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Charles Savage
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Question.
Mar 5th, 2013 at 7:06am
 
I haven't had one for about a year and a half, and I'm wondering if this is possible to be a true cluster headache sufferer with that being said? I've looked at all of the symptoms and they all check out. The excruciating, unbearable pain that people just don't understand, the crying, the drooped eyelid, the inability to sleep or sit still or do even the most trivial of tasks. I remember the first time I had one, even. I was 14 years old in my 8th grade class when all of a sudden the worst pain I had ever felt hit me. I was tearing up, and it felt as if someone was stabbing outward through my right eye. I was crying in front of the entire class and nobody seemed to understand it except my teacher, who told me frankly that "It's a cluster headache, I can tell by the way you're reacting to it." I don't remember getting another one for a few years, but I remember the next one. I had to go home from work because one came on to me, again the right side. I had them more often over the span of the next two years, recurring once every few months. I haven't had one in probably a year and a half, however. I just need to know if this remission time is possible and if there's any way of predicting when it will come again, because it's a day I dread, and I'm grateful everyday that I don't have one. I remember trying to explain to my ex-girlfriend after she had a child that it was nothing compared to what I go through every once in awhile. I would love to hear the opinions because I know on the inside that I suffer the same thing as each and everyone of you, albeit most likely not as often. Do my symptoms go with cluster headaches? I've had bad headaches before but NOTHING has ever even remotely come close to the pain I felt during those, and I wonder if other people go through the same remission period as I do. So little is out there on the subject that I felt the best way to find out or to come for advice would be here. Thank you all, I'd love to hear back.
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Melissa
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Re: Question.
Reply #1 - Mar 5th, 2013 at 7:43am
 
Hello Charles,

Unfortunately yes, that couldbe what they are even though you're in remission.  Many of us experience long periods of pain free time (mine normally come every 18 months) and are called episodic cluster headache sufferers.  The other kind are chronic cluster headaches which come pretty much everyday without a consecutive 30 day pain free break in a years time.

I personally never believe they'll never be back, I always expect them to come back, which is why I stay prepared with a plan if they do.

Read up as much as possible as you can on this site to prepare yourself if they ever come back.  Always better to be safe than sorry.  And ask questions if you need to.

Take care!
Melissa
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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Charles Savage
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Re: Question.
Reply #2 - Mar 5th, 2013 at 7:48am
 
I was afraid that was the correct diagnosis as well. Thank you very much for actually taking the time to reply! It's been so long I had almost blocked them out of my conscience until I came across it on the "weird part of Wikipedia." Well, I did some research earlier and apparently, while rare, some remissions have been known to last decades before they appear again, and God only knows that's what I'm hoping for.
Thanks again!
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AussieBrian
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Re: Question.
Reply #3 - Mar 5th, 2013 at 7:56am
 
Charles, at the top left of your screen is a button marked 'cluster quiz'.

We don't do diagnoses here, but it's good place to start.

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Bob P
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Re: Question.
Reply #4 - Mar 5th, 2013 at 7:56am
 
If you are having one attack/headache and then weeks, months, years without one, it doesn't sound like clusters.  As the name implys, they come in clusters.
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Melissa
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Re: Question.
Reply #5 - Mar 5th, 2013 at 8:05am
 
Bob P wrote on Mar 5th, 2013 at 7:56am:
If you are having one attack/headache and then weeks, months, years without one, it doesn't sound like clusters.  As the name implys, they come in clusters.

Bob is right.  I re-read your post again, Charles, and you say you only had one attack every few months?  Cluster Headaches happen day after day for an extended period of time.  Is this what you experienced, or just one random attack?

Thanks,
Melissa
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« Last Edit: Mar 5th, 2013 at 8:07am by Melissa »  

Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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Re: Question.
Reply #6 - Mar 5th, 2013 at 9:29am
 
Welcome to the board Charles, this is a great forum to discuss headache issues, I'd strongly caution you against using it as a firm diagnostic tool. Headaches are a complex disorder. Doctors get about 4 hours TOTAL education in doctor school, your garden variety neuros don't get much more. A headache specialist neurologist is really your best bet at an accurate diagnosis and an effective treatment regimen.

It's not unusual for CH to start out as random hits in our teens, not really settling into a predicatable pattern until our early 20's. I'd strongly suggest starting a headache journal, as detailed as possible. And get a referral to a qualified headache specialist neurologist. Whether i't s CH, or any of the other hundreds of headache types, the sooner you get an accurate diagnosis the better.

Joe
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japanzaman
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Re: Question.
Reply #7 - Mar 7th, 2013 at 8:58am
 
Sounds pretty much like me. They came around every now and then in my teens, then rocked me like a hurricane once I got into college. I would at the very least look into some treatment options and be ready if a full blown cycle starts up. I've had breaks of nearly 4 years between cycles, so don't think that you're out of the woods. Being prepared is by far the best way to go. Cool
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