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        Supporter's Corner >> Supporter's Corner >> HELPLESS
        
(Message started by: traym4 on May 15^th, 2003, 3:25am)

Title: HELPLESS
Post by traym4 on May 15^th, 2003, 3:25am

HELLO EVERYONE,

MY HUSBAND HAS BEEN SUFFERING FOR ABOUT 2 YEARS NOW. WE HAVE TRIED SO MANY DRUGS BUT WITH NO REAL POSITIVE RESULTS!!!!!!! CURRENTLY HE IS ON VERAPAMIL 240MG, METHERGINE.06MG, ZONEGRAN200MG, AND ARITOCORT12MG. BEFORE THE DOC HAD HIM START METHERGINE HE WAS ON AMERGE 2X A DAY. WHICH SEEMED TO LESSEN THE INTENSITY OF ATTACK FOR ABOUT A MONTH AND NOW THEY ARE BACK STRONG. DOES ANYONE ELSE GET ATTACKS ALL DAY LONG? THE CYCLE HE IS CURRENTLY HAVING I THINK IS THE WORST YET. I HAD NO IDEA IT COULD GET ANY WORSE. I FEEL SO HELPLESS AND I SEEM TO BE CONSUMED WITH FINDING SOME CURE VIA THE INTERNET. HE HAS A GREAT DOCTOR WHO HAS DONE SOME GREAT RESEARCH THAT HAS BEEN PUBLISHED ON CLUSTER HEADACHES BUT I DON'T TRUST ANY DOCS AFTER WHAT WE HAD TO GO THROUGH TO GET A DIGANOSIS. ARE THERE ANY OTHER DRUGS ANYONE HAS HAD RELEIF WITH?? SURGERIES?? I HOPE TO HEAR FROM SOMEONE SOON.

TRACEY

Title: Re: HELPLESS
Post by Ted on May 15^th, 2003, 3:33am

Hi Tracey. 240 verap is WAY low for clusterheads. We start at 360 and end at 960ish.
When you say suffer all day do you mean several attacks per day or one long attack?
There's no cure via the internet or anywhere else, but there is help, and support. Glad you found us. I bet Margi will be piping in here after she rouses her lazy ass out of bed because she's the kick-ass supporter who, like you, has a hurting husband and a big heart!

Title: Re: HELPLESS
Post by traym4 on May 15^th, 2003, 3:43am

Ted,

wow thanks, just talking to some of you guys has made me feel a little less alone. the attacks he is having last about 1-2 hrs with a 45 min break. he has never had them like this. well i will talk to his neuro about the dose of verapamil. increasing it may help.

thanks again,

Tracey

Title: Re: HELPLESS
Post by Ted on May 15^th, 2003, 4:04am

Tracey, you are no longer alone. Welcome to the club. You now have people you can come to and cry about it all to or even bitch about it all to (it's a known fact that while you feel guilty for resenting missing out on some fun times, you all don't get to vent about it too often. You can here!)

Title: Re: HELPLESS
Post by kissmyglass on May 15^th, 2003, 7:04am

Tracey,
I just read somewhere that Oxygen didn't work for him. Make sure he is using it correctly.
Also ,if possible, get the doc to give him Imitrex. It's expensive but works every time for me.
Good Luck! & Keep us posted...

Kev

Title: Re: HELPLESS
Post by traym4 on May 15^th, 2003, 7:34am

we have tried the oxygen several times, it just doesn't do the trick. has anyone had any luck with methergine and if so how long did it take to kick in?? also does anyone have attacks and then still have an intense headache even when your not getting the stabbing pains??? i asked about imitrex and his neuro can't give him that while he is on the methergine. i think im gonna go nuts keepin al these pills straight. this morning he was really bad and i felt so bad leaving him.

tracey

Title: Re: HELPLESS
Post by Margi on May 15^th, 2003, 8:24am

Hi Tracy, and welcome. You've gotten some really good advice here over the night - thanks Ted and Jackie - you two ROCK!
The ONLY thing no one has said to you yet is to try your damndest not to panic when he gets hit. I think that's the first natural instinct we supporters have is that this is a life and death situation and we must do something to make it stop. Tracy...we can't. :( Yes, it scares the hell out of me too, when my husband reaches that point that nothing is working and he's losing what little shred of patience he has left. But if we panic, what good are we as supporters, right? They need us to be their rock.
Not an easy task, by a long shot but you'll find your stride and soon be able to force yourself to calm down and just be there for him.
As to your meds questions, there really isn't a universal cure. Oxygen really HAS had one of the biggest success rates as an abortive and, quite often, failure is due to improper delivery and the patience to sit there and give it a chance to work. You HAVE to use a non-rebreather mask and flow rate has to be high enough to...get in there (cool scientific term, huh?) . My hubby uses about 10 litres per minute, but folks here have found success with 8 or with 15 - it's really trial and error. Not4Hire and Masstifflvr have really done an awesome job on the oxygen information here and I saw in one of your threads that someone (Peppermint?) gave you a link to that website. Seriously, Tracy - READ it. IS he doing it EXACTLY as it mentions there?
Methegrine......I've never heard of that but there is another drug,Methysergide (I know I messed that up) that some folks use. Are you in the UK? If you are, you're in great cluster country. OUCH UK has a fabulous website and Dr. Simon Goadsby is in London (the pioneer cluster researcher). Also, OUCH Italy is doing some wonderful studies and breaking ground in cluster treatment. If you're across the pond, definately check this stuff out.
Tracy I can't stress to you enough, however, how vital it is for you to also take care of YOU. Please visit the Family Services Team (the link is at the bottom of my post). You need to keep yourself together so you can be a bigger help to him, ok? Ask him what he wants you to be doing when he gets hit. But don't ask him WHILE he's getting hit! :o Go read our pages over at the Family site - some survival tips are included and you just might find some peace there. We have an email box that reaches our team - it's clusterbuds@hotmail.com, if you'd rather talk off the board here.
Hang in there, Tracy - you're sure not alone with this and us other supporters are strong enough to help you carry your load when you feel yourself faltering ok?
You can reach me directly at moxie_miss@hotmail.com if you need a shoulder.
Hang in there, gal - we're right beside you.
Hugs
Margi

p.s. you really do need to answer Ted's question....IS he in continual pain all day long or is he getting pain free breaks during that time? If he's in continual pain maybe you're trying to treat something he may not have....? Clusters come in defined attacks, they don't last all day, thank God. (Not trying to discredit you at all, just trying to help you help him find some relief.)

Title: Re: HELPLESS
Post by Peppermint on May 15^th, 2003, 11:38am

Hi again Tracey , :)

I didn't notice your post here before. Margi's got the goods, as always...

Keeping track of meds can be difficult, dosages, what failed, what worked, etc. Try keeping a log of the meds, maybe a section notebook will help, or whatever will help keep it organized. Keep for reference, what was tried, the dosage, did it work or not, for how long, and of course, current treatment with successes and failures. At least you won't have to keep it all in your head, God knows you have so much going on in the moment.

I'm so sorry you have to be here, but looks like you're getting a full suit of armor and weapons. Keep going, you've got an army behind you now!

Peace,
Peppi

Title: Re: HELPLESS
Post by echo on May 15^th, 2003, 2:28pm

Welcome to the MB Tracey. How very fortunate your husband is to have a caring wife truly give a shit about how his is doing and how you can help him through these gates of hell. He is truly a lucky person.

Again, welcome to the group.