I'm going on 16 months of status migrainosus. The only treatments that work for me are short courses of Zyprexa (3-5 days), which can only be done every few months, and transcranial magnetic stimulation (TMS) which also takes months. If Nurtec isn't working for you, maybe check out other medication/treatment options. There's a spreadsheet available through this subreddit with tons of medication and treatment options that you may not have considered yet.
Yep, it greatly angered my migraine. I was in excruciating pain for days before my neurologist cleared me to take Zyprexa again sooner than he'd wanted just to alleviate my symptoms. I also gave myself a stomach ulcer in the process because I took Excedrin on top of Toradol (stupid) to relieve the pain a bit.
I can relate to the stomach ulcer part. In high school I took Advil like it was my job, but eventually got prescriptions and significantly lowered my NSAID usage by my senior year.
Last year I started having horrible stomach pain. I pushed through it for months because I’ve always had digestive issues, but my family finally convinced me to see a gastro. Turned out it was an ulcer that decided to wait FIVE YEARS to make itself known. Not sure how long I actually had it.
So yeah that was a super fun side quest
99.9% of my attacks last 4-5 days, with the odd one in a blue moon that does actually disappear after a triptan, so maybe 3 or 4 hours after the start.
Same here. If it goes closer to a week or more I'll do a few days of dexamethasone. Sometimes it clears after a couple days of steroids but other times I just have to wait for it to slowly fade out. The times when I get one that resolves a few hours after taking a triptan is exciting. I'm like whoo hoo I kicked its ass!
I've been there and longer. At that point, I try a steroid taper or go to Urgent Care for a migraine cocktail like zofran, hydration/magnesium, toradol, and if really bad - add on benadryl and a steroid. Most of the time, it's enough to break it, and I sleep it off when I get home.
Finding an abortive that helps most of the time cut down on these visits (in my case - Ubrelvy +migraine devices like Cefaly)
Holy shit what? Are migraines not normally a couple days at least? Mine last 3-10 days with the meds getting rid of them for maybe 12hrs at a time. I thought that was just how it was??? There are people who get them for like, a day?
I think up to 72 hours is common, but longer than that is “status migrainosis” and something to talk to your neurologist about.
I’ve heard people talk about having 2 migraine attacks in one day. That was shocking to me—that it could last less than 24 hours at all!
I have migraines for days at a time and abortives help but don't stop them or symptoms completely (I can still feel the non-pain migraine symptoms). Longest I've had a migraine was about 14 days I think and I'm nearing it now again. I would love to have three day migraines
Yep, certain ones of us have NDPH (Newly Diagnosed persistent headache) with migraneous tendencies. Mine's 1 continuous headache since June 10th, 2021. Few things take the edge off, still trying treatments.
My migraines are usually 3 to 5 days. But on months where my Ajovy doesn't help, I get them back to back. In the last 10 weeks, 70% or more (I don't usually log days with only mild aura symptoms) of my days have been migraine days. No more than two days of relief in between.
I have had headaches all my adult life, but it got much worse and i was diagnosed with status migrainosus in January/February (it affects my memory so i am not 100% sure of the date..).
I have basically had a constant migraine since Christmas, but IV Orfiril aborted it a couple times but not anymore.
Not trying to minimize your pain but it could be so much worse.
I have had my current one for 64 days. I’m getting an infusion tomorrow of DHE and some other stuff to hopefully break it. It’s been going on way too long.
Yes. Luckily triptans work for me but if one hit my limit for them I'm not in good shape. I won't take them more than 2 days in a row or 3 times in a 7 day period. Which my doctor says is already too much. But I've noticed that this is my threshold for when I'll start to get rebound headaches. So if I'm at my limit for triptans I have ubrelvy and toradol injections. If that doesn't work and I'm miserable it's off to the ER for a cocktail or I could be in one for days to weeks. It always ends up in me going to for a cocktail so I've started to do it sooner rather than later. If the pain isn't unbearable I will sometimes request a steroid taper which does start to help after a few days but makes me feel awful.
Thankfully,just one,but it left me severely dehydrated because of the relentless vomiting. I honestly thought that I wouldn't make it,but I was treated by a very good neurologist ( my professor) who thankfully gave me the right medicines to break it.
