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Topic: ok so i did it wrong, i'm new here. (Read 1824 times) |
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skettico
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ok so i did it wrong, i'm new here.
« on: Sep 25th, 2002, 11:18am » |
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Hello. I am a loved one of a ch sufferer. I am in search of anything, ANYTHING that will help him. I do believe o2 is the key but I don't know how long it will work for and he has tried everything else. What do you do?
This KIP scale, I just got us talking about it in the house so he can tell us how he is doing and now, every night at 12:30 it's a 10, yesterday at work he got a 10. He used to get different ones but now they are all 10's. Last night he was begging me (or someone) to help him and make it go away. I read a story about someone that uses that blunt end of a phone reciever to beat himself till the pain subsides. I cant take this, and I am sure he cant either. If need be I will move out or take him on vacation, or anything to help him there has to be a way. I am so lost and I know he is too. And I know he will never tell me that I am the reason they are worse but I cant think of anything else it would be..............please help
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Margi
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Re: ok so i did it wrong, i'm new here.
« Reply #1 on: Sep 25th, 2002, 11:32am » |
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Hi Skettico, welcome.
First of all, you are NOT the reason he is worse, so don't go down that road, ok?
As supporters, we do tend to try to justify or explain their pain but that's usually futile. No one really knows the cause. Worse, we still don't know the cure. OUCH's goal is to find it.
There are a few things you can do to help him though. Yes, oxygen is a widely used and quite successful abortive, read everything you can on it - read ALL the buttons on the left, here. Get him in to see a cluster-knowledgable neuroligist in your area - there is a list of them at the OUCH website, under Recommended Doctors.
He can use an ice bag on the back of his neck at the onset of his pain - that helps a lot of folks here. Try dramamine before bed to help him get through the night, unattacked.
My biggest advice to you, though - supporter to supporter - is to ASK him what he wants you to do when an attack hits. (Ask him when he's not in pain though.) A lot of sufferers prefer to be alone so don't be offended if this is what he wants. Does he want a glass of cold water? Are there any meds that help him? Whatever you do though, please don't fire questions at him while he's getting hit. He won't be able to answer you politely at that point. This pain is something neither you or I can even fathom, so we just have to respect it and live with it.
We have a group assembled for supporters, The Family Services Team - we're also over at the OUCH site. We intimately understand what it's like to sit on this side of the fence. Check us out. Also, there is a supporters' forum right here on the board where you can share your war stories. Being a cluster supporter is probably the hardest job you will ever do, but when that cycle ends and the pain finally stops, it's the sweetest feeling in the world. 
Feel free to email me directly, if you need a shoulder. moxie_miss@hotmail.com. Hang in there, friend. You're not alone with this anymore.
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echo
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Re: ok so i did it wrong, i'm new here.
« Reply #2 on: Sep 25th, 2002, 11:36am » |
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Welcome Skettico, Sorry to read that your loved one is having a rough dance with the beast. I really cannot add anything to what Margi has already written.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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SteveY
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Re: ok so i did it wrong, i'm new here.
« Reply #3 on: Sep 25th, 2002, 11:39am » |
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The very fact you are here proves you are not the reason he is worse.
CH is a neurological condition, it is said to be one of the worst pains known to mankind.
When you're suffering a 10 or a 9, you look for ANY reason why.
The why me? syndrome often occours, I've been there. It's not his job, it's not you, he needs medical help.
Is he on any preventative, verapamil etc, what abortives does he use? Is he chronic or eposodic? and does he have a neurologist?
There is help available, tell us more.
Steve
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NancyMcFree
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Re: ok so i did it wrong, i'm new here.
« Reply #4 on: Sep 25th, 2002, 12:00pm » |
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Welcome to the board. Find a good doctor that understands cluster headaches and things might get better. In the meantime, you can have the O2 delivered to your house ... your regular MD can write the perscription. There are lots of preventatives and abortives available. He will need to try them and see which ones work best for him. In the meantime, just keep supporting him. You are not his problem; you are part of his solution to resolving the pain !!!! Like SteveY said, give us more info and perhaps we can be of more help.
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Jim R
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Re: ok so i did it wrong, i'm new here.
« Reply #6 on: Sep 25th, 2002, 4:07pm » |
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Sorry to hear your guy is getting hit. Margi gave some excellent advise... My wife feels so helpless and in truth, she really is, as am I - we ride it out as best we can. If it gets too bad, we seek more help. We try the drugs and hope for the best. O2 is a great abortive, but it doesn't always work for me, but when it does it's a God-send. With your future neurologist, explore preventative. He might have to try a few or a lot to find some that help. Stick with this experimentation as lousy as it can be. The "fix" might be the next drug....
As a supporter, like my wife, it is probably difficult for you to imagine the pain as it is difficult for the person experiencing it to communicate the level of agony - and make no mistake - it is UTTER AGONY. I have often thought if someone told me that the pain might last for a day or more, I couldn't handle it.... The best a supporter can do is be supportive - LOL - be there when needed/wanted and not when the clusterhead cannot handle it. It is a fine line and yes - we tend to get very snappy sometimes, but hopefully we all make up for it in other ways.
