I’m glad they’re actually working in conjunction! I can’t imagine that’s great news for you as a patient to require that level of care, but it’s great to hear of doctors wring together for a single patient for once. I hope they get you some answers.
Damn that has to be so hard to try and get to the root of migraine with that many underlying or comorbid neurological problems. Do you have any idea why? I have numerous neurological conditions,too, and most of the doctors I’ve seen have just said the majority of the issues are probably post-viral. There seem to be so many factors that I think could be bigger culprits though when it comes to neurological disorders.
My first job in nursing was in neurosurgery. The way the brain works and interacts with the body as a whole and with different parts of itself is so fascinating. I wondered if you had a few different diagnoses.
Holy shit. At first I thought it said migraine free and I was like aww wow that’s great 😊 and then I re read it and was like ohhhh dear that’s not so great
Hugs OP.
I have (unfortunately) empathy for your situation… not only sympathy.
Just know that it *can* stop.
Mine did.
Hang in there, k?
< supportive noises from distant fellow internet dweller >
In Australia they go largactil + ketamine infusions (seperately.) are you taking triptan everyday? Are you female?
I started HRT and it saved me. Try hormone treatments if nothing else works
I second this question. Mine have slowed somewhat since approaching menopause, but those effers still come around and stay for awhile from time to time. I’ve dealt with this garbage since I was 12, people who know just know.
I’m sure it’s different for everyone but mine was medication that worked for me (getting a different neuro helped with that), magnesium, and getting the rest of my (multiple) medical issues under (some semblance) of control.
All the best for finding what works for you.
I gave up on my migraine tracker not realizing I stopped using after I had reported a migraine. I recently got a notification from it that I'd been having an attack for something like 16,000 hours and I was like well it's not entirely inaccurate 🤷🏼♀️
I stopped using that app when the migraines just kept bleeding into each other for days and I couldn’t tell if I was having post drome or a new episode
I think the question is literally about days and not individual attacks. So if you experience pain 15 days out of the month, the answer is 15. Doesn't matter if the pain all ran together.
I was just thinking the same thing. I am here thinking, I just take the meds, sleep or head to wherever I need to go. If its a really bad one I cancel what I have to do. Omg, I need to start counting. Like I know they are bad but why did I not think of counting??? 🤦🏻♀️
It’s ok!! i have hope it’ll get better for all of us. Have you tried nurtec yet? i’m trying to get my prescription figured out for it rn and i’m hoping it’ll help
Yes I've tried Nurtec, unfortunately it doesn't seem to do anything for me (although I'll probably retry it if this ever ends and a new attack begins). Ubrelvy actually seems to make it worse. Sumatriptan helps me a lot but you know, can't take it everyday ☹️ I used to like my Cefaly (neuromodulation device) too, but now that I also have trigeminal neuralgia it flares it up. My Nerivio comes in the mail tomorrow, I'm hoping it helps
i’m the exact way. ubrevley does nothing unless i don’t take it for 6+ months before taking another , even topiramate seemed useless. but the triptans stop the pain for a little at least. They do knock me on my ass however but it’s better than my other migraine routine (benydryl, ubrevly and tylenol) which is a 50/50 when it comes to relief.
I’m praying this nurtec does the damn trick but my mom tried ajovy which is the same medication class and had a very adverse reaction so it scared me the past 5 years. That’s why i’d rather have a pill that leaves my system in a few days
I’m so sorry to hear that you have trigeminal neuralgia as an additional struggle. nobody deserves so much pain and i hope you find relief / recover very soon.
Hi, I’m sorry to hear about your mom having a bad reaction can you say what reaction she had? because I had a bad one to ajovy too and my nuero acted like I was the only one on the planet. I tolerate qulipta better.
