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Diagnosis of Migraine & Headache Types

My migraine life so far

  • By Chrisbancroft

    Hi,
    I feel I need to share my severe migraine life, I’ve suffered from severe cluster migraine attacks for 30 years, in a way they have ruined my life, my gp and local hospital have tried me on every single tablet you could ever imagine, in the past I would get attacks maybe 2-3 times a day, the headaches can last 5 mins or 2 hours, I cannot lay down, I just sit up close my eyes and suffer the severe pain with my eyes watering, not nice..
    The headaches could be in clusters, i would suffer for weeks & weeks then not have one for 6 months approx, then they got more frequent and the lengthy gaps between them narrowed & narrowed, i new my life style was so so different to nearly every person on the planet (or so i felt), i could be out socialising with friends then get a headache and have to go sit alone anywhere, even in toilet cubicles, so long as i was alone, anything i planned in my life i was thinking omg what if i get a headache!!
    About 7 years ago a doctor in our local gp saw me for they first time, looked at my past medication and just said wow you’ve seriously had some prescriptions!! We had a chat took away yet another prescription to try, the next day this gp doctor rang me totally out of the blue and asked if I’ve ever tried 100% medical oxygen, my reply was “no I’ve never heard of it or tried it” but I am prepared to try anything, so a few days later 2 medical oxygen bottles arrived with breathing mask and a demo from the delivery guy on how to use this stuff, i can feel like a normal person and within 1 minute can be having a serve headache with pretty much no warning, so then the new thing in my life came into force (oxygen) these 2 bottles would live at the side of the bed because most of my headaches came at night, what a miracle i thought when i first tried the oxygen from the start of a severe headache, a few puffs of oxygen and heyho the headache goes, i was totally gobsmacked, so over the last 7 years I’ve pretty much let medical oxygen own my life & control it, i have 5 large cylinders & 6 small travel cylinders of medical oxygen, that go anywhere & everywhere with me, the headache attacks are much more frequent now-a-days, and i can be using oxygen guaranteed daily anywhere i am, abroad this is very costly (approx 500-1000 pounds) to buy oxygen which I’ve been told i can claim back but never had any luck with doing this!!
    Lastly to my girlfriend & life partner for the last 8 years, hoe the hell have you put up with me & my life??? She is amazing.
    Currently i use all my cylinders at least twice a week, the oxygen company provider & there drivers are great people and helpful with many questions i ask.
    Although medical oxygen owns my life, i would love to hear about anybody who has ever encountered these awful attacks and how they manage in life.

    Many thanks for reading this, hope to hear back.
    Chris Bancroft

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  • By Nancy Harris Bonk Moderator

    Hi Chris,

    Thank you for sharing your painful journey with us. Cluster headache, also called suicide headache, one of the worst pain known to man. I’m so sorry you deal with this so frequently. Thankfully, I don’t have this type of headache disorder. It is however possible to have more than one type of headache or migraine type.

    These articles may be helpful; https://migraine.com/headache-types/cluster-headaches/ and https://migraine.com/living-migraine/cluster-explained/.

    Keep us posted on how you are doing,
    Nancy

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  • By Siegfried

    Hello Chris,

    Based on your story I also think you suffering from cluster headache, not migraine. For CH, oxygen is the standard treatment that works for most people.

    Myself, I am life long migraine patient but 8 years ago, my migraine started to show more and more CH symptoms. Now I am in a kind of hybrid situation where I do fulfill 80 % of the criteria for both conditions. So I was diagnosed for both conditions but they do appear always as one and not as two separate diseases as in some persons.

    For me, oxygen has helped enormously as well. On the onset of an attack, it works always but it also happen many times that I could abort full-blown attacks just with 15 min oxygen. And like you, I am glued to my oxygen bottles. I took some time to go through the literature about oxygen and it seems that for migraine, hyperbaric oxygen has the best chance to work, normobaric not so much. For CH and migraine patients with CH symptoms like running nose and tearing eyes normobaric will work.

    Best Regards !

    siegfried

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