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Topic: What do we try next??? (Read 458 times) |
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Jackie
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What do we try next???
« on: Nov 25th, 2002, 6:27pm » |
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Blake has been getting hit hard since August. We can't seem to get it slowed down this time. It's like the demon has gone on a rampage.. 
He's on 960mg Verapamil, 900mg Lithium and 100mg prednisone. Usually when we take the prednisone that high it knocks it down in about a week....not this time.
He was using Imitrex nasal to abort but that has started making in worse. He used it when he hits about a K5 with the 02. Now as soon as he does that it goes to a K10 very fast and he can't get it knocked down..it makes for a long hard ride. Zomig is still working. He is maxed on insurance scripts so it's about $106.00 every 2 to 3 days. That is manageable but I'm not sure how long he can keep up this dosage or how long the doctor will allow it.
I have made him an appointment with a new neuro for Dec. 23, but that seems a long way off . And, I'm not sure what he's going to suggest anyway at this point....but we're willing to try anything (almost) 
I went to Blake's work today (in another town) to take him more zomig. He broke down as soon as he saw me and told me it was the second time he had done it this morning. He just held on to me and shook for a few minutes. He's getting fragile emotionally. Can you all suggest anything that will help me keep him encouraged. We're not new to this by any means but this is a REALLY rough one .
Thanks,
Jacks 
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jonny
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Re: What do we try next???
« Reply #1 on: Nov 25th, 2002, 6:34pm » |
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I dont know what to say, Jacks......All I can do is offer to mail you half of my Zomig stash which is 4 seeing I only have 8.
Wish I could do more, Babe!!!
...............................jonny
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OneEyeBlind
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Re: What do we try next???
« Reply #2 on: Nov 25th, 2002, 6:41pm » |
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Praying for Blake ... that's all I can offer. Hope it helps.
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Cerberus
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Re: What do we try next???
« Reply #3 on: Nov 25th, 2002, 6:44pm » |
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Damn Jackie, that is sick!
Other than trying different meds I'm kinda stumped.
My neuro gave me elavil just today to use as a preventative, and although I've never had prednisone or imitrex nasal, the injections work for me REALLY well.
But I see you mentioned that insurance is getting fickle. Hrrmmmmm......My best suggestion is ( and this only works sometimes, just to take the edge off) Dark glasses to limit the amount of light to the eyes, move around ALOT (pacing), Water x10 and a steaming HOT towel to the back of the neck and face.
I'm REALLY sorry, I feel terrible for Blake AND you. those are some heavy duty medications he's on and pushing the limits of human consumption too....Damn.
If nothing else (this will require a hospital visit and a day maybe two off) a good dose of DEMEROL, it doesn't take away the pain but it knocks you on your ass enough to make it less taxing on the mind. At least it did for me.
Best wishes to the both of you and I hope it subsides soon.
Cerebus
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Jackie
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Re: What do we try next???
« Reply #4 on: Nov 25th, 2002, 6:49pm » |
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Thank you, Jonny.....keep the stash for now, Darlin. If they won't let him have more I'll call you for sure.
I'm crying right now and that is something I don't do. It's just about to kill me watching this day after day...God, what is it doing to him?  I'm trying to make this all better but I don't know what to do anymore. I know for sure I can't let him know it's wearing me down too and I'll never let him see me cry. I'm sure if we can hang on (and we will...we always do) it's got to get better soon. I don't know why I'm writing all this...maybe this tough ole broad is getting fragile too. No, I'm just pissed. I hate the fucking beast!!!!!!!!!! I wish I could blow the SoB away with my shotgun.....for all of you
Bless your hearts.
Jacks
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kim
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Re: What do we try next???
« Reply #5 on: Nov 25th, 2002, 7:02pm » |
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Jackie,
Man I am so sorry the current meds are not effective. Perhaps maybe a "change up" ???? I dunno. Sometimes with clusters, what worked b4 suddenly stops workin....I usually go for the change up. That and a lot a dancin. I feel bad for Blake and I feel bad for you. It's a really crummy place to be............
Last cycle doc had me on cocktail of Neurontin, Maxalt mlt 10 mlg (dissolving pill). This was the LEAST amount of med combo I tried in YEARS. I swigged tons of coffee with the Maxalt and the Neurontin seemed to cut it off at the pass.