I wish you the best in dealing with is and please wish your guy PFDAN's from me and us on the MB. - Jim R
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skettico
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Re: ok so i did it wrong, i'm new here.
« Reply #7 on: Sep 25th, 2002, 4:32pm » |
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YOU GUYS ARE GREAT!!!!Thank you so much. I am just trying to cope and figure out what to do. I have intimatly read OUCH and I am going to get ice packs and dramamine after work. I think that he is the world and I thought the only thing I could do was run, cause it was me. We talked and he confirmed that it is not. I hope he means it. But I am going to do all I can to support him and get him help, he's great you guys would love him. I hope all of you do not have to suffer for long and I do think that this is where I need to be. I did not know that there were so many people with words of wisdom to assist. We got him oxygen today!!!! Yay!!! And if there is ever anything I can do to help (I am new at this but I am a good listener) please let me know. Thank you SO much again.
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skettico
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Re: ok so i did it wrong, i'm new here.
« Reply #8 on: Sep 25th, 2002, 4:35pm » |
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And one other thing, he gets 10's all the time, he never gets smaller than that (on the kip scale). And another thing is he throws up. That doesn't happen all the time but it's scarry. Are these normal?
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jonny
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Re: ok so i did it wrong, i'm new here.
« Reply #9 on: Sep 25th, 2002, 4:36pm » |
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He means it!!!!!
Just keep reading posts, Im sure there will be somewhere you can help.
....................jonny 
Sket,
Some do vomit but noone vomits every time and Ive been reading here for three yrs. I would say you got nothing to worry about when it comes to that. and a full blown CH is usally a Kip 10, its not uncommon for every CH to be one.
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echo
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Re: ok so i did it wrong, i'm new here.
« Reply #10 on: Sep 25th, 2002, 4:38pm » |
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It's not you. He is being truthful with you.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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2late
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Re: ok so i did it wrong, i'm new here.
« Reply #11 on: Sep 25th, 2002, 5:08pm » |
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ch has absolutly nothin' to do with you, promise, don't even think like that. whatever he needs during an attack give it to him, that's the best advice i can give you. ............2late
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domm
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Re: ok so i did it wrong, i'm new here.
« Reply #12 on: Sep 25th, 2002, 5:16pm » |
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skett - please let us know if the O2 works for him.
Not sure why you titled this the way you did. You did nothing wrong and you know what? We were all new at this once. I've been a clusterhead for six years now and I still have much to learn from this great group of people. I only hope I can give back some of what I've taken.
Keep trying to find the right combo of support and help for you, and keep in mind, we care. Get your guy on here, we need him also.
domm
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Bob P
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Re: ok so i did it wrong, i'm new here.
« Reply #13 on: Sep 25th, 2002, 5:36pm » |
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skett,
Did we talk via e-mail last night?
All of my attacks are 10's. And they go from 0 to 10 in 5 minutes or so. I have vomited before. Sometimes from too much cafergot, sometimes from too much pain for too long a time.
Question - does the headache go away right after he vomits. If the answer is yes (as it was for me) the streneous exercise thing may work for him. A few minutes of hard exercise, squats, push-ups, jumping jacks, etc. right at the start of the headache, followed by some deep breathing may stop the headache in 5 to 10 minutes.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Cathi
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Re: ok so i did it wrong, i'm new here.
« Reply #14 on: Sep 25th, 2002, 5:52pm » |
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Sket-
WHAT THEY ALL SAID.....really! I'm a newbie-and a supporter....if all we can do is be there- then, so be it! I know you're in great company, and so is this one you love, so read, read and read some more! Someone once gave awesome advice to another newbie supporter- she said to talk to your man when he is not in the throes of a CH-ask him how HE would have you help- then, be prepared to do just as he had asked when the time comes.....aside from that, keep coming back to this site for new info and a whole lotta support, not to mention friendship! This is an awesome group of people, with soo much to give each other...just read any thread, feel the strength and the love- participate
and give as good as you get...oh, and, I'll bet he really is soo grateful that you are there by his side, Sket- now- go enjoy the easy times, gather strength from them, to keep you going in the tough times- he is lucky to have you, y'know!
Cathi 
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catlind
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Re: ok so i did it wrong, i'm new here.
« Reply #15 on: Sep 25th, 2002, 6:58pm » |
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Sket, I am sorry that I made you feel like you did things wrong. That wasn't my intention. But having been around this board for a month or two I have realized that if you post things within another thread it may not get read by everyone, and it may get lost. Your thread was important to me and I felt it needed to be addressed by as many of the great people here as could be. THat's why I asked you to start a new topic
I'm glad you did, as you see, the people here will help you with anything, you can't get a bigger more caring group of people, these people will give you their shirts off their backs, LITERALLY, if you need it.
Trust your loved one, it's not you. My hubby has a very hard time dealing with the helplessness when I'm getting hit. It's not easy on that side of the fence I'm sure. But the pain is truly agonizing. I've had 3 children, and childbirth seems like a minor annoyance in contrast to the CH.
Hang in there sweetie, the people here will take good car of you and your man
Cat
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jonny
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Re: ok so i did it wrong, i'm new here.
