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Am starting to understand..


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My daughter is 10, and doesn't live with me. BUT, she is down visiting this week, and I'm starting to understand the impact these blasted clusters can have on family life.

Because my daughter lives so far away, she doesn't get to spend much time with me and my son (who is 23 and doesn't live with me). So we have been taking advantage of her being down for a whole week and spending a lot of time together, which is fantastic! Apart from the times when I need to go and lie down for a half-hour. :(

Also there is the generally grouchiness (to put it nicely) that tends to encompass attacks and on their own can ruin one's day.

This morning for example, my daughter and I were laying in my bed, all snuggled up like parent and child often do, talking about out day. The plan was to start with making pancakes. I have a great recipe and we love cooking together, and then go to a Panto this afternoon. She gets up for a couple minutes, and by the time she returns, my head is thumping away.

Not a horrific, grasp-head and scream sort of attack, but still enough of a one to put me off doing anything but staying in bed for a bit. She pressed her cold hands onto my forehead, which was surprisingly refreshing, and we lay there together for awhile. I eventually get up to make coffee, which is also helping a lot.

But this is pretty much how the week has gone. It sucks for my kids, big time. I can't imagine what it must be like for those of you in relationships and with kids, and with the full-on head banging clusters.

I'm now entering my worse season of the year, Jan and Feb. I so need to bust!

My heart goes out to everyone on this board this holiday season, and especially to the supporters and loved ones. Hang in there. It's only life.

MG

P.S. Pancake time! (although my head would prefer I crawled back into bed)

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Thank you.

Mine aren't usually THAT bad. Has been a few years since I've had to pace around the room with them. A bad one will have me rolling and tossing in bed, but it takes too much thought power to actually walk without effort.

For me, a long attack is 30-45 minutes. Most are probably 5-15 minutes, although can often have a bad headache before or after as well.

I try to control my breathing during an attack as well as focus my thoughts. The two hemispheres of my brain tend to have their own independent thought processes, and I'm often aware of both strains of thoughts at the same time. This allows me, if it's not a BAD attack, to retreat into my other 'mind' and escape a certain amount of pain. But takes a lot of concentration, and walking around during an attack is a distraction. So I've learned to curl up on the bed and retreat into myself, as it were.

MG

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I am so sorry this is happening to you, happening to us.

My son was 7 when chronic clusters started for me.

Anything over a kip 7 and my son said " daddy please don't die". He really thought I was dying because I was screaming on the floor, ramming my head into drywall or ripping the head board off shaking it uncontrollably. Forming a thought is not possible. Id have to wait until the attack was done.

My ex wife said to me on numerous occasions"I can't deal with this sh*t and slam the bedroom door and leave. Man am I happy we split....She was not biological mother of my son and since my boy was age 2 I have had 50% custody since day one and most years had him more but whos counting. Today my son is 15 and just as much as an advocate as I am.My attacks don't even fase him , if the words uh oh come out he jumps up and says dad what do ya need? no questions asked. My new wife is incredible and is so amazing. Countless nights woken her and my son up to go to school and work and no one ever complains.

Best advice....educate everyone...

Hang in there...there is n magic potion or commonality for us. We all have our own version of attacks,mild or bad.

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Finding a way to live and appreciate our families in spite of our condition is the best way to win this fight.  Good for you fighting back and making those pancakes.  That being said, I am an episodic, and I can never fully empathize with a chronic.  I have found that for me, I tend to feel a lot more guilt about my inability to always be there for my wife during a cluster period than is warranted.  My wife is extremely understanding and fine with postponing things, but I still feel riddled with guilt.  That being said, I do not have children yet....though that's something on the horizon.  I do fear whether I can be the kind of father I want to be when cluster season comes around.

I am most thankful going into this new year for this board and particularly the help and support from people like Bobb and Tuckerman who helped give me a life back (currently 2+ weeks PF during my worst time of the year).

PFWDAN/365 in the coming year for all of you.

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CHS - so glad you are in a happy relationship now, and your son sounds AWESOME!

I made a rule 7 years ago when all this Hell started, that I would never lie to anyone about my headaches. I get so many, and have had to cancel on so many events at the last moment, I didn't want anyone to ever think I didn't want to go, so said I had a headache as an excuse to get out of it. Everyone who knows me, knows that when I say I have a headache, I'm serious. And generally, it is something of the level or intensity they can barely conceive of.

