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Topic: Long time Cluster head (Read 815 times) |
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gfdfirefighter
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Long time Cluster head
« on: Oct 25th, 2005, 5:54pm » |
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First of all I would like to say I think this site is great. 15 years ago when I started dealing with the headaches from hell there was no support at all as a matter of fact most doctors didn't even no what cluster headaches where. well my episodes started when I was 30 and have like clock work hit me every five years. well guess what it's been five years and I have been dealing with them now since August . they started out about six times a night lasting about 20 to 30 minutes with the pain that is like no other. being on a fire dept I had access to O2 but latley that hasen't been working for me. My Doctor has given me a script that has at least dropped them down to 3 times a night. I have an oppintment with a nero on monday so hopefully this nightmare will end soon.
You all take care and keep the faith
Smiley
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Les we never forget 9/11/01 we lost 343 american Hero's(God Has Got One Heck Of A Fire Dept)
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Jonny
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Re: Long time Cluster head
« Reply #1 on: Oct 25th, 2005, 6:00pm » |
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It must be a real bitch being a firefighter, man.....hang with us for awhile......for sure you will find some info here that will help you out.
Real sorry you have to be here, but, there is no place on earth with more info about CH than here.
.........................................jonny
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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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gfdfirefighter
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Re: Long time Cluster head
« Reply #2 on: Oct 25th, 2005, 6:08pm » |
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Thanks Johnny
I will stay awhile this site has alot of great information.
It will take me some time to get throught it all hopefully when I do my headaches will be gone 
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Les we never forget 9/11/01 we lost 343 american Hero's(God Has Got One Heck Of A Fire Dept)
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Jasmyn
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Re: Long time Cluster head
« Reply #3 on: Oct 25th, 2005, 6:08pm » |
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Welcome and like Jonny said this is the best place to be.
Hope you get a break soon!
Jas 
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Jazz
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rextangle
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Re: Long time Cluster head
« Reply #4 on: Oct 25th, 2005, 6:14pm » |
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Welcome to the club Smiley!
Ask all the questions you have and read posts and archives.
The best info on CH is definitely here.
Firefighter is on one of the most noble profession.
When you say 02 doesn't work anymore, I'm wondering if you're using the right LPM.
12-15 LPM is what most of us use. Make sure to use a non-rebreather mask.
Take care,
Rex
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E-Double
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Re: Long time Cluster head
« Reply #5 on: Oct 25th, 2005, 6:21pm » |
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Pleasure to "meet" you Smiley,
No matter how long you have had this affliction, there is plenty to learn and share.
Wishing you PF (pain free) times.
E
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I can't believe that I have to bang my
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pattik
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Re: Long time Cluster head
« Reply #6 on: Oct 25th, 2005, 6:24pm » |
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Welcome, Smiley...sorry you had the need to find this board, but, as Jonny said, hang with us for a while here. This site has a lot of useful information to help you, and the people here are great supporters. Feel free to ask questions when you need.
Patti
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Grandma_Sweet_Boy
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Re: Long time Cluster head
« Reply #7 on: Oct 25th, 2005, 6:25pm » |
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Hey Smiley - it's nice to meet you but sorry to hear you're one of us.
I have a special soft place in my heart for firefighters. My Dad was a fire chief. You guys are my heroes!
Keep up the good fight. Stick around - there are lots of folks here that will extend to you the warmest of welcomes and give you tons of great and helpful tips.
Carol
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Lizzie2
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Re: Long time Cluster head
« Reply #8 on: Oct 25th, 2005, 6:27pm » |
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Welcome aboard!
Sorry you have to be here, but glad you've found us. 
I'm an RN in a neonatal unit in Philadelphia, so you'd think I have access to the O2 as well but unbelievably, I don't! Mainly an issue with the fact that there isn't a place to go use it where there isn't patient care going on. I used to work in the ED and there, people were always offering the O2. Something about those emergency personnel
Read up and ask lots of questions!
Take care!
Carrie
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gfdfirefighter
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Re: Long time Cluster head
« Reply #9 on: Oct 25th, 2005, 6:42pm » |
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Hi Rextanlge
The O2 works for me as long as i get can to it in time. the problem is now that after i knock one CH down I am hit with another within 2 hours. If I don't use the O2 I get at least a 4 hour break.
Are you using O2 and has this happend to you
Smiley
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Les we never forget 9/11/01 we lost 343 american Hero's(God Has Got One Heck Of A Fire Dept)
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jimmers
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Re: Long time Cluster head
« Reply #10 on: Oct 25th, 2005, 7:02pm » |
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Welcome to the board smiley. I'm glad your here, but sad that you have to be. But this place ROCKS! Stick around, we'll have lots of fun.
