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   Can I join your Club?
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PJ
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Can I join your Club?
« on: Sep 14th, 2003, 10:22am »
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Hi everyone,
 
This is my first time on, and I’m probably going to ask things that’s been asked a million times before, - but I’ve just very recently learned about cluster headaches, and I think I may be suffering from them.
 
So I thought it might be a good idea to ask the experts.
 
I’m 33 years old now, but as a child I suffered from migraines till the age of about 12 when they seemed to stop.
 
But about 5-6 years ago I thought they had returned, but this time there were a few differences. I’ll give a list of things that tend to happen.
 
About 90% of these headaches I get are when I’m asleep. I will be perfectly OK when I go to bed, but will wake up with a headache.
 
The pain is always in my left eye, the very top left side of my nose, the left hand back of my head down to the left hand back of my neck. I’ve never, ever had pain anywhere on the right hand side.
 
It’s very common for me to get these every day for a few days, then I can go months without one.
 
Going out for a drink or two is absolutely guaranteed to give me one of these headaches. I can’t remember the last time I went out for a few drinks and didn’t wake the next day with a headache. I’m not one for drinking at home, but I did recently have one can of beer one night, - and sure enough the headache was there next morning.
 
People say it’s hangovers, but they are identical to the headaches I’m having when I haven’t been drinking. There’s no nausea or anything, and as I say, - even just one drink can bring about the pain.
 
From reading the way other people suffer, I honestly think I get off quite lightly, because I can usually get rid of the pain with your average strong headache tablet and a bag full of ice cubes to freeze the areas where the pain is. But there is the odd one or two that are very painful, that take a few hours to completely shift. Unlike migraines, lying down seems to make the pain even worse.
 
It might sound strange, but I would be quite pleased to have it confirmed that I do indeed suffer from cluster headaches. It’s bugged me for ages how I can go to bed and wake up with a headache. I’ve had the heating on, the heating off, - bedroom window shut, window open, - one pillow, two pillows, - you name it and I’ve changed it to see if it made a difference. It would be nice to actually know what the problem was, - even if there’s not a lot I can do about it.
 
Sorry to go on a bit, and like I say – you’re probably answering the same questions every other day, but I would like the opinions of people who have more knowledge than myself on the subject.
 
Many thanks in advance.
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Re: Can I join your Club?
« Reply #1 on: Sep 14th, 2003, 10:29am »
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There is a cluster quiz to the left (one of the push buttons).  Try that.  I would suggest you get yourself to a neuro though, because having an MRI is really important to rule out anything else that might cause the headaches.  There can be some very serious diseases that can cause one sided headaches so don't play around !!!  
 
And as for your first question .... can you join ??  Admissions open to the public 27 x 7 !!!!!!!!!!!  Someone here always has a headache and is up and ready to take registrations !!!!!  LOL  
 
For real though, get checked out good.  Make sure it isn't anything else !!!!!!!!  Welcome to the board !!!!
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Re: Can I join your Club?
« Reply #2 on: Sep 14th, 2003, 10:38am »
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Welcome PJ! Sorry you have to look for us but glad that you found us!
 
Best advice I can give you is to take the cluster quiz on the left .. that will give you more of an idea if you truely might have CH. If after taking the quiz, you still feel like you have CH .. read everything you can about it and go see an informative nero to have it confirmed and get on some good preventives and abortives. Go to them with plenty of knowledge about CH and the meds that have been known to work. We are not doctors here, so we cannot "tell" you whether those are definately CH's or not but others here can direct you more in the direction you should go if indeed they are. I am not a sufferer but a supporter so I can't tell you all the different meds that have worked for others here, I'll let them do that.
I personally hope that they are not CH's but if they are, you have come to the best place for information, direction and advice.  Smiley
 
Wishing you PFDaN's,
~April~
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Re: Can I join your Club?
« Reply #3 on: Sep 14th, 2003, 10:45am »
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Greetings PJ!
 
The symptoms you described sound like CH to me, but definately get a diagnosis!  The only difference I have is when alcohol triggers for me, it is immediate.  I have heard of people having some success with OTC meds initially.  Many of the same people find that later on, OTC meds seem to quit doing anything for it.  As far as the timing of the hit goes...some get hit during the day, night, etc.  It is not very common for me to get hit while sleeping, although it has happened a few times.  I am chronic, and there is no real set schedule for me.
 
As far as diagnosis goes...see a neuro and describe your symptoms and see what he/she says.  A GP might work as well, but they can be hit and miss at times.  Then, take the quiz on the left.  Once diagnosed, do the research here on ALL the different types of meds (preventatives and abortives).  Then go see the doc again.  For many, verapamil seems to work well as a preventative while O2 and imitrex injections offer rapid relief from the headache (<15 mins).
 
