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Lilia

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I'm new :)
Jan 14^th, 2011 at 5:14am

Hi i'm new!!! found this while on a struggle with mr. beast. i'm really sorry for those who suffer this, but specifically those who have pain higher than 6 on the kip scale. the most i've experienced is 6, and i can sit still and lay down. I pray to God i never ever have to take the beast out for a walk....that sounds really scary :/ i'll be 21 in less than a month, i'm a university student, and a happy person because i found people who understand these horrible headaches!!!

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McGee CH.com Veteran Offline I Love CH.com! Posts: 220 Gender:	Re: I'm new :) Reply #1 - Jan 14^th, 2011 at 5:53am hi lilia and welcome, please tell us a little about yourself, eg what medication your using, do you have O2, are you keeping a diary (frequency of attacks etc) this info will help us to help you. mark (always ready with a kind word & a size 9 boot)
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wimsey1

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Re: I'm new :)
Reply #2 - Jan 14^th, 2011 at 7:45am

Lilia wrote on Jan 14^th, 2011 at 5:14am:

Hi i'm new!!! found this while on a struggle with mr. beast. i'm really sorry for those who suffer this, but specifically those who have pain higher than 6 on the kip scale. the most i've experienced is 6, and i can sit still and lay down. I pray to God i never ever have to take the beast out for a walk....that sounds really scary :/ i'll be 21 in less than a month, i'm a university student, and a happy person because i found people who understand these horrible headaches!!!

When and how were you diagnosed with CHs? We all know, of course, women don't get em. Just kidding. Anyway, welcome and sorry you needed to find us, but glad you did. Look forward to hearing more about your experiences. Blessings. lance

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Guiseppi

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Re: I'm new :)
Reply #3 - Jan 14^th, 2011 at 8:48am

Okay those wimps above me have left it to me to be the voice of doom and gloom!!

I never fot a real hit until my early 20's. In my teens, like you, I got the 3-6 level hits, classic CH attacks in all things but the pain level. My mid 20's I found out what KIP 10's were.

None of the above is meant as a woe is you here it comes message. It's important that you educate yourself now, do your homework, learn everythng you can about effective prevents and abortives. I hope and pray your CH never prgresses above where it is now. If it does, far better to have done your homework, have oxygen suppliers figured out, and have an understanding neuro you're ALREADY working with.

Then you won't have to spend weeks or months really hurting while you try to play catch up.

Welcome to the board, we'll help you any way we can.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Jeannie

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Re: I'm new :)
Reply #4 - Jan 14^th, 2011 at 11:37am

Hi Lilia!!!!

Welcome! Smiley

Yep, What Joe said. Educate yourself and always be prepared.

I had my first CH when I was ten. I was thirteen the first time I thought I would be killed by it.I was sure something would pop in my brain. I remember it like it was yesterday.... I went on like that till I was correctly Dx'ed at 28. When I think of all those hours of pain... Undecided

I'll never live in fear and pain like that again!!!!! You shouldn't either!

PF wishes,

Jeannie

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« Last Edit: Jan 14^th, 2011 at 11:38am by Jeannie »

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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his wife

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Re: I'm new :)
Reply #5 - Jan 14^th, 2011 at 2:09pm

Hi Lilia and welcome to your new family. You've come to the right place and will get all the advice, based on experiences, that will hopefully help you through this. Good for you that you're in school and try not to let this interfere with your studies if at all possible. If that does become a problem, work with your advisor and professors so they understand your situation and will work with you so that you can finish.

If you have any supporters such as parents, siblings, friends, signif others, send them here too. Knowledge is power and you need a support system that is educated also to not only help you through your hits and cycles, but to be your advocate when you need it.

Hang tough kiddo...we're all here for you.

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Lilia

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Re: I'm new :)
Reply #6 - Jan 19^th, 2011 at 7:57am

Thank you so much for your warm welcome! I was diagnosed with migraines around November. The neurologist prescribed Topamax for "prevention" *rolling my eyes* and two meds to treat an existing headache: Maxalt (super expensive) and some form of aspirin. They didn't work. Meantime, my headaches were interfering with holiday gatherings (I.e. relatives don't understand why "a little headache" is such an issue.) I began to worry about the horrible pain in my eye and that perhaps something else was wrong. The optometrist I saw mercifully understood my pain because he suffers them himself. Since its pretty recent since the diagnosis, ive simply tried to survive with aleve, excedrin migraine, advil,.advil pm, etc.... I haven't started a diary because honestly I don't want to do anything while I have the headache and when its over I just want to forget it. I have found one trigger food, a Norwegian chocolate apparently made with hazelnut. For the guys who don't understand how horrible it is that I need to avoid chocolate, it is am epic tragedy I have yet to accept. I will ask my neurologist about imitrex since it seems like a popular treatment. We shall see how it goes! Thanks again for the support.

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Guiseppi

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Re: I'm new :)
Reply #7 - Jan 19^th, 2011 at 8:53am

Be really careful with the over the counter pain killers, any kind of long term use has potential for damaging your internal organs, not to mention the potential of rebound attacks. Continue to educate yourself. I used to try and forget about my CH between cycles. Big Mistake! Cheesy

ALWAYS be ready for a cycle to start, learn all you can so when beasty raises his ugly head you're ready to go!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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37-41withrestrictions

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Re: I'm new :)
Reply #8 - Jan 19^th, 2011 at 12:10pm

Be really careful with the over the counter pain killers, any kind of long term use has potential for damaging your internal organs, not to mention the potential of rebound attacks.

Hi
Prior to my diagnosis from the neurologist and current meds I took masses of over the counter remedies, i fooled myself into believing that 1 of them would eventually work and I took so many, when the neuro got hold of me she advised a medication holiday- nothing but aspirin for 5 months,,, got rid of the rebounds but my god it was hard.
I'm now on verap and sumatriptan, I have recently has the dose of verap increased so am waiting to see if there is any improvement.
This site is great ...I'm currently like a sponge reading as much info and posts as I can,so many of my questions and concerns have been answered just by reading others posts!!!
At last a group of people who totally understand the pain and despair I feel and just knowing I can sit here and connect to support whenever I need it (even if there is a time difference!!!) is so reassuring.
Take care
Sue

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If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!!

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bejeeber

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Re: I'm new :)
Reply #9 - Jan 19^th, 2011 at 12:55pm

Lilia wrote on Jan 19^th, 2011 at 7:57am:

I will ask my neurologist about imitrex since it seems like a popular treatment. We shall see how it goes! Thanks again for the support.

It's important to not let a doctor prescribe the pill form of imitrex because it is generally ineffective for CH. Injectible is most effective - expensive though, so you'll want to be fully aware of the imitrex tip that allows you to stretch doses. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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High liter flow 100% O2 is a much more universally favored abortive amongst the CH regulars here as it is non toxic/no side effects and is effective. Personally I've used O2 as a first line abortive, but have had imitrex injections ready to go in case the O2 isn't accessible or doesn't work.

I think there is a LOT you can learn here to help prevent/abort your attacks. For starters:

9 mg or more of melatonin at bedtime eliminates night time hits for some CH'ers.

There's a movement towards the powerful "busting" approach to CH prevention, which is the focus over at clusterbusters.com. Here's a good Newsweek article on busting and CH: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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