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cavegirl
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The truth is out there!!
« on: Oct 16th, 2005, 9:33am » |
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I have been reading pieces for past three hours from sufferers & supporters alike, It's now all starting to make sense - the cycles, effect on our lives, work, change of personality during cycles, the despair helplessness hopelessness etc, I feel a bit calmer now I have more knowledge and hope that in time i will be able to offer others some really good or helpful, caring advice as you all are now. I am just a supporter not a sufferer but desperately hope the more knowledge I have, a better supporter I will be. 
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LeLimey
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Re: The truth is out there!!
« Reply #1 on: Oct 16th, 2005, 10:14am » |
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back up right now!! 
there is no such thing as "just a supporter".
You are worth your weight in gold to those of us who suffer - we couldn't keep going without you holding us up.
To still be there for us day after day after the emotional torment you go through as a supporter not to mention putting up with our moods is a phenomenal act of love and don't ever underestimate how much it means, to your fella and to all of us.
Don't forget there is support here for BOTH of you okay?
love
Helen
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cavegirl
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Re: The truth is out there!!
« Reply #2 on: Oct 16th, 2005, 12:53pm » |
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thankyou, even though we've been together for a while we don't live with each other full time so he's managed to keep the full horror of CH's away from me, and when he's here he locks himself into the bathroom because he cant bear me to see him rolling around in agony, crying and headbanging on the floor or wall. it wasn't until I saw this site today and the last conversation we had before he left, that I really began to have insight as to the seriousness of it all. He said through tears that he doesn't know how much more he can take, he dreads going to sleep because they wake him up, he dreads waking up cos he knows they'll be there waiting, day after day week after week. I still feel so selfish for even saying I'm finding it hard as I'm not suffering such intense bad pain that "I want to put a gun to my head" his quote, but I guess as this is a site for supporters it's a good a place as any and people really understand - I've tried talking to colleagues. friends etc but like most sufferers will confirm when they try to tell people, they just dismiss it as a headache or at worst a migraine. His CH lasted two hours from 7.00am and left him feeling totally drained, still with a residual pain - 'like I've been hit in the head with a baseball bat' and he knows its the first of up to 7 in a day. He's beginning to give up he can't face any more, he's trying to work12 - 14 hour days in between headaches and because they don't understand he curls up in the work van until he can move again. For the first time in our relationship Ive realised that our love alone won't be anywhere near enough to get him through this - yes naive and incredibly stupid I know!! and I do know that now
The least I can do is learn as much as I can to help as much as I can which is what I intend to do, so any advice or tips are very much appreciated xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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LeLimey
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Re: The truth is out there!!
« Reply #3 on: Oct 16th, 2005, 2:02pm » |
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What meds is he on?
Has he tried high flow o2?
I don't know if either of you have discovered OUCH UK but if not it will be an invaluable resource to you. It will give you the meds (and their names!) available in England, alot of useful info including stuff at work information, gp info the works!
There is a support board where you can post without being a member but membership is only £10 a year and that will cover the pair of you so its a very good buy! The website is at
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
I know you've said his doctor is about as much use as a cloth crash helmet but there is a GP info page which you should direct him to.
http://gpinfo.ouchuk.org/
I would demand a neuro referral because there are so many fantastic options out there and if your doctor is a lemon then having a neuro back up is invaluable!
Get back to us with what meds he is on and has tried and we can help you further, none of us are doctors but we are all expert patients and can give you the benefit of our experience!
There is also a helpline at OUCH UK, its manned by volunteers who are also sufferers. Its an ansaphone so you have to ring and leave your name and number and someone will call you back when they check it every so often. The number is 0161 2721702
Oh and I've im'd you my number too.. check your instant messages at the top of the board. Call anytime, its not a problem
Regards
Helen
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cavegirl
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Re: The truth is out there!!
« Reply #4 on: Oct 16th, 2005, 2:44pm » |
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Hi,
Immigran tabs - make him feel absolutely terrible - and nasal spray which is slightly better. Went to GP last week (got tabs and spray then) Doc refused O2 or anything else until seen by Neuro but who knows how long that may take???!! He did go to A&E once and got some shots which seemed 2 work but he couldn't get anymore.
It wouldn't be so harsh on him if he felt anywhere near his 'normal self' between HA's but he doesn't - that dark fog seems to last for the whole episode with no respite until it's over.
Sleep is a major factor the more sleep he tries to get the more he seems to get them and ends up with barely any or none at all.
Thanks for the websites am a bit of a technophobe - I didn't even no IM was set up within this site, I thought I had to install it myself!!!!!
I am still a bit awed by it all and totally touched by so much kindness and support amidst such terrible pain
Many many thanks
xxxxxxxxxxxxxxxxxxx
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LeLimey
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Re: The truth is out there!!
« Reply #5 on: Oct 16th, 2005, 2:48pm » |
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Hi again!
I've just put up a long post to Matty (guessing its your other half?) on the other boards with some meds info.. between you check it out and see what you think and if you have any more questions ask.. we will do our damndest to help you get sorted asap!