Hang in there and be proactive!  If you truly have CH, you will encounter many stressful times in dealing with docs, meds, etc.  It will get better, remember that!
 
Regards,
Chris
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Re: Can I join your Club?
« Reply #4 on: Sep 14th, 2003, 11:28am »
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PJ,
 
Usually...Cluster Headaches are pretty defined by the intense (curse your mother for giving birth to you), pain that usually causes the sufferer to pace, rock back-n-forth, etc...You also usually get a runny nose & red, droopy, tearing eye on the side of the head where the pain is located. (I can go through a box of kleenex, with one attack). It's also a very quick headache. No pain to horrible pain in a few minutes with the hadache lasting from 30 minutes to a couple of hours & then from horrible pain to no pain again, in a few minutes. I can tell when the headache stopping when my nostril starts clearing up.
 
Get them diagnosed. Its location sounds familiar, but the intensity & the fact that you have had migraines tells me it may be something else.
 
Get ye to the Doctor...ASAP, & get a true diagnosis.
 
Good luck.
 
Jim
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Re: Can I join your Club?
« Reply #5 on: Sep 14th, 2003, 2:18pm »
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Hi PJ hope it doesn't turn out to be CH but like the others have said, get a proper diagnosis first....welcome anyway, and let us know how you get on...
 
Cathy  Smiley
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Re: Can I join your Club?
« Reply #6 on: Sep 14th, 2003, 2:21pm »
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welcome to the club PJ
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Re: Can I join your Club?
« Reply #7 on: Sep 14th, 2003, 4:53pm »
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Welcome PJ....as far as do you have CHS, you really need to see a Neurologist to find out....take the cluster quiz as advised above...I know when I first started getting chs over 25 years ago, mine were totally different than they are today..I was episodic and now I am chronic...but when they first started, they only lasted a few minutes..and I mean minutes...and I could use a goody powder to help me then...but I did have the classic droopy eye and stopped up nose...then after the first year, the beast went wild and the chs became fullblown..they definetly matured...What I am trying to say, is that I think all of us are different...some may start out diffferently than others...so go to a Neuro and find out what is going on with you..and If you do have chs, come back and get all the free valuable information that you willl never find anywhere else...Good luck, smiles,nancyc
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Re: Can I join your Club?
« Reply #8 on: Sep 14th, 2003, 9:44pm »
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Hello, PJ.....sorry you had to board the SS Cluster, but there's an oar waiting, and a seat......and lots of answers and understanding and support.....
It's true.....a visit to the Neuro would be in order, and  you just might find some great advice over here, to the left. Read, read, read, and ask any questions you have.
 
Watch out for Miss Fluffyknickers....she really can cause Twubble.....if she should approach you, my advice is you run like the wind....never know what that tart might have in store.....you've been warned!! ;D ;D ;D
 
Oh, and PFDAN! Wink
Cathi
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Re: Can I join your Club?
« Reply #9 on: Sep 14th, 2003, 9:52pm »
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(with arms crossed, and tapping my foot)
 AngryCathi!!!!  Need I say anymore??? hmmmmm? Angry
 
B E H A V E ! ! ! ! Wink
 
Chuck
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Re: Can I join your Club?
« Reply #10 on: Sep 14th, 2003, 10:04pm »
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welcome pj take everyone advice here READ every thing you can. keep us posted on how you are doing.
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Re: Can I join your Club?
« Reply #11 on: Sep 15th, 2003, 12:34am »
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Welcome and your membership is sadly accepted. We have more applicants than we'd like.  
 
These headaches wake you out of a sound sleep?  If so, I'd bet they are clusters.  
 
Headache pills are useless. My guess is that by the time the pills begin to catch up with the beast, it's already dissipated.  
 
I hope stick around and let us know how you're doing.
 
Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”
 
http://www.netsync.net/users/charlies/
 
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
Charlie
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Re: Can I join your Club?
« Reply #12 on: Sep 15th, 2003, 8:11am »
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Welcome.  
 
I disagree with the quick diagnosis of CH. The back of the head and neck thing are not common. Also, you mention nothing of shadows.
 
I know CH is different for different people BUT withouot more information and a formal visit with a Neuro who knows about the affliction I think it is not a good idea to automatically lable them CH.
 
Get yourself to the doc right away. Could be CH, could be a pinched nerve or god forbid a tumor. Do not take this lightly.
 
My 2c
 
jmin
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Re: Can I join your Club?
« Reply #13 on: Sep 15th, 2003, 5:43pm »
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on Sep 15th, 2003, 8:11am, jminmilwaukee wrote:
Welcome.  
 
I disagree with the quick diagnosis of CH. The back of the head and neck thing are not common. Also, you mention nothing of shadows.
 
......
 
Get yourself to the doc right away. Could be CH, could be a pinched nerve or god forbid a tumor. Do not take this lightly.

 
I agree with Jmin.  Hope all is OK.
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