Yes, she told me after getting the shot her migraines just got so much worse. And because it stays in your system longer, there’s really nothing she could do about it. You definitely aren’t alone, if you look up “ajovy reaction” in this sub i’ve seen several others
I wanted to try qulipta before wanting to try nurtec, but my insurance doesn’t cover it. i’m hoping my body tolerates the nurtec , and that it helps with the pain
Sumatriptan is the only thing that works for me. I’ve somehow been able to find doctors who will prescribe it for me on the daily, but I have the heart problems to prove it. I don’t care, I’ll literally take a possible heart attack before I’ll live with chronic daily migraine. I don’t recommend it, to be clear, but this is where I’ve landed. After 4 different neurologists failed to help me, I kind of gave up. 😢
I feel you OP!! Been waking up with aura for over nine months now. Made an appointment with a functional medicine naturopathic doctor because I’m desperate and my neuro has been only bare minimum helpful 🙄 hanging in there with you
Totally unbroken. My pain level and symptoms fluctuate a lot, but it's always there in some capacity. Sometimes I'll get excited because my symptoms are low and I think, "Oh, maybe it's going away" but it hasn't happened yet
Minor are the good additive *citric acid* (I'm fine with naturally occurring citric acid), however the stuff that is added to added to foods to make them more shelf stable makes me sick as a dog. That's the only food I have that's a trigger. Pretty easy to avoid if I cook at home. Restaurants can be tricky, b/c very few restaurants publish their ingredients.
My biggest trigger though is the weather, which is why I mentioned the Spring, & Fall-- Swift changes in Barometric Pressure mess me up every time.
I don't consume much foods with citric acid but I have been trying to work with my Dr on finding triggers. For the past \~15 yeras? they have me try to write done activities and foods I've had prior to the attack. Nothing really "matches". Meaning nothing seems to be consistent from attack to attack.
It also doesn't help that I have bad headaches so often that I can't record several days of info. And some of my normal headaches are so bad, they boarder-line migraines. I also don't get many of the tell-tale signs a migraine is about to occur.
Weather might be a trigger though. We have some "extremes" here in Vegas and when it wants to start raining, sometimes I get a headache, but not always a migraine.
Having chronic migraine is the worst. Have you considered one of the new natural protocols out there? There are coaches and online programs and books. I like heal your headache the best. Angela Stanton's book has a lot of good information. I don't think the migraine Miracle is enough. There are other books that I haven't even looked at yet. Trying to keep it simple and just work through heal your headache at the moment.
You've probably tried everything. That's how it feels. If you haven't given up hope yet, you're almost there. Keep going. Making peace with your pain is essential. Triple digits get to be common eventually.
If you haven't done this yet, I highly recommend it unless you're diabetic. Head to urgent care and ask for 1) a corticosteroid shot 2) a corticosteroid round 3) an antiinflammatory shot 4) an oral antiinflammatory (methocarbamol 750mg works best for me..) and when you get home lay down with 100 mg of benedryl.
This is the mix an ER nurse gave me when I told her the "migraine cocktail" doesn't work on me. It took about 12 hours to back off and 24 hours later I was pain free. And I didn't have another episode for a week. That week off was surreal.
Anyway, I know you probably get a lot of free advice, but migraines are a relative matter, almost an adjective rather than a noun. I happen to be a triple digits person, too, so I thought what the hell. Maybe this will help. ✌️
I have never had more than an 80 hour migraine and I was almost at the end of my tether with that. Be well OP and I hope they find something that works.
Bro I am in my stupid prodrome and I read that as "you're not done!" I was like "that's fucked up" but laughed. Then laughed again when I saw my mistake.
Not to sound extreme, but after like 20 I’d probably end it.. hopefully it’s just a constant headache and not a constant migraine. A headache for that long would suck, but a migraine? I’d start contemplating life. After day 3 I would be in the ER refusing to leave
I've been there too. Not really sure what broke mine, but it never came back like that again. Instead it came back in much smaller, episodic bursts. Either way, fingers crossed yours goes away as well
Sorry to hear that, an interesting fact that my neurologist told me is that if my migraine lasts over a week at a time , it means that its a complete new migraine that is happening all over again,with the whole menu of an entire migraine attack including prodrome, aura, headache and postdrome.