It won't be long before some of the girls here ask you about your hose LMAO
Seeya,
Jimmers
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Jonny
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Re: Long time Cluster head
« Reply #11 on: Oct 25th, 2005, 7:06pm » |
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Smiley....I see your in Greenwood, I lived near there for about a year in the 90's......hows the weather in southern California this week?...Man I miss those days!!
..........................jonny
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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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rextangle
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Re: Long time Cluster head
« Reply #12 on: Oct 25th, 2005, 7:27pm » |
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Hey Smiley (assuming that's your name),
The thing with 02 is to get to it as fast as possible.
If you miss that call, you're in for quite a ride.
So to answer your question, yes I use 02 and yes it has happened to me.
Best of luck to you,
Rex
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Redd
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Re: Long time Cluster head
« Reply #13 on: Oct 25th, 2005, 7:38pm » |
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Welcome aboard Smiley...
Glad to have a proud member of our protective forces amoung us.
There are lots of things to learn many innovative things have been brought to light. Read read and read some more...
Oh and about that hose comment?
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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vig
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Re: Long time Cluster head
« Reply #14 on: Oct 25th, 2005, 8:20pm » |
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Hey Smiley
           
not sure whiCH Smiley, though.
welcome
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Racer1_NC
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Re: Long time Cluster head
« Reply #15 on: Oct 25th, 2005, 11:47pm » |
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Welcome aboard Smiley! Hate you have CH, but you've found one of the best places on earth for support!
While you are at it, check out the OUCH site if you haven't done so already.http://www.clusterheadaches.org
Bill
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Donna_D.
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Re: Long time Cluster head
« Reply #16 on: Oct 26th, 2005, 2:31am » |
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Hi!!
Welcome to the family...and that is just what you have found here! A Whole Family of Cluster Heads!! Sorry you have to be here but you have truly found a home with us!
Like Bill says...join OUCH...
Read all the info available on this site and on OUCH and if you have ANY questions...feel free to ask!
DD
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 The information contained above is for the expressed use of fellow clusterheads and their supporters. Any misuse of this information by any of my "Ex's" is considered to be creepy and a form of harassment and will be duly noted by the ch.com webmaster
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Ghost
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Re: Long time Cluster head
« Reply #17 on: Oct 26th, 2005, 3:03am » |
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As the others have sd welcome and I am sorry that you had to find us. Welcome to the pain gang we are not such a bad family and we as a whole will try to help whenever we can. This group of people have helped me in sooo many ways and at so many levels its hard to explain. I am grateful to everyone here and cant say enough good about them all. You have found a true home here and will see these are the best folks in the world!
Mike
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Lizzie2
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Re: Long time Cluster head
« Reply #18 on: Oct 26th, 2005, 7:56am » |
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on Oct 25th, 2005, 6:42pm, gfdfirefighter wrote:Hi Rextanlge
The O2 works for me as long as i get can to it in time. the problem is now that after i knock one CH down I am hit with another within 2 hours. If I don't use the O2 I get at least a 4 hour break.
Are you using O2 and has this happend to you
Smiley |
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Hi there Smiley,
I know you wrote this message to Rex, but thought I'd throw in my 0.02 as well! I recently changed insurance providers in August as well as moving to a new town in the Philadelphia suburbs. During that time, I returned the 4 E tanks and 1 H tank I had because my new insurance required that I go through their home health supplier and I also needed to find somewhere closer to my new apartment. (Well...the place I have to go to is actually nowhere near here...but that's what the insurance wiill pay for, so that's where I go!)
So anyways...I was without O2 for a month or more, and it was the worst month...possibly one of the worst of my life! I don't even know what I did before O2, and there are some people who've been around this site for awhile who remember me being bad about persisting and forcing my doc to get it to me until I'd been suffering for some time! (I didn't have an official diagnosis when I joined this site...I have 3 different major headache types, and so I was lumping the symptoms all together and it seemed like a whole mix of nothing, but in the end...I had to separate each symptom out in order to get an accurate diagnosis which GREATLY helped in my treatment plans!)
Anyways I digress (get to know me and you'll see this is my norm LOL) So I've found that if I can nail an attack with O2 within the first 5 minutes, then it'll be gone by 20 minutes or so. And the rest will come whenever they come, but certainly no more frequently for me than usual. Since January 2004, my CH's have been more random, whereas when I first had them, they were predictible to the hour. So I don't have a good guage of saying, "Well I killed the 5pm attack with O2 so let's see if I get my 7pm attack at 7 or if it comes early since I used O2." That would be a nice way to guage it!
