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        New Message Board Archives >> 2005 General Board Posts >> Twingy head
        
(Message started by: cootie on Oct 16^th, 2005, 1:39am)

Title: Twingy head
Post by cootie on Oct 16^th, 2005, 1:39am

Fuck shit dam.........Brad has been gettin TWINGEs all nite.......he skipped last years cycle........I been changeing the sublect all nite long when he'd stop and get one and bring it up. I DO NOT know what to do if this shit starts back up !!!! I don' t know how to do the half doses of the shots. I think he has the auto injectors but SHIT.....I dunno what they are and STASHED them last year tryin to build up an arsenal. Jane showed him in Nashville how to do it but I dunno if he got it down pat. Dunno if he even understood how to do it cuz we....well.....we kinda don't talk about it rite now. Should I kill myself before this next cycle starts or HOPE it is a fluke. Weakest of the strong Pam

Title: Re: Twingy head
Post by E-Double on Oct 16^th, 2005, 1:43am

Take a breathe dear Pam & find your arsenal.
Better to be safe than sorry.
The trex tip is quite simple.
Reread it and he'll be ready.

Hugs,

E

Title: Re: Twingy head
Post by cootie on Oct 16^th, 2005, 1:50am

THANX.....but he is NOT gonna handle this cycle well if it happens........no no no no noooooo........mite be a mass suicide if my cats didn't need me so much Pam

I guess I need to find the trex tip.....I don't have that info you guys mention to the LEFT.........I know.....it's hear sumwhere but hopein for a FLUKE !!! I'm on the verve of a nervous breakdown as it is.....don't need no more SHIT.........

Title: Re: Twingy head
Post by E-Double on Oct 16^th, 2005, 2:01am

the tip:

1) I load the bottom part of the injector pin (the part that has the syringe in it) just like I'm going auto-inject myself as normal.

2) Once it's out of the case, I unscrew the syringe part of the pin so that it is again in two pieces. This exposes the top rim of the syringe (barely sticking out of the bottom half).

3) I use my fingernail to pull the syringe out of it's holder. I now have the syringe all by itself in my hand.

4) I remove the label from the syringe (or peel it back) so I can see the amount of solution is in the syringe.

5) I manually put the needle in my arm and use a Q-tip to manually push approx. one-third (2mg) of solution into my system (2mg - 3mg depending on the severity of the CH)

modify as needed.
i prefer an eye glass screwdriver or a thin wood peg instead of q-tip

Good luck and take deep breathes!!!!!!!!!!!!!

Title: Re: Twingy head
Post by Carl_D on Oct 16^th, 2005, 2:07am

on 10/16/05 at 02:01:16, E-Double wrote:

i prefer an eye glass screwdriver or a thin wood peg instead of q-tip

That is what I use for the auto injector syringes is a little screwdriver. Works like a charm compared to a flexible q tip.

COOTS! I hope it is a fluke, and sending some big ass vibes your way for the both of you. [smiley=hug.gif]

Peace,
Carl

Title: Re: Twingy head
Post by Jasmyn on Oct 16^th, 2005, 2:22am

Hang in there Pam!

You have to try and stay calm now. (have a smoke and a beer)

Do what E said.

Get some ice-packs ready(for packing his head) and bottles of ice-cold water(for drinking)

Have the kettle and coffee on standby.

Thats about all you can do for now so try and relax a bit.
If it happens it happens and you will cope.

<<<<<<<<<<Vibes to you and Brad>>>>>>>>>>>>>>

Good Luck

Title: Re: Twingy head
Post by Jonny on Oct 16^th, 2005, 2:47am

This is no time to panic, Coots....it will be what it will be.....just like always, everyday of every year.

Just deal with it.....I'll send naked pictures if that will help ;;D

Title: Re: Twingy head
Post by LeLimey on Oct 16^th, 2005, 4:12am

Pam does Giffy use Imitrex? He is close by I know and would help with the splitting doses in a heartbeat if he uses it. Drop him an IM, he's a good bloke.

Title: Re: Twingy head
Post by Woobie on Oct 16^th, 2005, 7:50am

Hey Coots!!!!!!!! [smiley=hug.gif]

Hang in there sister!!!!!!!!!!
Here's hopin it was just a fluke!!!!!

If not - then we'll be here to help ya thru it! :-* :-*

Title: Re: Twingy head
Post by vig on Oct 16^th, 2005, 8:15am

http://www.kdlltd.com/vig/partialImitrexShot.jpg

ouch

hang tough Pam...

