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Frocster
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Am I a Clusterhead?
« on: Apr 4th, 2007, 6:43pm » |
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Hi there. Am I one of you? I have been having recurring bouts of crippling headaches for about 9 years now. Always above my right eyebrow, almost like I could draw a small circle around it with a pen. Always about 90 minutes in length, with a 5 or-so minute sensation beforehand to tell me what's coming. Always accompanied by a blocked/runny right nostril. (I find blowing my right nostril affords me a few seconds relief, but this soon leads to me blowing so hard that blood comes out!). Always with a sensation of giddiness after the headache has passed.
The bouts tend to come every couple of months. During a bout, I get a headache pretty much every other day at 8.30am, although I also sometimes get them during the night, which obviously wakes me up.
The pain is incredible. At work, I try to bury my head in my hands, but that never works. Paracetamol, Ibuprofen, Codeine.....they just seem to bounce off. I normally end up wandering aimlessly around the office for about an hour, desparately trying to resist the urge to kill or maim anyone unlucky enough to bump into me!
For about 5 years, I've been working on the assumption that I have a sinus problem. However, despite the best efforts of my GP we have not been able to get control of the headaches. I've had a CT scan, which (thankfully!) showed nothing untoward. We have ruled out migraine, as I have tried Imagram without success.
I'm now seeing a specialist, who is equally perplexed about my condition. When I last spoke to him, he mentioned cluster headache as a possible cause of my problem, and is looking into some oxygen therapy for me. His comment led me to the internet, and so to your website. I've read a few related sites now, and everything I have read about CH seems to exactly match what I am going through.
RSVP?
Frocster
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Yorky
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Re: Am I a Clusterhead?
« Reply #1 on: Apr 4th, 2007, 7:10pm » |
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OXYGEN.
froc it sounds like it to me.
i live in blackpool, if you want me to ring,or meet
just let me know.
read everything.
what meds you on
have you been diagnosed.
ggood luck buddy.
pull up a chair and learn more, take the quiz to the right
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Linda_Howell
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Re: Am I a Clusterhead?
« Reply #2 on: Apr 4th, 2007, 7:41pm » |
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Quote:| he mentioned cluster headache as a possible cause of my problem, and is looking into some oxygen therapy for me. |
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Smart Doctor. Stay with this guy.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Rosybabe
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Re: Am I a Clusterhead?
« Reply #3 on: Apr 4th, 2007, 7:57pm » |
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Hi Froc!
Sorry to tell you this but it does sound like clusters..
run for your O2!!
welcome aboard!!
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Charlie
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Re: Am I a Clusterhead?
« Reply #4 on: Apr 4th, 2007, 9:54pm » |
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Rats. I hate to read of another but it sounds very much like you will have to deal with this horror.
It looks like clusters to me. Linda is right too. You have good doctor.
Charlie
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pieface_49
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Re: Am I a Clusterhead?
« Reply #5 on: Apr 4th, 2007, 10:05pm » |
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Welcome Froc,
As I am learning, it is difficult for most Doctors to diagnose or want to diagnose facial pain. I don't blame them. There are about 30 or so types of severe facial pain. The list keeps growing. Recently I have had the 2nd MRI in 4 years with normal results. Had a Catscan (CT) 4 years ago with normal results. Someone on here suggested a PET scan. http://en.wikipedia.org/wiki/Positron_emission_tomography Upon reading the testimonies on the opening page here, I concluded I had CH. Take the "Cluster Quiz" on the left, decide for yourself. Read the "Medical Info" on the left. 9 hours is VERY unusual for an episode of CH. The norm is 5 minutes to 3 hours. In my recent cycle (7 weeks), there have been some non-interrupting "hits" of 4-6 hours. My bad episodes are within an hour, continuing to move along the clock, until the cycle ends. There are slight episodes in between of 5 minutes to one hour. I leave work if I know it is a long hit. How convenient the bad "hits" in this cycle started at 6pm and left at 6am.
Darn, I missed one hour of "The Poker Tour". Ch has become the most important thing in my life. After an episode, I too will laugh. Giddy, yes, whatever the affliction is now gone. So my feeble mind thinks.