During the month without O2, I had one day where I damn near lost my mind. I know there are people on this site who go through more than this on a daily basis, but I had 10 attacks in the space of one evening/night. I had perhaps 10 minutes before the next one would hit...and it was all out. Nothing was stopping it,and I threw everything I had at trying to kill these attacks. I had to work the next day so I didn't even fathom going to the ER (although I should have, in retrospect). I felt like once my trigeminal nerve and entire brain were triggered off by one or two of these things, if I didn't stop them, my whole right side of my face felt hypersensitized to shooting back into it and being in absolutely excruciating pain.
If I'd have been able to kill one of those attacks with O2, then maybe I wouldn't have had to suffer through 10 that night...at least that's my take on it. 10 was the most I've ever had in one day, and I never want to experience that again. I've never had 10 attacks in one day when I had O2 available, so I do believe that I do better overall, even with a slightly decreased frequency, when I have my O2.
But I totally understand what you're saying about it seeming like they come on more frequently with O2. While I personally have no explanation for that, several people have mentioned that either here or on the OUCH sites.
Now you've been introduced to your first rambling Lizzie2 post. LOL Hope you're having a PF (pain free) day!
Carrie
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Lizzie2
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Re: Long time Cluster head
« Reply #19 on: Oct 26th, 2005, 7:57am » |
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on Oct 26th, 2005, 3:03am, ghost62 wrote:As the others have sd welcome and I am sorry that you had to find us. Welcome to the pain gang we are not such a bad family and we as a whole will try to help whenever we can. This group of people have helped me in sooo many ways and at so many levels its hard to explain. I am grateful to everyone here and cant say enough good about them all. You have found a true home here and will see these are the best folks in the world!
Mike |
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Ghostie that's the sweetest thing!!! You really summed up my feelings about this place in a really great paragraph.
Definitely made me smile, and after working in the NICU all night, I needed that!!!
Hugz,
Carrie 
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gfdfirefighter
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Re: Long time Cluster head
« Reply #20 on: Oct 26th, 2005, 10:49am » |
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Hi All
Thanks for all your messages this is a great family.
Reminds me of the family i am in with the fire dept.
I read threw all the advise on the O2 use and will continue to use it until i am PF @ 2:00am i had a call for a auto accident that's when the bars close here in Cali.
so any way as it goes i was starting to get hit with the devil and grabbed a bottle of O2 on my way. So there iam huffin on the O2 on the way to the Scene. Naturaly getting ribbed by the rest of the guys.By the time we got there the headache was gone and the adren was kicking in. Did my job(cut the drunk out of his car) went back to the station and slept for the rest of the night. So last night was a good one only had to deal with them twice. Oh Yea I have named my headaches for the ones that last longer than a half hour that's a ClusterF&** for the ones that last 15min or less Wisbang. fell free to use these while they hit
it helps. so last night was a clusterF*&^% and a wisbang kind of night.
O yea about the hose thing well I don't like to brag
You all have a great day
Smiley
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Les we never forget 9/11/01 we lost 343 american Hero's(God Has Got One Heck Of A Fire Dept)
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mcf69
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Re: Long time Cluster head
« Reply #21 on: Oct 26th, 2005, 11:41am » |
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Hey Smiley, great to have aother FF on the board, maybe they'll stop harrassing me about hoses now Sorry you had to find us, but you definately found the right place for all things cluster, there's a ton of info on here and alot of great people to help. If you need anything, have any questions, or just want to shoot the s**t, give me a holler.
Ben
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gfdfirefighter
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Re: Long time Cluster head
« Reply #22 on: Oct 26th, 2005, 11:55am » |
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Thanks Ben
It's nice too know I have a brother that knows what CH's are like. Most of the guys at my station are newbee's and think that I am just an old fart that needs O2 to keep going But the great thing is I run circles around these youngin's. I just know how to work smart not hard .
Have a great day
Smiley
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Les we never forget 9/11/01 we lost 343 american Hero's(God Has Got One Heck Of A Fire Dept)
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gfdfirefighter
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Re: Long time Cluster head
« Reply #23 on: Oct 26th, 2005, 11:59am » |
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Hi Jonny
Actually I live in Greenwood Nor-Cal it is in the sierra foothills. But I was down in so cal in September putting the woop A@@ on a wildland fire there.
Smiley
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Les we never forget 9/11/01 we lost 343 american Hero's(God Has Got One Heck Of A Fire Dept)
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Redd
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Re: Long time Cluster head
« Reply #24 on: Oct 27th, 2005, 6:23pm » |
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on Oct 26th, 2005, 10:49am, gfdfirefighter wrote:
O yea about the hose thing well I don't like to brag
Smiley |
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Go for it hun, Jonny does it all the time....
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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