Title: Re: Twingy head
Post by Sean_C on Oct 16^th, 2005, 8:20am

Unfortunately there's no off switch Coots.

Hang tough and get ready thats all, hopefully if he does come he'll check out early.

Sean.................................

Title: Re: Twingy head
Post by Peppermint on Oct 16^th, 2005, 9:38am

Coots,

Does Brad use 02? I don't remember if you ever said he does or not. Bad memory, college years effects.

Also, one thing I remember is if Brad prefers a cold washcloth to his head or if that's all ya got, put the ice in a bucket with some water and soak the cloth in there. Keeps it nice and cold. Just have ice and icepacks as ready as you can.

Hon, all you can do is be prepared. This way if one thing doesn't work you can try another.

Vibin for you pamarama.
Love,
Pep, my love to Lampshade too.

Title: Re: Twingy head
Post by Kim Y. on Oct 16^th, 2005, 9:53am

I don't even use the pen just open reach my nails in and pull out the vial but the other way works as well....

Hang tough Cootie

Title: Re: Twingy head
Post by cootie on Oct 16^th, 2005, 10:54am

THANKS again guys.....am saveing all this info. I have never even LOOKED at one of the injector deals. I THINK he has the vials maybe......gee how umprepared am I ?? We have the boxes stashed......it come in small boxes and each one is two doses so with the trex tip we figured 4 each. But I got NO IDEA what's in the box cuz they stayed sealed when his cycle ended. Never used em before. He got too carried away with the pills last time and kept takein one for every shadow or twinge fearin he'd get hit.....he can't get hit workin on a press the size of a small buss or under one. Eeekks......that could be dangerous !! I do think he got more hits cuz of the trex and the more he took the more he got. So tryin to sit back and look at it differently IF it comes back. He's been gettin twinges tho at a certain time each day but I haven't said anything to make it think harder about it. Do the little boxes with two doses each have needles or maybe there is a syringe deal that comes with each one and I fogot. Cuz like I said it is all stashed and hidden. Yeah I am uneducated in alot of areas Pam

Yeah Giff lives nearby and stopped over a while back to visit......cool dude. He said if Brad ever needed any help ta let him know. He'd prolly be the best to show him how to do it IF he needs it......still hopein for a FLUKE. Wish us luck cuz it IS that time of year !!!! Thanks for the pic and info guys !!!!!!

Title: Re: Twingy head
Post by jcmquix on Oct 16^th, 2005, 12:48pm

Pam...

Hang Tough Girl... you are not going at this alone, we are all family and we are here with you & Brad ..

It is what it is, if its time, we will all work togeather and get you guys through this...

Like they asked what about the O2 & the Melatonin ..?

Just get the weapons ready and be prepared...

We are Praying & thinking about you guys...

God Bless & PFDAN's
Charlie

Title: Re: Twingy head
Post by cootie on Oct 16^th, 2005, 4:36pm

So far today Brad has been too busy to notice anything with the head.....but he has been getting evening TWINGES so time will tell. It just got to me thinking about how UNPREPARED we are at this time with him NEVER doin injections before......can't afford to expiriement with that liquid gold. I bought some of that other melatonin but not sure of the doseages or do you follow the label. He has had alot of trouble sleeping but then......me being an insomniac and HEARING him snore I don't get toooo sympathtic. Fingers crossed for flukies Pam

Title: Re: Twingy head
Post by Redd715 on Oct 16^th, 2005, 4:54pm

When you say that each "box" has "two" doses it sounds like the stat dose to me. Vials come in lots of 5 per box.

Melatonin can be taken up to 12 mg per night regular release. Thomas knows more on the timed release melatonin, haven't found that around my parts though.

I hear ya about the snoring though dear. Ex husband would wake HIMSELF up from a sound sleep he was so loud, not to mention Dylan, Megan and myself. It's hard to explain when the baby askes you, "Mommy what is that terrible noise daddy makes when she's sleeping?"

Hang tough hun, and find the stash and get ready. Better safe than sorry. Easier to put it away not needed than to dig in a frenzy if it is.

Title: Re: Twingy head
Post by catlind on Oct 16^th, 2005, 5:06pm

Hang in there Pam, things are going to be just fine. You have too many friends here that love that lamp shade head for either of you to worry on what you are going to do.

