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        New Message Board Archives >> 2003 Posts >> Up All Night
        
(Message started by: Kenzie60 on Apr 14^th, 2003, 10:20am)

Title: Up All Night
Post by Kenzie60 on Apr 14^th, 2003, 10:20am

Once again at 2:15 am I was hit with a 10 cluster. I wanted to kill myself. It only lasted about one hour, but is seemed like days. My imitrex injections no longer are effective and I don't know what else to do. My neuro doesn't have an appointment until May 27.

Title: Re: Up All Night
Post by echo on Apr 14^th, 2003, 10:30am

I know exactly how you feel. I'm getting tired of my daily 2am and 4am dances with the beast. Hopefully the neuro will have a cancellation sometime prior to 5/27 so you can get in earlier.

Hang in there.

Title: Re: Up All Night
Post by Roxy on Apr 14^th, 2003, 11:08am

Hey Kenzie60.....do you have 02?

PFDAN,
Tracey

Title: Re: Up All Night
Post by TomM on Apr 14^th, 2003, 11:47am

Hang in there and don't give up!

TomM

Title: Re: Up All Night
Post by catlind on Apr 14^th, 2003, 11:48am

Sorry you are suffering so bad :(

This beast is hell for sure. Ya know, many people emphasize that a CH only lasts 2-3 hours. I always felt that they lasted longer. In reality, once I started to actually monitor them properly, they don't last more than that. But every minute of it feels like an hour.

O2 helps to get through. It's a great thing to have. Have you called and told the neuro to call you if there's any cancellations?

We all think about ending it, but that's a permanent solution to a temporary problem. It really isn't worth it. There is bound to be something out there to help you, keep up the fight. Hope you find some relief soon.

Cat

Title: Re: Up All Night
Post by cathy on Apr 14^th, 2003, 11:51am

:'( :'(...Sorry your having a bad time, just remember we are all here for you.!!!!

Cathy

Title: Re: Up All Night
Post by BruceD on Apr 14^th, 2003, 12:00pm

Kenzie,

Sorry to hear you're having a bad time. I'll back up Roxy's question ... do you have/have you tried O2? It works wonders for me!

Take care
BruceD

Title: Re: Up All Night
Post by Kenzie60 on Apr 14^th, 2003, 12:13pm

No I don't have and o2. Do I need a script for it??? I am willing to try anything.
Roseanne

Title: Re: Up All Night
Post by Frank on Apr 14^th, 2003, 1:08pm

on 04/14/03 at 10:20:16, Kenzie60 wrote:

You call your neuro and tell them that you got hit with a 10, you thought about killing yourself, injections don't work, and what can they do about that May 27 date.

Title: Re: Up All Night
Post by BruceD on Apr 14^th, 2003, 1:11pm

Kenzie,

Not4Hire (with help) has been working on a new Oxygen button for the navigation bar (to the left) You can check out the prototype here in the current topic below:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1050334490

Have a look and there is a ton of info here about O2 as an abortive. I know it sounds too easy, but it DOES work and it is worth a try.

The key (I'm sure you'll see this) is to use a non-rebreather mask and relatively high flow rates (use a 15 lpm regulator). As far as scripts, I think some states require them for the non-rebreather mask but that one is readily available online.

Take care
BruceD

Title: Re: Up All Night
Post by Margi on Apr 14^th, 2003, 1:22pm

Frank's exactly right here, Kenzie. Run over the receptionist, scream the place down if you have to, but do NOT accept that May 27 date. A good cluster neuro does NOT put his cluster patients off like that, (especially if he actually understands what clusters are). It could also be his support staff doesn't understand the urgency we all reach at the peak of a cluster cycle and they just try to schedule us like everyone else.
This is how I finally got my husband in to see our neuro...I played the suicide card. Sometimes we gotta do what we gotta do. Mike wasn't suicidal, but we were also given the 'waiting list' song and dance and it just wasn't acceptable to us at that point. A few heated emails later, they agreed to see him that afternoon.
You can get a 'script from your neuro for oxygen. Or you can use welders' oxygen if you have to - the only real difference is method of delivery and it's much safer and more effective with the mask and regulator.

Title: Re: Up All Night
Post by Big_Dan on Apr 14^th, 2003, 1:26pm

Hey, Kenzie....

I know what you're going through, 'cept mine really did last 3 hours....

Just call your Head Doc and give them the rundown, and specifically ask for O2.....

.... and read my third "favorite quote"....

