Fibromyalgia · Life

Cluster Headaches

I have been struggling for the last 3 days with a vicious cluster headache. If you’ve never had one of these gems, count yourself lucky. I’ve been getting them for many years. In the beginning I thought they were sinus headaches on steroids because they feel a bit like sinus pressure behind the eye and make my ears, nasal passages and even teeth hurt. But they do not respond to any antihistamine or even ibuprofen the way an allergy related sinus headache would. Then, for a long time, I just assumed they were migraine headaches. When I went to an Ear, Nose & Throat doctor about the loss of hearing in my left ear, I mentioned it to him and he told me they were probably cluster headaches.


Interesting to note that these and the menieres (intermittent hearing loss) are both on my left side where I had a case of the shingles about ten years ago. It is quite possible that the shingles damaged the nerves on the upper left quad of my head. It was a pretty mild case and only appeared between my eye and my hairline and up at the top of my forehead, where it left a scar.

I really should track them to see if there is any dietary or seasonal rhyme to them, but I am usually so consumed by the pain and then relieved by its disappearance, that I put it out of my thinking right away. I get about 4 to 6 attacks a year.

It feels like a kebab skewer is lodged into my left eye and piercing my brain. The pain usually starts in the evening and wakes me up in the middle of the night. When I wake in the morning, there are remnants of the pain, like a fog and then it goes away for most of the day, only to reappear in the evening when it gathers like a storm and peaks either right before bedtime or in the middle of the night. Sometimes they are present for 24 hours, sometimes 72, this one is especially tenacious.

Nothing really eases the pain except sleep and the only way to fall asleep is to put pressure on the eye, like pushing the palm of your hand into the eye socket. Miserable. During the day, when the pain is minimal, my left eye tears and droops, which is oh so lovely. And of course, the lack of sleep makes me worry about a fibro flare…I am taking a sick day today, lots of rest and fluids.

Do you get cluster headaches? Does anything help you? Have you found your triggers?




15 thoughts on “Cluster Headaches

  1. I am so sorry that you get them Rene. I get them too and it is a killer. The only thing that helps me is a dark room and sleep. I also use an ointment for pain,apply it on my forehead. More often than not, I just have to let it ride its course.

    Hope you feel better soon.

    Liked by 1 person

  2. Never knew what to call them, but I get these too. The sinus/ear/tooth things is awful — and I thought they were just my allergies & sinuses acting up. Now I know why allergy meds don’t seem to help the pain.

    Liked by 1 person

  3. Hugs im so sorry to hear you too get these. Cluster headaches really are evil. I find mine can be triggered by high pressure. They often seem to start almost like a sinus headache when the wether changes. I find all I can do is wait them out. I tend to curl up in a ball and crochet loads or if i can sleep. A hot water bottle placed at the back of my head helps loads!

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  4. Cluster headaches are horrible, I have them too, mine occurs in the morning, within a hour of getting up & the sequence carries on for days or weeks. Heat applied to the side of the head works well. I have a rice/wheat bag to microwave & an electric hot water bottle. I use migraleave for the pain (& sickness, yes the pain leaves me feeling sick) , unfortunately this brand of migraine tablets is not available in USA, or anything similar ( well we didn’t manage to find it)

    Liked by 1 person

      1. In some ways they are more horrid than migraines, they run their course & are over until next time & I have more ideas about triggers. The clusters go on for days/weeks each day starting the same. I feel exhausted by their persistence interestingly I found a link between gluten intolerance/ allergy & migraine/ cluster headaches, after I had gone gluten free & the headaches greatly reduced, in a scientific paper ( sadly it was at school so I cannot remember where) it said it was possible to be celiac with migraine/ headache symptoms, with a learning difficulty such as dyslexia, without showing the normal digestive symptoms. I remember reading the paper & saying that’s me! You could try gluten free? If your not already.
        Hoping you feel better soon x

        Liked by 1 person

      2. I agree, they are horrid. I have been avoiding gluten for a few years (for fibro) and have recently been slacking off quite a bit, a whole cookie and a doughnut…so I think you are on to something here. A cookie is not worth that pain…but thankfully it is gone 🙂 Thanks for the gluten tip!


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