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        New Message Board Archives >> 2004 Posts >> I understand your pain and anguish
        
(Message started by: Wifeofchman on Jan 24^th, 2004, 8:14am)

Title: I understand your pain and anguish
Post by Wifeofchman on Jan 24^th, 2004, 8:14am

I just wanted to say hello to all; this is "The Man". My wife has been searching websites lately to my 10 year affliction. She went home to Ohio and and while she was there I got admitted to the hospital for a CH that wouldn't stop. I prayed for some tumor or vascular abnormality but to my avail; nothing, yet again. I'm a traveling nurse in Georgia at the moment. I was glad she was in Ohio and didn't have to witness this new high; if you will for my CH's. I've tried many therapies to treat and prevent these occurances. I've even had; now, unnecessary surgeries to aleavate them. I'm in my 6 week this new cluster and I'm pretty sure that it's not done. These things drain every bit of me and I even made a deal with the devil to at least let me work without having them as so I can provide for my family. It's really taking a toll on my marriage and we now have a 14 month old son who wasn't around for the last series. My wife handed me a list of drugs and therapies that she found on this site and I would say most of them I have already tried. I have to thank her once again for finding this board and showing it to me. I've been up all night with 4 attacks and what I call a 2 IMshot, 4 loratab20 night. Eveyday I become a little edgier, from the continuing lack of sleep. I don't know how long I can go at work before it starts affecting my ability to work with patients. I work in surgery.

Title: Re: I understand your pain and anguish
Post by Wifeofchman on Jan 24^th, 2004, 8:18am

I'm sorry for rambling on and don't mean to but I can't help myself sometimes. ;;D I read the little exerpts on the front page and started to go into tears just reading it as to I knew the stories before they where being told. I hope to meet some folks who can give some insite or at least maybe I won't be as lonely once the sun goes down. Thanks "the Man".

Title: Re: I understand your pain and anguish
Post by grumpett on Jan 24^th, 2004, 8:33am

so sorry that you are suffering (like we all do here) I started here last year with no help before and now (from other opinions) I went back to my nero and now have some help.
Hopefully you will be able to do the same.
AS others have said, go to your nero with all of this info and if he don't help...FIND A DIFFERENT ONE!
FIRST... BE SURE CH IS WHAT YOU HAVE.

SECOND...DON'T LET THEM girl thingy FOOT YOU. KEEP GOING AND YOUR NEW FAMILY ARE HERE TO HELP ANYWAY WE CAN.

THREE... STAY STRONG, IF YOU NEED TO VENT OR JUST CHAT, YOU ARE IN THE RIGHT PLACE.

GOOD LUCK!

Title: Re: I understand your pain and anguish
Post by grumpett on Jan 24^th, 2004, 8:36am

i DON'T KNOW WHERE "GIRL THINGY " CAME FROM.
I TYPED girl thingy (CAT, POOSEY ) YOU KNOW.

Title: Re: I understand your pain and anguish
Post by Little Deb on Jan 24^th, 2004, 8:38am

Hi.
Welcome to Clusterville. Also, you are invited to the Clusterhead Gathering in Raleigh, NC on Jan. 31st!
Hope you and your wife can make it!

Little Deb ;;D

Title: Re: I understand your pain and anguish
Post by stevegeebe on Jan 24^th, 2004, 8:59am

Hey Man.

Have you tried o2? It has helped many here.

If it works for you, it can help you get through the crazy part of your cycle.

Good luck and welcome.

Steve G

Title: Re: I understand your pain and anguish
Post by Woobie on Jan 24^th, 2004, 9:05am

Hi WifeofCHMan

SOrry you're going thru this - I'm sending you vibes!
Welcome to clusterville!
you'll like it here!

tina

Title: Re: I understand your pain and anguish
Post by Wifeofchman on Jan 24^th, 2004, 9:30am

Done o2, steriods, beta-blockers, anti-convulsants, tension meds about to try anti-depressants. I use spray 4% percent local into my nose, ice cold showers until I shake violently. My last resort is narcotics but I have to get them at the beginning or they don't work. Thought about botox but it's still quite expensive and not sure if it will help the headache anyway. There's always the option of tying the blood vessels off but it would be detrimental to the brain.

Title: Re: I understand your pain and anguish
Post by Renee on Jan 24^th, 2004, 10:18am

my cocktail is:

daily:
celexa (anti depressant)
klonazepam (anti-convulsant and anti anxiety)
indocine

Abortive:
O2 O2 O2. If ch still there after 15 min then an imitrex injection in my thigh.

Prior to the above it was a trip to e.r. for demerol/phenergan just to knock me out cold. since the above I have not come close to having to go to e.r. as my cocktail is working for me.

I must refrain from any and all alcohol but smoking does not bother me. If I get woke up shortly after falling asleep I get hit immediately. If I wake in the middle of the night I get hit. If I sleep all the way thru the night then I wake up at normal time I only suffer about 30% of the time reaching for the o2 upon lifting my head off the pillow.

Verapamil works for many but I already have 90/55 bp and the verap dropped the bottom out of my bp so i had to quit it.

good luck finding your cocktail and we are always here to support!

pf to all
renee

Title: Re: I understand your pain and anguish
Post by River_Rat on Jan 24^th, 2004, 10:46am

I don't use 02, but from what I understand there's a certian way to use it or it wont work, you might want to reserch it.

I'm planning on trying it next cycle (maybe I wont get a next cycle)

Welcome (THE MAN)

THE NORM

Title: Re: I understand your pain and anguish
Post by thomas on Jan 24^th, 2004, 2:09pm

melatonin?