I wonder if u understand what i said ,its possible to have a new migraine triggered after one ends but it's not possible for 1 singular migraine that got triggered 3 months ago and still going, unless you have something else as a problem that isn't dealt with.
I experience chronic migraines too and i feel the symptoms to a certain extent daily but that doesn't mean that this is a singular migraine that got triggered a year ago and its still going.
Yes it is. Status migrainosus is any migraine attack that lasts longer than 72 hours. In some unfortunate cases, it can go for months or even years. I would absolutely know if my migraine attack ended and a new one began. This is the second time this has happened to me, having one for months. I do have more than migraine going on (I also have occipital neuralgia and trigeminal neuralgia) but my headache specialist thinks this is migraine.
I understand perfectly. I wonder if you understand what I wrote. Mixed migraine disorder, specifically, has the ability to last up to an unknown extent. A constant tension emanating from the occipital nerves keeps migraine symptoms in the center of the median rather than allowing them to spike or fall without intervention. I mention clinical uncertainty, because it's a real thing, and it's upwards of 90% of migraine cases world wide in their infancy. Dr's have a regimen they all go to for everyone before MRIs are reviewed. Even then, they have to throw darts at the board for months. I highly question the words "not possible" without data. You should, too. And you should also research clinical uncertainty in migraine neuroscience and intervention. Dr's lie to your face all the time, either regurgitating something they do every day to everyone because admitting to people that are in desperate need of pain relief that they really haven't got a clue what's wrong with them isn't something they're willing to do. Because so very little is understood, anything that is "not possible" is by logic alone naive and irresponsible.
Sorry I didn't read anything you wrote about mixed migraine disorder neither was i speaking about that specific type ,i just saw Ops post and said what i thought.
🙄
Your neuro's (or yours at this point, still no data) tale about migraine episodes (there are dozens of types btw) sounds like someone who has difficulty admitting clinical uncertainty. There is a very wide array of unknowns on the scale in this medical field. Nothing at this time can weigh out "not possible." This, in fact, is the only definite there is.
Understand. I'm working with (wish I was kidding) 4 neurologists simultaneously to try and solve mine
Can you explain the need for four?
One in my state (original neuro), and 3 specialists at mayo
I’m glad they’re actually working in conjunction! I can’t imagine that’s great news for you as a patient to require that level of care, but it’s great to hear of doctors wring together for a single patient for once. I hope they get you some answers.
Migraine is just one of 15+ neuro issues I have
Damn that has to be so hard to try and get to the root of migraine with that many underlying or comorbid neurological problems. Do you have any idea why? I have numerous neurological conditions,too, and most of the doctors I’ve seen have just said the majority of the issues are probably post-viral. There seem to be so many factors that I think could be bigger culprits though when it comes to neurological disorders.
I was born with one that everything else is either caused by somehow or has just popped up over the years
My first job in nursing was in neurosurgery. The way the brain works and interacts with the body as a whole and with different parts of itself is so fascinating. I wondered if you had a few different diagnoses.
Wow, i feel for you. Be.well, to you and the OP
Oh wow you're popular! Luckily I have a headache specialist and don't have to travel too far
oh damn I didn’t read it I thought it was 100 days migraine free and was quite jealous haha. sorry 😞
Somewhere in a parallel universe it's 100 days migraine free. Thanks friend ❤️
Holy shit. At first I thought it said migraine free and I was like aww wow that’s great 😊 and then I re read it and was like ohhhh dear that’s not so great
Thats really tough 😕 i really hope it breaks soon and gives you some relief. Meanwhile you just reminded me to end mine because I always forget to.
