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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Suffering in Ireland
        
(Message started by: ladyhawke03 on May 27^th, 2004, 4:31am)

Title: Suffering in Ireland
Post by ladyhawke03 on May 27^th, 2004, 4:31am

My 13 year old son had just been diagnosed with CH. (the doctor thinks) I moved over here from the states and the health profession is not what it is back in the US. Most doctors here have never heard of CH. But my son has had this for over 5 years on and off. Maybe 2 or 3 times a year. But in the last few months it has gotten worse and in the last 2 weeks it has been every day 24/7. The over the counter stuff doesn't help. And the Dr. said that the only medication is for ovwere 18's only. Is he doomed to go without anything?

Title: Re: Suffering in Ireland
Post by pubgirl on May 27^th, 2004, 4:49am

Ladyhawke

The Doctor is talking complete crap!
We have several younger sufferers in the UK who are members of OUCH UK, the support group for CH sufferers in the UK (www.ouchuk.org) who use Imigran and very young sufferers who use high flow rate 02 therapy.

You might want to have a read around this site as there are links to special information for younger people. Also your son may want to hook up with the other boys (and a girl too) who have Ch in the Uk. They are very friendly and happy to talk to new people.

If you want to message me privately with an email address for your son (don't put any personal info on here) I can put him in touch with the others. Alternatively come over to the support board, or join OUCH UK so your son can post on the members board. We also have a Helpline manned by CH sufferers who you and your son can talk to in person about treatments in the UK.
We have some other people in Ireland too.

Wendy

a good place to start for reading around is:

http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_kids.cfm&added=30/07/03&code=CC

and the Children and Clusters Board on here and also

http://www.clusterheadaches.org/resources/kids.htm

Title: Re: Suffering in Ireland
Post by ladyhawke03 on May 27^th, 2004, 7:16am

Thanks so much. He does want to talk to other people with this. He will be delighted. :) He feels like he's the only kid with this. It really is bad, but I have to say that I'm relieved to know what it is as I was very worried. It must be so hard for kids to go to school with this, but he is an over achiever and doesn't like to miss. He's also very hyper, which I wondered if that had anything to do with it. But thanks for your advise. And I will tell him about the site.

Title: Re: Suffering in Ireland
Post by BobG on May 27^th, 2004, 9:06am

I'm not a doctor and this is only my opinion. A couple of things you said makes me believe your son does not have cluster headaches.
The headaches started at age 8? That is very young for clusterheadaches to start. It's not unheard of but it is very very rare.
Every day 24/7? Do you mean the pain is there 24 hours a day every day? Clusterheadaches last from 15 minutes to about 2 hours.
Has your son been checked by a neurologist? Had a CAT scan or MRI?
Please tell us more.

Title: Re: Suffering in Ireland
Post by Woobie on May 27^th, 2004, 10:20am

on 05/27/04 at 04:31:36, ladyhawke03 wrote:

My 13 year old son had just been diagnosed with CH. (the doctor thinks)

in the last 2 weeks it has been every day 24/7.

Do you mean the Headaches are 24/7? Nonstop??

just wondering............

regardless... I hope he gets what he needs. Kids shouldn't have to deal with head pain. well, NO ONE should, but you know what i mean. ;;D

tina