-Big Dan

Title: Re: Up All Night
Post by Mr.Happy on Apr 14^th, 2003, 2:08pm

on 04/14/03 at 12:13:05, Kenzie60 wrote:

No I don't have and o2. Do I need a script for it??? I am willing to try anything.
Roseanne

Rosie,
RUN.......... Do Not Walk....to the Neuro's office, and wait there till you have a script for "Oxygen for Cluster Headaches" in your hands. N4H has an entire compendium (http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm) on the benefits of using O2 (just released for your perusal). There's a _VERY_ good reason why everyone is yelling about using O2. Get that script immediately......it truly fits into the "Try Anything" category.

While you're at it, read Georgia's cheese/cider testimonial " Sweet fancy moses....it actually works!!! (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1050123842) '

Then, please eat some Brown Apples (http://www.clusterheadaches.org/resources/non_script_treat.htm).......if for no other reason than to Shut Me Up on the topic! :)

Mfff glrnb fufffum,
RJ

Title: Re: Up All Night
Post by Bonniegirl on Apr 15^th, 2003, 12:58pm

:'(I feel so bad for the pain you're going thru. I'm really new here, and don't have much to offer, but,hey, I CAN say that I know exactly how you are feeling. I,too, was seriously thinking that I just could not take one more second of the beast. I was starting to think that ending it all would at least end the hell I was experiencing. But, thank God I got my ass on this board and started reading, and learning, and now, even though I still have some harrowing moments :-/, I'm starting to figure out what helps,what doesn't, etc... Not only that, it's almost as if I get a good amount of that strength back that the beast tries so hard to wrestle from me .Hang in there, I hope you get relief soon. :-*-Bonniegirl

Title: Re: Up All Night
Post by stevek on Apr 15^th, 2003, 3:00pm

I’m real sorry that you are having a bad time. For me, as the cycle wears on, it becomes more important that I get the imitrex/O2 early, which is hard if you are asleep. I still use my old stand by meds, I don’t know if there are better ones now. I don’t know if you have tried Zomig. For me it worked slower than imitrex so it wasn’t much use in aborting a headache but I found that I would not get the early morning CH if I took one when I went to bed. I also sleep sitting up and near the O2 and imitrex injection. The doctors have told me not to take zomig and imitrex within 24 hours of each other, but I have during the “I don’t care if I die” times.

Don’t wait for an appointment. Call the doctor’s office and let them know what you need. Get the info on O2 and tell them you exactly what you want and that you need it now.

Good luck, Take care, SteveK

Title: Re: Up All Night
Post by okeefenokee on Apr 15^th, 2003, 8:45pm

I can empathize.I am 51 years old,and have suffered since age 21.Hadn't had a cluster since 1999 until recently.Took WAY too many Imitrix injections last night and today doc put me on something new called Relpax. Ever heard of it?

Title: Re: Up All Night
Post by Mark C on Apr 16^th, 2003, 9:18am

Hang on Kenzie! FIGHT FIGHT!

Relpax (http://www.relpax.com/pdf/ppi_final.pdf)

Goody...another Triptan! Let us know how it works.

Title: Re: Up All Night
Post by catlind on Apr 16^th, 2003, 10:34am

Yes definitely let us know how it works. It was only approved here in Feb/Mar. I'm trying to get my docs to let me try it! Keep us posted.

Cat

Title: Re: Up All Night
Post by cootie on Apr 16^th, 2003, 10:44am

Good luck Kenzie60........do what ya gotta do ta git into that nero FAST and at least get the O2 script...been hearin good stuff about O2.......mite not wanna threaten ta kill the receptionist while tryin ta git past her and in pronto.....but am sure it will be a thought ! When receptionists try to rule it sucks Pam

Title: Re: Up All Night
Post by Kenzie60 on Apr 16^th, 2003, 6:50pm

I finally got an appointment on Thurs. morning. Hopefully things will work out.
Roseanne :D

Title: Re: Up All Night
Post by suzy617 on Apr 16^th, 2003, 7:09pm

Did you kill the receptionist? :o

Good luck to ya,

suzy

Title: Re: Up All Night
Post by jonny on Apr 16^th, 2003, 7:25pm

Try taking Dramamine when you go to bed, keeps you from REM sleep where the beast lives.

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

Title: Re: Up All Night
Post by don on Apr 16^th, 2003, 8:53pm

First this,

Quote:

I'm really new here, and don't have much to offer

then this,

Quote:

even though I still have some harrowing moments , I'm starting to figure out what helps,what doesn't, etc... Not only that, it's almost as if I get a good amount of that strength back that the beast tries so hard to wrestle from me .Hang in there, I hope you get relief soon. -Bonniegirl

Now this
Bonniegirl you just offered the two most valuable things one sufferer can offer to another.

Hope and support.

Title: Re: Up All Night
Post by Bonniegirl on Apr 18^th, 2003, 10:37am

You know, if I can pass along what I'm getting from you guys, I'll be stoked. ;D PFDAN's for us all!!!!! :-*-Bonniegirl