Go to sleep
2. Sleep ~8 hours without waking up once
3. Wake up, open eyes, feel something behind my eyes (this is hard to describe, but it's just a general discomfort)
4. Stand up, hear a whooshing sound
5. Pulsing intensifies
6. Pulsing peaks after ~2-3 hours
7. Near the evening, it will begin to diminish in intensity, but it's still there
8. Repeat step 1.

Before I go any further, I've NEVER had one of these headaches come on during the day. It is always when I wake up in the morning. I'm almost certain something is happening during my sleep that's causing these.

I've been prescribed a slew of migraine medications, none of which have worked and generally make it worse. Especially sumatriptan, that stuff ruins me. Tylenol and Advil no relief. I've been prescribed a couple anti anxiety meds, none have done anything.

Things that sometimes can provide relief:
- A nap. Even falling asleep for 20 minutes can just get rid of it, this is the only thing that can actually make it go away.
- Yawning (hard to explain, but I feel relief when I yawn)
- Intense exercise, if I go for a run / bike ride and sweat a ton, I may get some relief afterwards, it won't go away completely.

Areas of note:
- Around 4 months ago, I woke up with excruciating neck pain, and could barely rotate my head
- I can't drink alcohol, even if I had 1 drink, I get this headache amplified and am sometimes out of commission for 2 days.
- I hurt my back ~5 years ago when someone pressed on my spine. It gave me sciatic nerve pain that hasn't gone away really to this day and has caused a slew of issues on the right side of my body. I can still squat, but can't run due to knee pain and a tight hip from the back injury
- I have a high pain tolerance -- I recently broke my wrist and realized I barely had any pain. If I did, it was completely overpowered by my headache. I think this is what is scaring me now, since my wrist break feels like a little paper cut in comparison to my headache.

There's probably things I'm missing, but wanted to share my story as my doctors really don't seem to be that concerned with me, despite my quality of life being drastically reduced.

I try and remain high spirited, battling it everyday and continuing my daily routine. Some days it's near impossible though and I just need to lie down and hope tomorrow is a little better. After 2 years of wishing that, it's getting harder everyday to keep my chin up.

Thanks for reading, and would love to chat more with anyone who's experienced something similar.

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How horrible! I cannot imagine how you function daily.
Have you ever been told your headaches are “cluster” headaches?
You mention MRI. You also mention back problems. Have you had an MRI of your neck?
Have you been treated at a Headache Center where you have a multi faceted approach to diagnosis and treatment.
3 years ago I was having daily migraines. I now am practically migraine free, but it took over a year and trying several medications and treatments to finally eliminate the headaches.

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Profile picture for nikcs @nikcs

Hi all, this is my first time posting here and I'd like to share my story to see if anyone has any insight.

I'm at 24 year old male that's been experiencing daily headaches for the past 2 years that vary in intensity. ~70% of my days are spent in a moderate-intense pain, ~20% are spent in mild pain and ~10% of my time is spent (mostly) pain free. Aside from my headaches, I'm healthy. I exercise a ton, eat relatively clean and don't drink / smoke. I have a healthy relationship with my partner, and a wonderful family.

Before I go into detail, I'll note I've had the normal checks, CT, MRI and bloodwork, all were normal. I also had a sleep apnea test and was normal.

My neurologist has diagnosed me with 'migraines'. That's all I know.

The best way to describe these headaches is like my head is swollen, I can feel something off at the back of my head, and it is almost like blood is struggling to flow to the front of my head, and it pulses behind my eye. It pulses, all day, almost everyday. It's not sharp or piercing, more dull. It's only every on one side of my head. It used to be mainly on my right side, but now moves between eyes. Generally the side I wake up with is the side it sticks with me all day.

Other symptoms include:
- loss of appetite
- nausea
- fatigue
- sensitivity to sound
- poor body temperature regulation (I get very cold or hot),
- ear ringing
- I sometimes get a 'fluttering' around my eye cavity where it meets my nose, this is hard to describe

The pattern is:
1. Go to sleep
2. Sleep ~8 hours without waking up once
3. Wake up, open eyes, feel something behind my eyes (this is hard to describe, but it's just a general discomfort)
4. Stand up, hear a whooshing sound
5. Pulsing intensifies
6. Pulsing peaks after ~2-3 hours
7. Near the evening, it will begin to diminish in intensity, but it's still there
8. Repeat step 1.