« Reply #16 on: Sep 25th, 2002, 7:35pm » |
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Im not taking on a good car or man, I like chicks and trucks.......LOL
Gotcha, Cat.....LOL
....................jonny
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Charlie
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Re: ok so i did it wrong, i'm new here.
« Reply #17 on: Sep 25th, 2002, 8:25pm » |
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Welcome to our little asylum:
First, you have nothing to do with the severity. Secondly, they are harmless. They just hurt like hell. Nothing is more painful. I too had Kip 10s which usually lasted between 15 and 30 minutes. Rarely, they lasted a little longer.
Your doctor and others here know much more about drugs than I but there good ones and many anti-epilepsy drugs are used for CH. Now that you have oxygen ask others to explain how to use it effectively.
For me, I believe stress and emotional things are not a big factor. Mine disappeared during the most stressful time of my life and the older I get, (56) the more I think I’m a benefit of the age factor. There is some evidence that age may have an effect. Ch can appear in late life however,
My neurologist treated this as a vascular disease as it behaves as one. With that in mind: Strenuous..even violent exercise has been helpful to some. One man stands barefoot on a cold garage floor. Anything that even slightly draws blood away from the dilated vessel is worth a try.
Keep reading this site and posts. You will find something here to help mitigate his pain from these pages. Here are two links: One is for Simon Bower's letter which helps explain to others this horror. It's well worth printing. The other is my neurologist's circulatory technique which I used very effectively.
http://www.ouch-uk.org/ch/note_colleagues.cfm
http://www.chhelp.org/circ.html
Charlie
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Virginia
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Re: ok so i did it wrong, i'm new here.
« Reply #18 on: Sep 26th, 2002, 8:21pm » |
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Don't worry about the vomiting. As my h/a's have gotten worse over the years, vomiting has been a new thing that has been added to my routine. It happens during the weeks when the h/a's are at their absolute worst! I think it's a combination of too much meds and the fact that I am crying uncontrollably which causes the stomact to contract, thus making me vomit. I also have a very low tolerance for the pain meds they give in ER so more often than not, I come home from the ER and throw up.
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The Clusterhead formerly known as 9erfan.
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Drk^Angel
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Re: ok so i did it wrong, i'm new here.
« Reply #19 on: Sep 26th, 2002, 11:05pm » |
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Welcome to the board! Sorry that the beast is making you watch the terrible, slaughter house horror he does to your clusterhead's cranium (as if the beast isn't bad enough to the clusterhead, but he seems to love to involve the family too... C'est la vie... I say the two of you gang up, and kick the beast's ass). Welcome to the family!
PFDAN............................ Drk^Angel
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skettico
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Re: ok so i did it wrong, i'm new here.
« Reply #20 on: Sep 27th, 2002, 2:51pm » |
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Thank you guys so much. I feel so thankful to have this place to turn to. He got a 10+ last night and said a few things I wasn't certain how to take but I understand it's not him talking and I am prepared. I have a strong will to fight "the beast" and so does he. I would take it from each of you if I could and throw it away. But I can not. I can only say stay strong as you have shown me how. And no one has offended me, I just didn't know where to go to start one of these, kinda new to the internet also
He was supposed to get the oxygen yesterday but he got hit, and I cant pick it up. THey are going to call when he can pick it up, they got the scrip wrong too, he has to have the oxygen with the bag under it,. I can't wait, it will help SO much. I didn't know what this site was about so I didn't give too much personal but my e mail is skettico@yahoo.com and I have good ears. New to the ch thing, but I used to help counsil. =) Thanks again guys. I'll be back.
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skettico
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Re: ok so i did it wrong, i'm new here.
« Reply #21 on: Sep 27th, 2002, 2:55pm » |
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Sorry for the add on again but, I meant to ask.
He gets REAL blood shot eyes right before and all during his ch's. His muscles also tense up real REAL bad on what ever side of the body it's on.....does that mean anything?
He's had them for 8 years.
Thanks guys.
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jonny
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Re: ok so i did it wrong, i'm new here.
« Reply #22 on: Sep 27th, 2002, 3:01pm » |
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Skett......LOL
The first thing you have to do is stop saying your sorry for doing what this website is for....asking questions.
My eyes get blood shot (Shut up, Bob, Slammy and Don) during CH but the effected eye swells some what and tears.
As for muscles on that side I never had that.
Your doing good, Skett!!...keep it up (Shut up Slammy!)
...........................jonny
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skettico
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Re: ok so i did it wrong, i'm new here.
« Reply #23 on: Sep 27th, 2002, 3:02pm » |
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And another thing, Any of you a supporter? Cause I have a real hard time sometimes getting up at night to help him when he gets hit, and MAN I WANT TO, but for some reason I won't get up. And it makes me so mad cause I feel like I done screwed up you know? Any thing you guys do that helps you get up?
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skettico
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Re: ok so i did it wrong, i'm new here.
« Reply #24 on: Sep 27th, 2002, 3:06pm » |
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Thanks Johnny. I think Michael would like you guys alot, I gotta get him in here. Are you guys here at night?
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