If he has vials and syringes, he just needs to stick the needle in the vial and draw out 3mg, it's real easy. If it's the auto injector, then use the tips already given. Since I know Brad has a script for the trex, maybe I can talk to some folks I know that have the authority to deal with samples. ;)

PM me your address, I have it somewhere but it could take forever to find.

And get him hooked up with some O2!

Cat

Title: Re: Twingy head
Post by giffy76 on Oct 17^th, 2005, 12:52pm

You got my numbers!!! I would be more than happy to stop by and jab Brad [smiley=laugh.gif] Let me know.

I do half shots, it works great.

Title: Re: Twingy head
Post by Margi on Oct 17^th, 2005, 1:53pm

So sorry to hear that Brad's flirting with a cycle, Cootie. :( I know, all too well, that 'deer-in-the-headlights' feeling when one is coming on. Nowhere to run.

I sure hope he doesn't have to use the trex at all. I'm convinced it made Mike's cycle MUCH worse than it could have been. I'm hearing zomig doesn't produce the increased number of hits that trex does. Can he check into that for an abortive instead? When Mike was using imitrex (spray), he would have as many as 6-8 a day. If he could get by without it and only use O2, he was down to 1 or 2 a day.

I think we should all picket Glaxxo for producing a drug that causes more attacks. :(

Hang in there, Pam - you're a wonderful supporter, you'll get through it. Lots of us here if you ever need a shoulder, though. Don't forget that.

Title: Re: Twingy head
Post by minnie on Oct 17^th, 2005, 3:41pm

(((BRAD AND COOTIE ))) [smiley=hug.gif] [smiley=winkkiss.gif]

Oh Pam I hope it's just a fluke.Have you guys gotten a script for O2 even if it hasn't worked in the past you know that the beast is unpredictable and it may work this time.I know it's hard but try to stay calm and remember that it WILL END.you've gotten good advice just remember to take care of yourself too.I know you'll want to be there to help him unfortanately theres only so much you can do so don't be hard on yourself.If you guys need my # or want my msn name to chat IM me.I'm here if you need me.
Love to you and Lampshade
Print this out and also try to get him on here so here can see just how much he's loved and how we're all praying for him.
Minnie

Title: Re: Twingy head
Post by maffumatt on Oct 17^th, 2005, 3:59pm

Ask for the 2ml vials, you get 2 more vials than with the statdose pen per month, and use insulin needles. Good luck and I hope it is a fluke..........

Title: Re: Twingy head
Post by cootie on Oct 17^th, 2005, 11:52pm

I asked him today if he KNEW how to do the injections and 'he doesn't' really.......he thinks he got a hit last nite about a level two but then he's not on here and won't take the time.....busy guy and if he has time to relax it isn't in front of the computer. So.......not sure what is goin on as of yet. We don't dwell on it too much 'as of yet'......he's been kinda hard to get along with at times......wants to argue with every comment and that has been a warning sign before. But like I said he also has alot of job stress. Thanks for the advice and the concern's. I have told him beer will be a big no no......he had to learn that the hard way before. He only has a few some nites and on weekends but 'still' !! Still crazy after all these fears Pam

Yeah.....he needs to try O2 and learn how to use it the rite way. But if he won't.......I dunno what to say cuz he can really be a pain when it comes to tellin him what works. If he kept up here he'd be lots better advised. I can only try...............repeat what I read and let him hear what he wants.

Title: Re: Twingy head
Post by minnie on Oct 18^th, 2005, 9:33am

on 10/17/05 at 23:52:48, cootie wrote:

Yeah.....he needs to try O2 and learn how to use it the rite way. But if he won't.......I dunno what to say cuz he can really be a pain when it comes to tellin him what works. If he kept up here he'd be lots better advised. I can only try...............repeat what I read and let him hear what he wants.

Pam try to get the O2 script and have it delivered and ready.If he has the proper set up in front of him during a hit he might choose that as his ammo.Just print out the mask and flow rate info for his doc and the med supply place so you know they're giving you the right supplies tell them this is what he NEEDS .good luck hun and remember he's not mad at you it's the beast and stress at work he's mad at.You sometimes hurt the ones you love the most because they unfortinately easy targets.take the initive if you have to sometimes their just not ready to deal with anything but the day to day battle with the beast,thats where the supportrers come in to deal with the stuff they can't or don't want to.I was lucky Billy has been very pro-active in his fight with the beast,he researches and is really vocal with the doctor on what will and wont work.
good luck.
love Minnie

Title: Re: Twingy head
Post by Margi on Oct 18^th, 2005, 9:47am

I agree with Minnie, Pam. Get the O2 anyway and have it ready for him.