Before I go any further, I've NEVER had one of these headaches come on during the day. It is always when I wake up in the morning. I'm almost certain something is happening during my sleep that's causing these.

I've been prescribed a slew of migraine medications, none of which have worked and generally make it worse. Especially sumatriptan, that stuff ruins me. Tylenol and Advil no relief. I've been prescribed a couple anti anxiety meds, none have done anything.

Things that sometimes can provide relief:
- A nap. Even falling asleep for 20 minutes can just get rid of it, this is the only thing that can actually make it go away.
- Yawning (hard to explain, but I feel relief when I yawn)
- Intense exercise, if I go for a run / bike ride and sweat a ton, I may get some relief afterwards, it won't go away completely.

Areas of note:
- Around 4 months ago, I woke up with excruciating neck pain, and could barely rotate my head
- I can't drink alcohol, even if I had 1 drink, I get this headache amplified and am sometimes out of commission for 2 days.
- I hurt my back ~5 years ago when someone pressed on my spine. It gave me sciatic nerve pain that hasn't gone away really to this day and has caused a slew of issues on the right side of my body. I can still squat, but can't run due to knee pain and a tight hip from the back injury
- I have a high pain tolerance -- I recently broke my wrist and realized I barely had any pain. If I did, it was completely overpowered by my headache. I think this is what is scaring me now, since my wrist break feels like a little paper cut in comparison to my headache.

There's probably things I'm missing, but wanted to share my story as my doctors really don't seem to be that concerned with me, despite my quality of life being drastically reduced.

I try and remain high spirited, battling it everyday and continuing my daily routine. Some days it's near impossible though and I just need to lie down and hope tomorrow is a little better. After 2 years of wishing that, it's getting harder everyday to keep my chin up.

Thanks for reading, and would love to chat more with anyone who's experienced something similar.

Jump to this post

Im sorry to hear you have suffered so long! Wow! I use to get migraines all the time and I just tried to deal with it, but I went and had some botox done by my crows feet area and in-between my brows. I did that for wrinkles but then I noticed my headaches stopped. That was 10yrs ago. I am 60 now and I get 40 units every 4months. It's worth every penny! Good luck to you and God bless.

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Profile picture for sjd416 @sjd416

First time posting. Attempted to reply to member who mentioned taking Triptans plus SSRI antidepressants. It didn’t ‘take’, so I’m posting here.

I’m interested in a comment about taking SSRIs with a
Triptan. I had been using Ubrelvy for some time with little relief. After a recent hospitalization for the worst and intractable migraine I ever experienced, accompanied by a severe urinary tract infection, I received prescriptions for Nurtec and Imitrex when I was discharged. Those two meds aren’t taken together. I’ve used them on different days at migraine onset. I also take a monthly Ajovy injection for prevention; the effectiveness appears to be diminishing. I had the same experience with Emgality.

Nurtec doesn’t help; however, Imitrex usually relieves my headache within about a half hour. I’ve taken antidepressants for several years; perhaps that’s why Imitrex is working for me. It’s only been a few weeks since starting it, but I’m grateful for the relief with Imitrex so far. I hadn’t considered the SSRI connection.

I’ve seen postings relating to diet triggers for migraines, but haven’t connected them with anything I’ve eaten. I don’t use caffeine, cola or artificial sweeteners. Cheese and chocolate don’t bother me. My headaches seem connected to the weather, which has been awful this year. We have experienced a significant amount of rainfall, wind, followed by brief periods of pleasant weather, interspersed with chilly, cloudy days.

