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        New Message Board Archives >> Jan-Mar 2004 >> Well it is official -- 
        
(Message started by: David A on Mar 1^st, 2004, 11:06pm)

Title: Well it is official --
Post by David A on Mar 1^st, 2004, 11:06pm

Went to the Nero this morning --- after going thru $2,600 of CT scans and other tests. The diagnosis is that it I defintly have cluster headaches.

Shortly after seeing the Nero and me and my wife picking my teen boys up from school on the way home I got hit --- real hard. Ended up using one of the Imitrex shots that the doc gave me to abort it but in almost a month that was the first time that my boy seen me have a real bad hit.

It really scared them and took alot of conviencing to assure them that I was gona be O.K. --- now i just gotta convience myself.

got the o2 script and one for verapamil and one for midrin --- did not get one for Imitrex because I just simply can't afford that stuff (no insurance of any kind).

If any of you guys are familure with these Meds please advise.

Thanks david

Title: Re: Well it is official --
Post by Kevin_M on Mar 1^st, 2004, 11:20pm

David,

Oxygen and verap are useful stuff for many. That's all I know about. Keep 'um handy and stay aboard. Keep convincing your son you'll be ok by taking care of yourself. Slay the dragon for him!

Kevin M
Dirty dented smoked armor and all.

Title: Re: Well it is official --
Post by Cerberus on Mar 2^nd, 2004, 12:21am

The CH still really scares the hell outta the youngns
My youngest is convinced that I am dying.....poor thing.

I been on midrin, it helps for the first 5 minutes but thats it does nothing otherwise. The O2 should abort quickly if you get on it right away and the verapamil should help keep the cycle in check. Of course that is IF they work for you.

Sorry you're gettin hit,
Ramon

Title: Re: Well it is official --
Post by Linda_Howell on Mar 2^nd, 2004, 12:27am

David,

The oxygen you were prescribed is a good thing, since you can't afford the Imitrex. Most of us here can't. afford ...OR our Ins. Co's will only allow 6 Imitrex per month.

Verapamil is also a good preventative. But you didn'[t say what the dosage wasthat you are taking. Too little.....and it won't be effective. Too much... and you'll be in the "Twi-light Zone"

Teen-age boys by the way, might just be your biggest supporter. Sit them down and explain it all to them. Don't pull any punches and don't lie. My bet is that those kids will stand up for you in a second once you've told them what this is all about.

(if not. SEND THEM TO ME)

Linda H

Title: Re: Well it is official --
Post by thebbz on Mar 2^nd, 2004, 12:28am

Sorry for the news. They feel your pain too. My wife gets all itchy when the demon strikes . They won't kill you. Even though it feels like it. They need to know that. As hard as it is keep reassuring them. All the best. thebbz ;)

Title: Re: Well it is official --
Post by bobkip on Mar 2^nd, 2004, 1:04pm

Hi David,
Sounds like your neuro knows what he's doing. I can't advise on the meds 'cause I rely solely on O2 to keep the beast under control. It doesn't work for everyone and it doesn't work all of the time. But to worrk at all it MUST be done right. You'll need a flow regulator that will give you at least 10 l/m flow and a non-rebreather mask. You have to get on it early, the 1st 5 minutes or so. I've found that by the time the CH has really started to pound it just a waste of gas tho I've had it build while on O2 aand then abort. Give it 10 to 15 minutes, if it hasn't worked by then it probably isn't gonna. Breath deeply and slowly; I time my breaths to the filling of the bag on the mask. DO NOT sleep with it, too much O2 at this high flow rate can cause lung problems and there is a risk of suffication if the tank runs out. Best of luck.
Kip

Title: Re: Well it is official --
Post by Charlie on Mar 2^nd, 2004, 5:30pm

Sorry you have to deal with this horror.

Linda is right though. Kids handle this stuff pretty well, younger ones even better. Your's will probably be on line bugging us and others about CH. Good for them.

Let us know how you're getting along.

Charlie

Title: Re: Well it is official --
Post by Tiannia on Mar 2^nd, 2004, 5:34pm

My daughter is 6 and I have always been honest about my ha and what they do and how they feel so that 1 she is not scared of them and 2 she can help me in the ways that she can help, like getting me a cold pack and washcloth and such. My son is `18 months and he just rubs my head and rocks with me but it is still helping. Kids are naturally strong, just let them know what is going on.

Sorry that you have to deal with the beast, but together we will kick his ass.

Tiannia

Title: Re: Well it is official --
Post by Belle on Mar 2^nd, 2004, 5:45pm

I totally agree with you guys. My son is 7 and my daughter is 3 and when momma gets a HA Hailee rubs my back as I rock while Gage grabs my cold pack. They know to keep quiet and not to bother me until the HA goes. My two best friends, I love them.

PF wishes go out to ya,

Belle
::)

Title: Re: Well it is official --
Post by jonny on Mar 2^nd, 2004, 5:51pm

Somebody hand him a fucking oar!

Welcome aboard, Dude

........................jonny ;;D

Title: Re: Well it is official --
Post by stuey on Mar 2^nd, 2004, 5:59pm

David, I take 960 verapamil SR and that stopped my cycle. That along with 50 mg of elavil. Hope this helps.

Title: Re: Well it is official --
Post by Callico_Kid on Mar 4^th, 2004, 2:00am

Hi David,

Welcome aboard. Sorry your kids saw you get hit, but as Linda and others said, they can be your biggest support if you handle it right.

I am also on Verap, and would not go without it. I'm chronic now, and it does not stop the HA's, but it does definately cut down the frequency and the severity tremendously. Work closely with your Neuro to establish what level you can tolerate, and then I would suggest you discuss adding Lithium to it. Verap by itself was not nearly as effective as with the Lithium. Presently I am on 240 mg of Verap twice a day and 300mg of Lithium twice a day. When I tried bumping the Verap higher my blood pressure bottomed and I almost passed out while driving, so I would definately recommend finding your tolerance level before driving or operating machinery without someone with you.

O2 is a lifesaver, but as Bob Kip said, it has to be used right. Check the oxygen info tab to the left.

Jerry

Title: Re: Well it is official --
Post by Mark C on Mar 4^th, 2004, 8:54pm

Welcome...and sorry...glad you are here.
Click on the dot below for prime CH relief information.

. (http://www.clusterbusters.com/)

;;D