I know of another cluster family where the supporter was facing the same "it won't work for me" 'tude from her sufferer. She actually had the 'nads to go to the doctor and pose as a clusterhead herself and got a script for oxygen, c/w mask and high flow regulator. had it delivered and set up at home. Sure enough, hubby got hit and was freaking. She guided him to the tank and put the mask up to his face (didn't strap it on though - that would have REALLY freaked him out) and told him "breathe, damnit!"

Guess what? It aborted his attack. That and many others that followed. And now he's wondering why every clusterhead doesn't use O2..... :-X

Now, I'm not saying we should all run out and pose as clusterheads to get our sufferers what we know they need (although it was kinda cool what she did), but sometimes ya gotta do what ya gotta do. Clusterheads, stubborn? Who said THAT?! ;)

Title: Re: Twingy head
Post by cootie on Oct 18^th, 2005, 10:26am

I know my doc would script him 02 if he wanted it but I don't think most of them docs really KNOW the correct setup and I don't know it either to even tell Brad. I need to start a ch file on here and start copyin stuff to keep in case I need it fast. He had 02 years ago and gave up on it cuz he had NO IDEA what he was doing. Used some sort of mask that came with it and knew nothing about flow rates ect ect. He has a mask or sumthin I have stashed in my meds file cabnet with his stuff upstairs we got at the conventions. Would that be the rite one ? Actually a CLOSE freind works at the medical supply store that he would get it from on town.....doubt he knows much for ch info tho but he'd be the one Brad'd be dealing with to go pick one up. I think your lease or rent them ? Good grief I am finding out fast how UNEDUCATED I really am. Can't remember where I put the salt shaker let alone all the technical stuff. But it is Brad that needs to know more also. Stuborn lampshade that he is Pam

PS: Brad's dad was on oxygen for a while before he died....he didn't die from the cancer they had been treating but died from double pnemonia from too much radiation. So I think this deal with 02 with Brad has some sort of other blinder and that mite have somethin to do with it. The subcontious quorks !

Title: Re: Twingy head
Post by Cathi04 on Oct 18^th, 2005, 11:24am

Aww, Pam! Brad going into cycle.....I hope it's not soo!
I DO know one thing..girl, you are so much stronger and soo much smarter than you give yourself credit for!
You've already said what I was gonna suggest. Get a file going, put your printed info away where you can grab it, and REMEMBER.....Brad is soo lucky to have you there beside him!

Start gathering your artillery, and be sure part of that is some nice bubblebath for you, or a book, or some new walking shoes.........Brad getting through this is important, you getting thru this is EQUALLY important!!!

Remember, you are smart and strong and you have love on your side........plus ALL of us here who love you both!

Cathi

Title: Re: Twingy head
Post by Margi on Oct 18^th, 2005, 11:51am

Pam, the quick and dirty about oxygen are the two "must haves"

1. Non rebreather mask.
2. A regulator that lets the flow rate go higher than 8 litres per minute.

That's pretty much all you need to know. He needs to get on it at the first sign of an attack coming on. The toughest thing for him to do is to force himself to stay calm and sit there, breathing the O2. But...if he can do that, he should start to feel relief within about 10 minutes (at least, that's how long it takes for Mike).

The little E tanks for oxygen last about 3 headaches. Good for the car, but get him a bigger one for home. I'm not sure how it works in the states, but it should be the same: you can rent the tanks and should only have to pay when you need to refill. You should also be able to rent the regulator, but you'll probably have to buy the mask. We pay $3 a mask here.

Print out Chuck's post about O2 for him, - it's a wonderful resource.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1123513751;start=0#18

Title: Re: Twingy head
Post by lionsound on Oct 18^th, 2005, 12:12pm

O2 is definately good to have around.

he can use it on the K-2's (why wait?) or the K-10's.

Some people do have a mental block about it..because it looks big and like it's for sick people.

Pam,
if you call the medical supplier they may be very helpful. My supplier has a customer service dept that helps coordinate between my doc, ins. company and me. Ask them what info they need on the script.

Oh and bags of frozen peas are good too...lots of those. good thing you're stockpiled...

Hugs for only twingyness,
lionsound

Title: Re: Twingy head
Post by E-Double on Oct 18^th, 2005, 1:15pm

If ya like I can send you every bit of info I have gathered for docs./professionals/collaguesfamily and friends regarding CH,

I have an entire library.