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Living with Cluster Headaches

For me, I have been dealing with migraines since I was 12. Now, 5 years later, they are still a big problem for me. At first, all my episodes where the typical migraine. Blurred vision, sensitivity to light and noise, pain in temples, throwing up.... you name it.
Recently I have also been diagnosed with cluster headaches. Dealing with both migraines and cluster headaches is just awful. They are bad enough when you have one, but having both, is the worse.
What have you guys found helpful in dealing with your cluster headaches? Is there any meds that you have found useful?
I know that no doctoral advice can be given, I just want to hear your stories.
I am sick with constantly living with the sharp pain that fills my eyes. It is excruciating, and living life becomes 100x more difficult.
I know cluster headaches are so different than migraines. To me, they are worse. I am not sure how they effect other people. The pain is debilitating, and I feel like there might just be no cure for me.

  1. Hi k_nelson,

    Thank you for reaching out to our community - we're glad you're here!

    I recently called cluster headache the king of headache disorders. I've been fortunate not to experience a cluster headache, but it is common to have more than one type of headache disorder.

    I know two groups that "specialize" in cluster headache you may be interested in looking into. I'm sure you'd hear all kinds of stories; https://clusterbusters.org/about-cluster-headache/ and https://chsg.org/.

    I hope that helps,
    Nancy

    1. Living with cluster headache means being on a continual search for respite. If you are all too familiar with the unbelievable pain of cluster headaches, then you know...
      It's the worst kind of headache
      Certain times of day are more painful than others
      You need a doctor who 100% gets it
      You don't know what desperation is until you are looking for a treatment
      There's nothing like the sweet relief of oxygen
      Home can feel like a prison
      You will never stop hoping for a cure

      1. I am a migraine or cluster headache sufferer. I can sometimes go for 2-weeks without having a headache, and at another time, I will have to take daily doses of Imitrex or pain meds for an entire week to chase off these headaches or minimize the terrible pain. They don't typically come with a warning like I have read so many people say (e.g. an aura), though it has happened at times, for instance, a static foggy spot in my vision. The pain is always the in the same place, which is directly behind and a little above my right ear.

        Are these cluster headaches, or are they true migraines?

        1. Hi mpsprowl,

          It's possible to have more than one type of migraine and/or headache disorder, I know I do. If I've mentioned this before, forgive me, but only a qualified doctor can tell you what's going on.

          Here is some good information on both migraine disease and cluster headaches; https://migraine.com/living-migraine/is-it-cluster-headache-or-something-else/.

          Nancy

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