Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> 30yrs of CH .....it finally ended.
        
(Message started by: Jillor on Mar 28^th, 2006, 9:41pm)

Title: 30yrs of CH .....it finally ended.
Post by Jillor on Mar 28^th, 2006, 9:41pm

I was a 19yr old country girl when they started and thanks to some influential family friends in the city I was put in the care of Prof. James Lance, a renowned Neurologist and international headache specialist in Sydney( Australia) He did every type of brain scan available in 1976 and 3 months of diary keeping, tests and exams later he diagnosed chronic CH. Very little was available back then to help medically and the only drug used was taken daily to prevent onset and was so debilatating, it was impossible to function. ( I can't remember what it was) I stopped taking it 6 mths later and began 30yrs of accepting and coping. I have worked and lived all over Australia and whenever the pain drove me to seek medical help, all doctors would begin argueing my diagnosis ( wrong gender, wrong age blah blah) until I uttered the magic words..."Prof. James Lance". Still there was little medical help back then. The best help was family and friends who understood, who knew the drill and provided the comfort and support needed to "survive' an attack.
2yrs ago, whilst staying with my Mum on the Gold Coast I woke early with a size 9 killer. Without my usual support group ( husband and sons) my Mum didn't know what to do to ease my suffering and called an Ambulance. Despite my being in the emergency rooms of the busiest hospital on the busiest morning, my room was filling with young doctors, like I had some bizarre rare disease .....turns out one of the on-duty interns was a student of the head Neuro, a Dr Williams, who at the mention of "Prof. Lance" had rushed to my side. He called all his neuro students and displayed me like exibit A. He had found a CH suffer who was female, whose CH was sudden onset and lasted from 20 mins to 18 hrs and had suffered for 30yrs!
Everything failed me that day.....oxygen, water, ( I tried these after finding your web site 6 yrs ago! ty :D) subcataneous lidacaine drip....and I was already on huge doses of Oxycontin for severe spine degeneration pain! He kept me in for 10 days just to document my history etc and wanted me to see him every week to continue. He had a theory about S.U.N.C.T clusters being a sub catergory and believed mine was that.
I live 3 hrs from his surgery and can't cope with much travel, so once back home I ignored his calls. I'm too old to be a lab rat! ;)
My GP had never had a CH patient but had heard that Indomethacin helps some people. He did some research and despite my CH not fitting the usual criteria, we tried it anyway. 50mgs morning and night. I have not had a CH for 2 yrs now and my family want my GP cannonised!
After 27 yrs I rarely mentioned my CH to doctors anymore ( despite seeing 6 Neuro's in the last 3 yrs! ), so if he had not been treating me for my back and been concerned about my making trips to Dr Williams......
I will end up in a wheel chair and I suffer from constant ,severe and chronic pain which truly gets me down, but nothing compares to the desperation a number 9 CH can induce. I can't believe it's over.
When you are not having one, you live in fear of one. I know I don't have to tell any of you what that means.
So my point is ......don't give up.
Even if your headaches don't fit the "mould" for certain treatment ..try it!
and keep your doctor on the ball...do your research, educate them.
Cheers and my very real compassion to you all.
Jilly

Title: Re: 30yrs of CH .....it finally ended.
Post by Richr8 on Mar 28^th, 2006, 9:50pm

I am really gald to hear that you finally found relief. Are you taking the Indomethacin on an ongoing basis?

Title: Re: 30yrs of CH .....it finally ended.
Post by AussieBrian on Mar 28^th, 2006, 10:27pm

Fabulous news, Jilly. It gives us all hope that perhaps the light at the end of the tunnel isn't just a steam train headed straight at us.

Title: Re: 30yrs of CH .....it finally ended.
Post by Jillor on Mar 28^th, 2006, 10:31pm

Hi Richr8,
Thank you for your good wishes and Yes, I take the Indomethacin, in the form of Indocid every morning and night. My GP said to try varying, reducing or stopping as I saw fit or between attacks, but the times I tried dropping it to even 25mg am and pm I immediately got a Ch. Although it wasn't more than a 3, it did send me straight back to 50mg !
There are no immediate side effects and no need for weaning off etc.
I was warned about the long term use problems, mostly stomach related and as you would understand, they just could not compare to going back to the attacks.
Besides, the side effects from the Oxycontin pretty much over shadow any other drug ........tummy problems ? Huh!

Jilly :)

Title: Re: 30yrs of CH .....it finally ended.
Post by Jillor on Mar 28^th, 2006, 11:06pm

Brian or Rich,
As I am very new to posting on a message board.....this is the 3rd post I've ever made anywhere.....could you tell where to post to find out if there is any information on whether CH's are hereditary?
During my stay with my Mum and after that attack, Mum reminded me of the horrific headaches my father had suffered all his life. I vaguely remember my Dad taking Bex powders all day for years and years, but he was in WWII and suffered other things such as malaria as a result of the war, so even when I was diagnosed, we never made any connection till Mum asked if they could've been the same thing. I have 2 sons in there early 20's and of course am curious to know.
Thanks again,
Jilly

Title: Re: 30yrs of CH .....it finally ended.
Post by AussieBrian on Mar 28^th, 2006, 11:56pm

Jilly, in the top right corner of your screen is the word 'messages'. Click on that and then on 'subject'.

Piles of smiles,

Brian.

Title: Re: 30yrs of CH .....it finally ended.
Post by LeLimey on Mar 29^th, 2006, 2:37am

Hi Jilly,
There is alot of research into whether CH is hereditary or not going on at the moment. It's looking like it definitely is and I for one know it is, my son has CH as well as me. You'll find several people here who can plot a fmaily history of it sadly.
You'll find several people too who DON'T have a history of CH in the family so my advice would be always look on the bright side!
Its nice to meet you, thanks for sharing your story. It will be nice to get to know you better
Helen