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        New Message Board Archives >> 2002 Posts >> RE: Loss Of Control
        
(Message started by: LoveChunks on Nov 11^th, 2002, 8:55am)

Title: RE: Loss Of Control
Post by LoveChunks on Nov 11^th, 2002, 8:55am

I'm new here and don't usually post... but I had to say something after reading this post and the replies it recieved.
First of all.. she was in ODVIOUS pain.. for a long period of time. You all are saying "10 hour 10's -- NO F****** WAY!!" Well, what would happen to you if you DID get 10 hour 10's..

You'd do the same thing she did.. go delusional and PASS OUT!!!

NO one.. I don't care if you were superman.. could handle that pain for that long..
and whether it was a CLUSTER OR NOT... it's still a damn shame she went thru that..
I just wanted to tell her that I am sorry she did. But not to give up.. and hang in there.. and also to keep in touch.. the rest of us would like to know she's ok... and if it wasn't a cluster.. what was it??

Hang in there..

Title: Re: Loss Of Control
Post by OneEyeBlind on Nov 11^th, 2002, 9:00am

Nice post LoveChunks !!! Hope she is doing ok as well.

Title: Re: Loss Of Control
Post by Cathi on Nov 11^th, 2002, 12:07pm

THANK YOU! Love Chunks, I'm so glad you said it. For those who might've missed Marina's post- she, amongst other things, passed OUT in the midst of this horrendous experience-does not remember going to her neighbor's for help, and at the time she last posted, didn't recall much of the ordeal-
If she has a history of CH, perhaps, as she suggested this is a serious rebound from being off meds.
Marina replied to my pm yesterday- things were
better.There is support her that this girl can use right
now.

Title: Re: Loss Of Control
Post by Margi on Nov 11^th, 2002, 2:21pm

Yeah, uh...thanks for the recap.

Lovechunks, the reason for the posts against the idea of a 10 hour 10, is that it very well could mean that Marina suffered something more serious than a cluster and LIFE THREATENING. Yes, we ARE all sorry that she went through that horrific pain, no one here is denying that. But the chances of what she went through actually WAS a cluster attack, are pretty slim. I see someone suggested detached retina and I, myself, was worried she may have suffered a stroke. (I strongly doubt something this brutal could happen from a meds detox.)

I don't think there's anything wrong with us suggesting that Marina get tested for other LIFE THREATENING conditions. To just agree and say 'Wow, that was a bad attack' and let her go on thinking that this is cluster headache related when it could be something WAY more serious? Nope, that's not what we do here. Clusters don't make people pass out, as a rule, NOR do they last that long. What's so hard to understand about that? We are trying to urge Marina into getting a proper diagnosis and, hopefully, treatment for what is happening to her.

Title: Re: Loss Of Control
Post by SFChris on Nov 11^th, 2002, 2:51pm

Excellent post Margi. I agree with you completely...

Chris

Title: Re: Loss Of Control
Post by LoveChunks on Nov 12^th, 2002, 7:55am

OK OK!! I did not mean to make anyone angry! :-/
I wasn't referring to YOUR post Margi - or anyone else who said they cared. I was referring to the people who wrote.. "Nope not clusters sorry" or similar reactions, and just basically blew her off. Some of the posts were a little insensitive, I thought, and I just wanted to let her know that I noticed, and didn't feel that way also. Apparently, I wasn't the only one.

Margi, I have seen NOTHING but good advice from you.. ever. I am in no way trying to say that she shouldn't seek more in depth medical advice. I agree that she should.

This is exactly why I just sit back and watch. I always pisss someone off.
I won't post again - and I'm sorry to have offended you!

Title: Re: Loss Of Control
Post by Margi on Nov 12^th, 2002, 9:55am

pssst, hey, Lovechunks.... don't not post because of what I said. My post actually wasn't directed at you either. Mine was more directed at the prevailing attitude here lately that we should welcome anyone with any kind of head pain here for any reason. I will always rise to the bait of this attitude, Lovechunks, because it directly contravenes the original intention of this website. We are a website for cluster headache sufferers and their supporters - that's it, that's all. Cluster headache symptoms are clearly defined and variations of head pain require different treatment. Period.

