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#1 Fri, 09/01/2015 - 11:06
Chaz
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Joined: 01/01/2015 - 14:02

Hello!

Hi all!

I'll probably bore you all rigid, but I'd just like to introduce myself!

My name is Neil and I have just joined, I am 46 years old and Happily Married with two children. I have suffered with CH for ten years now but have only recently been diagnosed for several reasons (Don't get me started on that one!). A present no less, handed down from My Dad who's had it for some thirty-odd years now, on and off.

Whilst I am by no means an "expert" on CH, I have had to learn quickly about my condition as nearly everyone who suffers with it has. Sadly, because of the general "ignorance" from most people including some healthcare professionals regarding CH, it has become a mission to get as much info as possible in an attempt to get firstly recognised and then  treated with medication that can actually relieve the terrible pain. Quite often we are the ones telling our GP's what's wrong and what's going to help us!

 

My bouts tend to be for 6-8 weeks twice a year, around October and May. I get two attacks a day on average which last about 40 mins to an hour.The bout in October usually coincides with returning home from flying abroad on our family holidays (I feel this is a significant factor in triggering my bouts) - I wonder how many others have noted this?. This current bout however, is late, as we didn't go away in summer 2014 - Instead it came on just in time to ruin Xmas with my family and friends......Bah-humbug!

 

I have read some of the stories from other sufferers and I have quickly realised that, although my "attacks" are getting more frequent and more painful, there are many of you who are far worse-off than me and my heart truly goes out to you all. It gives me comfort knowing that there are others who understand what I'm experiencing. People I can talk to if I need to.

It seems strange, but I have always felt that I needed  to protect my family from this condition by disguising my actions (something I have become quite good at) and avoiding them when an attack is imminent. I saw the way it reduced my Dad to a whimpering wreck whilst my Mum watched helpless many years ago when the condition wasn't very well understood.  When I was growing up, my Dad was told there was no cure or treatment other than to have the trigeminal nerve surgically "severed" which may or may not relieve his symptoms. Thankfully he didn't opt for that, and is now in a remission period following the correct diagnosis, treatment and care from the Brilliant team at the Walton Neurological Centre in Liverpool.

I'm not sure if any of you feel like this, but I don't always tell my wife when I've had a "visit" from the beast. I have managed to maintain the illusion that it is easily manageable and not that serious for some years. Quite often "disappearing" until the pain is tolerable.  I suppose I didn't want her to feel helpless like my Mum did with my Dad. However, it is becoming impossible now as the attacks are getting stronger and occurring at times when it's hard to play down. Even close friends and family have recently been exposed to the effects it has had on me, and whilst they are cautiously sympathetic, I can tell they are not sure what to make of it all. The trouble is, I find it hard explaining to others what CH is because you can see the "Surely it's not that bad" look in their eyes which is frustrating! It can be hard to explain the pain without sounding "sensational" or sounding like you're trying to frighten people.

 

Anyway, that's enough of my problems! It feels good to know there are people out there in a similar position to myself and I look forward to reading more of your stories and maybe having a chat if anyone feels like it!

 

Look after yourselves and hopefully one day soon we can get the breakthrough that consigns this horrible condition to the history books!

Boom-shanka!

Neil.

Fri, 09/01/2015 - 12:59
Phil
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Last seen: 2 weeks 18 hours ago
Joined: 26/02/2014 - 17:02

Hi and welcome.
Lots to comment on & reply to, here's a couple from me.

"...It can be hard to explain the pain without sounding "sensational"..."

-Tell them. At worst you can save a couple of quid not buying them a Christmas card next year.

"...or sounding like you're trying to frighten people..."

-I like frightening people.

Fri, 09/01/2015 - 14:08
Dorothy Trustee
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Joined: 19/02/2014 - 10:16

Hi Neil!

Glad to see you posting!  Don't forget to join in and get to know everybody in our private discussion group on facebook.  You found your CH family and can vent to your heart's content to people who totally understand and share your experiences.

Dorothy

Dorothy (Trustee)

Fri, 09/01/2015 - 18:48 (Reply to #3)
Chaz
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Last seen: 1 year 1 month ago
Joined: 01/01/2015 - 14:02

Thanks Phil,

I never thought of the cost saving benefits! - nice one. 

 

Neil.

Fri, 09/01/2015 - 18:56 (Reply to #4)
Chaz
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Last seen: 1 year 1 month ago
Joined: 01/01/2015 - 14:02

Thanks Dorothy,

Yet again you are a star - as ever!

I've joined the FB group. I will see if I can get chatting with a few of "The family" over the weekend. First i've got to navigate an eight hour night shift after 3 bouts / 3 hours sleep since 6am and my nightly "Wakey-wakey" visit from the evil one due around 10.30-11pm! 

:?

Wish me luck!

Neil

Fri, 09/01/2015 - 18:57 (Reply to #5)
Chaz
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Joined: 01/01/2015 - 14:02

p.s. - dunno what happened with the script on that last smiley??

Sat, 10/01/2015 - 00:02
Dorothy Trustee
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Dorothy (Trustee)

Sat, 10/01/2015 - 11:34
Phil
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Joined: 26/02/2014 - 17:02

Dorothy.
Your post has been removed as it wasn't within
our strict posting guidelines.

Please refrain from telling Phil about the private chat
on FB: We can't let the riff raff in.

Sat, 10/01/2015 - 16:58
Dorothy Trustee
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Hahaha! I did a smiley from my phone and wished Neil good luck for last night...

Dorothy (Trustee)

Sat, 10/01/2015 - 21:02
Phil
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Joined: 26/02/2014 - 17:02

I did wince when I posted that. Wink

Neil. I think we've all been there. I said to a colleague just this week:
Just one of these headaches would leave 'normal' people out of action for at least a day, we have four or five attacks, less hours sleep, then carry on as if nothing happened.

Sun, 11/01/2015 - 08:20
Dorothy Trustee
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Joined: 19/02/2014 - 10:16

That's true Phil but my colleagues weren't the types I could say that to. I've said this before on here so forgive me if you've heard it before. I had an attack at work and had no meds with me.  I was in a plight but was being asked to type "just this one urgent letter" before you go home.  I vented my rage that day as I'd been struggling in to work for weeks after no sleep etc and with no appreciation from them of how hard that was. I'd gone back to work before I should have following a broken wrist, I was in pain waiting to go in for a hip op and that day was the last straw. I walked out and never went back. I ended up retiring early.  What a relief that was.  I'd had years of people - even the ones I got on really well with, pursing their lips or turning their head away when I tried to explain what it was like. The worst of it was, I was a GP's secretary!  

 

Dorothy (Trustee)

Mon, 12/01/2015 - 19:07
Phil
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Last seen: 2 weeks 18 hours ago
Joined: 26/02/2014 - 17:02

There are no words for how wrong that situation was.
Nice people get walked over and taken for granted anyway:
I don't think I'll ever be accused of being nice.

Mon, 12/01/2015 - 19:48
Dorothy Trustee
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Joined: 19/02/2014 - 10:16

I was a little fiend that day! It was a good exit but as you say, wrong

Dorothy (Trustee)

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