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Living with Migraine

Does Anyone Get 10 Day Long Attacks?

  • By Susan L

    Even though I am on a significant daily dose of Topiramate that generally is a very effective preventative, and I get Botox every 3 months, plus I take Maxalt (generic) no more than 3 days a week, an analgesic no more than 2 times a week, (because I get rebound headaches if I take anything more than that, & I don’t take anything stronger than XTRA Tylanol for the same reason except once every 2 months or so), I still get these MONSTER MIGRAINES that last for 10 days. Now, I’m a chronic daily migraineur, and have been one for about 4 years. I’ve had migraines for 55 years. Never every day, as I do now, but much of my life has spent fighting migraine disease. The treatment I’m on now keeps me out of bed most of the time – except when these 10 day attacks hit. I just want to die, the pain is so unrelenting. I can take Maxalt during some of these 10 days, but these 10 day attacks are so severe, it doesn’t work as well as it usually does at other times. Anyone else experience these?

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  • By raine

    I do sometimes for more than two weeks, and they are very severe indeed, I get hospitalized for them. I’m nearly hospitalized each month, doctor diagnosed them as status migrainous, migraine lasting more than seventy hours. I’m on several preventative, currently on gabapentin, nortriptyline, propranalol (although I’m on it because I have a fast heart rate, Dr. Said it helps with the migraine). I also take depro provera and piveill dot to help with menstrual migraine. I also see a pain management Dr, neurologist and physical therapy Dr/acupuncturist. The pain management and pt are new I just recently started.

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  • By Susan L

    Hi, I find your story interesting. I just came off the worst attack yet – it lasted 17 days. I take topiramate – a high dose, 200 mg twice daily – which helps me a lot. (Although a 17 day attack doesn’t sound like it, but every time I take the topiramate, the migraine pain decreases significantly once it gets into my system). I tried gabapentin, and I can’t remember what happened with it. I haven’t switched to propanalol…yet…I assume that is in my future. I also have a fast heart rate and hypertension. I have very low potassium and need supplemental liquid potassium because I have (benign) heart palpitations. Does the propanalol effect your weight? My neurologist didn’t like depro provera for me, I don’t remember why, but I can take Maxalt (generic version) 3 days a week, and I very rarely take hydromorphone. I rarely get beyond a Level 6 pain, but the constant pounding, throbbing never-ending daily pain, plus all the other symptoms – I take something for nausea, too, takes an enormous toll, as you know. I don’t feel like I have any quality of life. You don’t feel like you do, either, do you? I’m past menopause; sorry you’re still hormonal. My heart goes out to you. I wondered if anyone else suffered this kind of lengthy chaos…

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  • By raine

    My heart goes out to you too. Unfortunately status migrainous is rare, I read up on it. I’ve tried Topanga in the past and indigent to for me my concentration was horrible when I was on it, almost goto into a car ent a couple of times. My potassium gets low too, I’m not on supplements t in the hospital they often put I’ve potassium liquid cause mine is low. Propranalol would probably help with your fast heart rate and hypertension depending on the dose, I’m on 80mg twice a day. I took maxalt when I was in college about. 6 years ago but I don’t remember why I had to get off from it. Right now I’m actually on sick leave I was in the hospital for 5 days but. Still had the headache upon discharge. My doctor told me to take Norco around the clock and if needed take dilaudid. I ran out of my sumavel shot, this is a sumatryptan which is taken as a needless shot. I also tried Cambria that works as well but not when I get the severe migraines.these work for me when taken early but when I’m at an 8 to 10 it doesn’t work my migraine can be very intractable not responding to patients.I agree with you I don’t feel like In have a quality of life since I miss a lot of stuff like I am absent from work a lot, and miss other activities. Especially when I have other symptoms like like sensitivity, nausea, noise sensitivity, etc. It’s not only the symptoms but side effects of the medicines that also hinder a good quality of life. I’ve been having these long lasting headaches for a little over two years now.I really do feel for you cause I know what your going through.

