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  • By Mcpep

    My wife is in a migraine cycle and have run out of options. She has been hospitalized for two weeks over the last month and no one has answers. We are in the CT area. Does anyone have any recoomendations on where to look next?

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  • By Mcpep

    Preventatives
    Botox
    Injections
    Nerve blocks
    High dose of steriods
    Fluids/magnesium

    She is meeting with the head doc at her headache specialist on Thursday. Hopefully he has some ideas on how to move forward. Nothing seems to be touching this headache cycle. It came out of no where. She has chronic migraines but usually can get out of a flair up, not this one.

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  • By GardensatNight

    You say fluids/magnesium, so I assume you mean an IV infusion. Do they ever give her anything else in the infusion besides fluids and magnesium? I also have intractable migraine. Sometimes I’ve had one that will go on for 6 weeks or two months (which sucks.) Usually, they just last five days to a week. The only thing that works for me is infusions. And when I’m in a really bad cycle, I have to get infusions multiple days in a row (I think the limit for safety at my infusion center for what I get is 3 daysin a row and then you have to take a break until you’re a week from your start date, but your doctor can tell you more based on what your wife would be getting.) Anyway, I get depacon (valproate sodium), magnesium, fluids, and if it’s bad, I also get DHE, zofran, and there’s other stuff you can get like steroids and benadryl.

    I don’t know about your wife, whether she’s going up and down, or it’s just unrelenting and nothing is touching it, but my problem with a lot of the drugs they would try (like steroids, benadryl, triptans, painkillers) would be that they temporarily fix or improve the problem, but the rebound migraine they cause is even worse. But everyone is different. Her headache specialist would know best about her case and what would work best for you. I’m just throwing out ideas. I’ve read other clinics like Jefferson can give you infusions of other drugs (Katie Golden has written some great articles on it) that can help, too.

    I also had to get myself completely out of any environment that could be providing triggers, which sucked. I’m guessing she’s probably already doing that, though. Sorry this is happening.

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  • By Mcpep

    She just got out of the hospital. Two stays in one month. She got iv infusion of reps on, steroids, Benadryl, zofran, mag, fluids.

    She received dhe years ago. As soon as it entered her body she threw up for hours even with zofran. I’m not sure what is next.

    You said some went five days and others up to six weeks of a migraine. What touch it and got the pain back to a manageable pain score?

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  • By GardensatNight

    Yeah, DHE can be a beast. People either tolerate it fine or it makes them crazy sick. Sorry your wife is one of the unlucky ones. Might ask her doctor about depacon, if you’ve never tried that.

    I’m going to link some articles written by Katie Golden. She has to deal with a lot of pain and gets infusions with some newer drugs they have been trying with some success. I know she goes to Jefferson. If you think you might want to go there, I would start calling now, because it can take months to get an appointment. They’re in Philadelphia.

    https://migraine.com/blog/headache-camp-round-2/
    https://migraine.com/blog/patient-perspective-ketamine/
    https://migraine.com/living-migraine/official-study-results-from-headache-camp/
    https://migraine.com/blog/ketamine-for-management/

    For my experience in the 2-month migraine, I did lots of resting and used a LOT of ice. Dark room. Didn’t move except to go to bathroom. Books on tape. Went to infusion center for depacon/magnesium/fluids the three times a week I was allowed, which would bring the pain down some. And very slowly, my brain calmed. It sucked, though.

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  • By Mcpep

    Tried deacon with no success.

    Jefferson is not covered by insurance is my guess.

    So your body just got you out of the cycle during those two months? Nothing else touched it?

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  • By GardensatNight

    Well, what was different for me was that I responded to the magnesium, depacon and fluids. Slowly. But if she’s not responding to those at all, sounds like it may not be the same solution as it was with me. Hopefully her headache specialist has some ideas.

    This is probably a stupid question, so please forgive me. But when some of my doozy multiple month migraine streaks have happened, they have been triggered at times I was either trying to do too more than I was able to or exposed to lots of triggers. I’ve been able lately to achieve somewhat better control by not overexerting. Have you and your wife identified if there are any triggers she’s being exposed to (light, sound, weather, food, stress, hormones, smells) that could be exacerbating things?

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  • By Mcpep

    The plan is a dhe infusion over four days. She has had she 10 years ago but got very sick after one dose. They are going to go as slow as they can.

    Any advice on on weathering the dhe?

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  • By cdaniw213

    I would be very prepared for the nausea that it will create. What helped me was crushed ice and taking nausea meds 30-45min before each session. I would always carry peppemint oil and place a little bit under my nose

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  • By GardensatNight

    IV Zofran given ahead of the DHE.
    Very cold water in sips.
    For me, it helps with nausea having a little something in my stomach, crackers or toast to nibble on, but everyone is different.

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