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        Cluster Headache Help and Support >> Cluster Headache Specific >> 6 DAYS WITH CH
        
(Message started by: patch on Feb 9^th, 2008, 6:37pm)

Title: 6 DAYS WITH CH
Post by patch on Feb 9^th, 2008, 6:37pm

Hi everyone,
Sorry about this rant but i need to vent.

I had my first cluster headache attack on Monday.
I'm getting fed up as I'm still waking up with pain in my left eye with a headache, okay it's very mild compared to pain when through early this week.

Its my Son's Birthday today and I feel like letting the whole family down as I'm not up too much, and I missed my Daughter 16th Birthday in hospital.

Plus it making me very bad tempered which isnt like me at all.
Does anyone get bad tempered with CH?

Plus what is with people and friends and family thinking you got a bad migraine, and I feel belittled as they think
your moaning about headache,

Does any one have any tips how explain CH to people with
making think its a migraine?

better stop whinging or you will ban me from this site.
patch
:'(

Title: Re: 6 DAYS WITH CH
Post by AussieBrian on Feb 9^th, 2008, 6:47pm

Whinge, whine and wimper to your little hearts content, sweetheart. It's what we're here for and, yes, we all get a little down sometimes.

Have a look at the 'Getting to know you' board and right up the top is a thread called Letter to Employers and Colleagues. It might be a bit of a help to you.

Keep smiling regardless because I'm about to scratch your name into a tinnie and drink to your damned fine health whether you like it or not.

So there.

Title: Re: 6 DAYS WITH CH
Post by brewcrew on Feb 9^th, 2008, 6:49pm

Sounds to me like you need:

A diagnosis
A preventative regimen
Some abortive tools at the ready

...in that order.

Do you have a neurologist who specializes in headache treatment? If not, you need to get to one a.s.a.p. Otherwise it's just going to be more of the same.

No wonder you're cranky. I'd be too.

Title: Re: 6 DAYS WITH CH
Post by Guiseppi on Feb 9^th, 2008, 6:52pm

Give up on explaining the pain to people, those that don't get it, don't get it! ;)

I get bad tempered when I'm getting hit, it's natural, it hurts like hell! Just don't cycle into a pity party or we'll line up to kick your butt for you! When anyone loses to the beast, we all lose. Go ahead vent, piss, moan and whine, because in this place, we all undertsand. Then take a deep breath and get ready to kick the beasts ass again. We will all be here for you! ;)

Love and vibes your way, sounds like you need them.

Guiseppi

edited for spelling...dang I miss spell check! ;;D

Title: Re: 6 DAYS WITH CH
Post by Linda_Howell on Feb 9^th, 2008, 7:05pm

Patch,

Print this out and hand it to the people in your life that you care about...screw the rest of them. Having something like this in writing that they can see, is sometimes more believable than you standing there trying to explain it.
Might want to not print the part about mushrooms. That isn't relevant to what you want to accomplish here with them.

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

Linda

Title: Re: 6 DAYS WITH CH
Post by patch on Feb 9^th, 2008, 7:09pm

Thanks Guys,
I'm not going to let CH beat me, hubby is still going to get the BBQ going today.
I'm have damn good try at celebrating the week my Jam eaters(kids) turn 13 and 16 years old.

Might have forgot about having a tinnie or two, but hey Brian got one with my name on :)

My neurologist is working with GP is hopefully on Monday I can get some 02 sorted and a preventative regimen started and I'll feel better.

thanks for the support, I feel better already
Patch

:)

Title: Re: 6 DAYS WITH CH
Post by chewy on Feb 9^th, 2008, 7:23pm

Whip out an imitrex shot and inject right in front of them. That ussually gets their attention and shifts their opinion of your "headache".

Title: Re: 6 DAYS WITH CH
Post by otakuhouse on Feb 9^th, 2008, 7:39pm

Hi patch,

The first serious bout was the hardest for me because of not knowing.

I find the hardest thing about this condition is not merely the pain but how it affects your personal relationships. I always fall into a guilt ridden seclusion and anger at the universe. I know for an absolute fact that my girlfriend is going through just as much emotionally as I am. The only difference for her is the lack of pain.

I have a great neurologist right now who lectured me on the necessity of me expressing honestly and directly to my loved ones the severity of this condition. I guess in normal life I'm the kind of person who doesn't like to burden others and will complain very little and tries to make bad situations sound better than they are. I can't do that with these. I have to state as directly as possible that this is hard.

My new metaphor is that during a cycle I am abducted several times a day at random and tortured by the worst, most expert black ops torturers in the world and then completely bewilderingly dropped right back into normal life.

You know, the earliest experiments into torture conducted by governments weren't even that mean.

Or you could mention how the pain is worse than childbirth and you are currently going through it several times a day.

Many of us have stories along the lines of: me breaking my arm playing hockey and only going to the doctor a week later after my work said i should check out why arm wasn't functioning like normal. To me the broken arm didn't feel that bad comparatively.

I am convinced we need a new name for the condition that expresses its severity without the loaded connotations of "suicide headaches".