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I had chronic daily migraines for many years and know a bit about taking triptans with SSRIs. My neurologist told me that SSRIs often supercharge the triptans to make them work better, faster, and at lower dosages. So for example, if you are already taking an SSRI, you may only need a 5mg dose of rizatriptan, rather than a 10mg dose, to treat the migraine.
In my experience, it was true that the SSRIs seemed to give the triptan more strength and efficacy than it might otherwise have. Even if you don't need an SSRI for, say, depression, it may be worth asking your neurologist if you could start a low dose of Lexapro or Celexa for the purpose of improving the efficacy of your triptan. Hope this helps.

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Profile picture for kittyjohnson1964 @kittyjohnson1964

Im sorry to hear you have suffered so long! Wow! I use to get migraines all the time and I just tried to deal with it, but I went and had some botox done by my crows feet area and in-between my brows. I did that for wrinkles but then I noticed my headaches stopped. That was 10yrs ago. I am 60 now and I get 40 units every 4months. It's worth every penny! Good luck to you and God bless.

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I’m glad they work for you Kitty. It took a year for it to start relieving my migraine and lasted about a year. I’m in my 3d year of Botox and she moved my injections to my neck. I felt great (about a 7 pain, usually a 10) for 2 months but this last month has been a bugger to say the least. I get another round on next Monday so I’m hoping I can get another good 2 months out of it.

MOJO

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I’ve getting Botox for 24 years now, and it literally has given me a normal life again. After having migraines from age 11 with rapid shifts of hormonal levels, with my periods, I could handle them because I knew when they were coming. In 2000 I was involved in a car accident with numerous injuries, which included severe whiplash. This started an almost 2 year span where I had constant severe migraines, and because it was a workman’s comp case, I got referred to one neurologist after another - picked by the insurance company. None of them could figure out what “my issue” was, with one telling me it was “all in your head”. Yeah. Finally the workman’s comp doctor sent me to a neurologist he was friends with - and after a 15 minute examination, he diagnosed me with cervical dystonia, caused by the accident. He started me on Botox, and I got my life back. Has anyone else experienced something like this?

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Profile picture for mbixler @mbixler

I’ve getting Botox for 24 years now, and it literally has given me a normal life again. After having migraines from age 11 with rapid shifts of hormonal levels, with my periods, I could handle them because I knew when they were coming. In 2000 I was involved in a car accident with numerous injuries, which included severe whiplash. This started an almost 2 year span where I had constant severe migraines, and because it was a workman’s comp case, I got referred to one neurologist after another - picked by the insurance company. None of them could figure out what “my issue” was, with one telling me it was “all in your head”. Yeah. Finally the workman’s comp doctor sent me to a neurologist he was friends with - and after a 15 minute examination, he diagnosed me with cervical dystonia, caused by the accident. He started me on Botox, and I got my life back. Has anyone else experienced something like this?

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Hi, @mbixler - welcome to Mayo Clinic Connect. Glad to hear the injections have given you a normal life again.

If you'd like to chat with others with cervical dystonia, please check out this discussion:

Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/

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Profile picture for docb99 @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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Do u get the Botox shots in your neck or head?

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Hello everyone! I have been so interested in reading all of your stories. I totally agree with the comment somewhere, “aren’t we a mess?” For all of my life I have felt like I was a mess—
now I at least have company!!!
I told my migraine story back in the Qulipta discussion, so I won’t repeat it, but after reading many of your stories, I felt compelled to ask if others have been checked for sleep apnea? I thought it was worth me mentioning because so many of you develop your headaches at night. I have been on a CPAP machine for years. Although my migraines still persist, it certainly helps me to sleep better and at least it’s not ANOTHER drug!
I have also had nerve oblation in my neck and have a fabulous PT who does deep tissue massage, ultrasound, and dry needling. These give me great -although short lived- relief.
Thank you all for sharing your stories and your knowledge!

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Profile picture for margarite13 @margarite13

Do u get the Botox shots in your neck or head?

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Hey Margarite,
I was getting Botox to my head and face but it stopped working so she gave my last prescription to my neck. I had the best 2 months in the past 8 1/2 years! My pain level was holding a 7 but this month has been a 10+. I get another round on Monday so I’m hoping I get another couple months of 7’s!

MOJO

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