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  • Dr. says Cluster Headaches? I don't think so...

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    Old 07-27-2010, 09:44 AM   #1
    cncnorman
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    Unhappy Dr. says Cluster Headaches? I don't think so...

    My Neurologist I have been seeing for three years now has been treating me for Acute Chronic Cluster Headaches for the past three years. Prior to starting treatment I was having fifteen to thirty of the headaches a day and was bed ridden with pain. These headaches almost always occur when I am standing up from a sitting position (taking notes in college, sitting at the computer, driving a car or sitting in bed watching tv.) I am beginning to think this is a misdiagnosis and need your help, please?

    The headaches always begin with a spasm/tingling in the occipital area of my skull (lower third, back). Next comes a crazy intense blinding pain only on one side of my face, above the eye and radiating back toward the center of my brain. Sometimes there is tearing and flushing. Following this is the unbelievable uncontrollable urge to bend over and touch the floor (always with my knees locked so I get go down further) and it isn't until I have been bent over like this for thirty to fortyfive seconds that the headache will lessen. There is a residual headache that will last from thirty minutes to three hours and absolute exhaustion.

    I have been taking Celebrex 200mg four times a day, Skelaxin four times a day and he wants me to take a calcium channel blocker but I have not started this one yet. He also put me on Pristiq as I was having intense side effects from the Effexor. I am desperate. I have just graduated from college (38 year old female with two children) and I really need to get a job but these headaches are continuing and as a teacher if I have to suddenly bend over in the hall or get wiped out by a headache I do not think my boss would be happy.

    **edited for the addition of more details** I only drink maybe once or twice a year and do not experience headaches with drinking, I only smoke one cigarette at night and this began two years after the headaches began. Since the headaches have begun I no longer eat or crave chocolate and prefer salt and spicy foods after previously hating anything with spice in it (dunno if that is part of these headaches or not.) I have had three mri's and several blood panels that have shown no abnormalities.

    Last edited by cncnorman; 07-27-2010 at 11:52 PM. Reason: adding more details

     
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    Old 07-27-2010, 04:51 PM   #2
    jennybyc
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    Re: Dr. says Cluster Headaches? I don't think so...

    Is your neuro a headache specialist? Some are and but most aren't. That would be a starting place.

    I went through a period of time when I too was diagnosed with cluster headaches and they eventually found out I had a pituitary tumor. Once that was taken care of, the headaches left and have never returned. The fact that you have to bend over is not typical of clusters. and coming on with standing and then going away with bending back over, it almost sounds like a big problem with your blood flow in the brain. Almost sounds like the blood flow is stopped and then suddenly restored when you bend over.

    I'd start getting some second, third and fourth opinions. Find a headache clinic that has you stay overnight so they can see the headaches at work.

    You are right, something here just doesn't sound right and just like me, they eventually found the right answer.

    good luck..............Jenny

     
    Old 07-27-2010, 10:10 PM   #3
    Flutterbye77
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    Re: Dr. says Cluster Headaches? I don't think so...

    I was dx with cluster headaches years ago. They stopped after I quit drinking beer. Mine were not triggered by bending.. they were so random but usually assc with alcohol. They feel like an ice pick behind one eye only. Best treatment is an ice pack on the back of the neck and head vs over the one side of your head.

     
    Old 07-27-2010, 11:48 PM   #4
    cncnorman
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    Re: Dr. says Cluster Headaches? I don't think so...

    Jenny, thanks for you reply I am terribly grateful for your time. My neuro is not a headache specialist - I don't even know how to find one in the Fort Worth area?? I have had several MRI's showing nothing growing abnormally. Perhaps I will post my question into a brain forum and see if anyone has heard of it before. The blood flow idea you mentioned is one that I have thought of repeatedly. It is almost like there is a plunger that has gotten stuck and when I bend over it releases so things go back to normal. Prior to having so many meds I was having more than 20 a day but now I am down to five or six. Maybe I should just be grateful for that improvement.

    Quote:
    Originally Posted by jennybyc View Post
    Is your neuro a headache specialist? Some are and but most aren't. That would be a starting place.

    I went through a period of time when I too was diagnosed with cluster headaches and they eventually found out I had a pituitary tumor. Once that was taken care of, the headaches left and have never returned. The fact that you have to bend over is not typical of clusters. and coming on with standing and then going away with bending back over, it almost sounds like a big problem with your blood flow in the brain. Almost sounds like the blood flow is stopped and then suddenly restored when you bend over.

    I'd start getting some second, third and fourth opinions. Find a headache clinic that has you stay overnight so they can see the headaches at work.

    You are right, something here just doesn't sound right and just like me, they eventually found the right answer.

    good luck..............Jenny

     
    Old 07-27-2010, 11:50 PM   #5
    cncnorman
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    Re: Dr. says Cluster Headaches? I don't think so...

    Flutterby I appreciate your help. The bending does not trigger the headaches it actually seems to be the cure that I am compelled into doing or suffering the worst headaches every. Also, I don't drink except maybe once or twice a year and I have never had a headache associated with that. I will try the ice packs tho, gosh know I have tried everything else.

    Quote:
    Originally Posted by Flutterbye77 View Post
    I was dx with cluster headaches years ago. They stopped after I quit drinking beer. Mine were not triggered by bending.. they were so random but usually assc with alcohol. They feel like an ice pick behind one eye only. Best treatment is an ice pack on the back of the neck and head vs over the one side of your head.

     
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