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Frocster
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Re: Am I a Clusterhead?
« Reply #6 on: Apr 4th, 2007, 10:25pm » |
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Wow! I only posted this question 3 hours ago, and already 4 of you have replied!! Thanks a lot for that. Guess I'm not going mad after all!!
It's 3am here, and I'm just coming "down" from another headache. As grim as I am feeling right now, it's a great comfort to hear from people who can identify with this.
Yorky- you asked about meds, so here goes....
So far, I've squirted loads of things up my nose, such as cortizone, beconaise, and saline solution. (This was back when my sinus was thought to be the cause). None of this worked, unfortunately. I've also been on courses of amoxycillin, again to treat a supposed sinus problem, but again without success.
I have not yet been formally diagnosed with CH, although the specialist is looking at this as a potential cause of the problem. As well as oxygen, he has mentioned amiltryptiline and lidocaine as possible treatments. However, I won't get started on any of this until I have had an MRI scan, which is coming up soon.
Currently, I am not on any medication for the pain, so things are a little rough. (I can take over-the-counter painkillers any time I like, but it's pretty pointless!).
Thank you all for the supportive messages. I'll keep you informed as to how things develop at my end.
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Linda_Howell
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Re: Am I a Clusterhead?
« Reply #7 on: Apr 4th, 2007, 10:35pm » |
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Quote:| Guess I'm not going mad after all!! |
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Nope. Not from cluster headaches anyway. 
We are many, as I am sure you have seen from reading the boards here. We welcome you with open arms and hope you will continue to post your results as well as any questions.
My only hope is that someday....somewhere....everyone will sign their posts with a normal name. It is so hard to answer a post and say:
Dear, head gone wild.
Or Dear, Pieface.
Or Dear wannabeable,
Or Dear, frocster (is that a real name?)
Just one of my pet peeves, don't mind me. I am just
Linda
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Yorky
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Re: Am I a Clusterhead?
« Reply #8 on: Apr 5th, 2007, 10:12am » |
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fro
while you are waituing for diagnosis, try..
red bull, ice packs,strong coffee...cant think at moment,so will update later.
if it is the beast you have (try the quiz on the left) i live near by, so if the beast shows....let me know, cause i will help all in can.
good luck
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LeLimey
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Re: Am I a Clusterhead?
« Reply #9 on: Apr 5th, 2007, 10:28am » |
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Hi frocster
You need to get your doctor to refer you to a headache specialist neuro ASAP. For one thing there are over 600 headache types so symptoms frequently overlap. I'm NOT sayin you don't have CH BTW - the problem I have with medicating an unproven condition is that meds for one HA type can kill for another - literally.
Cluster headaches are a vascular headache, the meds we use constrict the blood vessels so if your problem isn't vascular then you are putting a lot of unnecessary stress on your circulatory system.
Yorky gave good suggestions with using strong coffee, red bull (or cheap equivalents) ice packs are brilliant too as they all constrict blood vessels too. The key is to get on all of them at the first twinge, don't wait to see if it develops just wallop the living daylights out of it!!
Come back with any questions, if you need any help we'll get it for you I promise.
Im organising a regional meet and greet in Blackpool in May if you want to check the meetings and gatherings board - it would be lovely to meet you if you're up to joining us!
Helen
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Yorky
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Re: Am I a Clusterhead?
« Reply #10 on: Apr 5th, 2007, 10:49am » |
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on Apr 5th, 2007, 10:28am, LeLimey wrote:Hi frocster
You need to get your doctor to refer you to a headache specialist neuro ASAP. For one thing there are over 600 headache types so symptoms frequently overlap. I'm NOT sayin you don't have CH BTW - the problem I have with medicating an unproven condition is that meds for one HA type can kill for another - literally.
Cluster headaches are a vascular headache, the meds we use constrict the blood vessels so if your problem isn't vascular then you are putting a lot of unnecessary stress on your circulatory system.
Yorky gave good suggestions with using strong coffee, red bull (or cheap equivalents) ice packs are brilliant too as they all constrict blood vessels too. The key is to get on all of them at the first twinge, don't wait to see if it develops just wallop the living daylights out of it!!
