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Back after 3 years. (Read 7096 times)
JustNotRight
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Re: Back after 3 years.
Reply #50 - Oct 4th, 2009 at 8:16am
 
Marc123 wrote on Oct 3rd, 2009 at 11:32pm:
First off, thanks to all of the folks who had the kind and understanding words.   Smiley

Secondly, I have no obligation as to explain why I have or have not posted, or what I 've been doing for these three years, but here it is in a nutshell.....

My wife and I had our first chld, so with the sleepless nights of raising a child who continually gets ear infections (even with tubes in his ears) that soaks up about 2 years of time.  Also I have a genetic defect with my heart that I have to deal with on a daily basis. 

So needless to say, when the end of the long day comes, I would rather sit with my loving wife and child on the couch then be in front of a computer typing away.  And if some people don't like that, well that's just too bad, because for all the crap my family has to go through with my medical problems, I'm going to give them as much of my time as possible when I'm feeling good.

~Peace out

Marc Welcome Back!!!

I am sorry the beast is beating on you again and I'm even sorrier that your welcome back became such testy experience.  That should not have happened no matter if you had been gone for 3 years or not!

Kudo's to you for all you have to deal with and the way you still put family first, I truly commend that!

Hope to speak to you again soon and don't let some of the more loose tongued people here get to you, we all suffer from the beast and handle it different!

Pain Free Days and Nights to you!
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BarbaraD
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Re: Back after 3 years.
Reply #51 - Oct 4th, 2009 at 10:32am
 
Welcome back and give the little one a hug for me. Congrats and all that....

As to your question about passing on CH... so far nothing has shown that it's heriterity (sp). There are a couple of families here that have it, but they're few and far between. My family has a history of migraines (as do some others) but even that isn't conclusive to CH.

Have you got O2. In the past few years there's been a lot of "improvements" made in that area. High flow rates (15-25 liters per minute) with a Non-Rebreater mask (or the Opt2tic mask from the Ch.com store on the left - the BEST) have proven to work better than anything to abort (for over 70% of us).

I take Melatonin (12-15mg) at night before bed to stop night-time hits (and it works REALLY well for me and a lot of others - not everyone, but a lot).

Anyhow, talk to your doc about the O2 (with your heart you have to be careful with aborts and the O2 is safe).

Welcome back.

Hugs BD Kiss
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Weatherman
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Re: Back after 3 years.
Reply #52 - Oct 4th, 2009 at 6:37pm
 
I sure hope Lawrence comes back! I hate that it ended up sounding like we were ganging up on him. Lawrence, I sure didn't mean for that to happen...sorry. I just thought what you originally said was a little harsh, that's it. Subject over. Let's move on! Then all this...sheesh.
It's all good. Come back!   Smiley
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Marc123
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Re: Back after 3 years.
Reply #53 - Oct 4th, 2009 at 9:46pm
 
And I as well hope that Lawrence comes back.  I don't hold any grudges against him or anyone else that has the same feelings.  He was very passionate about his opinion and stood by it.  That's the nice thing about living in a free country, you can voice your opinion and others can voice theirs.   Wink

This site serves a purpose for all that come here.  Even for those of us that just stop by once in a blue moon.
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grace
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Re: Back after 3 years.
Reply #54 - Oct 7th, 2009 at 8:22am
 
MARC123...altho I am new to this forum and a CH sufferer for only 1 1/2 years (chronic), I have done alot of research on clusters.  I have read about circadian rhythms and circadian clocks, hormone related, stress related, trauma related, but nowhere have I read that they are hereditary. (unless I've missed something in my research)  I for one have a son who is now 24 and he does not suffer from these hellacious things.  Does anyone out there have a child who suffers from these???  Anyway, I'm trying to ease your mind, as I know we (I) would die for our children without batting an eye.  So I understand your concern, but keep that negative thought far from your mind.  Sorry to hear your beast is back...try killing it with some kudzu.  I'm pretty new to this so I haven't tried everything this site has to offer.  There's some veterans here with so much advice and support who are more than willing to help (and not judge).  Good luck to you!
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Brew
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Re: Back after 3 years.
Reply #55 - Oct 7th, 2009 at 12:20pm
 
Two people on this board (that I know of) have offspring that suffer as well. They can identify themselves if they choose.
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Marc
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Re: Back after 3 years.
Reply #56 - Oct 7th, 2009 at 1:25pm
 
My brother also has CH's. He's a couple of years younger, but his started sooner than mine. (Made my DX really easy)

His youngest son (22 years old) has now had three random hits, starting recently.

