Cluster headache

I've had daily cluster headache for the past five years now. I've had to leave uni, can't work and have lost most of my friends due to cancelling plans constantly because the pain is so bad. I see a neurologist at the Walton Centre and have tried every medication and injection available and am now trying unlicensed medication, next on the list is lithium. I just wondered if anyone knew of anything else I could be doing or trying? Like every headache sufferer I'm just desperate for the pain to stop and will try anything. Thank you

4 Replies

  • I am a fellow chronic cluster headache sufferer, 6.5 years now, and I truly empathise. For me the first line of defense is high flow oxygen which usually knocks the pain down in a couple of minutes and gone completely in about 10 - 20 minutes. For a really persistent attack I then use a sumatriptan injection but for me this is a last resort.

    Have you contacted OUCH!UK (Organisation for the Understanding of Cluster Headache), over the years they have been very supportive and helped me to get home oxygen when my GP was reluctant.

    We each react differently to the recommended prophylactics so I think anything is worth a go - you might be lucky and not have the side effects.

    Wishing you luck and a pain free future!

  • Thank you for the reply, nice to know I'm not alone!

    I've tried oxygen, but it doesn't do much good, and I need to many sumatripan injections in a day for them to be a viable option. So glad that they help you though :)

    If your ever told about any new treatments or alternative ideas please do let me know.

    Warmest wishes and fingers crossed we find something that works!

  • I have had the Daith piercing and can honestly say it has definitely helped me. I was getting almost daily migrains for 3 years. Tried preventative amititriptilyne, sumatriptan ( which helps but advised to take no more than 2 a week) , brain scan, acupuncture, given up all known triggers. I had this piercing 3 weeks ago and apart from a couple of minor ones (after a couple of vodkas) I have had nothing. I know it doesn't work for everyone but I seem to be one of the lucky ones. All you have to lose by trying it, is the cost of the piercing

  • Thank you so much for the reply, great to hear it has worked for you. I will definitely look into getting the piercing done. Your right definitely nothing to lose and potentially a life to gain!!

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