Come back with any questions, if you need any help we'll get it for you I promise.
Im organising a regional meet and greet in Blackpool in May if you want to check the meetings and gatherings board - it would be lovely to meet you if you're up to joining us!
Helen
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were you been helen ? hope your better now (i mean your health, not your mental
capability )
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LeLimey
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Re: Am I a Clusterhead?
« Reply #11 on: Apr 5th, 2007, 2:10pm » |
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Ive not been brilliant Yorky, getting bashed head and gut wise but on an up note things can only get better eh?!
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BrianJ
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Re: Am I a Clusterhead?
« Reply #12 on: Apr 5th, 2007, 2:45pm » |
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Hi froc sorry you have to be here bro helen and yorky have both helped me alot your in good hands with them mate and everyone else is great to although everyones a bit nuts lol i am a Scouse Git so not far from you ether
take care mate and dont let it beet you
Take it Easy
Brian
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Frocster
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Re: Am I a Clusterhead?
« Reply #13 on: Apr 5th, 2007, 3:08pm » |
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Thanks for those tips, you two. I'll get some Red Bull in, and will try it at the next "opportunity".
I totally agree with you, Helen, that self-diagnosis & treatment is dangerous. I've no intention of doing anything med-wise without first discussing with the specialist. (After all, He is the one who first mentioned the whole idea of CH's- I had never heard of them before). I've spent the past 5 years being treated for a non-existent sinus problem. I'm in no way upset about the sinus theory being a blind alley- after all, I was certainly convinced that sinusitis was the problem, and CH is so rare it is hardly the first diagnosis I would expect anyone to make. From what I've read so far about CH, it really does seem to match what I am dealing with. That said, this is all new territory for me, and like you say, there could be umpteen other causes!
A part of me really wants to be able to give a NAME to what's happening to me, but I would be unwise to make any self diagnosis. I'll leave that to the experts.
I appear to be on a long learning curve!
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LeLimey
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Re: Am I a Clusterhead?
« Reply #14 on: Apr 5th, 2007, 6:38pm » |
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Don't worry - we'll all help you all we can! 
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Redd
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Re: Am I a Clusterhead?
« Reply #15 on: Apr 6th, 2007, 6:49pm » |
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on Apr 4th, 2007, 10:35pm, Linda_Howell wrote:
My only hope is that someday....somewhere....everyone will sign their posts with a normal name. I am just
Linda
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I'm sorry Linda my dear, Redd or Pegg...I answer to both.
In fact I was never called by my name where I worked in IL.. They coined the nic Redd, and it just stuck. In fact one time my commission check was written out to Redd. (commission checks were hand written not computer generated) It was funny as hell.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Frocster
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Re: Am I a Clusterhead?
« Reply #16 on: Apr 7th, 2007, 8:51am » |
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Interesting morning.
About 08:15am I got the "tingle" to tell me that a headache was on the way. HURRAH, I thought to myself as I put the kettle on, pulled out an ice pack, and opened a can of Red Bull. That's when things started to slide.......
Today I discovered that I REALLY don't like Red Bull! I've never had it before, so this was my first taste. Basically, I performed a technicolour Yodel within 3 minutes of drinking the stuff, after which the urge to blow chunks had passed. Undaunted, I chugged two cups of demon-strength coffee (no problems there), and then I applied an ice pack to my head. THAT REALLY HURT!- I think it made my head even angrier!
To put things in some kind of context, by using the Kip scale (very useful I think, as pain is a subjective thing):
A Normal headache for me goes up to about 8, drops to 7 after an hour, then ends after another 30 minutes.
Today, it started on an 8 and pretty much stayed there for 4 hours. I've only just started to come down off the ceiling!
Think I'll lay off the Red Bull for a bit- "It gives you STINGS!"
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TonyG1
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on Apr 7th, 2007, 8:51am, Frocster wrote:| ... Undaunted, I chugged two cups of demon-strength coffee (no problems there)... |
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 I got a smile out of this ... is there any other kinda of coffee... Sorry the hit lasted for so long, those hits where nothing will seem to abort them are the worst !!!!!
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| « Last Edit: Apr 7th, 2007, 11:01am by Tony3901 » |
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