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stuck in status migrainosus!! is there anyone else???????????

i started getting migraines around age 7 one or two a month at age 15
they started getting progressively longer longest one being 127 days.
as i write this i am currently on day 57 with no signs of end. nothing works to break them . prednisone, the iv cocktail even with all the additives and several other meds steroids. I am also triptian resistant and have tried a list of meds all with side effects or no help. neruo at uw is now recommending Lamotrigine. any one else stuck in this cycle?

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  • musicalma
    2 years ago

    I have migraines with aura on occasion that last anywhere from one day to three days max. I had facet joint block injections on Oct. 23 in cervical area (C3-C7). My migraine started 2 days later (Oct. 25) and I’ve still got it however it has lessened in severity. I cannot shake the vision issues in my left eye though. That is a little concerning tome. I went and had an eye exam, in the middle of a more intense migraine, and paid extra for pics of my retina…they all checked out ok and healthy, yet I cannot see well in my left eye – everything is blurry and at times there are “blind spots” , it’s hard to describe. I’m better in the morning but as the day progresses so does the loss in vision and the pain accompanying it. I have Imitrex as a rescue, and it takes the edge off, but I still can’t see…. how long can this thing last???? Should I be more concerned about something else??? Please anybody who has experienced this please chime in….I feel alone…

  • stephinejh
    2 years ago

    I’m stuck in a long running string now. I’ve been down since July 27 with little relief; in spite of a trip to the hospital and a few doctor visits. I’m about to lose my job and I’m terrified. I’ve never gotten quite this bad, but all my tests appear to be okay. I frequently have longer term migraines, but usually they’re in the mild-moderate pain level. At this point, I’m not functioning at all. There are days when I don’t even leave my room. I’m on a combination of depakote and propranolol with maxalt as my rescue, but it’s not working very well. Admittedly, I only started the depakote/propranolol combination in late August so I might be just jumping the gun on effectiveness. Plus, it’s hard to judge a new medicine combination when you’re stuck in a migraine. I’m just losing hope at this point. I’m getting so tired of people being like “you don’t look sick”. My family tries to understand, but other than my mother, no one else has experienced it (and she only had one!). I’ve tried explaining, but nothing I say can make them understand that it’s not a headache.

  • Pamelareiner
    2 years ago

    I am stuck in the post-drome phase for 3 weeks after an ocular migraine. I am exhusted. My days consist of getting up for a short duration and then laying back down. I begin to worry that something serious is going on. All my tests are normal. This is such a depressing way to live. Usually I am very active and run my own business but I might have to semi retire. Has this happened to anyone? Any advise?

  • lynni
    2 years ago

    I have had a migraine 24/7 for almost 16 years straight.
    I have been through most meds and all the side effects that go with them. The most relief that I got was from methadone. Was on that for over 10 years. Went off of that a year ago. I DON’T recommend that. I had good days ,but paid for each one. Took at least three days to recover after going out for supper.
    Not much of a life anymore other than pain of one degree or another.

  • jobee7
    2 years ago

    Take it. I started migraines age 14, normal everyday ones. After I hit 30 they went longer, stranger. I’ve always had aura and aphasia, very little pain if any. The aura got harder, weirder, closer to epilepsy symptoms. About 3 years ago I had one that lasted 3 weeks, though it reduced before I went to seep at night and when I woke up. I was in hospital 3 times in a week, check ed for stroke, mri, all clear. I was prescribed lamotrigine, it worked. The first week I was on 25mg, felt a bit better, went up to 50mg week 2, came back to normality properly. I stayed on it for about 6 months I think, came off it, had another attack 2 months later after having alcohol. I’ve now been on it again since, over a year and a half. I still have attacks if i ever accidently eat dairy, even tiny amounts, but the meds stop it getting out of hand – I’m in the middle of one now but no brain fog and my arms aren’t shaking. Lamotrigine allows me to live independently and work. it made my skin a lot more sensitive, and you can’t have alcohol at all, but it’s worth it to feel normal again. It makes me feel emotionally more balanced and I don’t think in worry spirals any more. I’ve wondered if this is how other people feel all the time. Being in status migrainosus is a lonely terrifying place and you totally have my sympathy. I’m on day 3 of a mild attack right now, totally down to working ridiculous hours at work. There will be better days. Hang on and you will get through it.

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