Title: Re: I understand your pain and anguish
Post by 5-string on Jan 24^th, 2004, 4:42pm

Hello Wifeofchman,
Sorry you've got to deal with these bastards.
Before I was properly diagnosed and found this place I was also hoping they would find ANYTHING. Just so I knew what was going on.
Verapamil pulled me out of cycle.(though I still get shadows)
And Imetrex works very well for me. Up until this summer I was med free. I used to be givin narcs,but I can't take them and they don't address the cause of clusters anyway.
Glad you found this sight. Alot of wisdom here.None from me :P
Take it easy,hang in there,
...Mark..

Title: Re: I understand your pain and anguish
Post by jonny on Jan 24^th, 2004, 4:50pm

Two fucking words!!!!!

LITHIUM-VERAPAMIL

If you dont try that combo....I'll stop there.

..........jonny

Title: Re: I understand your pain and anguish
Post by kissmyglass on Jan 24^th, 2004, 5:38pm

Yup, Lithium & Verap works for me.... :)

Title: Re: I understand your pain and anguish
Post by Callico_Kid on Jan 24^th, 2004, 7:27pm

Welcome aboard!

I'm with Jonny on this too. Verap did nothing for me my itself, but combined with Lithium I have cut mine in half, both in number and intensity. I chronic, so they have been a real lifesaver for me.

Find a way to get up to Little Deb's place for the get together. You have no idea how cathartic it is to finally meet others who know what it is you are dealing with, and to not have to make excuses or try to explain.

One thing for you to remember when you get his really badly, IT WILL END!!!

Jery

Title: Re: I understand your pain and anguish
Post by captdshea on Jan 24^th, 2004, 8:03pm

Welcome to the board, You have lots of reading to do.
Melatonin has work for me.

captdshea

Title: Re: I understand your pain and anguish
Post by Wifeofchman on Jan 24^th, 2004, 9:31pm

I did verap about 7 years ago. Lithium was good for about 4 years but it go to the point I couln't come off of it without the beast rearing it's head. I for one work in the medical field and have access to a lot of medical knowledge and experience. I know some of the best- world renown specialist in these fields. I know that not everything works for everyone. I don't come with poor me stories as we all know of each others story already. It's just refreshing to meet folks that have to deal with this as me and my wife do in hopes of keeping us strong. We all know that communication and understanding are the keys to dealing with these type of horrible afflictions.

Title: Re: I understand your pain and anguish
Post by Charlie on Jan 24^th, 2004, 10:20pm

Welcome to the fold. I can't add much but maybe these links will help. One to a technique that worked for me and the second is to a letter that will help describe this horror to others:

http://www.netsync.net/users/charlies/

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Good luck and keep in touch.

Charlie

Title: Re: I understand your pain and anguish
Post by Wifeofchman on Jan 24^th, 2004, 11:16pm

I have a feeling I'll be visiting this board frequently.

Title: Re: I understand your pain and anguish
Post by cootie on Jan 24^th, 2004, 11:21pm

hey 'man guy'....um....'the man' guy.......did I git that rite......I'm sorry. Anyhow....what part of Ohio is yer wife from.....I'm in Ohio...and it's DAM cold here too. Anyhow....hope ya find the rite meds mix ta help you out.......stick around.....while yer waitin fer that perfect mix you will have lots of company here and gets lots of info. Pam that's freezein her ass off in O-HI-O

Title: Re: I understand your pain and anguish
Post by Renee on Jan 24^th, 2004, 11:23pm

Charlie,

your second link appears to be broken?

can you check as i'd like to read it.

thanks and pfdan

renee

Title: Re: I understand your pain and anguish
Post by brad267 on Jan 24^th, 2004, 11:27pm

just take the trailing quote mark off, renee....

-Brad

Title: Re: I understand your pain and anguish
Post by jonny on Jan 24^th, 2004, 11:28pm

on 01/24/04 at 21:31:30, Wifeofchman wrote:

I did verap about 7 years ago. Lithium was good for about 4 years but it go to the point I couln't come off of it without the beast rearing it's head. .

yeah, but did you try them together?.....thats the key!

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

Title: Re: I understand your pain and anguish
Post by Tiannia on Jan 25^th, 2004, 12:25am

You came to the right place. And really it is ok to vent. We all understand it and have been there. :'(

Please keep us posted on how you are doing. The strain that these damn thing put on us in unbelievable and what it does to our families is even worse. I have a 17 month old and a 6 yr old, so I know.

Vibes and PF wishes to you.
Tiannia

Title: Re: I understand your pain and anguish
Post by Mr.Happy on Jan 25^th, 2004, 1:19am

on 01/24/04 at 23:16:44, Wifeofchman wrote:

I have a feeling I'll be visiting this board frequently.

Yeah. I said the same thing a while ago. Look what happened.

When cousins marry,
RJ

Title: Re: I understand your pain and anguish
Post by Wifeofchman on Jan 25^th, 2004, 9:47am

I've done many combo's with some working for a awhile, they all seem to fade with time. I've used 3 different anti-convulsants at the same time with beta-blockers. I'm on maximum doses of depakote at the moment as a sole deterent. That's 60mg/Kg. so roughly about 3500mg a day. It sucks but I worry more about my family than my own health.

Title: Re: I understand your pain and anguish
Post by Wifeofchman on Jan 25^th, 2004, 11:55am

Also, My wife and I hail from right outside Youngstown. A little town called Hubbard.

Title: Re: I understand your pain and anguish
Post by cootie on Jan 25^th, 2004, 2:56pm

I know where Youngstown is...it's a ways from us.......were bout an hour below Clevleand Ohio.......in Amish country near a town called Wooster. Suma our freinds are amish that 'jumped the fence'......man they are THE CRAZIEST. When amish go WILD Pam