Author |
Topic: Hello everyone! (Read 280 times) |
|
synergy2120
New Board Junior
There is a rainbow out there somewhere...... ..
Gender: 
Posts: 84
|
 |
Hello everyone!
« on: Aug 6th, 2004, 9:37am » |
 Quote  Modify
|
What a joy it is to finally meet people who are suffering the same and know what me and my partner are talking about!
My name is sarah and it is my partner marc who suffers from chronic cluster headaches. In the past 3 years he has only had 4 days where he has been completly pain free.
I watch him every day trying to live as best as he can but it is wearing us both down. We have a 6 month old daughter called Emma who has really brightened up marcs life and givin him sometihing to smile about.
Me and marc have been together for nearly 2 years now and i would love to get chatting to other people who have to live with the beast.
At the moment i am fighting to get marc Disability Living Allowance so if anyone has any information about that i would be very grateful!
Cant wait to start hearing from everybody
Luv sarah, marc and emma 
|
|
 IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender: 
Posts: 5747
|
|
Re: Hello everyone!
« Reply #1 on: Aug 6th, 2004, 9:54am » |
Quote Modify
|
Good morning Sarah, Welcome to the board. Sorry to hear about Marc but glad you and Emma are there to support him.
Most of us live in the USA but there are many over where you live.
See the buttons on the left side of your screen? Click the OUCH website button. From there you can find the OUCH UK website and people in your neighborhood to talk to. (You may also talk to us ) Some of our best sufferers are in the UK.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
synergy2120
New Board Junior
There is a rainbow out there somewhere...... ..
Gender:
Posts: 84
|
|
Re: Hello everyone!
« Reply #2 on: Aug 6th, 2004, 11:38am » |
Quote Modify
|
Thankyou 
I dont know how often i will be able to get online to chat to people here as my daughter emma wants my constant attention and if im not playing with her in usually holding marcs hand through an attack, but i will come and talk to people as often as i can.
Thanx again for a great website!!
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
Gender:
Posts: 14968
|
|
Re: Hello everyone!
« Reply #3 on: Aug 6th, 2004, 4:00pm » |
Quote Modify
|
Welcome to the fold and I know what you mean. Talking to someone that understands the level of pain is so much easier. I'm glad Marc has such good support.
Here is a technique that worked weill for me and others:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
Through the following link you will find a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain that these attacks have nothing to do with what others think of when they hear the word “headache.” It’s worth copying:
uk.org/ch/note_colleagues.cfm
All my best,
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: Hello everyone!
« Reply #4 on: Aug 6th, 2004, 11:51pm » |
Quote Modify
|
Hey there,
I am episodic with a 25 year history. My wife is the best thing in my life she supports and helps me , it is so important that you are there for him. Its not easy but Im sure you can handle it . I ll say a prayer for you all
Love the bbz
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
IndianaJohn
New Board Hall of Famer
Into the jaws of the Beast we ride!
Gender:
Posts: 643
|
|
Re: Hello everyone!
« Reply #5 on: Aug 7th, 2004, 12:16am » |
Quote Modify
|
Hi Sarah and welcome,
I'm so sorry to hear about marc. I have been episodic for twelve years now. It took two years to get a proper diagnosis. You're support and compassion is very commendable and very important. If you can, get him to a doc who specializes in headaches, and don't stop 'till you find one. Over here, as I imagine it is where you live, CH is very often misunderstood by the medical establishment.
Is he on any meds? Oxygen helps alot of us also. Check out the links to the left for some very usefull information.
I know that without my wife and children that I probably wouldn't be here today. They keep me going as I'm sure that you and little emma do for marc.
Best wishes and God bless!
|
|
IP Logged |
Did my brains fall out or is this headache over?
|
|
|
synergy2120
New Board Junior
There is a rainbow out there somewhere...... ..
Gender:
Posts: 84
|
|
Re: Hello everyone!
« Reply #6 on: Aug 7th, 2004, 4:30am » |
Quote Modify
|
Thankyou everyone!
