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What will be next?

Mine started when I was 14 yrs old, I’m now 57. I have been diagnosed with cluster/migraines. Where one can set the other off. I have never had auras or anything of the sort. I always wake-up in the middle of the night and it’s full blown with nausea then dry heaves. I have gone the gambit with treatments including Biofeed back to Botox. What truly worked for me is no longer used. Dermeral and Fenagan injectiins. I’m now on pain management with Morephine Sulphate Extended Release 30mgs twice daily and Morphine Sulphate Immediate release 30mgs for hreak through pain. But i hate how the Immediate Release makes me fill and the hangover the day after.

I will be going to a new specialist and tapering off all the Morephines, not sure what we will be doing next. This will be my 11th Neurologist/ Headache Specialist sense they started 43 yrs ago.. I was told that it’s not common for a male to have these, that its usually females that have these…..lucky me huh. I know my triggers by several years of headache journals. I’ll keep you posted with what we do next.

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  • snorkiefree
    2 years ago

    My husband’s chronic headaches began 20 years ago; we’ve see 8 neurologist; tried a lot of things. My husband said the extended release medication doesn’t work for him because it never releases when he seems to need it. He is doing Botox but ended up in ER with pulmonary embolisms blocking both lungs; if he hadn’t gone to the hospital when he did he would have died. Why..because we can not find the cure to the headaches which keep him in a dark room more days than not. The neurologists we’ve seen all say oh try this medication or that OR go off everything and try this…blah, blah, blah. It was after ICU when the PE was controlled I complained of his run away headache. the time they got to him he passed out and shook. Long story short we talked to the hospital neurologist who said keep trying. Then he wrote out this plan to get him off all drugs (except Botox) then do 5 days of outpatient IV infusion therapy takes 2-3 hours; he said most of his patients respond to this therapy. Then the preventative drugs have a chance of working. He said the preventative medications can’t work if the headache is past preventing and running away. Which is what my husbands has been for well over 1 1/2 years. So, now the headaches are causing him clots and almost cost him his life.
    What I”d like to know is why do more doctors not use IV infusions; have you heard of them or tried them? Our PC doc says to keep trying and he’ll be our advocate for working with the specialists so we are trying again. Has anyone had any luck with IV infusions? Thank you for your time and input.

  • Nancy Harris Bonk moderator
    2 years ago

    Hi KenBizzell,

    Thank you for sharing your story with us. I’m happy to hear you’ll be seeing a true migraine expert – it can make all the difference! I’m currently seeing my 5th true expert and seem to be making headway.

    Cluster headache and migraine disease can occur at the same time but are not caused by one another. While it’s true migraine disease impacts more women than men, it’s entirely possible for men to have it as well.

    Please let us know how you make out at your appointment!


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