Lately, however, we have seen a huge influx of apparent cluster wannabes (why anyone would WANT to be a clusterhead or a groupie for this horrific condition is beyond me ::) ).

Now, I realize that the internet is a public domain and it's not like we can barr anyone access, but the point remains is that if non-clusterheads are given clusterhead advice and, therefore, clusterhead meds.... it's just plain dangerous! If, for example, a sinus headache sufferer is encouraged to be a clusterhead because of the 'we accept everyone here, come on IN' attitude and asks his doctor for Imitrex....well, simply put, it could kill him. Or if, in Marina's case she did, indeed, suffer a stroke but was mollified into thinking that it was just a 10 hour cluster attack - she may not go get checked for any underlying conditions that could turn out to be fatal. See my point?

Anyways, I do want to apologize to you, Lovechunks, that I did actually use your post as a stepping stone to get up on my soap box about this. And, yes, I used Marina's unfortunate episode as an example to further demonstrate my point about how desparately important it is that we keep to the program here - the ORIGINAL program, not a modified version of it.

So, Lovechunks, if you're a clusterhead or live with a clusterhead, by all means, come on IN. OK?

Title: Re: Loss Of Control
Post by OneEyeBlind on Nov 12^th, 2002, 10:23am

Margi, nice post. Know some of you were trying to help Marina and I certainly want a good diagnosis for her as well.

However, the part about "if you are a clusterhead or live with one" kind of bothered me just a bit. Some of the best supporters I have are the people I work with; the people that pick up the slack when I have been up all night fighting the beast. My family, brothers, sisters, etc all support me as well. I don't live with them, but they sure do support me well. I do have family that has come to the board to read the posts here to better understand the pain I go through. I would hate to think they would be turned away as a non-supporter just because they don't live in my house. Just a thought. I look for any support I can get.

PFDAN's to ya all.

Title: Re: Loss Of Control
Post by Margi on Nov 12^th, 2002, 10:41am

You're absolutely right, OneEye...I should qualify that to read 'if you're a clusterhead or actually have one in your day-to-day life'.... better? :)
Thanks for pointing that out and I'm glad to hear you've got good support in your life.

Title: Re: Loss Of Control
Post by OneEyeBlind on Nov 12^th, 2002, 10:44am

Yup, I'm smiling cause I got some great support from family and friends and clusterbuds !!!!!

Title: Re: Loss Of Control
Post by David Shea on Nov 12^th, 2002, 10:51am

Hi One Eye,
I do not think your supporters have to live with you to support you, Your sisters, brothers are your support
group and this is a great place for them to find information. To support you. But, I question if they should offer advice here on the board.

I think Margie is right on top of thinks with her comments
on the reasons this site is here. DJ explains that in
the tab, "about this site"

Love Chucks, Some post may have seemed insensetive
to you I agree. But, One think I have leaned my short time here at the MB is A topic like this will get answer
by those from the old message board in much the same way. AS that is usually the only advice one can offer.

I like the post that will hold different opions and storys
from each post, It all so shows the very different nature
of the beast we are all trying to live with.
Hope you stick around and if you have something to add
to a post that may help, or a view Iwould like to see it.

The post on the retina, Was My opion on the lighting
bolt.
PFDAN, David

Title: Re: Loss Of Control
Post by Margi on Nov 12^th, 2002, 11:01am

exactly, David - for someone that has never witnessed a real cluster attack (and felt that resulting complete and utter helplessness that all true supporters feel) ... for them to offer advice of any kind is, in my opinion, just wrong. Kinda like an unmarried marriage counsellor, in my books. ::)

Title: Re: Loss Of Control
Post by Elaine on Nov 12^th, 2002, 11:45am

I agree with Margi and Dave. I am very leary as to who I get advice from. Only people who have wittness somone having one, or a cluster suffer them selfs. I know the point of OUCH is to get the word. Thats not the reason for this site. This site is to be among other who have clusters and their supporters.
Just my 2 cents. ::)

Title: Re: Loss Of Control
Post by Drk^Angel on Nov 12^th, 2002, 12:16pm

On the original topic of this thread... How exactly does calling someone a migraineur based on one specific, atypical attack, when they have a history of typical cluster headache syndrome, help them acheive a proper diagnosis for that attack, or their headaches in general?

