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(Message started by: PETE_MARIAH on Sep 6^th, 2003, 12:57am)

Title: This site does not make newcomers feel welcome...
Post by PETE_MARIAH on Sep 6^th, 2003, 12:57am

My husband suffers from ch and migraines, we posted a message and we immediately got responses from 'know it alls' who tried to say that my husband does not have ch. My husband has been to a dozen neurologists who say that he does. He was trying to let people know about a pain medication that could help others. The pain medication does not help him with the ch, but it helps when he gets the migraines. We thought there would be others that suffer from both types of headaches as well. We were under the false impression that this would be a good place for him to get good advice and maybe make some friends, but I can see that is not the case. It is bad enough that my husband feels like a freak because of his headaches, but now he feels ostracized by fellow sufferers. Thanks alot!! :'(

Title: Re: This site does not make newcomers feel welcome
Post by brain_cramps on Sep 6^th, 2003, 2:05am

Hi

I just read your 2 previous posts and the replies. Your reaction has me quite surprised.

First of all, narcotics usually don't really help cluster headaches. Apparently, they help migraines but I don't know anything about migraines since don't suffer from them, nor do most of the sufferers here.

Secondly, I didn't see anything in the replies that ostracized him.

on 08/31/03 at 19:46:35, PETE_MARIAH wrote:

My headaches are caused by military exposure but I exibit many of the same symptoms of ch.

Thirdly, this didn't sound like he'd been to a 'dozen neurologists'. Instead it sounds like "many of the same symptoms of ch" are present and you are unsure of the type of headache. (Also, it must have taken years to see a dozen neurlogists.) In addition, cluster headaches are often mis-diagnosed. (I'm not in any way implying that a 'dozen neurologists' are all wrong.)

on 09/06/03 at 00:57:24, PETE_MARIAH wrote:

We were under the false impression that this would be a good place for him to get good advice and maybe make some friends, but I can see that is not the case.

I realize you are frustrated with your husband's situation, but you might want to go back and reread your 2 posts and the 2 replies and rethink your comments about this site and the people here.

Thanks a lot. ::)

Title: Re: This site does not make newcomers feel welcome
Post by Hooter on Sep 6^th, 2003, 3:20am

I did the same thing and I can't see the offence, I also can't see these 'know all' posts. It just looks to me more like your suggested treatment approach is not attractive to other sufferers.

Now here IS bit you will probably see as being a know-all!
For what it's worth, I suffer from CH and migraine as well (there are a few of us) and although I am glad you have found something which helps you, the medical advice here in the UK is contrary to what you are suggesting. Here the doctors usually use the drugs which actively work on the blood vessels in the brain and stop the attacks or prevent them, rather than escalating the pain killer strengths into opiate level. This applies equally to migraine and CH treatment here, though the drugs are different.

Most of both types of sufferers find pain killers of all different levels and addictive properties/side effects of very little use unless it is a low level attack, a shadow or in the case of migraine, a newly developed condition (new migraine sufferers often do respond to painkillers initially)

I hope you feel able to see that you were not in any way attacked/made unwelcome when you reread your posts and the responses. It would also have been good to know a bit about you before you piled in to recommend drugs.

Wendy the Brit

Title: Re: This site does not make newcomers feel welcome
Post by jmorgan52 on Sep 6^th, 2003, 5:31am

Hi Pete's wife.

Don't take it too personally. This site is not a place tp make many new friends. It is about getting lots of perspective and ideas to fight this bastard affliction. You have to be thick skinned and persistent to stick around here. Many get flamed at first and go away. Many like me stayed. You don't seem to have been treated by this board too badly. I agree with others that painkillers are pretty useless for CH (and really bad migraines) I for one no longer use them for attacks but use the Imigran injection which constricts the blood vessels and the pain vanishes rapidly. Your man should try these and see if they work for bad migraines. Narcotics are not for me.

Good luck anyway

John

Title: Re: This site does not make newcomers feel welcome
Post by stevegeebe on Sep 6^th, 2003, 5:42am

Folks,

The results of for me at this site are as follows:

1. Obtained sound advise.

2. Obtained friends (Clusterbuds).

Steve G

Title: Re: This site does not make newcomers feel welcome
Post by Patrick_A on Sep 6^th, 2003, 6:26am

I suffer from episodic cycles of CH and intermittant Migraines. I come here for my CH's. IT IS CALLED CH.com, not Migraines and CH.com. If you want information or support for CH's, then you are in the right place! If you want information for old war wounds, then i suspect not the right place!
Sorry you find us offensive, But i AM offended by your posts!
Patrick ???

Title: Re: This site does not make newcomers feel welcome
Post by daveengland on Sep 6^th, 2003, 6:34am

had nothing but help and advice from all here,

.....apart from the odd piss-take!!!

dave

Title: Re: This site does not make newcomers feel welcome
Post by Hound_Dogg on Sep 6^th, 2003, 8:03am

Pete's wife,

I don't find your post offensive. Obviously your husband is suffering some really intollerable pain, if your doctor has prescribed ACTIQ. Just the fact that he is using this medication tells me the pain has him up against the ropes, so to speak.

