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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. 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.

        1. Had cluster Headaches for 25yrs. Drs. Tried everything nothing fazed it. First ,5 years didn't ask for pain meds. Didn't want to seem like drug addict. Pain got worse. You feel a little twing on right side of your nose and that's the 5 minute working because in 5 minutes I will feel like someone just pounded a red Hot fireplace poker through the top of my head going behind my right wich is half closed and tearing up dripping down my face. Meanwhile hot poker has come through my mouth and out my jaw. For the next 2 hrs I am incapacitated can't talk or see just lay in fetal position and moan. Taking hot shower with just heat until water runs out. Helps a little distributing pain all over face instead of right eye.

          1. Oh my gracious. This sounds excruciating. You do an excellent job of describing cluster headache. You said you "had" this condition for 25 years. Does that mean it's in the past for you? Thank you for sharing the hot shower strategy - it helps others to learn what has worked for those who have lived with this condition. Warmly- Holly -migraine.com team.

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