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mattsmom14
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new to site, not new to clusters
« on: Aug 17th, 2007, 2:43pm » |
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hi everyone.
i am new to this website, but unfortunately, not new to clusters. i have been suffering with the same headache for the past 1-1/2+ years. i wake up with it and go to bed with it. it keeps me company all day long. my pain is located behind my left eye, causing my eye to constantly tear and burn. this wreaks havoc on eye makeup, i can tell you!
anyway, a little history...i am 51 y/o female and started having clusters about 6 years now. my first and second one lasted about 2 years each, with a break for about week (i think that might even be stretching it some). and, as i said, my current one has lasted a little more than 1-1/2 years. i have tried sooo many different meds, and combination of meds, that i've lost count. i have also tried oxygen (which i was really excited about) but despite best efforts, my headache stayed. i guess it likes where it is...who knows. i have seen 4 different neurologists; all but one said these were clusters. i have had numerous mri's showing that i do have a brain (yay!) and all parts looks completely normal (another yay! and thank God!) the last neurologist i saw made an offhand suggestion of performing a trigeminal block. this actually sounded good to me but when i went back for a follow-up, he had changed his mind (not sure why, despite dozens of questions). he then suggested my visiting one of his buddies who is doing some rather radical and drastic research on implantations at the occipital or in my forehead. both would protrude with a battery-pack from my skin, and even though i'm no christie brinkley, my appearance is important to me. besides which, i don't like the thought of frightening little children! i didn't take him up on this offer.
i have this pain constantly and consistently behind my left eye and it sometimes makes its way to my left temple (never leaving the eye, though). one of my neurologists asked me if i had had any thoughts of suicide, which i had not, although i have been know to utter, just put a bullet in my head. i certainly don't mean it in a literal way. anyway, he responded with a chuckle that in his line of work, these headaches are known as "suicide headaches", and i can understand why they are. so far, only one med has helped take the edge off the headaches, (as nothing has actually prevented or stopped them) and that is a pain med called ultram. i find i am taking them every 5-6 hours. the drug made me a bit loopy the first couple of months of taking it, but now i'm an old pro at it and can actually put together lucid and coherent thoughts, stringing them into sentences that make sense to people reading them. (i think...please let me know if this post is gobbledygook).
i am generally a happy, contented, easy going lady who is delighted to wake up in the mornings, and am grateful for each and every day i am given to be on this planet. however, this headache is beginning to wear me out. i am married to a wonderful man who is supportive and caring and when i excuse myself to go pop a pill, lie down and put an ice pack over my left eye, he often comes in to check on me. I think it’s a good thing that my three sons are grown and out of the house, because they are also very concerned.
i am at a loss as to what to do next and would certainly appreciate any and all thoughts you might have and if you have any insights/tip/hints to coping. I look forward to reading what you might have to share with me.
i thank you all most humbly in advance,
-nancy
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-nancy
aka mattsmom14
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seasonalboomer
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Re: new to site, not new to clusters
« Reply #1 on: Aug 17th, 2007, 2:49pm » |
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on Aug 17th, 2007, 2:43pm, mattsmom14 wrote:hi everyone.
i am new to this website, but unfortunately, not new to clusters. i have been suffering with the same headache for the past 1-1/2+ years. i wake up with it and go to bed with it. it keeps me company all day long. my pain is located behind my left eye, causing my eye to constantly tear and burn. this wreaks havoc on eye makeup, i can tell you!
anyway, a little history...i am 51 y/o female and started having clusters about 6 years now. my first and second one lasted about 2 years each, with a break for about week (i think that might even be stretching it some). and, as i said, my current one has lasted a little more than 1-1/2 years. i have tried sooo many different meds, and combination of meds, that i've lost count. i have also tried oxygen (which i was really excited about) but despite best efforts, my headache stayed. i guess it likes where it is...who knows. i have seen 4 different neurologists; all but one said these were clusters. i have had numerous mri's showing that i do have a brain (yay!) and all parts looks completely normal (another yay! and thank God!) the last neurologist i saw made an offhand suggestion of performing a trigeminal block. this actually sounded good to me but when i went back for a follow-up, he had changed his mind (not sure why, despite dozens of questions). he then suggested my visiting one of his buddies who is doing some rather radical and drastic research on implantations at the occipital or in my forehead. both would protrude with a battery-pack from my skin, and even though i'm no christie brinkley, my appearance is important to me. besides which, i don't like the thought of frightening little children! i didn't take him up on this offer.
