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Status Migrainous

In 2014 I was diagnosed with status migrainous which is a very rare condition in which there is debilitating pain for more than 72 hours. This condition can cause a stroke. My nuero has no idea what caused this. Treatments don’t work.. I’m at a loss of what else to try :(.

If anyone here has this condition I’d love to hear your story and ideas for other options.

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Comments

  • saqueas
    1 year ago

    My neurologist believes I am in a constant state of migraine also. However, my PCP believes I have had 2 instances of status migraine. My triptans didn’t touch them. Both time they have come on after my day 6 of my work week and they started in my sleep. Starting in my sleep, I didn’t have time to even take a triptan or notice. My neurologist basically suggested to sleep less, or wake myself up to make sure they didn’t happen. My first one lasted around 7-8 days and my second was 6.

    In both of these instances, I had no yet seen my neurologist, so my PCP had given my a steroid taper. It took a few days but it finally got them to go away. Now I have triptan pills, injection pens, and nasal sprays. I use the pens when I know a bad one is in progress, if I am already vomiting, etc. You basically have to recognize which symptoms leas up to them and have medications to take to stop them before they happen. I have luckily not had another now that I have this arsenal of medication. I also receive SPG nerve blocks bi monthly. Most of the time they take, but sometimes they aren’t as effective as other procedures.

    I hope you find something that works for you. 🙁

  • GardensatNight
    1 year ago

    Yup. Mine are like this. Sometimes I’m written down as status migraine, other times as intractable migraine. My migraines always last at least 5-7 days. It’s bad when they go on for months. I love it when they say not to have a migraine for more than 72 hours because it’s a stroke risk. I really wish I could tell my body to cut it out. Because I really need to be panicking about a stroke on top of being depressed about having a migraine every time.

    I do not respond to triptans any more. My body really likes to rebound and just gets worse if I take them. Same thing with painkillers. The only thing that helps me is IV infusions. You can get lots of things in an infusion. Steroids, depacon, magnesium, benadryl, reglan, zofran, DHE, fluids, toradol… I’m sure I’m forgetting some. Anyway, your doctor can talk to you about what’s right for you. Infusions don’t magically make my migraine disappear the next day (nothing does) but they make my brain calm down after some sleep and time. I often need several days if it’s a bad one.

  • Luna
    1 year ago

    Maybe something here will help. There is a search tool on the top line to use.

    https://migraine.com/living-migraine/how-do-you-break-wont-stop/

    https://migraine.com/living-migraine/a-new-research-grant-studies-a-severe-form-of-migraine/

    There is a search tool on the top line to use. This is the first page of articles using it.
    https://migraine.com/?s=Status+Migrainosus&submit=Go

  • MigraineSavvy
    1 year ago

    Thanks Luna, those links are great…I will have a read now. I had status migrainous for… over 25 years. It was like torture, but luckily I had a triptan that worked. Still… 14 years with no effective pain relief. I’ve not had a migraine now for about 2 years thanks to menopause. And I have to say reading this brings tears to my eyes for those who haven’t found relief. This is such a hard journey… sometimes it just leaves me speechless. So.. all that to say thank you Luna and to southsidegirll66 for starting this post. I forget I’m not alone… even still! I guess if my migraine eye could handle the computer more… I would be.

    Anyway… praying for pain relief for you.

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