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Topic: Am I alone? On first discovery of this site...... (Read 289 times) |
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superhawk2300
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Am I alone? On first discovery of this site......
« on: Mar 28th, 2006, 5:45pm » |
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When is first discovered this site I was overwhelmed to the point of tears! And not for a good reason: all these years I had hoped that my affliction WASN”T really that bad, and even sometimes that it WASN’T really even real. Deep inside of me I had hoped that this was completely psychosomatic (thanks Bill Gates for spell-check to make me look smarter than I am) and if I could stumble upon why I created these headaches myself they would just vanish forever – fade to black.
Now I’ve poked around on the net enough in the past to get the basics and my neurologist was pretty knowledgeable having some cluster patients already. But when I was again desperate enough to surf on headaches and I was presented with the HUGMUNGEUS (ok spell check don’t work for all caps) amount of data on this site which verified my fears I broke down and desperately wept. As I finished the “data” reading and started reading your posts I was thrown even deeper as it seems I actually have it pretty good for a clusterhead. So thanks for that….(jk)
Anyone else experience something like this? I am better about it now, I express my emotions so “I get over it” (whatever “it” is) pretty quick, but I am wondering how often it happens and if it has ever been a problem. I mean it is nice to find a place where I fit in but a place that confirms my worst fears and smashes my denial could be tough for some to take. (note this isn’t a suggestion that there is something wrong with the site, just an account of my reaction to it - Anyhow, I am usually blunderingly honest and some don’t like it and some don’t’ care).
The above account aside I look forward to being here and I will attempt to pull my weight and then some. I also want to say that I am in awe of any chronic sufferer who still stands.
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Luke63
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Re: Am I alone? On first discovery of this site...
« Reply #1 on: Mar 28th, 2006, 5:53pm » |
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I think this site (thanks to DJ) has made alot of us here realize who we are. And what's even better.......strength comes in numbers!!! Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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Jonny
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Re: Am I alone? On first discovery of this site...
« Reply #2 on: Mar 28th, 2006, 5:53pm » |
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on Mar 28th, 2006, 5:45pm, superhawk2300 wrote:| When is first discovered this site I was overwhelmed to the point of tears! |
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I think its safe to say that the above statement makes you normal, been there done that and have the damn T-shirt to prove it.....LMAO 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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pattik
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Re: Am I alone? On first discovery of this site...
« Reply #3 on: Mar 28th, 2006, 6:02pm » |
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Welcome, Superhawk. Spend some time reading through some of the guestbook entries, and you will quickly find that your reaction was quite normal. It really IS a mix of emotions, but it's all good. This site isn't just about data, but support too. Glad you found us.
Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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TxBasslady
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Re: Am I alone? On first discovery of this site...
« Reply #4 on: Mar 28th, 2006, 6:14pm » |
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Unfortunately we can't change what is....so we have to learn to accept it. That's not always easy to do, but with support from others who suffer, you'll make it just fine.
Welcome to the board. Lots of good folks here around the clock. Just like Motel 6...."we'll leave the light on for 'ya".
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Charlotte
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Re: Am I alone? On first discovery of this site...
« Reply #5 on: Mar 28th, 2006, 6:48pm » |
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No you're not alone.
I am grateful to be here, very grateful, and overwhelmed.
I like your point of view.
Charlotte
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alchemy
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get out of my head
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Re: Am I alone? On first discovery of this site...
« Reply #6 on: Mar 28th, 2006, 7:04pm » |
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I had the hardest time dealing with ch's until I found this site. it's still a daily battle being chronic but the support from everyone here makes it doable. hang in there hang in here we're always here. pf wishes to you jim
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fubar
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Re: Am I alone? On first discovery of this site...
« Reply #7 on: Mar 28th, 2006, 7:12pm » |
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Dude... got a name?
I'm Shawn.