A hard thing for my loved ones is the rollercoaster of emotions... Relief is so instant that I am often post headache exhilarated and full of a desperate joie de vivre. I feel like I gotta enjoy things before the next one comes in.

But eventuallly the lack of sleep and pain catches up and last week I was on the knife's edge of a nervous breakdown.

Today I'm headache free for 24 hrs and finally slept last night.

I have come to believe however that people who refuse (or as a coworker once accused me of making up the condition) to attempt to understand are revealing their true nature. That coworker I mentioned I'd classify as one of the worst types of people there are. Someone here always says, hearing is one thing, understanding is another.

Your loved ones will understand if you share with them no matter how difficult it is.

Come here for support, do your homework, save up your willpower, and know that it will be hard. But it will not kill you, and there will be relief, and on the other side will be the life you love. Don't let go of that.

Title: Re: 6 DAYS WITH CH
Post by Annette on Feb 10^th, 2008, 12:13am

Welcome Patch, sorry you have CH but I am glad your GP is working with your neuro to get you oxygen. Have you tried imigran ? the injection is very expensive here but the nasal spray works fairly quickly too.

I am a supporter for my husband who has CH and we live in Sydney. If you need anything or even just an ear or a shoulder, PM me or drop me an email, anytime.

I have given up explaining CH to people who have no idea. I have a DVD with a couple of clips of my husband taking a kip 10 and play it to people on the portable DVD player these days. They all get the shock of their lives and shut up quite quickly watching just a couple of minutes of that.

Title: Re: 6 DAYS WITH CH
Post by DennisM1045 on Feb 10^th, 2008, 9:00am

Hi Patch,

I'm so sorry the beast is beating you down like this. Others have given you some great advice and perspective. I'm going to add my 2 cents ;)

I'm a father of 10 and can relate. You just aren't yourself when your in cycle. By being very honest with my family and my co-workers I've found understanding from those that are capable of it. The rest just need to be tuned out.

My wife Andrea and the kids are so sensitized to my headaches that they seem to know when one is coming before I do. It hurts them to see me suffer but they don't fear them any more.

Knowing they understand doesn't stop the guilt of changing the rythm of things and it doesn't stop me from becoming grumpy. But knowing they understand the source is the pain and that it's not really me helps ignore me :D

Work with your Doctors to get your weapons in order. Those that love you will be there to support you. You will find a way to work through this together.

Wishing you many PFDAN soon...

-Dennis-

Title: Re: 6 DAYS WITH CH
Post by sandie99 on Feb 10^th, 2008, 12:55pm

Patch,

I sure am cranky when ch is around. Shadows and milder hits make me very irritated indeed! Otherwise I'm "nmot-kill-a-fly" - type, but then I'd hit anyone who is bothering me - or drank my last red bull (heh heh), no question about it. ;)

I hope that your gp and neuro will find you a great combo to fight against ch.

Wishing you PF days,
Sanna

Title: Re: 6 DAYS WITH CH
Post by outofcommission on Feb 11^th, 2008, 12:25am

pretty much agree with all these replies. make sure you have ch. alot ch treatments are useless for other conditions and vice versa. some cures for other HAs will set a CH on fire. no one but of us can understand a ch. i don't ever bother trying to explain it to people. anything you try give it a few days before you make a judgment. keep o2 by your bed along with your other arsenal so you can grab it fast. if your not getting sleep, jump on the board and feed your brain. we,re here 24/7. ch will strain your sanity but trust me you will get stronger. a little crazier but stronger.

Title: Re: 6 DAYS WITH CH
Post by patch on Feb 12^th, 2008, 1:12am

:) :) :) :) :) :)
Thank you everyone for your kind words and support, the beast has gone apart from slight headache when I wake up.
My head is clear, it such a amazing high, I want it yell "ITS GONE"over and over again from the mountain tops.

I could not got through the last few days with out all of help, thanks ever so much your all stars.

A whole new world has opened up to me, I had not even heard of CH before last week, the roller coaster of emotions you go through with CH are enough to last life time.

I've been to the Doctors and have my o2 sorted out and ready for next time it rears it ugly ulgy head.
then i have follow up with neuro in month time.

I'm going to make up for lost time now and celebrate my kids birthday which missed out on last week.

I have started to read information on CH and can take it all in much better now head is clear.

thanks again
Patch

:D

Title: Re: 6 DAYS WITH CH
Post by Guiseppi on Feb 12^th, 2008, 10:14am

You now grasp the most important point in CH, live your life between the hits! Hoping the remission lasts an eternity!

Guiseppi

Title: Re: 6 DAYS WITH CH
Post by BarbaraD on Feb 12^th, 2008, 11:31am

on 02/09/08 at 18:37:10, patch wrote:

Does anyone get bad tempered with CH?

patch
:'(

Of course NOT -- we're all just the most even tempered people you'll ever want to meet ;;D ;;D ;;D

Sorry kid - you're not alone in this one -- get in line... OF COURSE we get bad tempered with CH? But HERE we understand so go ahead a vent all you want. Remember we love you even with a bad temper....

Hugs BD