Tell him good luck...also if the Actiq helps, tell him to ask his doctor about Duragesic. It's the same medicatiion only in a patch form that lasts up to 72 hours. Also, try your damnest to get a diagnosis from the doctors. You don't want to just mask the pain but try to get to the cause, if possible. (I know how the V.A. can be, but try anyway).

No matter what type of head pain he has. It's obviously bad. Good luck & stand beside him.

Jim

Title: Re: This site does not make newcomers feel welcome
Post by cootie on Sep 6^th, 2003, 8:53am

My doc talked to me bout pain killers my last visit (not ch related).....for severe muscle spasms and bad disk pain related crap bringing on bad migraines he said the narcotics types can work. (in moderation of course !) Can't see em doin anything to mask CH tho what so ever unless ya got doped up unconsious. But hey......everyone is different.........gawd knows I am Pam!

Hey is this board runnin slow taday or is it jus too early for me ta run very fast ? ;)

Title: Re: This site does not make newcomers feel welcome
Post by ave on Sep 6^th, 2003, 9:50am

It's you that is fast, as yousual, lol

Title: Re: This site does not make newcomers feel welcome
Post by Prense on Sep 6^th, 2003, 10:04am

on 08/31/03 at 19:46:35, PETE_MARIAH wrote:

My headaches are caused by military exposure but I exibit many of the same symptoms of ch. My headaches are helped by Sansert, which is no longer available and pain meds. I noticed looking on this website that some use pain meds and I thought this info may help those people that are able to take narcotics to manage thier pain. If you are not able to take narcotics to help I am sorry for you, but for those that are able this medication, Actiq, works well and fast. Narcotics are a last resort since there are addictive, but when the pain is bad you have to do what ever you can. Best of luck to you.

Pete

This here made it sound to me that Pete was admitting that his HAs were not CH...only similar. Now you are saying he has CH and migraines. ::) If I am not interpreting this earlier post correctly, my appologies. As Patrick put it, this is CH.com, and my response was only to maintain the integrity of that...not to offend. As far as me being a know it all...hardly. I sincerely hope that whatever is causing Pete's HAs gets cured. I agree with the earlier comment that masking pain is not the way to go unless there are just no other options.

Chris

Title: Re: This site does not make newcomers feel welcome
Post by CathiP on Sep 6^th, 2003, 10:41am

Dear Pete & Mariah-
It is unfortunate you didn't like the responses you initally received here. I do hope you'll open yourselves up to everything this mb has to offer. As I read your 3 posts, and the responses, I got a few things.....the jury(although I since read you have been to many docs) is still out about a real dx....CH and migraines being 2 that you are dealing with. Let me explain- when you made reference to "know it alls".....well, in fact, yes, they know a LOT about CH- they don't know you, yet...many have been down this road, and they are trying to keep
YOU from taking that walk.....know it all? Perhaps you could substitute concerned fellow Clusterheads.....it's the same....AND yes! THEY FEEL THE SAME PAIN AS YOU...and they have found other treatment.....I implore you, look at the buttons on the left- use them to educate yourselves further....but, please, don't ask these people to go the narcotic route- they are trying very hard to keep their lives as normal as possible.
If you take the time to get to know the people around here, you will find them to be quite caring, very friendly, and ready to step in to help you any time you might need it.
If, after 3 posts, you are ready to throw in the towel here, well, safe journey, best wishes......if you do need a place to land with your questions about CH and coping...this is it......give everyone another chance, here, and be open to what they have to tell you.
BTW- I did read the responses you got, and I really found the words to be consistent with Clusterville....we all get tired and cranky...that's what the Beast does to many...perhaps you might reread those posts, maybe they will read better for you now.
Wishing you both the best....and PFDAN
Cathi

Title: Some Newbies are a Real PITA
Post by Ueli on Sep 6^th, 2003, 10:47am

Pete and Mariah, do you really think everybody has to spill a bucket full of fuzzies on every newbie, especially one with such a first post?
In this first post we learn nothing but a name about the writer, not a word about headaches. Instead, this post reads like a commercial of a drug pusher, the kind of people that often get nothing than a "fuck off". Insofar, you were lucky that the first response was from the very kind and moderate Opus.

Mariah, you have insulted 4880 members of this board by holding them responsible for two posts that you considered unkind.

I suggest that you drop your attitude and start afresh, tell us something about you and your headaches, what worked for you and what didn't. And if you want to recommend narcotics for the treatment of CH, you'll have to give some really good reasons, since most here consider to live in a haze inbetween cluster attacks as something undesirable.

No hard feelings, but I had it to say once again. :D
Make a new start and you'll be inundated with good advice and kindness.