This site made me break down and cry like a baby when I found it. The realization that I wasn't completely insane or completely alone was quite a shock. I had never talked with a person who knew (*really knew*) what I was feeling. I thought that maybe, just maybe, I was just weaker than, oh, everybody else in the world. Being crippled by a headache... come on. How?
Anyway... you are not alone... we have all been exactly where you are. Now get in the boat and start rowing. No time to doddle.
-Shawn
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Charlie
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Re: Am I alone? On first discovery of this site...
« Reply #8 on: Mar 28th, 2006, 11:18pm » |
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You are far from alone. I haven't been hit in more than a decade but when I decided to look into CH, I was dumbfounded and so glad that such a place existed. DJ did it right. 
I was a mess when I read the guestbook. It still gets to me when I go back for a look.
Stick around. Lots of good stuff around here.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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imnotbub
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Re: Am I alone? On first discovery of this site...
« Reply #9 on: Mar 29th, 2006, 10:19am » |
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While I agree that it would be nice to think that this affliction is not a 'regularly scheduled program', having the knowledge that it is not going to kill you, at least not by itself, is pretty good. I thought that I was going to die from this. That it was a brain tumor, or I was preparing to stroke out or something. Knowing that, as fucked up as they are, these are temporary (sorry to you cronics) and that eventually they will go away, for at least a while, to me, is a good thing.
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Life may not be good, but I think it beats the alternative, and if it doesn't, we'll find out soon enough
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aprilbee
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Re: Am I alone? On first discovery of this site...
« Reply #10 on: Mar 29th, 2006, 10:25am » |
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wasn't quite moved to tears, but it felt like a huge weight had been lifted off my shoulders, because no one around me understood what I was going through, as hard as they tried God Bless 'em....
Welcome, we're a fun bunch- -we gotta be!!
April Bee
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Dragnlance
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Re: Am I alone? On first discovery of this site...
« Reply #11 on: Mar 29th, 2006, 10:40am » |
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My response was the same as yours. The feeling of being all alone, then finding out you are not, has a profound effect on a person.
Welcome home
Dragn
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Mattrf
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Re: Am I alone? On first discovery of this site...
« Reply #12 on: Mar 29th, 2006, 11:41am » |
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I to wept when reading the posts for the first time and had also been in denial. I was first diagnosed two years ago but did not realize CH was a diagnosis and thought it was just a term my neurologist used to describe my headaches. I thought they were stress related, my first cycle lasted 9 months and I am 3.5 months into this cycle. I agree that when I read the post and realized that this is something that will haunt me for the rest of my life I was very depress but knowing that it was not stress related relieved a huge weight off my shoulders. The only thing I could think of that was a cause of stress was my wife and kids and they also felt this way and where blaming themselves for my pain so the entire house was a mess. So the knowledge of CH was a life saver for my entire family, they still feel very bad that I am in pain but no longer blame themselves for my pain. As bad is CH is having this site and all these people that are the only ones who can truly understand our pain is a godsend. This site has helped me and I think everyone else here to no longer feel alone, and when you are in this kind of pain feeling alone can be the worst thing.
Sorry you had to find us, but glad you did.
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There is no stronger a person then one who can deal with brain pain and still function.
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sandie99
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Re: Am I alone? On first discovery of this site...
« Reply #13 on: Mar 29th, 2006, 12:46pm » |
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superhawk,
welcome to your ch family! 
From now on when you need to be with people who know exactly how you feel, come right here. You'll never be alone with the pain.
Best wishes & PFdays,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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superhawk2300
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Re: Am I alone? On first discovery of this site...
« Reply #14 on: Mar 30th, 2006, 8:11am » |
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Thanks all for the feedback. I am glad you all posted what you did and understand. I was hoping no one was going to take my post as derrogatory toward the site and I find out lts of others felt the same way.
From the onset this site has amazed me and I am going to assume will contniue to amaze me from here on out.
Thanks again for the warm welcome!
Shawn - Jamey's the name, getting out of cluster cyles soon is my game (hopefully)
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