PFDAN.......................................... Drk^Angel

Title: Re: Loss Of Control
Post by brad267 on Nov 12^th, 2002, 12:19pm

Margi,

This past weekend, my brother finally got to witness me in an attack. My wife watched over me (as usual), and he bolted as far away as possible. He freaked - he ran for the hills.

Later, he gave the most sincere apology I've ever heard. -- but not for running away during the attack.

Deep down, he's doubted the validity of what I've been telling him all along. "It's just a headache -- you're a wuss -- suck it up, nothing can be as bad as you say"

He said it was the most disturbing thing he's ever seen.

So, what I'm saying is: I agree with you. Seeing is believing - but I'd rather they just believe me.

Title: Re: Loss Of Control
Post by Slammy on Nov 12^th, 2002, 1:55pm

I guess this will continue to be a battle that will be fought forever. Why we find ourselves in these conversations baffle me... I think we just like to debate. Nothing wrong with that, as long as we acknowledge it.

It is inherently dangerous to "volunteer" one's diagnosis in here. Especially when:

1. We are NOT doctors.

2. We are basing our diagnosis on minimal information. (from the "patient" )

I know that from time to time, we "offer" our opinions, sometimes tongue-in-cheek, but the bottom line is to direct the person to get a proper diagnosis from a qualified neurologist.

I mean, if someone says, " I get these 10 hour throbbing headaches everyday, are these clusters?"
I'm sure there is nothing wrong with saying,
" doesn't sound like clusters, but MAKE SURE YOU SEE A NEUROLOGIST as soon as possible".

But we need to make sure these visitors or newbies do not look upon the oldtimers on here as a "poorman's" subsitute for a doctor. Even when "we know better".

Slammy 8)

Title: Re: Loss Of Control
Post by Drk^Angel on Nov 12^th, 2002, 2:09pm

Well said Slammy, and I'm sure everyone in this debate will agree. Mayhaps you'll save us from another battle royale. LOL ;D

PFDAN.............................. Drk^Angel

Title: Re: Loss Of Control
Post by SFChris on Nov 12^th, 2002, 2:59pm

Slammy's back in town!!! 8)

Title: Re: Loss Of Control
Post by Margi on Nov 12^th, 2002, 3:55pm

excellent post, Slammy.

Title: Re: Loss Of Control
Post by jonny on Nov 12^th, 2002, 3:56pm

on 11/12/02 at 13:55:52, Slammy wrote:

I mean, if someone says, " I get these 10 hour throbbing headaches everyday, are these clusters?"

I beg to differ,

If I remember right what was said is "I had a 10 hour cluster headache"

That person should be told "No, its not a cluster and you should see a Doc"

That person should not be encouraged at all to keep posting here because we all know there is no such thing as a 10 hour cluster, whydo you think they are called "CLUSTERS"

.............................jonny

Title: Re: Loss Of Control
Post by Slammy on Nov 12^th, 2002, 4:05pm

ya can beg all you want, ya yambag! ;D

I was using an example, not quoting. but, to your point, you are absolutely correct. In your instance, that person is misinformed and your response is dead nuts on. In my example the person was just asking if it is a cluster...

Though I am still looking for that "perfect" woman that can "cyber-sex" during a kip 10 attack! ;D

Slammy 8)

Title: Re: Loss Of Control
Post by jonny on Nov 12^th, 2002, 4:10pm

Well!!!, why dont you start with "LOVE CHUNKS".....she sounds like TONS-O-FUN!!!!! ;D ;D :o

Title: Re: Loss Of Control
Post by Drk^Angel on Nov 12^th, 2002, 4:17pm

I'm still wondering how calling someone a migraineur after one atypical attack, out of how ever many typical CH attacks the person may have had, helps them receive a proper diagnosis for that attack...