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  • By Anna

    Hi. I’m no expert but your migraines sound a lot like mine (also diagnosed with status migraines). I would talk to your doc about status migraines, like larraiv mentioned. You can’t get the proper care unless you get a good diagnosis, whether it turns out to be status migraines or not

    Have you ever been hospitalized for these migraines? If you haven’t, and if it does turn out to be status migraines, I would try that. Your doc can order a custom IV infusion, so you can get certain drugs that might not work as a pill, or maybe a higher dose under the doctor’s supervision. They’ll also give you fluids a lot of the time since migraines can leave you dehydrated. I’ve found that even if the meds from the IV don’t work I at least feel a little better from the fluids. Hydration makes a big difference but sometimes nausea makes that impossible 🙁

    The thing with status migraines is that they are really important to break because they can lead to increased risk of stroke. As I understand it, the longer the attack lasts, the more at risk you become, so if you do have status migraines try to get in touch with your doc or get to the hospital sooner rather than later

    I know it’s tough, and I really hope you find some solutions

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  • By Anna

    Scratch what I said before — status migraines can lead to increased risk of stroke, but it doesn’t get higher as time passes. Sorry to spread misinformation. One of my docs told me the stroke thing but after a while I found out that she was unreliable so I asked another doc and he said that was ridiculous.

    Still, you don’t want to suffer longer than you have to, and I’d still recommend getting help ASAP when you get these attacks

    Good luck

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  • By ZSharon

    I find that sumatriptan works well, but when a migraine returns daily or nightly, it can go on for 10 days. My personal challenge is to assure that I’m not getting rebound headaches.

    Treating a long-term migraine can create a vicious cycle of pain. My neurologist suggests that my development of migrainistan.com is my way of sublimating my frustration. This is all well and good, but the conundrum remains.

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  • By Susan L

    Hi ZSharon! Your Avitar is just great! I’m making another appointment with my neuro this week. He’s a migraineur, too, and I think I’m his most challenging case. He’s very well respected, and from all I read on this – what do we call ” this” – a board or newsletter? I find “here” to be my most informative migraine resource, although I do comb thru the Internet to read recent articles/studies. I’m saying I trust my neuro, and my pain management doc who does my Botox is also excellent. But I seem to be an extremely difficult case to treat. Like you, I am beyond frustrated, but unlike you, it is not with my doctors. I feel very badly for those of you who have that issue to deal with, too. I also see a psychiatrist because I have chronic depression, And he monitors my fibromyalgia med, too, plus insomnia. So he weighs in on all of this. These 3 confer and keep my triptans in the proper, safe ratio. But I’m still struggling with almost daily, at least a level 4-5 pain ratio migraine. I’ve tried alternative therapies with little positive result. Fortunately I have no food triggers!!! Environmental and stress. And no rebound headaches. I go cold turkey A LOT on the pain. Learned that lesson years ago. Wish marijuana were legal here in Florida…when I was younger, it was the only thing that worked on my horrible menstrual cramps and migraine, but only on weekend nights because it left me stoned!

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  • By Swiftee

    Wow, here I thought I was alone. My last episode lasted almost two weeks. Had to go the hospital. I got so tired of telling my husband I had a headache, everyday. I think I waited too long before I got treatment, I was hoping the pain would go away, big mistake. Having read through the previous post, it’s the first time I’m hearing about Status Migraines. I’m going to the doctor to get a proper diagnosis. I’ll ask him about it. Thanks for the info.

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  • By Andrea

    I’ve gotten them before I was treated at the IMATCH (Interdisciplinary Method for Assessment and Treatment of Chronic Headache) program at the Cleveland Clinic. One of the best things I’ve ever done. If you’re interested, google Cleveland Clinic IMATCH and there’s a PDF document on it. I used to get hospitalized and get DHE intraveneously round the clock for three days. Broke the cycle. I couldn’t go to my local hospital, had to go a distance away. I guess some hospitals have it, some don’t. Check with your neurologist. Sorry to hear that you’re suffering so much.

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