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Cluster Headaches

I was finally diagnosed in October 2009 with a specific type of headache called Cluster Headaches. I had been suffering since 1988 and they had been getting more frequent and more intense. I had been showing them to doctors over the years and basically had been blown off by every doctor.


In fact, one GP told me “it’s nothing.” Yeah….just YOU try having one and we’ll see if it’s ‘nothing.’ I wanted to say to him. My eye doctor thought my red eye was a sign of scleritis, or, arthritis of the eye, and told me to take the glucosamine supplements. They helped my knees, for awhile, but the intense pain kept getting worse and more frequent. Finally I got a GP who was at a teaching hospital and he could see my red eye. By this time, I was suffering agony that lasted a month or more at a time, with at most a week or two break between outbreaks. His diagnosis literally changed my life. I mean, just a few months before, I had been to the ER at this hospital and they, too, had blown me off.

That’s TWO ERs and BOTH blew me off…the second was another hospital AFTER my diagnosis and I TOLD them what it was. The physician assistant at that second ER, after I showed her my bloated, bloodied eyeball and told her not to touch it, proceeded to perform an eye exam and touched it all over and then diagnosed me with pink eye.

I guess what I’m trying to say is that it can be a long, frustrating, painful haul until a proper diagnosis is reached. But don’t give up. I thank God for the doctor who diagnosed my cluster headaches and I ask God to bless him. I pretty much have only a few days pain free, but at least I have that. I have a neurologist who helps me with pain management, which is something I could certainly have used 20 years ago. But I am grateful I have her now and didn’t have to wait another 20 years.

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Comments

  • Leese
    8 years ago

    I am female, and I have never been “officially” diagnosed with Cluster headaches, but I do have the symptoms. My intensely painful headaches are always on the left side, behind/around my eye, the eyelid on that side droops significantly, it pours water, and my nose is stuffy/running but sinus meds do nothing. Neither does Imitrex. The headaches do ease up sometimes, but they come back and can come and go for days. It’s horrible. Right now I’m on day 3 of one. I want it to go away, but I don’t know what to do, what to take, or anything.

  • Ellen Schnakenberg
    8 years ago

    Cluster Girl,

    I’m so glad you’ve gotten this diagnosis. It’s especially hard to get this particular diagnosis as you’ve learned thru experience. Being a woman in a mostly male affliction doesn’t help any either. I’ve had a diagnosis of chronic cluster headache a couple of times. It’s actually been a couple years since I last had that type of headache, and I’m so very thankful. I’m still not sure that’s exactly what was going on although the symptoms did match pretty well. Oxygen did help those headaches, which are intense beyond imagination. Has anyone prescribed oxygen for your cluster headaches? If so, what rate are you using it?

  • Cluster Girl author
    8 years ago

    Both my new GP and neurologist have mentioned oxygen, but only to say that it is not practical to have oxygen at home. There is only one hospital in this town where I moved last July. I finally got approved for Medicaid this past September, so not sure if it would cover it. My neurologist prescribed 2 kinds of pills to take at the onset of a cluster: imitrex and something called indomethacin. Neither do anything. The last time I took the imitrex I got a horrible burning rash all over my arms and back within an hour or so, which burned when I got in the shower and the water hit it. Basically the Neuro put me on generic topamax (4 a day) and the 500/5 hydrocodone to manage the pain. I only have a week or two max (sometimes even less than a week, and the red eye never goes away) between cluster attacks. My new psychiatrist saw my red eye on my first visit and accused me of doing illegal drugs and asked “if I do a drug test, will I find anything?” I told him, “please go ahead. You’ll only find prescribed medicine.” I tried explaining what my red eye was, but he didn’t seem to believe me…and he is an MD! For the past 3 days, the pain is well over a 10…around a 19 on a scale of 10 and today I’ve been on the sofa. This is why (along with the bipolar/schizoaffective) I’ve got a disability pending, which I hope I get. I don’t have much of a life. No one with these headaches does.

  • Ellen Schnakenberg
    8 years ago

    Hon, Oxygen is the preferred treatment for clusterheads. It’s called High rate oxygen. 12-15 liters per minute in a non-rebreather is what the prescription usually is. Sounds like you need a new doctor. Having a tank at home is no biggie. I have 3 right now, although I haven’t used it but once in the last year. I have a spare room for the 2 I’m not using, and the one I’m using is next to wherever I want to sleep. Oxygen should be prescribed, but even my doctor told me that some will buy a tank and regulator (used for welding) and get it refilled when necessary to bypass the need for their doctor, prescriptions and paying the higher fee for a medical company to fill it for you. I’m not advocating you do that, but you can use the information to generate a conversation with your doctor.

    Indomethacin is what I’m using right now. Without it I don’t think I’d be here. It doesn’t do a lot, but it keeps the edge off. It’s often used for Hemicrania continua. Usually you either have a headache that’s sensitive to it or not. Sounds like you don’t… if they gave you the right dosage anyway. I take 75 mgs 4 times daily. That’s the max allowed and has cause me trouble in the past.

    I’m sorry your MD is clueless. This is why seeing a headache specialist is so important. Sometimes you have to go thru a few docs to get to the real good ones. It’s worth the trouble though…

    Just a note, please do not overstate the pain. If the scale is 1- 10, then don’t go over 10 or you won’t be taken seriously. Tell them it is a 10, but until now you had no idea there was such thing as pain this severe. Additionally, when a doctor has several patients that claim their pain is worse than 10 (the worst pain imagineable/you’ve ever had) he no longer takes his patients using that scale seriously. Those that say 9 or 10 will be assumed to actually be at a 4 or 5 because he is used to everybody overstating the pain. If the scale is 1-10, then use those numbers. Then you tell him how that relates to your life. If you think the pain is so severe you will be suicidal if it doesn’t stop, then tell him that. That kind of statement puts it into perspective for him.

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