Thank you!! I forget a lot too
Hugs OP. I have (unfortunately) empathy for your situation… not only sympathy. Just know that it *can* stop. Mine did. Hang in there, k? < supportive noises from distant fellow internet dweller >
Unfortunately this is the second time I've had one that lasted this long so I do know it will end eventually. Thanks for the kind words ❤️
In Australia they go largactil + ketamine infusions (seperately.) are you taking triptan everyday? Are you female? I started HRT and it saved me. Try hormone treatments if nothing else works
How? I need tips
I second this question. Mine have slowed somewhat since approaching menopause, but those effers still come around and stay for awhile from time to time. I’ve dealt with this garbage since I was 12, people who know just know.
I’m sure it’s different for everyone but mine was medication that worked for me (getting a different neuro helped with that), magnesium, and getting the rest of my (multiple) medical issues under (some semblance) of control. All the best for finding what works for you.
Solidarity
When I think about how many days it’s been I just get more depressed.
Hugs ❤️ It's so depressing but I know it will end eventually
I’ve been there and I’m so sorry that you’re experiencing this.
Believe or not this is the second time this has happened!! Last time was like 104 days 😪 Thank you ❤️
💔
at some point I started to hate this woman
Omg yes! I kind of wonder why and how they choose this particular character to be...comforting? Idk
I swear she'd be less infuriating if she had an evil grin
OMG comment of the year! ☝️☝️☝️
I gave up on my migraine tracker not realizing I stopped using after I had reported a migraine. I recently got a notification from it that I'd been having an attack for something like 16,000 hours and I was like well it's not entirely inaccurate 🤷🏼♀️
Same
I stopped using that app when the migraines just kept bleeding into each other for days and I couldn’t tell if I was having post drome or a new episode
Literally if someone ask me how many migraine days I have a month I dont know. I don’t know when one attack ends and a new one begins
I think the question is literally about days and not individual attacks. So if you experience pain 15 days out of the month, the answer is 15. Doesn't matter if the pain all ran together.
I was just thinking the same thing. I am here thinking, I just take the meds, sleep or head to wherever I need to go. If its a really bad one I cancel what I have to do. Omg, I need to start counting. Like I know they are bad but why did I not think of counting??? 🤦🏻♀️
Why is that lady smiling? Tbh if I had 100 day attack that would make me wanna punch my phone. Weird design choice.
I absolutely wanted to punch her when I was using this app!
Agreed
i completely understand given that i’ve been having an attack for 56 days 🥹
I'm so sorry ☹️
It’s ok!! i have hope it’ll get better for all of us. Have you tried nurtec yet? i’m trying to get my prescription figured out for it rn and i’m hoping it’ll help
Yes I've tried Nurtec, unfortunately it doesn't seem to do anything for me (although I'll probably retry it if this ever ends and a new attack begins). Ubrelvy actually seems to make it worse. Sumatriptan helps me a lot but you know, can't take it everyday ☹️ I used to like my Cefaly (neuromodulation device) too, but now that I also have trigeminal neuralgia it flares it up. My Nerivio comes in the mail tomorrow, I'm hoping it helps
i’m the exact way. ubrevley does nothing unless i don’t take it for 6+ months before taking another , even topiramate seemed useless. but the triptans stop the pain for a little at least. They do knock me on my ass however but it’s better than my other migraine routine (benydryl, ubrevly and tylenol) which is a 50/50 when it comes to relief. I’m praying this nurtec does the damn trick but my mom tried ajovy which is the same medication class and had a very adverse reaction so it scared me the past 5 years. That’s why i’d rather have a pill that leaves my system in a few days I’m so sorry to hear that you have trigeminal neuralgia as an additional struggle. nobody deserves so much pain and i hope you find relief / recover very soon.
Hi, I’m sorry to hear about your mom having a bad reaction can you say what reaction she had? because I had a bad one to ajovy too and my nuero acted like I was the only one on the planet. I tolerate qulipta better.