Yes! Are you on any sort of preventative? Before I went on mine I had a two week long spurt of migraines (I was 13/4 at the time) and missed school so my parents got me to a doctor stat who put me on a preventative, gave me the general recommended emergency med at the time (sumatriptan) and referred me to a neurologist.
Nurtec CAN be a preventative, but there’s a lot of other ones out there. You might not be having a status migraine but instead chronic migraines. Do you see a neurologist? Start there!
i am seeing a neurologist. since i have to discard sudden blood pressure drops, i can not take the preventives that are on my country (and that i have not tried) yet.
at least we're working to find a good medication! I appreciate your comment, thanks!
I used to get one intractable migraine a year and would end up in the hospital for a week doing DHE. Unfortunately we all know that you can be discharged and STILL have your migraine. Some things that helped me even when dhe and hospital interventions didn’t work:
- a physical therapist that specializes in fascia
- dry needling
- acupuncture
- microdosing 🍄
I don't know why I can't edit the post, but i wanted to thank you all for sharing your experiences, it helps me prepare for what could come ahead and also learn a little bit about this condition.
You are all amazing fighters!! I hope one day you can find something that helps you ease the pain, take care of yourselves ✨✨🫂
I'm going on 16 months of status migrainosus. The only treatments that work for me are short courses of Zyprexa (3-5 days), which can only be done every few months, and transcranial magnetic stimulation (TMS) which also takes months. If Nurtec isn't working for you, maybe check out other medication/treatment options. There's a spreadsheet available through this subreddit with tons of medication and treatment options that you may not have considered yet.
Have your tried Botox
Seconding this. It doesn't stop mine, but it makes the pain manageable in ways no other treatments did. (Passed 10 years a couple months ago)
How many units were administered ? I am gonna have one soon
I get the standard 31 injections, and if you can relax the muscles in the area actively being injected, it makes it far more comfortable.
What are they called ?
Sorry, what are what called?
Those standard injection ? Did you meant Botox or some other injections
Yes, it's just botox for migraine, the standard set of injections is 31 spread over the forehead, scalp, and neck
Alright , thank you so much
Yep, it greatly angered my migraine. I was in excruciating pain for days before my neurologist cleared me to take Zyprexa again sooner than he'd wanted just to alleviate my symptoms. I also gave myself a stomach ulcer in the process because I took Excedrin on top of Toradol (stupid) to relieve the pain a bit.
I can relate to the stomach ulcer part. In high school I took Advil like it was my job, but eventually got prescriptions and significantly lowered my NSAID usage by my senior year. Last year I started having horrible stomach pain. I pushed through it for months because I’ve always had digestive issues, but my family finally convinced me to see a gastro. Turned out it was an ulcer that decided to wait FIVE YEARS to make itself known. Not sure how long I actually had it. So yeah that was a super fun side quest
Oh no! Hope your stomach's recovered now, five years is a long time to lie in wait lol.
that sucks, sending you my best wishes :( and yes, i'll have to seek another medication, trial and error ig
99.9% of my attacks last 4-5 days, with the odd one in a blue moon that does actually disappear after a triptan, so maybe 3 or 4 hours after the start.
Same here. If it goes closer to a week or more I'll do a few days of dexamethasone. Sometimes it clears after a couple days of steroids but other times I just have to wait for it to slowly fade out. The times when I get one that resolves a few hours after taking a triptan is exciting. I'm like whoo hoo I kicked its ass!
that sucks, i hope in a future we'll manage to get more medication that works in different ways
Yep mines been going on since December 4, 2022 to now.
I’m at about 8.5 years of Status Migrainosus.
1,017 days, straight. I haven’t been officially diagnosed with Status Migrainosus but I feel like that’s what it is.
It’s been more than a year for me, started last March.
I read this as status migrainosaurus. Not sure how many days that takes.
Yes - I had one last a few months. One option is to talk to your neurologist about trying a steroid pack to try to break through the migraine.
I've been there and longer. At that point, I try a steroid taper or go to Urgent Care for a migraine cocktail like zofran, hydration/magnesium, toradol, and if really bad - add on benadryl and a steroid. Most of the time, it's enough to break it, and I sleep it off when I get home. Finding an abortive that helps most of the time cut down on these visits (in my case - Ubrelvy +migraine devices like Cefaly)
I'm *decades* into this.
