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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Long time Cluster head
        
(Message started by: gfdfirefighter on Oct 25^th, 2005, 5:54pm)

Title: Long time Cluster head
Post by gfdfirefighter on Oct 25^th, 2005, 5:54pm

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

Title: Re: Long time Cluster head
Post by Jonny on Oct 25^th, 2005, 6:00pm

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

Title: Re: Long time Cluster head
Post by gfdfirefighter on Oct 25^th, 2005, 6:08pm

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 ;;D

Title: Re: Long time Cluster head
Post by Jasmyn on Oct 25^th, 2005, 6:08pm

Welcome and like Jonny said this is the best place to be.

Hope you get a break soon!

Jas ;)

Title: Re: Long time Cluster head
Post by rextangle on Oct 25^th, 2005, 6:14pm

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

Title: Re: Long time Cluster head
Post by E-Double on Oct 25^th, 2005, 6:21pm

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

Title: Re: Long time Cluster head
Post by pattik on Oct 25^th, 2005, 6:24pm

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

Title: Re: Long time Cluster head
Post by Grandma_Sweet_Boy on Oct 25^th, 2005, 6:25pm

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

Title: Re: Long time Cluster head
Post by Lizzie2 on Oct 25^th, 2005, 6:27pm

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 :)

Title: Re: Long time Cluster head
Post by gfdfirefighter on Oct 25^th, 2005, 6:42pm

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

Title: Re: Long time Cluster head
Post by jimmers on Oct 25^th, 2005, 7:02pm

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 ;;DLMAO

Seeya,

Jimmers

Title: Re: Long time Cluster head
Post by Jonny on Oct 25^th, 2005, 7:06pm

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

Title: Re: Long time Cluster head
Post by rextangle on Oct 25^th, 2005, 7:27pm

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

Title: Re: Long time Cluster head
Post by Redd715 on Oct 25^th, 2005, 7:38pm

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? ;;D

Title: Re: Long time Cluster head
Post by vig on Oct 25^th, 2005, 8:20pm

Hey Smiley
:) ;) :D ;;D :( >:( :o 8) [smiley=huh.gif] ::) :P :-[ :-/ :'( [smiley=laugh.gif]
not sure whiCH Smiley, though.
welcome

Title: Re: Long time Cluster head
Post by Racer1_NC on Oct 25^th, 2005, 11:47pm

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

Title: Re: Long time Cluster head
Post by Donna_D. on Oct 26^th, 2005, 2:31am

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

Title: Re: Long time Cluster head
Post by ghost62 on Oct 26^th, 2005, 3:03am

As the others have sd welcome and I am sorry that you had to find us. Welcome to the pain gang ;;D 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

Title: Re: Long time Cluster head
Post by Lizzie2 on Oct 26^th, 2005, 7:56am

on 10/25/05 at 18:42:31, gfdfirefighter wrote:

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 :)

Title: Re: Long time Cluster head
Post by Lizzie2 on Oct 26^th, 2005, 7:57am

on 10/26/05 at 03:03:08, ghost62 wrote:

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 :) :-*

Title: Re: Long time Cluster head
Post by gfdfirefighter on Oct 26^th, 2005, 10:49am

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 ;;D

You all have a great day

Smiley

Title: Re: Long time Cluster head
Post by mcf69 on Oct 26^th, 2005, 11:41am

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

Title: Re: Long time Cluster head
Post by gfdfirefighter on Oct 26^th, 2005, 11:55am

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 ;;D.

Have a great day

Smiley

Title: Re: Long time Cluster head
Post by gfdfirefighter on Oct 26^th, 2005, 11:59am

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

Title: Re: Long time Cluster head
Post by Redd715 on Oct 27^th, 2005, 6:23pm

on 10/26/05 at 10:49:06, gfdfirefighter wrote:

O yea about the hose thing well I don't like to brag ;;D

Smiley

Go for it hun, Jonny does it all the time.... [smiley=laugh.gif]