I've found that approach to help me, and those around me, a lot.

Happy New Year to everyone, and Pain Free wishes all around.

xx MG

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The grief we impose on our support system, and ourselves at times, can get out of control.  As understanding as my wife and friends are, the inconvenience of CH puts a strain on all of our lives.  We become weary of the battle and the frustration gets the best of us occasionally.

I still hide the attack symptoms when a good time is being enjoyed, trying to minimize the "downer-effect" that can occur.  The overwhelming attitude that CH will NOT control my life, often causes the pain to be ingnored until it gets really rough.  Yup, the grouchiness sets in and the abortives are lined-up.

I'd have to agree, raising kids would be a difficult parameter to incorporate into the pain/treatment/busting process.  Kids have a great awareness for sympathy and understanding, although comprehending the entire situation is impossible.  Even though I don't have kids either, the younger generation (pre and early teens) is most compassionate and understanding.  Just give 'em the chance.

MG .... Best of Luck with the busting!!!

CHS .... Oh yeah, there is a magic potion out there somewhere!!

iPain .... Congrats on the PF time.  I'm on a month now!!  YAYE! [smiley=happy.gif]

PF New Year to all ....

weatherman

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CHS - so glad you are in a happy relationship now, and your son sounds AWESOME!

I made a rule 7 years ago when all this Hell started, that I would never lie to anyone about my headaches. I get so many, and have had to cancel on so many events at the last moment, I didn't want anyone to ever think I didn't want to go, so said I had a headache as an excuse to get out of it. Everyone who knows me, knows that when I say I have a headache, I'm serious. And generally, it is something of the level or intensity they can barely conceive of.

I've found that approach to help me, and those around me, a lot.

Happy New Year to everyone, and Pain Free wishes all around.

xx MG

I was married to my 2nd wife when I got sick...and like I wrote above,we know how that ended.

During my single days/dating I would either flat out tell the girl or hide it. Once Id have an attack I was F8cked. I had to tell. Then others I would spill my beans and the girl would say....sorry can't deal with this. It was a very cruel and dishaeartening time in my life.

Then...I met my wife. First date I said...I have something to tell you...and so did she...I said Im sick with CH. She said I am bi polar and in recovery(almost 5 years clean). I hugged her and said finally...Honesty. She was floored I didnt jump on my Harley and ride away as I was. She asked why. I said I hate/loathe drugs and you had a problem,recognised it and did something about it. Respect. As for the Bi Polar. Her nick name to me is "Polar Bear". Because we all have issues.

She accepted my chronic headaches watched me have 4 brain surgeries and never ran away. And I support her recovery (now 8.5 years clean).

It was not an easy road. Many many nights I got a blank look telling women I was sick. They either didnt understand the disease, didnt want to be held liable for whatever or scared off. Or for whatever reason. IM glad they told me upfront no thanks. I lost 99.9% of my friends too.

I am soooo grateful for my wife and son. I would have cashed out along time ago if it wasnt for them

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Hey Moxie, I'm so glad you get to be with your children. That's very cool.  I know what you mean when the head will not cooperate... yeah, but don't let it beat you, and as you say yourself

Hang in there. It's only life. 

and yes, the best is to be true, and the true people will see beyond the ugly CH mask

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Moxie,

Sorry you're getting hit, but glad you're getting some quality time with your daughter. 

CHS,  (Hijack alert).  ;) sorry Moxie.  :-*

I have a similar story to yours.  I think it might be more common than many realize.  1st wife pretended to understand.  I'm sure she understood what she could, but just wasn't capable of grasping the reality of CH and sometimes went out of her way to make me "pay" for this thing I have.  Dated for a while and had the same experience as yours.  I went back and forth from delaying telling or just telling right out of the gate.  I had a few mild successes, but mostly crash and burn failures at someone understanding (glad to know early!) Nothing as good till the woman I'm seeing now.  Of all things she's a nurse and while she hasn't seen a cycle (I pray never does).  She's sat with me for one fungus dose, and we both went through it with flying colors... Literally.. ha ha ha....  GLAD your other half is so supporting of you and you of her!!

Jeff

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