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Have you been diagnosed with Cluster Headaches?

Many say there are no words to express the pain of Cluster Headaches...it is a pain like no other! Have you been diagnosed with Cluster Headaches? Please share your experience with us.

Do you experience chronic or episodic Cluster Headaches?

When were you first diagnosed?

How do you cope?

Have you found any therapies or treatments that help?

How would you describe the pain?



 

  1. No, just tension headaches and migraine.

    1. Oh, the first here with clusters.
      Daily devastating headaches, up to 8.
      Pressure starts at the right temple, spreading to forehead, then the eye.
      Eye tearing and half closed. (No blurred vision or flashes)
      Nose right side pressure. (No mucus generally)
      No tingling any ware.
      Leaning or bending over, it does not worsen.
      A cool feeling, starting at the neck working downward to shoulders and arms.
      A need cough.
      A need to walk around/pace.
      Winding down or restarting can be a blunt pressure, not pulsing.
      Random stabbing pains the size of the ear canal or the size of a softball.
      BACKGROUND:
      Allergies: none.
      No changes in diet, actives or environment.
      2 cups of coffee in the morning.
      An eye migraine from time to time.
      Ringing in the ear once in a while.
      TRIED:
      Aspirin helps within 15 to 20 minutes. (not good in that amount fot the stomach or gut)
      Cold pack (no help)
      Deep breathing (possibly helpful)
      Rubbing neck (no help)
      Hot pad, maybe but, doubtful. (lying down may impede recovery)
      O2 seems to help if used just as headache starts. Afterwards it has no effect.
      Coca-Cola, 57mg Caffeine. No effect
      Magnesium 250mg. and, up to 600mg. a day. No effect.
      2 Butalital 50mg. (Acetaminophen 325mg and Caffeine 40mg.) No effect at all.
      Afrin nose spray. No effect.
      Zyrtec 10mg. (an antihistamine) for 4 days. No effect. But, it has worked in the past.
      Loratadine 10mg. No effect.
      Benadryl. No effect.
      Turmeric (an anti inflammatory?) If so, only for 35 minutes, maybe but, unlikely.
      Ginkgo Biloba 60mg: 1 typically. Tried 4 a day. It is a dilator, not a good idea.
      2 Excedrins. Sometimes helps. (it has aspirin)
      2 Hydrocodone 5mg and Acetaminophen 325mg. (Tylenol does nothing for this headache.)
      Fish oil, up to 3. No effect.
      ½ Sumatriptan 100mg. (about 30 minutes to act. Seems okay)
      1 Rizartiptan 10mg. (30 minutes, for 50% relief)
      Celecoxib 200mg a day. (Disappointing)
      Cayenne pepper spray. (works but, can build up a tolerance to it quickly)
      Starting Topiramate (unknown effect at this time)
      TESTS:
      MRI for headaches, nothing unusual. 6/2014
      Neck arteries: Ultra sound, 90% clear. 2018?
      EKG, okay. Dr. Ahmed's office. 6/19/2019
      Temporal Arthritis: sedimentation rate 3 range1-15mm/HR. Okay. 6/1019
      Summit ER 6:00 PM: Head CT w/o contrast. Looks okay. 6/22/2019.
      Sleeping O2 test. It can drop to 88 while sleeping. 7/2019. Started PM O2 (helps for the little sleeping alarm headaches).

      That is all the poop on my Clusters so far.
      Mike

      1. I've not been diagnosed with cluster headaches, but Michael 70's description matches most of my headaches. "Stabbing eye pain" was one of the first symptoms I added to my Migraine app as it was the only term I could think of for what I felt.
        In recovery my temple feels "bruised" likes it's been hit by a hard object (or punched) and that's the feeling of recovery!
        I must discuss this with my GP, as it may change how I treat my headaches in future.

        1. Update:
          Topiramate. Started an AM 25mg for 14 days. No real changes in the Cluster headaches. Then started 2 a day and the headaches reduced democratically. I can tell they are still attacking me but, nothing sufficient. After awhile I reduced the evening dose to 12-1/2mg with no changes. I am very relieved and haven't had any side effects from the drug yet.

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