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Title: hello! Post by kamccran on Feb 13th, 2004, 10:55pm Hi, I'm new, as you might be able to tell. Well I don't know how to start this topic really, so I guess I'll just tell you "my story". It was last night, I got home after going out with some friends. I got to bed at about 12:30 but I woke up at about 2am with this excruciating pain in my eye. I didn't know what was wrong, I thought maybe I was still dreaming or something. My nose was runny, which was weird as I had a cold but it went away a few days ago, so I thought maybe it had come back or something. But yeah I rubbed my eye, and it still *really* hurt, so I reached for the lightswitch and stumbled into my bathroom to see if there was anythign wrong with my eye, it looked normal. I was still puzzled as to what was up, I splashed water in it thinking maybe I had something in it, didn't help, went to bed as I was still really tired, but it got worse as I led down! I kept wondering about my room - I realised that this actually kinda helped, well, was better than lying down anyways. I had no idea what to do, I was so incredibly tired, but I couldn't go to sleep becuase it was that painful, so I turnt my computer and tried to watch a DVD, but it 's right by bed which looked *so* comfortable, and I just got more tired watching the DVD, so I turnt my xbox on and was playign that but that made me tired, and didn't help my eyes much. i had to turn the brightness down on my tv as well, as that added to the pain. (had to keep lights on so i didn't fall asleep but it made my eye hurt even more. i guess squinting didn't help) i then tried to do my Spanish homework, but I couldnt' read the book properly (things were kind of blurry). It was getting worse, so bad I was sat in my room crying, and I had no idea why. I gave up and went and woke my parents up, I mean, it was 4am now, I knew that they wouldn't be able to do anything to help, but maybe there was somethign in my eye, or something wrong with it, that i couldn't see. they dind't see anything - they said my eye looked perfectly normal, i bet they couldn't understand it when i tried to explain the pain I was in. I went back into my room and turnt my music on (quietly) and tried to think of ways to stay awake - my mum then came into my room and said 'can't you try and go to sleep?' and i said 'i can't - it gets worse if i lie down or shut my eyes' it was awful. finally, at about 5am, i managed to go to sleep (that was a good sleep!!). My mum came into my room at about 9am saying that I had an appointment with the eye doctor at 11:30 this morning, and so i dragged myself out of bed. i was withe the doctor for about 15 minutes, when he said he said 'it was a headache' and i was all 'but my head didn't really hurt...' (a headache? are you kidding! i took some advil, nothing helped!) and he said that it was a special kind, called a cluster headache. (he managed to diagnose this just after me explaning my 2 hours of sleep, and excruciating pain in one eye for 3 hours). i mean i didn't know what to think! he was blaming all this on a headache?? i thought something was wrong with my eye, maybe i'd need glasses or something, i had no idea, and he tells me it was a headache! anyways, i went home and looked online and found lots of websites to do with it. i couldnt' believe it - the symptoms, exactly what i had been through. i was stunned, - runny nose, small pupils, havign to move around a lot and can't lie down, one eye hurting, waking up after 2 hours of sleep, lastign for 3 hours. it was unbelievable. i am relieved to know what it was, though now i know more about it, i'm a little afraid to go to sleep tonight!! wow ok so my intro was a bit rambly, and long winded. sorry about that! this site looks awesome btw, shame that so many people (even though a minority of the population) have to suffer from these, but it's cool that you guys have this site and the support from each other! Oh, I realise that the typical sufferer of cluster headaches are males, aged 20-40, and you may realise that I am not.. I'm 18, and female.. just incase I needed to clarify?? Well anyways, hi! (Hmph. I was dreading Friday 13th. 2 hours into it, and I get one of those. that's so not cool.) - Kirsty. |
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Title: Re: hello! Post by Prense on Feb 13th, 2004, 11:27pm Welcome aboard! If it is indeed CH, you are in for many more occurances of that night. Did the doc refer you to someone that can help? Personally, there is no way in hell I could even attempt to read a book, play a video game or much of anything really when being attacked... Chris |
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Title: Re: hello! Post by kamccran on Feb 13th, 2004, 11:35pm Well i had no idea what was going on, all I knew is that I couldn't lie down or go to sleep, so I was trying different things to try and keep myself awake, as I was so incredibly tired. What do you do when you get an attack? Well I live abroad, in Latin America, at the moment, so everything was said in Spanish. I can speak spanish, but not exactly fluently. I rmemeber he said to me that if it happens again I'll need to go see ... and I have no idea what the last word in that sentence as. Sounded like some sort of medical thing. I still was kinda stunned by the ract that it was a "headache" that I got - until I looked online. |
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Title: Re: hello! Post by Prense on Feb 14th, 2004, 10:15am on 02/13/04 at 23:35:22, kamccran wrote:
O2 -- check the link on the left. Imitrex -- when the O2 doesn't work. I have not been successful in finding a preventative, but I am still trying. Non medicinal things you can try to abort these attacks: COLD shower HOT shower HOT, STRONG coffee Direct ice application (frozen peas work good for this) Some people find the running as fast as they can will abort an attack. There are many more things you can do...keep on reading! Chris |
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Title: Re: hello! Post by eyes_afire on Feb 14th, 2004, 11:56am Hi Kirsty, and welcome. It is remarkable that the eye doc was able to give you such a speedy diagnosis. That doc deserves a medal or something. I've been through several docs that didn't have a clue about cluster headaches. When I started getting them, I didn't know what the hell was wrong with me and tried doing things to no avail... the pain was just too much. Best advice right now is to completely check out this website... it's great! Best wishes, --- Steve |
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Title: Re: hello! Post by Lori on Feb 14th, 2004, 1:50pm Welcome...although I'm sorry you need to be here. I'm curious to know if the eye doc told you to see a neurologist? You need to find one who treats cluster headaches. When you call ask the receptionist questions about if he/she treats clusters (and you don't mean migraines, but clusterheadaches, be specific) ask if they are successful with treatment, if they use oxygen for treatment, whatever you can get out of her. It may not be much, but something is better than nothing. Arm yourself with knowledge before going so you'll be able to discuss your treatment. Go here http://www.clusterheadaches.org/medications.htm and read about the medications most used and read, read, read. Praying you get relief as you deserve! |
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Title: Re: hello! Post by pubgirl on Feb 14th, 2004, 6:39pm Hi Kirsty Have sent you a private message! Lori Regrettably the system doesn't work like that here. You can't just decide to see a neurologist. The NHS requires you to be referred by your GP, if you are lucky you get a good GP who will do that. Then, if you are an NHS patient (which most people are) you can wait a VERY long time for an appointment. If you go privately, one brief appointment with a neuro costs £150-200, and you still should have a Gp referral even for that. The good news though Kirsty!!!!, many more GP's here are clued up about CH and how to diagnose and treat it, and the OUCH UK site can help you with how to get the right treatment from willing GP's. Failing that, since you live in London you are wonderfully placed to become a volunteer at Queen's Square which is one of the world's leading places for CH treatment. Keep us posted how you are getting on and hope to talk to you at OUCH Uk sometime Wendy |
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