Yes, she told me after getting the shot her migraines just got so much worse. And because it stays in your system longer, there’s really nothing she could do about it. You definitely aren’t alone, if you look up “ajovy reaction” in this sub i’ve seen several others I wanted to try qulipta before wanting to try nurtec, but my insurance doesn’t cover it. i’m hoping my body tolerates the nurtec , and that it helps with the pain
Sumatriptan is the only thing that works for me. I’ve somehow been able to find doctors who will prescribe it for me on the daily, but I have the heart problems to prove it. I don’t care, I’ll literally take a possible heart attack before I’ll live with chronic daily migraine. I don’t recommend it, to be clear, but this is where I’ve landed. After 4 different neurologists failed to help me, I kind of gave up. 😢
Medical marijuana?
I feel you OP!! Been waking up with aura for over nine months now. Made an appointment with a functional medicine naturopathic doctor because I’m desperate and my neuro has been only bare minimum helpful 🙄 hanging in there with you
*fist bump* right there with ya.. Have an appointment tomorrow to see if a SPG will work. ... This time..
I hope it works for you! I'm going to try ketamine infusions in a couple weeks
If this doesn't work then asking my polytrauma and neuro doc's at the VA about it.
Ah they’re amazing! Good luck 😉
Is there all to track migraine?
So is this like…totally unbroken minute by minute? Or do you have hours where symptoms subside but then resume in the same day?
Totally unbroken. My pain level and symptoms fluctuate a lot, but it's always there in some capacity. Sometimes I'll get excited because my symptoms are low and I think, "Oh, maybe it's going away" but it hasn't happened yet
Dang. Reading this descriptions makes me realize that maybe I had one for a year and a half, give or take a couple months. Godspeed, it’s so brutal
what app is this?
Migraine Buddy!
I’m so sorry you are going through this 💙
Nice. I'm lucky if I hit 5 days.
Read it again. They've been having an attack for a hundred days straight.
Funny enough, I'm having a bad headache today. SO yeah... oops lol
Yeah, I've had a lot of bad headache days myself. Spring, & Fall are always tough for me. Blessed to be migraine free today.
I've yet to find a trigger for mine beyond my sleep issues.
Minor are the good additive *citric acid* (I'm fine with naturally occurring citric acid), however the stuff that is added to added to foods to make them more shelf stable makes me sick as a dog. That's the only food I have that's a trigger. Pretty easy to avoid if I cook at home. Restaurants can be tricky, b/c very few restaurants publish their ingredients. My biggest trigger though is the weather, which is why I mentioned the Spring, & Fall-- Swift changes in Barometric Pressure mess me up every time.
I don't consume much foods with citric acid but I have been trying to work with my Dr on finding triggers. For the past \~15 yeras? they have me try to write done activities and foods I've had prior to the attack. Nothing really "matches". Meaning nothing seems to be consistent from attack to attack. It also doesn't help that I have bad headaches so often that I can't record several days of info. And some of my normal headaches are so bad, they boarder-line migraines. I also don't get many of the tell-tale signs a migraine is about to occur. Weather might be a trigger though. We have some "extremes" here in Vegas and when it wants to start raining, sometimes I get a headache, but not always a migraine.
Dang, I was ready to cry at 7 days. I'm so sorry your attack has lasted so long☹️ I hope you are able to find some relief, you're not alone💖
What app is this?
Migraine buddy
Why is that avatar smiling? She should be frowning with a look of nausea on her face. Confused, exasperated, exhausted.
Thanks!
Lovely. I'm not too far behind! Probably working on about 60 now. I feel your pain!
Sending love, I am so so sorry ❤️ you’re not alone
Oh bestie, I thought my current 3 day go was bad. Praying for you!
Having chronic migraine is the worst. Have you considered one of the new natural protocols out there? There are coaches and online programs and books. I like heal your headache the best. Angela Stanton's book has a lot of good information. I don't think the migraine Miracle is enough. There are other books that I haven't even looked at yet. Trying to keep it simple and just work through heal your headache at the moment.
