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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie!
        
(Message started by: GaryBadHead1 on Jul 26^th, 2007, 12:44pm)

Title: Newbie!
Post by GaryBadHead1 on Jul 26^th, 2007, 12:44pm

Hello all!

Well where do i start, like the rest of you i suppose! I was 26 when i experienced my first attack. I had a fairly good night out and woke up with a hangove on the saturday morning. I took two paracetamol and thought nothing of it. The headache didn't go away so i grabbed an early night.

I woke early on the sunday morning with a searing pain behind my left eye, it was also running profusiouly. I have a lazy left eye so I was fairly concerned, about 5 - 10mins after i woke up i felt a dreadful pain in and around the same area. It felt as though i wanted to grab a spoon and literary spoon the eye out of my head! I had never suffered such pain before, i went to the doctor after a week as this came and went all week. They examined my eye and found nothing wrong, they said they couldn't explain the head pain either. I was left to get on with it.

After several visits to my GP i pushed to see a neurologist, he suggested i suffered from migraines but ordered an MRI to be on the safe side, this came back all clear, headaches are still ongoing now. I don't seem to have any cycle, they just come and go when they please. I have probably had 40 + days off of work due to this!

I have been placed on a drug called Rivotril (clonazepam) has anyone heard of this!? I don't fully believe that my GP knows what they are dealing with! Anyway i feel for all us for having to go with this, daily, weekly and monthly all year round....

If someone could give me some advise on what i should say to my GP i would be grateful! Does anybody else suffer from a daily headache as well as a CH?

Kind regards, and all my best

Gary (28m, UK)

Title: Re: Newbie!
Post by Guiseppi on Jul 26^th, 2007, 1:42pm

Welcome to the board, the good news is there are lots of people with lots of experience here. The bad news is we haven't found a cure yet, but there are ways to manage these things. You will have to do a lot of reading here on the board, so you will be ready to manage your care. If you walk into a doctors office and rely on them to manage this, you will hurt, a lot.

You need some type of a preventative medication, that's a med you take while you are on cycle, getting headaches. The idea of the prevent is to lessen the frequency and intensity of your head aches. I use lithium, others use topomax or verapamil, It may take some experimenting to find one that's effective for you, it's worth the work.

Then you need an abortive. Something to stop the pain. Your first line abortive should be oxygen. Started at the first twinge, it will abort a headache for me in less then 10 minutes. You have to breathe pure 02 for it to be effective, you will nee a NON REBREATHER mask and a high flow valve, up to 15 litres per minute. Don't let them give you nasal canulas they are next to worthless.

For now try slamming an energy drink when a headache starts, monster, rock star, look for one containing caffeine and taurine. Many can abort a headache with one of those. Ice packs on the affected side will help some.

Stick around the board, you have much to learn and many people who will gladly help you. Several of your countrymen,,,,and women,,,will be along soon to help with "country specific" meds!

Guiseppi

Title: Re: Newbie!
Post by GaryBadHead1 on Jul 26^th, 2007, 2:02pm

Hey thanks for the welcom and advice Guiseppi, I did read that pure O2 is the way to go. This would be ideal as they hold this in our first aid room at work.

Time to buy in the NRG drinks!

Thanks again

Gary

Title: Re: Newbie!
Post by Rosybabe on Jul 26^th, 2007, 4:04pm

Hi Gary!

Welcome aboad!

I found this about Clonazepam..

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682279.html

acording to this article it should work as Topamax but the Doctor did not give you any abortives..

Please read as much as you can . Sometimes we (the sufferer) need to educate the Doctors about our condition.

You can find a lot of good information and also a Cluster quiz than can hlp you find out if you suffer from CH. There are some links to the left of this page and also in this link..

http://www.ouch-us.org/index.shtml

Please stay around and let us know how you are doing.

Good Luck and Pain free wishes for you!

Rosy.

Title: Re: Newbie!
Post by sandie99 on Jul 27^th, 2007, 5:36am

Gary,

warm welcome to board! :)

I'm so sorry that you have ch, but you'll find lots of information & support right here! :)

I trust energy drinks myself, I hope that they will help you as well! If not, there are plenty of other things to try and you will find the right treatment for your ch.

PF days,
Sanna (27, sufferer since 2001)