It's only too true about the doctors over here - i should get paid their salary as i know more about cluster headaches then they do!!
It has taken us three years to get the right diagnosis - for ages they were just trying marc on migrane tablets. Marc used to get migranes as a child and he still gets the odd one now (he just laughs them off now!).
The only meds he takes are verapamil and dothepin (i know they are probably called other things in america) the dothepin is for the depression, marc doesnt see the point in taking them - get rid of the beast and get rid of the depression.
There are only three specialists in Englands that deal with CH and we have just been referred to the top bloke in London who will hopefully be a lot more understanding then some of the idiots we have seen.
I know what you mean about people getting the wrong idea because they are called "headaches". I think they should change the name as it is misleading. its not a head "ache", its an excrutiating pain that runs down the side of the face as if someone is slicing your face open with a screwdriver - doesnt sould much like a headache!
When ive tried explaining to people what marc suffers from they make me feel as if we are making it up, marc and me have both lost friends through this but the friends that have stuck by us our true friends - and now we're going to make a lot more through clusterheadaches.com!
Marc will try and posts some message himself but the glare from the computer doesnt really help, so i tend to do it all for him!!
|
| « Last Edit: Aug 7th, 2004, 4:32am by synergy2120 » |
IP Logged |
|
|
|
Ronny
CH.com Alumnus
New Board Hall of Famer
Yabba Dabba Doo
Gender:
Posts: 914
|
|
Re: Hello everyone!
« Reply #7 on: Aug 7th, 2004, 6:09am » |
Quote Modify
|
Hey
It's really great you support marc in the way you do, we are often misunderstood.
People think we exaggerate, so now i dont speak to anyone about CH no more.
My wife has been a great support for me too so i know what you mean to marc, even if he doesnt show it to you (i know i'm not always as gratefull as i should be (one of the beastie things i guess));
AnyWay, glad you have found this site, there is a lot to read and learn over here and a lot of nice people who will listen and help day and night.
Ronny.
|
|
IP Logged |
Count your rainbows, not your thunderstorms.
|
|
|
synergy2120
New Board Junior
There is a rainbow out there somewhere...... ..
Gender:
Posts: 84
|
|
Re: Hello everyone!
« Reply #8 on: Aug 7th, 2004, 6:55am » |
Quote Modify
|
Thats the great thing about marc - his the nicest bloke i have ever met! He tells me he loves me about 10 times a day. After he has been hit by a big attack we give each other a hugh hug and most of the time he buries hs head in my shoulder and sobs so i always let him know how much he means to me.
There have been a few times where i have broken down in front of him because of seeing him in so much pain ( i try to stay strong for him and not let him see my tears) and marc begs me and emma to leave because he cant stand to see this hurting me but of course i refuse to go!!!!
Marc sometimes thinks im with him out of pity but i always tell him im here because i love him and want to be here to help him.
LOVE IS MUCH STRONGER THAN THE BEAST
love sarah. 
|
|
IP Logged |
|
|
|
Ronny
CH.com Alumnus
New Board Hall of Famer
Yabba Dabba Doo
Gender:
Posts: 914
|
|
Re: Hello everyone!
« Reply #9 on: Aug 7th, 2004, 8:05am » |
Quote Modify
|
on Aug 7th, 2004, 6:55am, synergy2120 wrote:Marc sometimes thinks im with him out of pity but i always tell him im here because i love him and want to be here to help him.
LOVE IS MUCH STRONGER THAN THE BEAST
|
|
You're so right, love is much stronger, and out of pity it would only last a few months!
Ronny.
|
|
IP Logged |
Count your rainbows, not your thunderstorms.
|
|
|
pubgirl
Guest
|
Sorry Sarah, need to undo a bit of misinformation again. Don't be cross with me!
