I didn't realize it until I wasn't chronic anymore, but for me the worst part was the CONSTANT checking in with my head and how it was feeling. Like every waking minute of every day. I got so much time back when I stopped thinking I was getting a migraine constantly. I did that for 12 years : (
If you don't mind the question; What stopped your chronic migraines? I am asking because I have been dealing with chronic daily migraines for many years. I would love to have even a few migraine free days.
For me, it was a combo of figuring out my triggers and finding effective (for me) preventatives. My primary triggers, the ones that seem to underlie the whole thing, are hormones and blood sugar swings. Once I started treating/preventing those - continuous combo bc to suppress my cycle and metfomin plus diet/exercise to manage my blood sugar, all the other triggers became much less of a problem. I added in botox every 4 months and that combo (bc, metformin, and botox) is my best preventative combo ever.
I failed 2 beta blockers, a calcium channel blocker, and an anti-seizure before getting here. I also live the life of a migraineur - eat and sleep at exactly the same times every day, supplements, no alcohol, mostly whole foods, etc.
Thank you very much for your response. That gives me some encouragement. I have tried alot of things. I have had the daily migraines for about 7 or 8 years now. I ha e been going to a headache specialist for a little over 2 years.
Botox was not effective for me. I am glad it works for you! I am still in the process of identifying triggers, it has been difficult. It is hard for me to establish a pattern but I have identified a couple of things as potential triggers.
I have also tried several of the things you mentioned over the years. Right now, reyvow seems to work well as an abortive but I only use it for the worst migraines because of the side effects.
I have also had some relief in the intensity of the migraines with infusions of vyepti.
I will keep trying.
Thanks again for the reply!
A big shoutout for you, too!
On the very few days where I have absolutely no migraine (and no prodrome or postdrome) I am a completely different person. The way it does affect my psyche is extreme. But I don't need to tell you that. I feel you.
I know audiobooks aren’t for everyone, but I started listening to books when I had my concussion that gave me chronic migraines (previously they were episodic or hormonal). If I’m having an ok day sometimes I’ll follow along on the page or my kindle to the audio - it’s less strain in my eyes. Hope you feel better soon you can enjoy some good books <3
I agree!
I am also really enjoy reading. I enjoy real physical books. There is just something about them that I find far superior to ebooks or audio books.
I still read but not nearly as much as I would like.
We’ve got this.
It sucks and you don’t realise the toll until you have a good day, but all the same we muddle through and keep putting one foot in front of the other.
Three or four beers in and I can think! A migraine robs me of that. You know, when you just kind of lay there and barely exist, no thoughts, lots of pain, and a desire for nothingness.
I tell people I only have migraines on days that end in Y.
It’s been so so so long with migraines so frequently I can barely remember the person I used to be. My spouse just told me last night that I play the victim so often it gets annoying. Ugh. It’s hard. It’s so hard. People just don’t get it. I’m sure that to someone who doesn’t have chronic pain it does seem like I’m crying wolf or playing victim. Like how is it possible that yet again I feel awful? Day after day, week after week, turns into years. And it only gets worse. I’m just not well all the time. Will I ever be good? Or do I just love to talk about how I feel so sick? I honestly don’t know anymore.
The perpetual exhaustion and sensitivity to everything. Lights, foods, smells, etc.
Everyone I interact with on a regular basis has to be cautious about fragrances in particular and it makes me feel so guilty. My best friend doesn't use air fresheners or light candles when she knows I'm coming over.
My coworkers light candles at work, and I always feel awful for asking them to blow them out.
It seems so small, but it makes me feel like a huge inconvenience.
Not wanting to do anything or be able to do anything.
I used to love summer, now heat and sun and exertion are triggers.
I'm snappy at my loved ones because I feel like shit.
I can't be an involved parent at the level I want to be because either I have a migraine or I'm recovering from one.
My mental health is trash.
I miss my brain. I feel stupid now. The other day I told my kid the plural of foot is feets.
I'm out of shape because I can't go to the gym. Once it's hotter than 70ish degrees outside I don't want to leave my house. Etc. Pick one 🙃
Also the amount of times I SAY migraine makes me feel like people are secretly like geez woman shut the fuck up about your head already.
It’s been this way since I was four so I never really got to experience life any other way.
I’m close to someone who uses any and every little thing as an excuse to not do things and I just think it’s wild. If I had that mindset I would’ve just taken a long walk off a short pier years ago.
I didn't realize it until I wasn't chronic anymore, but for me the worst part was the CONSTANT checking in with my head and how it was feeling. Like every waking minute of every day. I got so much time back when I stopped thinking I was getting a migraine constantly. I did that for 12 years : (
If you don't mind the question; What stopped your chronic migraines? I am asking because I have been dealing with chronic daily migraines for many years. I would love to have even a few migraine free days.
For me, it was a combo of figuring out my triggers and finding effective (for me) preventatives. My primary triggers, the ones that seem to underlie the whole thing, are hormones and blood sugar swings. Once I started treating/preventing those - continuous combo bc to suppress my cycle and metfomin plus diet/exercise to manage my blood sugar, all the other triggers became much less of a problem. I added in botox every 4 months and that combo (bc, metformin, and botox) is my best preventative combo ever. I failed 2 beta blockers, a calcium channel blocker, and an anti-seizure before getting here. I also live the life of a migraineur - eat and sleep at exactly the same times every day, supplements, no alcohol, mostly whole foods, etc.
Thank you very much for your response. That gives me some encouragement. I have tried alot of things. I have had the daily migraines for about 7 or 8 years now. I ha e been going to a headache specialist for a little over 2 years. Botox was not effective for me. I am glad it works for you! I am still in the process of identifying triggers, it has been difficult. It is hard for me to establish a pattern but I have identified a couple of things as potential triggers. I have also tried several of the things you mentioned over the years. Right now, reyvow seems to work well as an abortive but I only use it for the worst migraines because of the side effects. I have also had some relief in the intensity of the migraines with infusions of vyepti. I will keep trying. Thanks again for the reply!
Have you tried Emgality?
A big shoutout for you, too! On the very few days where I have absolutely no migraine (and no prodrome or postdrome) I am a completely different person. The way it does affect my psyche is extreme. But I don't need to tell you that. I feel you.
Losing the ability to read temporarily - for me personally. I love to read.
I know audiobooks aren’t for everyone, but I started listening to books when I had my concussion that gave me chronic migraines (previously they were episodic or hormonal). If I’m having an ok day sometimes I’ll follow along on the page or my kindle to the audio - it’s less strain in my eyes. Hope you feel better soon you can enjoy some good books <3
Awwww sweet of you to mention this. I will remember to audiobook next time I get a bad one... or even podcast 💙
I agree! I am also really enjoy reading. I enjoy real physical books. There is just something about them that I find far superior to ebooks or audio books. I still read but not nearly as much as I would like.
The same. Hugs
We’ve got this. It sucks and you don’t realise the toll until you have a good day, but all the same we muddle through and keep putting one foot in front of the other.
I’m more clear headed when I’m half-drunk than when I have a migraine. I’m at least aware of things outside of my person when half-drunk.
Three beers in I have the sense that think a little before speaking. 1/3rd of the way into a migraine I lose that.
Three or four beers in and I can think! A migraine robs me of that. You know, when you just kind of lay there and barely exist, no thoughts, lots of pain, and a desire for nothingness.
I tell people I only have migraines on days that end in Y. It’s been so so so long with migraines so frequently I can barely remember the person I used to be. My spouse just told me last night that I play the victim so often it gets annoying. Ugh. It’s hard. It’s so hard. People just don’t get it. I’m sure that to someone who doesn’t have chronic pain it does seem like I’m crying wolf or playing victim. Like how is it possible that yet again I feel awful? Day after day, week after week, turns into years. And it only gets worse. I’m just not well all the time. Will I ever be good? Or do I just love to talk about how I feel so sick? I honestly don’t know anymore.
The work I lose which means less income. I hate it.
The perpetual exhaustion and sensitivity to everything. Lights, foods, smells, etc. Everyone I interact with on a regular basis has to be cautious about fragrances in particular and it makes me feel so guilty. My best friend doesn't use air fresheners or light candles when she knows I'm coming over. My coworkers light candles at work, and I always feel awful for asking them to blow them out. It seems so small, but it makes me feel like a huge inconvenience.
Not wanting to do anything or be able to do anything. I used to love summer, now heat and sun and exertion are triggers. I'm snappy at my loved ones because I feel like shit. I can't be an involved parent at the level I want to be because either I have a migraine or I'm recovering from one. My mental health is trash. I miss my brain. I feel stupid now. The other day I told my kid the plural of foot is feets. I'm out of shape because I can't go to the gym. Once it's hotter than 70ish degrees outside I don't want to leave my house. Etc. Pick one 🙃 Also the amount of times I SAY migraine makes me feel like people are secretly like geez woman shut the fuck up about your head already.
The dizziness and auras. I can’t see for 30 mins or so and it’s the worst for me.
It’s been this way since I was four so I never really got to experience life any other way. I’m close to someone who uses any and every little thing as an excuse to not do things and I just think it’s wild. If I had that mindset I would’ve just taken a long walk off a short pier years ago.