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suffering cluster headaches 13 yrs

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Guest
Guest

hi i am 36 yrs old and been a cluster headache suferer for 13 yrs. I was only diagnosed with this condition however 3 yrs ago. The pain is so unbearable i have like others resorted in banging my head on walls and doors , feels like you are having a heammorrage and is very frightening .

I for years was trying to treat these headaches with ibuprofen and cocodemol.Without any effect and i feel like when you say to anyone bout these headaches they are not on the same wave length and find little sympathy , i have however a very supportive husband and friends. This has been invaluble because at times i have felt so low and exhausted from the pain i have considered suicide , and only for the sake of my children has probably kept me going. I find it very dibilitating and cannot cope with anything when in pain so having 3 kids becomes very hard to deal with.

I have been misdiagnosed with sinnusitis and since moving doctors and bein admitted to hospital has my diagnosis been clear.

I am now being referred to a neurologist so hope they have all the answers !! I am taking verapermil 120mg once a day now this is used to prevent the clusters and has just been effective in my last bout of 4 weeks .

My clusters typically happen at night and i get 2 a day at least and they last from 3 - 6 weeks at a time .I am using sumitriptan nasel sprays but like to use the injections as reading on other experiences seem to be the most effective way forward long term and oxygen so when i see this neurologist i am going to ask for this.

Hopefully this recent attack is finally over and i wont get them for another 3 yrs hears hoping

0 likes, 3 replies

3 Replies

  • mojo63
    mojo63

    Posted

    hi just read your post on cluster headaches.i am 64 this year and have suffered with them since i was 50.At first Ithought it was facial neauralgia so was just taking paracetamol or sudifed.Isuffered for 8 years before i had a brain scan and the neurologist diagnosed CH.i was prescribed PIZOTIFEN which is a preventative but after 4 years find they r not working as good as they were at first iI am waiting to go back to see neurologist to see if i can have oxygen or a different tablet.these ch are terrifiying and so debilitating i feel drained and ill after them.last week i woke up every hour n half with them 2 nights on the run.i have stopped eating loads of things and dont touch alcohol cos
  • mojo63
    mojo63

    Posted

    alcoho is the worst for triggerin ch and certain foods.im gonna try fennel seeds and ceyenne pepper. Ijust wish they would go.MYcycle lasts for 20 weeks then i have a break of 12 months the the Demon returns it just ruins my life HGope all u ch sufferes get relief soon x
  • pauljames
    pauljames

    Posted

    You could try seeing an osteopath and research your breathing these can make a difference.
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