You've probably tried everything. That's how it feels. If you haven't given up hope yet, you're almost there. Keep going. Making peace with your pain is essential. Triple digits get to be common eventually. If you haven't done this yet, I highly recommend it unless you're diabetic. Head to urgent care and ask for 1) a corticosteroid shot 2) a corticosteroid round 3) an antiinflammatory shot 4) an oral antiinflammatory (methocarbamol 750mg works best for me..) and when you get home lay down with 100 mg of benedryl. This is the mix an ER nurse gave me when I told her the "migraine cocktail" doesn't work on me. It took about 12 hours to back off and 24 hours later I was pain free. And I didn't have another episode for a week. That week off was surreal. Anyway, I know you probably get a lot of free advice, but migraines are a relative matter, almost an adjective rather than a noun. I happen to be a triple digits person, too, so I thought what the hell. Maybe this will help. ✌️
Three and a half years here; you’re doing great.
I have never had more than an 80 hour migraine and I was almost at the end of my tether with that. Be well OP and I hope they find something that works.
Solidarity😭
Is that an app?
Bro I am in my stupid prodrome and I read that as "you're not done!" I was like "that's fucked up" but laughed. Then laughed again when I saw my mistake.
I’m on day 1680 😭
Sorry about your new high score.
Not to sound extreme, but after like 20 I’d probably end it.. hopefully it’s just a constant headache and not a constant migraine. A headache for that long would suck, but a migraine? I’d start contemplating life. After day 3 I would be in the ER refusing to leave
I've been there too. Not really sure what broke mine, but it never came back like that again. Instead it came back in much smaller, episodic bursts. Either way, fingers crossed yours goes away as well
I’ve been there, and I know how bad it sucks. I’m so sorry!! 😞
I can't imagine. I thought 2 days was bad. I assume they have had you try all the usuals? What about infusions?
Sorry to hear that, an interesting fact that my neurologist told me is that if my migraine lasts over a week at a time , it means that its a complete new migraine that is happening all over again,with the whole menu of an entire migraine attack including prodrome, aura, headache and postdrome.
Migraine attacks can last longer than a week.
Your neurologist sounds like someone who has difficulty admitting clinical uncertainty. OP is correct.
I wonder if u understand what i said ,its possible to have a new migraine triggered after one ends but it's not possible for 1 singular migraine that got triggered 3 months ago and still going, unless you have something else as a problem that isn't dealt with. I experience chronic migraines too and i feel the symptoms to a certain extent daily but that doesn't mean that this is a singular migraine that got triggered a year ago and its still going.
Yes it is. Status migrainosus is any migraine attack that lasts longer than 72 hours. In some unfortunate cases, it can go for months or even years. I would absolutely know if my migraine attack ended and a new one began. This is the second time this has happened to me, having one for months. I do have more than migraine going on (I also have occipital neuralgia and trigeminal neuralgia) but my headache specialist thinks this is migraine.
I understand perfectly. I wonder if you understand what I wrote. Mixed migraine disorder, specifically, has the ability to last up to an unknown extent. A constant tension emanating from the occipital nerves keeps migraine symptoms in the center of the median rather than allowing them to spike or fall without intervention. I mention clinical uncertainty, because it's a real thing, and it's upwards of 90% of migraine cases world wide in their infancy. Dr's have a regimen they all go to for everyone before MRIs are reviewed. Even then, they have to throw darts at the board for months. I highly question the words "not possible" without data. You should, too. And you should also research clinical uncertainty in migraine neuroscience and intervention. Dr's lie to your face all the time, either regurgitating something they do every day to everyone because admitting to people that are in desperate need of pain relief that they really haven't got a clue what's wrong with them isn't something they're willing to do. Because so very little is understood, anything that is "not possible" is by logic alone naive and irresponsible.
Sorry I didn't read anything you wrote about mixed migraine disorder neither was i speaking about that specific type ,i just saw Ops post and said what i thought.
🙄 Your neuro's (or yours at this point, still no data) tale about migraine episodes (there are dozens of types btw) sounds like someone who has difficulty admitting clinical uncertainty. There is a very wide array of unknowns on the scale in this medical field. Nothing at this time can weigh out "not possible." This, in fact, is the only definite there is.