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Out of options!

I am 32 yrs old and in the last 3yrs I have been hospitalized about 3 times once for a full 2 wks. My migraines are extremely bad I have left side weakness in both face and limbs, blurred vision, Nausea, and my insomnia gets really bad during these episodes. I sometimes become unable to care for my kids. I have tried several cocktails of medication, DHE, and botox. They stopped the botox because it wasn’t giving enough of a relief. I’m not sure what other options are out there or if I’m going to be stuck like this and for how long. It kind of scares me because I can go a couple of weeks and be OK but every time they come back they last longer and the symptoms get worse. I have been dealing with migraines for the last 12 years and they have gotten 10x worse over the years.

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  • Marylin
    2 years ago

    Hi. I wish I could say “here’s my little magic wand, let’s wish it all away.” I’ve suffered from migraines for a very long time, well over 16 years, and I am now 40. My Nuero over the last 3 + years as tried everything from triptans, to anti seizures, to DHE to Ativan, Magnesium, Decadron, Toradol, etc, etc, infusions. One four day hospitalization in 2013, one 8 day hospitalization in 2016. My migraines are so severe now I’ve been sitting and sleeping on a couch for a week with horrible muscle spasms.
    Discouraged can’t even come close to describe it. I see my life slipping by, quality, career, goals. It is very hard and my Neuro has run out of options. The spasms leave me tired, sore and unable to function. The Ativan no longer works for the spasms. I take 1 mg every 8 hours, if I cut the dose in half so I’m not a Zombie, I get 3 hours relief and that’s it. Honestly, I’m reaching the end of my rope here. The little slack I do have left is hoping the headache clinic in Boston, MA offers some hope.

  • Hammerhead
    3 years ago

    I am 67 and still nothing to help this so many words to call them ,many really hit the nail on the head (that’s a good one but I would say thousands of nails hammered to the skull then when its almost over my head is so sore I feel as though a prize fighter beat me in the head to finish me off.It is so hard to keep appointments as people with these heavy duty monsters in our heads just can’t hardly see as things are blurry and driving is dangerous during a full blown migraine.I was charded a lot of money each time my migraine unpredictable with the weather or without that these offices we must go to for instance dental don’t have the slightest clue this is a disability and we cannot control it on the days it lands on so they didn’t listened when I warned them of appointments so I told them I would call and hopefully see them that day as this was a special case and when they do not listen they charge and will take it regardless ( migraine disrupt our business we must take care of and other health issues if we have them.Many just can’t take meds prescribed for migraines as we are all different.What ever works I say ! No doctor has said heres a guaranteed cure-no more migraines.I have had family with chronic migraines.I was told that BC powders would keep me from having blood clots but that’s only a rumor.I have been their done that back in the day and in this day and where’re all in the same boat ,floating in deep water hoping ,crying for these crazy off the pain scale (causing many to have high blood pressure from the heavy duty high level) we suffer.Alot of other misdiagnosed things have gone unchecked as many foreign doctors just getting their liscense do not know what to give us and don’t feel comfortable in giving whatever he was told that helps.They like the power .and don’t have a clue about what migraines do .We are typedcasted into being women with female issues even though there are countless seniors.I still am learning .Rain or not rain mine are in predictable .I do not blame or hate people that just don’t know how big of a health issue Migraines are ,unless the migraines effect the familys events ,copany unannounced and we are under the covers bedridden.I only weigh 80 pounds from not being able to eat and I starve even though nausea is on going with it.I would love to know from a specialist of whatever kind if the stomach being emptied connects to our brain and for me it usually helps alittle to relieve that awful feeling of nausea.I sip cancer syrup for nausea.My dodtor is worried about my heath yet I have had my neck injjered along time ago with 2 surgerys to my neck vertbres (almost too close like supermans neck )but the headaches first under 13 then the pain escalated to high school so then the wordt happened as I had to quit school and no any programs available for this disability.Noy pitying myself just saying as many people have so many similar stories and more.I stay with what works for me and no one knows this pain but the ones who have it and at different levels ,unfortunately mine went way over the chronic pain scale .Wish something would happen and take away all our pain we suffer<3

  • DonnaFA moderator
    3 years ago

    Hi lharris0309,

    Please know that you’re not alone and that we’re here to share support or just to listen. I’ like to share “Is it Time to Find a New Migraine Doc” to help you connect with a headache specialist in your area, who can help you feel heard. We also have resources to help you connect with support in your area.

    Please don’t hesitate to reach out of you need support, and I’d also like to invite you to visit our Facebook Page if you have not already. Warmly, Donna ( team)

  • aks868
    3 years ago

    You are not alone! I have had times when I could not care for my children too. Try to remember who you can count on to help out; and, in a pinch, when my children were younger, I had movie days. I know it is awful, but there are other medicines available to try. Do you have a good neurologist?

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