In the meantime ask which neuro you've been referred to and ring his secretary, the hospital switchboard will put you through and ask for a cancellation or anything to get seen quicker, its worth a try!
As you can guess its a bit of a mission with me getting people sorted asap so they get their quality of life back
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cavegirl
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Re: The truth is out there!!
« Reply #6 on: Oct 16th, 2005, 3:10pm » |
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WOW how freaky is that!!! I didn't even know he been on just checked last post on main board by you and he was on there!!!! Did say I was a technophobe!! I don't think either of us would have the confidence to challenge the GP without the knowledge u just gave & would never have thought to get Neuro's name let alone ring his secretary, but you no what - I'll do it cos anythings worth a go to get him some relief.
Today has been a big day for us both regarding this especially for me, for lots of reasons. Will make sure he gets info.
Hopefully will have news of quick appt with Neuro soon....................
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
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LeLimey
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Re: The truth is out there!!
« Reply #7 on: Oct 16th, 2005, 3:47pm » |
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I'm going to IM you my mobile number as well since I'm in and out alot, if you need anything else then ask! I cannot wait to hear how you are both getting on now and I know just how you feel.. euphoric! Just like I did when I found this site
There is so much we can and will do to help, not least of which is providing a shoulder when you need it! 
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cavegirl
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Re: The truth is out there!!
« Reply #8 on: Oct 17th, 2005, 9:26am » |
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Dear Helen,
We just wanna say a huge thanks - I think Matt already posted - you prob know that he went back to Docs and said the stuff you suggested, and lo and behold Injections are being prescibed for him today!!!!!
Think he said the stuff about PCT and it being a Licensed drug etc. He said he is "...a happy broken Man, maybe now I can get fixed a little bit..."
Thankyou so so much
Not sure too much ref your CH's but hope they stay away and you are well (and your little one)
Best wishes
Luv from both xxxxxxxxxxxxxxxxxxxxxx
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LeLimey
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Re: The truth is out there!!
« Reply #9 on: Oct 17th, 2005, 9:33am » |
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I'm just so pleased for you both, I've just come back from dealing with my own head I'm chronic btw) and reading this, knowing that you are finally getting somewhere makes it all worthwhile.
This is only the beginning, there is alot more we can do to help BOTH of you.
This place is a lifesaver (Thanks again DJ!) and I don't know where I'd be without it
Keep us updated okay?
love
Helen
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mrs mac
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Re: The truth is out there!!
« Reply #10 on: Oct 18th, 2005, 7:50pm » |
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hey cave girl
just caught up on this thread!!!
how are things now
my name is Sandra, and i am another supporter!!!
i know just what you are going through, as i have been and still going through the same!!
my hubby Andy has been going through hell for over a week now with the beast, he is on steroids, but unfortunately they aren't really working for him!!!
i hope things have improved and keep on at the gp for O2, it really does help!!!
tc
sandra xxxxxxxxxx
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Heather75
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Re: The truth is out there!!
« Reply #11 on: Oct 18th, 2005, 9:14pm » |
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Hello Cavegirl,
I hope things will work out with the meds and some relief will be in sight for the both of you.
I too am a supporter, and it can be very difficult for even the strongest person.
Getting tons of info on CH is always good, because that way you can know what your options are. I do it all of the time!
I recently found these pages on the OUCH Canadian site. I'm sure they've been posted before, but I wish I had read them sooner.
You know you're a Cluster Headache Supporter IF....
and
Survival Tips for the Supporter
I personally wish I had read the survival tips a long time ago, as I ended up learning most of them on my own the hard way.
Here's to keeping the beast at bay!
Heather
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| « Last Edit: Oct 18th, 2005, 9:24pm by Heather75 » |
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cavegirl
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Re: The truth is out there!!
« Reply #12 on: Oct 21st, 2005, 5:25pm » |
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Hi Sandra & Heather,
We doin ok, hangin on in there, we both feel so much stronger because of this site (thank you so much guys!!!)
we're still workin on the O2 matt changed his GP who seems to be more understanding, and things look hopeful,
I love the links below, wish I'd seen them sooner too! Have you seen them Sandra? (Thanks Margi, was that you?)
Have Hope always (sometimes it helps when you least expect it and is there for next time if it doesn't)
Hang in there
cavegirl x
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mrs mac
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Re: The truth is out there!!
« Reply #13 on: Oct 21st, 2005, 6:10pm » |
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yeah cave girl, they are really good and so true!!!
i have posted them on the uk site also, so that other supporters there can benefit from them also!!!!
hope things are continuing to improve
my thoughts are with you
sandra xxxx
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Heather75
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Re: The truth is out there!!
« Reply #14 on: Oct 21st, 2005, 6:19pm » |
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Hi Cavegirl and Sandra,
Cavegirl - Have you called Helen yet? I bet it'd a world of good for you or Matty. I know Rex has found a big relief just by talking to other sufferers.
We've also recently met another couple who live nearby and it's been a great experience. Everyone raves about it, but until you actually do it, you don't know how powerful of an experience it is.
Keep us updated on how you both are doing.
Sandra - Thanks for spreading the links around!
Wishing you all the best!
Heather
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