PFDAN......................................... Drk^Angel

Title: Re: Loss Of Control
Post by Slammy on Nov 12^th, 2002, 4:18pm

on 11/12/02 at 16:10:10, jonny wrote:

.she sounds like TONS-O-FUN!!!!! ;D ;D :o

LMMFYBO!!!!!!!!! You are fuckin' killing me, Bro! ;D

Slammy 8)

Title: Re: Loss Of Control
Post by LoveChunks on Nov 12^th, 2002, 7:57pm

on 11/12/02 at 15:56:13, jonny wrote:

That person should not be encouraged at all to keep posting here because we all know there is no such thing as a 10 hour cluster, whydo you think they are called "CLUSTERS"

.............................jonny

JONNY - You're missing my point. She said in the VERY first line of her post that she has suffered with CH for 6 years - and I think that makes her more than qualified to post here.

Just because she had an attack that isn't typical, doesn't mean that she doesn't have CH. Maybe she was just telling people to see if anyone else has had anything similar. Maybe she was looking for some empathy. Calling her a "MEEEEEEEEEEGRAINER" isn't nice. THAT"S my point. (meeeeegrainer is a BAD WORD) ;D

Yeah, she should see a doctor, and no one is denying that. I think she knows that too. But to attack her because she had a 10 hour SOMETHING wasn't very warranted. I think we all agree that a 10 hour cluster isn't normal, and that it probably wasn't a cluster at that time, but she is a CH sufferer, and shouldn't be shunned.

And - "TONS-O-FUN"?????? Are you saying I'm fat??? Are you saying that I don't have a charming personality?
Are you saying that you want my phone number????

LOL!

Title: Re: Loss Of Control
Post by Ueli on Nov 12^th, 2002, 8:20pm

Ave mentioned fakes.

That reminds me of a neighbor who watches for 6 hours "an 10 hour CH attack" before calling an ambulance, and wasn't even impressed by slit wrists. Hmmmmmm....

??? ??? ???

Title: Re: Loss Of Control
Post by Charlie on Nov 12^th, 2002, 8:46pm

I suppose there may be atypical clusters and that they will someday post. Gotta make sure though. It's good to let the others know we don't have a lot of help for them. I do think that we should let them go on their own accord in most cases. A migrainer will get bored with us and fade away....

Unless he is looking for cybersex of course. :o

Mean old Charlie 8)

Title: Re: Loss Of Control
Post by fubar on Nov 12^th, 2002, 8:49pm

God damn it. This is just like high school. All this sex happening around me and I didn't have a clue.

Title: Re: Loss Of Control
Post by LoveChunks on Nov 14^th, 2002, 9:57am

Yes, Ueli, I TOTALLY agree... and wondered about that myself.

BUT, again, this is NOT my point.

It seems that if someone comes here and describes their pain, we shouldn't SLAM them - even if it's not a cluster. Especially if they ARE CH sufferers, with a different type of attack.

I don't think flaming anyone gets anyone anywhere. That's all.

Title: Re: Loss Of Control
Post by fubar on Nov 14^th, 2002, 1:59pm

I've read Marina's first post a few times now, and I gotta say it just doesn't sound right. There are too many questions that need answering. A little healthy skepticism isn't a bad thing.

A lot of us here 'own' our malady. That is, we live it, we deal with it, and we should be proud of ourselves for making it this far. When someone 'fakes' their way into the family, it is kind of insulting, don't you think? I'm not saying Marina is a total fake. I have no doubt she has issues, but I'm not convinced she told us everything, and I'm less convinced she only had a CH on that day. It doesn't surprise me when people cry foul after reading her post, but we must not lose sight of the fact that. no matter what, Marina was crying out for help for something.

Title: Re: Loss Of Control
Post by SFChris on Nov 14^th, 2002, 3:33pm

I have no real value to add to this post but I do feel the need to tell LoveChunks that she has a great name. It has so many possible interpretations... :-X

Chris

Title: Re: Loss Of Control
Post by LoveChunks on Nov 14^th, 2002, 4:20pm

Hey, Thanks Chris!! :-*