My Mother told stories of her Father holding his head rocking, crying and moaning for about an hour at a time. She had vivid memories of this happening with a very rapid onset and the pain leaving almost as quickly. They stopped when he was in his mid 70's, about 10 years before he passed away.

A few years ago, I traded emails with a doctor who was working with Goadsby when he was still in the UK. He was pretty convinced that there was a genetic factor, and was thinking about getting blood samples from CH sufferers in the same family. Funding didn't happen.

IMHO, there can be a connection.

Marc
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wip5150
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Re: Back after 3 years.
Reply #57 - Oct 8th, 2009 at 12:43pm
 
Interesting thread to say the least.  I've suffered from CH's for about 20 years now and have been coming here on and off for what seems like eight years or so.  Yes, I'm episodic and yes I come here on and off but I thought I'd throw in my $0.02 since this thing got derailed from the initial post.

1.  Whether chronic or episodic, CH's suck both for those of us who suffer with it and our families.
2.  Since CH is often mis or undiagnosed, I think many people (including yours truly) initially came here to try to make sense of the nuclear pinging behind the eye.  As humans, it's my experience that we seek to understand things that don't easily make sense like CH
3.  I have posted both in and out of cycle.  I will say that if I was ever to be chronic I would most likely spend a lot more time here.  But, when I'm PF, I don't come around as much as I'm too busy enjoying that PF time.  Not that I don't enjoy being here but you get the point.
4.  I don't see a lot of sense criticizing people who choose not to hang out here day-in and day-out any more than there's any point in criticizing people who are here all the time.  I think we are all old enough to figure out where we want to spend our time and how much time we want to spent there.

For one, I have ALWAYS found this site to be an oasis in an otherwise barren wasteland of information on CH.  I have used the information here when working with my Neuro and it's been beyond helpful.  Along the way, I hope I've been helpful to a few as well with tips, tricks, thoughts, support, etc. 

I see that I'm rambling so I'll end the rant.  This site and it's members are very important to every member of this community - let's not get all pissy about how often someone comes here or not.

PFDAN to all.

Out.
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Potter
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Re: Back after 3 years.
Reply #58 - Oct 8th, 2009 at 3:26pm
 
wip5150 wrote on Oct 8th, 2009 at 12:43pm:
Interesting thread to say the least.  I've suffered from CH's for about 20 years now and have been coming here on and off for what seems like eight years or so.  Yes, I'm episodic and yes I come here on and off but I thought I'd throw in my $0.02 since this thing got derailed from the initial post.

1.  Whether chronic or episodic, CH's suck both for those of us who suffer with it and our families.
2.  Since CH is often mis or undiagnosed, I think many people (including yours truly) initially came here to try to make sense of the nuclear pinging behind the eye.  As humans, it's my experience that we seek to understand things that don't easily make sense like CH
3.  I have posted both in and out of cycle.  I will say that if I was ever to be chronic I would most likely spend a lot more time here.  But, when I'm PF, I don't come around as much as I'm too busy enjoying that PF time.  Not that I don't enjoy being here but you get the point.
4.  I don't see a lot of sense criticizing people who choose not to hang out here day-in and day-out any more than there's any point in criticizing people who are here all the time.  I think we are all old enough to figure out where we want to spend our time and how much time we want to spent there.

For one, I have ALWAYS found this site to be an oasis in an otherwise barren wasteland of information on CH.  I have used the information here when working with my Neuro and it's been beyond helpful.  Along the way, I hope I've been helpful to a few as well with tips, tricks, thoughts, support, etc. 

I see that I'm rambling so I'll end the rant.  This site and it's members are very important to every member of this community - let's not get all pissy about how often someone comes here or not.

PFDAN to all.

Out.

Great post.

            Potter
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Re: Back after 3 years.
Reply #59 - Oct 15th, 2009 at 3:33pm
 
Marc, I understand why you never visit in between.  Denial.  4 years ago I visited the site for info.  2 years ago I read the message board for moral support.  I applaud those of you who can help others while PF.  I just like to pretend life is OK (with the ever present fear). 
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