i have this pain constantly and consistently behind my left eye and it sometimes makes its way to my left temple (never leaving the eye, though). one of my neurologists asked me if i had had any thoughts of suicide, which i had not, although i have been know to utter, just put a bullet in my head. i certainly don't mean it in a literal way. anyway, he responded with a chuckle that in his line of work, these headaches are known as "suicide headaches", and i can understand why they are. so far, only one med has helped take the edge off the headaches, (as nothing has actually prevented or stopped them) and that is a pain med called ultram. i find i am taking them every 5-6 hours. the drug made me a bit loopy the first couple of months of taking it, but now i'm an old pro at it and can actually put together lucid and coherent thoughts, stringing them into sentences that make sense to people reading them. (i think...please let me know if this post is gobbledygook).
i am generally a happy, contented, easy going lady who is delighted to wake up in the mornings, and am grateful for each and every day i am given to be on this planet. however, this headache is beginning to wear me out. i am married to a wonderful man who is supportive and caring and when i excuse myself to go pop a pill, lie down and put an ice pack over my left eye, he often comes in to check on me. I think it’s a good thing that my three sons are grown and out of the house, because they are also very concerned.
i am at a loss as to what to do next and would certainly appreciate any and all thoughts you might have and if you have any insights/tip/hints to coping. I look forward to reading what you might have to share with me.
i thank you all most humbly in advance,
-nancy |
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Nancy, Let me first say that my intent is not to be jerk but what you're describing doesn't seem to be cluster headache -- due to the length of your headache. Someone else can correct me if I'm wrong but I believe that is one of the critical symptoms is that the headaches come and go, but the cycle in which the headaches occur can vary widely.
Nonetheless, i'm very sorry that you are dealing with something like this. Headache pain is hard to deal with. Has your neuro actually determined them to be cluster headaches?
Scott
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phil_h
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one day at a time , one headache at a time.....
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Re: new to site, not new to clusters
« Reply #2 on: Aug 17th, 2007, 3:21pm » |
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Nancy, I'm no doctor.....but this sounds more like hemicrania continua ......that dx responds well to indomethacin......check it out with your doctor .... I pray for pf days and nights for you ..... I knew someone that was dx'd with clusters for 2 years before properly dx'd with hemicrania continua......medication worked immediately for him.....may you'll luck out and find relief...................... phil h
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Charlotte
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Re: new to site, not new to clusters
« Reply #3 on: Aug 17th, 2007, 3:47pm » |
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Hi, Nancy. Welcome aboard. Good luck. Stick around and make some friends. Moral support is good medicine, often better than what the docs give us.
Charlotte
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southwalessunshine
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Re: new to site, not new to clusters
« Reply #4 on: Aug 17th, 2007, 6:36pm » |
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Hmmmm I have to agree that maybe this isn't CH! I thought initially that over a period of days or weeks etc it was the same headache and the cluster part meant a cluster of days. however i now know that the gaps between the pain were not as I assumed a little break in one big headache, but seperate headaches, thus the cluster part. If this is what you're experiencing then I think you certainly do have Ch. however i am not medically trained in anyway and may be wrong. I would think that if you have one long headache that never goes away you don't have Ch and need to find what you really have. i am chronic CH and even though it's the worst pain in the world I have tried many drugs for it and have finally found relief in sort from Sumatriptan. If you read the many threads here you will see that many of us have pain free day, weeks yrs or hrs, but we do experiance pain free times. I'm sure people better informed than me will be along shortly to help you with this and give you suggestions and I hope you find what you are looking for x
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mattsmom14
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Re: new to site, not new to clusters
« Reply #5 on: Sep 6th, 2007, 5:27pm » |
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thanks so much everyone for your input. i have changed insurance carriers and am searching for a good neurologist in the southeastern virginia area...any thoughts? i think i have to agree that these aren't clusters...and are perhaps of the hemicrania continua ilk. i have, however, already tried the med that is touted as the fix for this type of pain...not very encouraging, but i really need to find a competent, extraordinary doc who know his or her stuff. i look forward to hearing from any of you. many thanks,
-nancy
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-nancy
aka mattsmom14
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Rosybabe
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Re: new to site, not new to clusters
« Reply #6 on: Sep 6th, 2007, 8:48pm » |
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Hi Nancy!
Welcome aboard!!
you can try doing the cluster quiz to the left to see if CH match your simptoms.
you can find a list of good neurologists here:
http://www.ouch-us.org/chgeneral/doctors.htm
Wishing you pain free time!!!
Rosy.
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