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        Cluster Headache Help and Support >> Getting to Know Ya >> Hello all, CH sufferer from UK
        
(Message started by: Qam on Jan 5^th, 2008, 3:27pm)

Title: Hello all, CH sufferer from UK
Post by Qam on Jan 5^th, 2008, 3:27pm

I recently discovered this site after trying to find more information about CH.
I am happy to know that there are other people like me who are going through the same pain, and that I am not alone.
I have been a sufferer of CH for 4 years now (not chronic) but I feel they are somehow getting stronger and stronger. This time round, they are occuring more during sleep.
I would like to know how people deal with their CH and what works for them, and any suggestions.
I have asked my doc to refer me to a Neurologist for further examination.

Many thanks for all your help.

Title: Re: Hello all, CH sufferer from UK
Post by Dape on Jan 5^th, 2008, 4:06pm

Hi Qam,

Glad that you have found us, i am just sorry that you have to be here.

I've got a few questions for you which will help us suggest options for you to discuss with your doctor. We aren't doctors, we are expert patients though and we know enough to suggest options for your doctor to tailor to your own medical history.

Have you had an MRI at any point?

Have you been referred to a neuro?

What meds are you currently taking and what have you tried in the past?

Did any of them help?

Have you ever tried O2?

How long do your attacks last without treatment and with treatment?

How many attacks a day do you average?

Are they mainly at night or during the day?

Do you get a cycle at the same time every year or does it vary?

Dape

Title: Re: Hello all, CH sufferer from UK
Post by Qam on Jan 5^th, 2008, 4:24pm

Hi Dape, thanks for getting back so quickly.
Here is my response to your questions:

Not had MRI

My doc is making an appointment to see Neuro

Not taking any meds to date

Have not tried O2, but hoping the neuro will subscribe on my behalf

Attacks generally last about 45 minutes to an hour (without treatment)

Attacks per day on average = 4

This time round they are mainly at night/early morning

They roughly occur every 12/13 months and last for 3 weeks.

Hope this helps

ps how do you define KIP scale?

Title: Re: Hello all, CH sufferer from UK
Post by Guiseppi on Jan 5^th, 2008, 4:42pm

Hey welcome to the board. If you look on the left side of the board, click on the bar "Kip Scale"...it's the table we use to measure the attacks.

Until you can get to see the doc, try slamming an energy drink containing caffeine and taurine, at the first sign of an attack. Many can abort using just that. Good luck with the neuro, really push for the oxygen. Download the info from the oxygen link, also on the left, and brijng it to your neuro, it'll answer a lot of his questions.

Guiseppi

Title: Re: Hello all, CH sufferer from UK
Post by Rosybabe on Jan 5^th, 2008, 5:35pm

Hi Qam! Welcome aboard!!

The kip scale is to the left. In the meantime you can try with melatonin since your hits are mostly at night. 9 to 12 mg of melatonin and a benadryl at night will help with those night hits. melatonin is over the counter. Ice packs to the site will help too.

Hope your neuro works with you and gives you the right combo of meds. You can also try checking with OUCH UK. They have a lot of info there.

Check in with us after you see your Doc and to see how are you doing.

Pain free wishes for you!!

Rosy.

Title: Re: Hello all, CH sufferer from UK
Post by imfareware on Jan 5^th, 2008, 5:48pm

Hello,

Hang in there!! This site has already helped me, just overnight also! :)

Title: Re: Hello all, CH sufferer from UK
Post by Linda_Howell on Jan 5^th, 2008, 7:17pm

Here is the KIP scale in case you can't find it. Newcomers some times have trouble navigating around here so we know it can be confusing.

http://www.clusterheadaches.com/scale.html

We don't understand it, but there are Dr.s out there (too many) that for whatever reason are hesitant to precribe 02. Read this page, learn it and print out anything you feel will be of value to take to your Dr. regarding why oxygen is a very good choice in this battle to abort a Headache.

http://www.ouch-us.org/medications/oxygen/o2info.shtml

In the meantime, go get some of the energy drinks like Red Bull, Rock star and others. Taken as soon as you feel a HA coming on. The caffeine and Taurine in them help to some degree...as does very strong coffee, ice packs and vigorous excersize.

The more educated YOU are about these....the better chance that you will get the treatment you deserve.

Linda

Title: Re: Hello all, CH sufferer from UK
Post by RichardN on Jan 6^th, 2008, 12:22am

Hello Qam and Welcome

Another vote for 02 here. I can't use triptans (artery blockage and high cholesterol), so 02 is my only abortive . . . can usually kill the beast in minutes if used early-on in the attack.

Start a headache journal NOW. Note the time, duration, Kip (pain) level. When next you see a doctor, take the journal AND a copy of the Kip scale with you . . . . can save a lot of time.

You have a lot of reading to do, and many questions to ask. Fire away . . . . there's no med or therapy available that hasn't been tried by members of this board . . . and the answers you will receive come from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Hello all, CH sufferer from UK
Post by Qam on Jan 6^th, 2008, 11:48am

Dear all

Thank you so much for your concern and support.
I embrace all your advice with sincerety and I am so much more relaxed knowing that I can talk to you about this.
I will keep you informed of my progress with the neuro and also post results of the medication taken.

Talk soon!

Title: Re: Hello all, CH sufferer from UK
Post by rocketman3104 on Jan 6^th, 2008, 1:02pm

Welcome, sorry you had to find us, but glad you did. O2 is my first line. Aborts almost all of them. Some get through, but not many.

Title: Re: Hello all, CH sufferer from UK
Post by michael on Jan 6^th, 2008, 1:31pm

Hi Qam and welcome from Nottingham

Mike

Title: Re: Hello all, CH sufferer from UK
Post by mummymac on Jan 7^th, 2008, 2:03pm

[smiley=hiya.gif]

Welcome Qam from not very sunny Jersey ( blowing a bloody hooley here) , I am still finding out about all the differant medications and treatments

There are people here with a lot knowlage are very willing to share it.

read everthing it really helps

Title: Re: Hello all, CH sufferer from UK
Post by Beastfodder on Jan 10^th, 2008, 8:36am

Qam,

All the best - couple of things I left out of the message, the energy drink tip's a good one - tho' a bit impractical in the wee small hours.

Also second the exercise thing and keeping a headache diary - it's quite a sobering thought when you find out that you've spent over five days in agony over the past three months.

Don't know your timescale for seeing a neuro - but can't see why your GP can't put you down for O2 now, won't be much use after you're through this 3 week cycle and if it works it'd make the next time that much better.

Title: Re: Hello all, CH sufferer from UK
Post by tessistired on Jan 10^th, 2008, 8:58am

Hi Qam!

Welcome to the family!!

I just want to confirm and stress how wonderful and important everyone here on this forum is!! I am so glad that you found this site but sad that it is under the circumstances we share. But...we are a great support for eachother and without these people I would have gone insane, and without everything that I have learned just in the past few months my treatment plan probably would not be as it is now.

So I wish you the best and PAIN FREE DAYS AND NIGHTS ALWAYS!!

Please dont be a stranger and come visit us in clusterheadaches chat too

Tess