I'm sorry Marc has had such a bad time getting help, but you are in a great position now that Marc will be seeing Prof Goadsby himself, they don't get much better than him, but there are many, many more than 3 specialists that deal with CH in the UK, there are hundreds of good neuros who treat our condition very well (as well as loads that don't of course!). Also now many of the hundreds and thousands of GP's are getting much more clued up than they used to be thanks to a very persistent information campaign by Prof Goadsby and his team and OUCH UK. This means that clued up GPs can prescribe every single treatment we need on the NHS for the standard prescription charge. The only thing they can't do is arrange for surgery, as only Queen's Square are doing this at present for CH sufferers.
Wendy
P.S. If you message Mike on the OUCH members board, he knows all about how to get DLA and all the tricks needed.
|
|
IP Logged |
|
|
|
synergy2120
New Board Junior
There is a rainbow out there somewhere...... ..
Gender:
Posts: 84
|
|
Re: Hello everyone!
« Reply #11 on: Aug 8th, 2004, 4:02pm » |
Quote Modify
|
Thankyou Wendy!
Have you ever heard of Dr Zach at The Barts hospital in london? We saw her 2 weeks ago and it was her that told me that were only 3 specialists in the country! Maybe she is mistaken - its a good thing the GP's etc are getting clued up on the condition as you can propably tell we have the run-around and had to do a lot of fighting to get to Dr Goadsby.
My mum got a lot of info about DLA from OUCH.uk for me before i got back online a couple of days ago. Ive tried once but they turned it down, so this time i have the help of the Citizens Advice Bereau and all the info from OUCH and this site.
Ive also been keeping a diary of everything that marc goes through and everything i have to do to help him (i have had to exaggerate on a few things). Hopefully they will actually help us time.
When i rang up to appeal the lady on the phone told me "it doesnt matter how much pain someone is in - it does not class them as disabled" I really disagree with this as any pain - espicially CH pain - is disabling in my eyes.
luv sarah xx
|
|
IP Logged |
|
|
|
pubgirl
Guest
|
Apparently there are quite a few tricks you need to use to get DLA (not lies, just using the right words) but Mike can help with this. I wouldn't think that the CAB would be much use with this.
Don't know Dr Zach, but I suppose it depends what she means by specialists. There are many excellent neuro's who specialise in Headache conditions who are extremely clued up about CH, but they may not be listed as CH specialists.
Long way to go on the education front still though as it should be that ALL neuro's AND Gp's know how to treat CH correctly. I can dream!
Wendy
|
|
IP Logged |
|
|
|
LeeS
CH.com Alumnus
New Board Hall of Famer
I love C12 H16 N2O!
Gender:
Posts: 588
|
|
Re: Hello everyone!
« Reply #13 on: Aug 9th, 2004, 9:49am » |
Quote Modify
|
Quote:| This means that clued up GPs can prescribe every single treatment we need on the NHS for the standard prescription charge |
|
Not quite 'every single treatment' yet Wend
-Lee
|
|
IP Logged |
|
|
|
pubgirl
Guest
|
V funny Lee 
Every one you can get in Boots then!
Now piss off you troublemaking piece of badgerwank!
Wendy
|
| « Last Edit: Aug 9th, 2004, 1:42pm by pubgirl » |
IP Logged |
|
|
|
LeeS
CH.com Alumnus
New Board Hall of Famer
I love C12 H16 N2O!
Gender:
Posts: 588
|
|
Re: Hello everyone!
« Reply #15 on: Aug 10th, 2004, 4:19am » |
Quote Modify
|
Quote:| Now piss off you troublemaking piece of badgerwank! |
|
|
|
IP Logged |
|
|
|
Fatcat
New Board Newbie
Gender:
Posts: 34
|
|
Re: Hello everyone!
« Reply #16 on: Aug 10th, 2004, 8:43am » |
Quote Modify
|
Badgerwank  You guys clearly get too friendly with your local wildlife!
Hi Sarah, Marc and Emma. Welcome to the site. There are quite a few Brits on here these days, so keep posting. Best wishes to Marc.
Fatcat
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss