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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello
        
(Message started by: Stillseeking on Sep 6^th, 2006, 11:32pm)

Title: Hello
Post by Stillseeking on Sep 6^th, 2006, 11:32pm

Hey i'm Alex, i'm 15yrs old and I live in Wellington, New Zealand.

I was Diagnosed with CH about a month ago..just after they started so I guess i'm in my first cycle. So far i've taken about a million medications for migraines (had scine january) which includes about every medication I can get for CH! I'm allergic to imitrex, can't have oxygen in my own home for some strange reason and the only medication thats worked (fentanyl) i'm not allowed because i'm toyoung.

I've got a few questions

I get 2-3 CH's a day and I just want to know how do you guys deal with them for like 20yrs? I can't stand them!

Will i get these for the rest of my life?

What medications would you recommend considering i've tried just about every single medication listed on this site other than lidocaine which i'm getting tommorow.

I'm so glad I found this site, nobody around me understands what its like! They all just sit there saying "Have you just got another headache, it can't be that bad." Atleast I know everyone here feels what i feel!

Title: Re: Hello
Post by nani on Sep 6^th, 2006, 11:40pm

Hi Alex. Welcome, and I'm so sorry you had to find us.
Let's start by not worrying about the rest of your life, OK? We deal with it one cycle (or headache) at a time. We are some of the toughest people alive, though I know that's little consolation when you are suffering. I can't help much since I'm in a different country, but I have a wonderful friend in NZ who may be able to offer more specific advice. I'm going to show her your message and she should contact you.
I'm confused about the oxygen... do you know why you aren't able to have any? I think it's the safest treatment available to us. Perhaps your parents can look into it further? Your treatments should include a preventative, and an abortive. Sometimes a transitional med (like prednisone) can help while the prevent(s) kick in.
I'm sure others will be along soon, hopefully with more helpful info than I have.
pain free wishes to you, nani

Title: Re: Hello
Post by Stillseeking on Sep 7^th, 2006, 1:21am

Hey, thanks that would be good to hear from other sufferers in NZ, My parents have been looking into oxygen and have made many inquiries. The story is something to do with funding and that it would take awhile to get it. Tommorow I have an appointment with the neurologist to discuss treatment options and I think he was doing something about the oxygen

Title: Re: Hello
Post by MJ on Sep 7^th, 2006, 1:54am

Hi Seeker. Good to have you on board.

Have your neuro look here on this site if he/she hasnt allready it may be beneficial to the both of you.

Best of luck at your appointment, its best to see what options he gives you before letting us overload you.

Anxious to hear how it goes.

Even after 20 years most still cant stand them. You are a bit luckier as science is just beginning to catch up to us. Mostly through the efforts of sufferers like you and I.

Caffeine helps a bit for many, coffee, Mt dew, Red bull etc. will sometimes ward off an attack.

Everyone here knows how it feels.

Title: Re: Hello
Post by LeLimey on Sep 7^th, 2006, 3:54am

Hello Alex
I have a son of five called Jasper who is just starting his 3rd cycle. He only uses Oxygen as he is simply too young for any other med. The good news is it works brilliantly, we can abort a hit for him in under ten minutes.
If you would like any info on O2 use in kids or any personal anecdotes which might help you in your getting oxygen please email me or have your parents or neuro do so! My email address is on my profile if you click on my name.
I'll do all I can to help, it crucifies me when kids have to deal with this as well as us adults.
If your parents need anyone to talk to about it too please let them know we'll help them any time as well okay?
Best wishes
Helen

Title: Re: Hello
Post by georgej on Sep 7^th, 2006, 4:00am

Hi Alex,

You're in good hands with Helen and Nani. I won't add anything further to what they've said.

I started when I was thirteen. I'm a lot older than that now (LOL) but I still remember what it was like to get them early on. Just remember you're not alone with this--there are lots of good people who'll be happy to help here.

As Nani said, don't worry about the future. Just deal with each cycle and each hit as it comes. Life's a miracle--with or without CH.

Best wishes,

George