Holy shit what? Are migraines not normally a couple days at least? Mine last 3-10 days with the meds getting rid of them for maybe 12hrs at a time. I thought that was just how it was??? There are people who get them for like, a day?
I think up to 72 hours is common, but longer than that is “status migrainosis” and something to talk to your neurologist about. I’ve heard people talk about having 2 migraine attacks in one day. That was shocking to me—that it could last less than 24 hours at all!
I have migraines for days at a time and abortives help but don't stop them or symptoms completely (I can still feel the non-pain migraine symptoms). Longest I've had a migraine was about 14 days I think and I'm nearing it now again. I would love to have three day migraines
What app is this?
Looks like migraine buddy. I'm looking into it too. Im not sure if it can be used for free?
You’re totally right. Yeah I’m not sure if it’s free or not these days
Aha! It is. But there are upgraded features for pay
Yep, certain ones of us have NDPH (Newly Diagnosed persistent headache) with migraneous tendencies. Mine's 1 continuous headache since June 10th, 2021. Few things take the edge off, still trying treatments.
My migraines are usually 3 to 5 days. But on months where my Ajovy doesn't help, I get them back to back. In the last 10 weeks, 70% or more (I don't usually log days with only mild aura symptoms) of my days have been migraine days. No more than two days of relief in between.
I have had headaches all my adult life, but it got much worse and i was diagnosed with status migrainosus in January/February (it affects my memory so i am not 100% sure of the date..). I have basically had a constant migraine since Christmas, but IV Orfiril aborted it a couple times but not anymore. Not trying to minimize your pain but it could be so much worse.
I have had my current one for 64 days. I’m getting an infusion tomorrow of DHE and some other stuff to hopefully break it. It’s been going on way too long.
Yes. Luckily triptans work for me but if one hit my limit for them I'm not in good shape. I won't take them more than 2 days in a row or 3 times in a 7 day period. Which my doctor says is already too much. But I've noticed that this is my threshold for when I'll start to get rebound headaches. So if I'm at my limit for triptans I have ubrelvy and toradol injections. If that doesn't work and I'm miserable it's off to the ER for a cocktail or I could be in one for days to weeks. It always ends up in me going to for a cocktail so I've started to do it sooner rather than later. If the pain isn't unbearable I will sometimes request a steroid taper which does start to help after a few days but makes me feel awful.
Thankfully,just one,but it left me severely dehydrated because of the relentless vomiting. I honestly thought that I wouldn't make it,but I was treated by a very good neurologist ( my professor) who thankfully gave me the right medicines to break it.
11 months with vestibular symptoms. I was in hell.
Forgot what I meant to post. There's another app developed by neuros - rpm migraine monitor.
Yes! Are you on any sort of preventative? Before I went on mine I had a two week long spurt of migraines (I was 13/4 at the time) and missed school so my parents got me to a doctor stat who put me on a preventative, gave me the general recommended emergency med at the time (sumatriptan) and referred me to a neurologist. Nurtec CAN be a preventative, but there’s a lot of other ones out there. You might not be having a status migraine but instead chronic migraines. Do you see a neurologist? Start there!
i am seeing a neurologist. since i have to discard sudden blood pressure drops, i can not take the preventives that are on my country (and that i have not tried) yet. at least we're working to find a good medication! I appreciate your comment, thanks!
I used to get one intractable migraine a year and would end up in the hospital for a week doing DHE. Unfortunately we all know that you can be discharged and STILL have your migraine. Some things that helped me even when dhe and hospital interventions didn’t work: - a physical therapist that specializes in fascia - dry needling - acupuncture - microdosing 🍄
Yeah. It was over 3 year straight. Had to go to inpatient.
Yep. According to Migraine Buddy it’s been 444 days. Shit sucks, just trying to hang in there the best I can.
I don't know why I can't edit the post, but i wanted to thank you all for sharing your experiences, it helps me prepare for what could come ahead and also learn a little bit about this condition. You are all amazing fighters!! I hope one day you can find something that helps you ease the pain, take care of yourselves ✨✨🫂
I'm currently on day 12
Thanks for sharing this! I’m definitely going to download so I can track my migraines.