PFNADs
Ueli

Title: Re: This site does not make newcomers feel welcome
Post by Cooked Brain on Sep 6^th, 2003, 10:55am

thank you for taking the time to say it the way you did UELI ;D

Title: Re: This site does not make newcomers feel welcome
Post by cathy on Sep 6^th, 2003, 4:03pm

Hi Pete_Mariah Welcome welcome welcome to the board....im sorry if you didn't feel welcomed that sux but what Ueli said ;D

btw...my husband suffers and he is a freak :)

Cathy I love freaks

Title: Re: This site does not make newcomers feel welcome
Post by Drk^Angel on Sep 6^th, 2003, 9:51pm

I have a question... What exactly was it from the "military exposure" that caused Pete's cluster headaches?

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

Title: Re: This site does not make newcomers feel welcome
Post by Charlie on Sep 6^th, 2003, 10:54pm

Hi and welcome back.

It's obvious to me that you are both suffering because of this horror and I guess migraines as well. Many people here are well-acquainted with both. I guess that most of us have such bad histories with pain medications and their ineffectiveness that we find positive stories about them very hard to swallow. My own experience is that there are no effective pain killers that can be used unless one can put up with the misery of narcotics.

I hope you decide to stick around. There are a lot of good ideas here about dealing with this kind of pain.

Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”

http://www.netsync.net/users/charlies/

http://www.ouch-uk.org/ch/note_colleagues.cfm

I hope you stay will feel at home here. Sometimes these so-called bad starts lead to some terrific and long board relationships. It did me.

Good luck and let us know how things are going.

Charlie

Title: Re: This site does not make newcomers feel welcome
Post by fubar on Sep 6^th, 2003, 11:42pm

Good God...

I really love this place and the assortment of freaks that we are fortunate enough to have here. I gotta tell you though, this constant whining about how we aren't nice enough just is getting OLD OLD OLD.

With over 4000 members, you have to expect a few different points of view, and I don't think there's any logical reason to be insulted if you don't get the answer you expected when you post. If you don't like it, guess you can stop posting, right? Or here's an idea, stop reading posts. Pretty hard to get insulted if you stop reading this stuff.

It's like people think this board OWES them a polite reply to a question. Sorry folks, that's not how it works. If you get a nice, informative, polite reply, GOOD FOR YOU. If you post, be prepared to get a lot of different responses. If you're easily insulted, you shouldn't post... somebody is going to insult you eventually. Get over it. Get over yourself.

Sorry for the rant... I hope you stay and contribute.

-Fu

Title: Re: This site does not make newcomers feel welcome
Post by jonny on Sep 7^th, 2003, 4:07am

on 09/06/03 at 23:42:10, fubar wrote:

TO "MF'ing" CHE'.....Fubar

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

Title: Re: This site does not make newcomers feel welcome
Post by BarbaraD on Sep 7^th, 2003, 4:24am

P & M,
We sometimes get a little cranky, but we're a bunch of nice folks.
I suffer from chronic CH, arthric migraines and post traumatic concusion HAs, so I NEVER know what to take until I'm at about an 8 on the Kip Scale. I keep a few pain pills around for the concusion, but am very careful to wait and see if it is the right one before I take them cause it doesn't help the others.

One thing you'll notice about us around here. We all react differently to meds. Sometimes 3 Excedrin ES and a cup of black coffee will abort any one of my 3 types of HAs. Other times I'm grabbing for the cafagot (can't take Imitrex), ice packs, refrigerator magnets - anything to get relief.

Right now Topamax is working on me to put me in remission for the CH (and some for the migraines) and I take Celebrex when the migraines get to hitting real often. BUT this works for ME and not everyone else. That's what's so discouraging about these things - what works for me - has no effect on someone else. We tend to think that we've found the "Miracle Cure" when we get relief and want EVERYONE to use it and it just doesn' work for someone else.

Most of us "old-timers" here have tried almost everything (and I do mean everything) and if we sound rude about a drug - we don't mean to sound that way - it's just discouragment because it didn't work for us and we wished it had. We all want relief and get upset when we get our hopes up that something is going to work and then it doesn't. I hope that makes sense.

We have the best support team around - it's saved my life more than once and I hope I've paid the favor back by being there for others when they needed support. That's the purpose of this board (or the intention of it). We formed an International Association (OUCH) to get a better understanding of CH and it's becoming more successful by the day.

Clusterville is the best place to be when you have CH. Sit on the porch, get to know the people. We've got a wide assortment of nut cases here. But don't wear your feelings on your sleeve. WE are EXPERTS on CH - we live with the damn things on a daily basis. Especially those of us who are chronic. WE tell it like it is. We can laugh at ourselves and try to keep our sense of humor. Just go with the flow. We'll try to keep Jonny in line, but.... we do have our "problem children" just like any other family.

If you want to stay a spell and learn what we know - welcome... Hugs BD

Title: Re: This site does not make newcomers feel welcome
Post by Opus on Sep 7^th, 2003, 5:43am

Pete Mariah,
I'm sorry if I came across as a know it all. I tried to post as nicely as I could. Since we get a lot of drug pushers here it is hard to figure out if they are trying to help or trying to make money on others pain. Most newbies ask what can they do to stop the pain and how to cope. Also remember that we are always hoping that newbies don't have CH but something that is curable. This is probably the only group that is happy when someone finds that they have a brain tumor instead of what we have.

and I forgot to say,

http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif

Opus/Paul