Never say never and never give up. If sumpin ain't working no mo, then try sumpin else.........
Well wishes, Kim
Good luck to Blake. and Jackie. 
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suzy617
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Re: What do we try next???
« Reply #6 on: Nov 25th, 2002, 7:35pm » |
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Jackie, I absolutely can not imagine his hell. Mine lasts 6 long weeks to me but to have to deal with it like Blake and many others here, month after month is just unbelievable to me. My heart goes out to both of you, I wish Blake pfdans soon, like right now! I'm sorry I could offer you no help, only my prayers.
suzy
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Jimi
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Re: What do we try next???
« Reply #7 on: Nov 25th, 2002, 11:09pm » |
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It DOES get so frustrating. You try all the meds that is supposed to work and they don't. That high combo of drugs he is on now,,,heck,,,who knows what that is doing to him physically. You want to get him hospitalized but then you realize you have no faith in the doctors. You feel so helpless. My heart goes out to both of you. I'm sad and pissed. I'm going to bed.
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Melissa11-8
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Re: What do we try next???
« Reply #9 on: Nov 26th, 2002, 1:53am » |
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My dr had my try Frova. Is a Tripan likeZomig or Imitrix. It is supposed to last longer and does 4 or 5 hrs vs 2 or 3 and for me Frova takes away my nausa Imitrix makes mine worse.
Its only been out a year or so but when I wasnt responding to my old bag of tricks they gave me that it is put out my Elan Phamaceuticals.
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ave
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Re: What do we try next???
« Reply #10 on: Nov 26th, 2002, 3:38am » |
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Oh, Jacks, I am so sorry for Blake. AND for you. I feel just as powerles sitting here as you must feel running around trying to help.
Can only think of you real hard, with lots of love.
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Jackie
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Re: What do we try next???
« Reply #11 on: Nov 26th, 2002, 6:21am » |
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Ok gang.....it's a new day and we're gonna try this again. Sorry about the "wah/whine posts". It's not like me to write such crap but when he said "why don't you let me just walk off in the woods".....well, that's what sick and wounded creatures do and it ripped my heart out....made me kinda weak for a few minutes. 
This to shall pass..
He got a fairly good nights sleep so today will be better Through all of this the man hasn't missed one days work.....that's amazing.
Thanks to you all for your replies. I appreciate it. I promise no more pitiful posts....that doesn't help Blake or any of you either. Jonny....if I do it again you'll need to give me one of your famous ass kickings ;D
Here's to better days......
Jacks
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Margi
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Re: What do we try next???
« Reply #12 on: Nov 26th, 2002, 8:33am » |
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Oh, darlin, we've been there...
I read this really cool thing one time about dogs. It was kind of an instruction manual on how to be a good dog.
There were a list of things to do - all in jest, of course - but the one that stuck with me was... when you can't think of anything else to do to make him smile, just sit quietly by and let him know you're there if he needs you.
So that's what we're doing for you and Blake right now, ok?
HUGS
Love ya lady.
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Ann
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Re: What do we try next???
« Reply #13 on: Nov 26th, 2002, 9:50am » |
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Hey Jacks! Hey Blake!
I'm sorry you are having such a hard of it lately. I hope you start to feel better soon. Jacks, when it gets to be too much, we need to share our feelings and that's just what you did. Don't be embarassed by it. You had me in tears myself with your post! 
Here's a suggestion...I don't know if it works and if it's doable for you. Would it be possible to have Blake hospitalized for 3 days for the DHE drip? I think it was Don or Charlie that posted about it a few weeks ago. Can't remember which one..sorry! But if you could reach your doc, it might help. My neuro is keeping that one as a last resort for me. I'm hoping the lithium and verap will do the trick. Maybe it would abort the whole cycle and you guys can get on with the business of living? Just a thought.
hugs
Ann
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nancyc
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Re: What do we try next???
« Reply #14 on: Nov 26th, 2002, 9:59am » |
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Mailing you a care package off tomorrow...give Blake a hug for me and tell him to hang in there..and you need a nice warm bubble bath , sis...i know you are wore out too....God bless..smiles, nancyc
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NotH20
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Re: What do we try next???
« Reply #15 on: Nov 26th, 2002, 10:26am » |
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Hey Jackie & Blake....
Ann took the words right out of my mouth - DHE!!!!! That was also my last resort this past January and it actually did the trick for me.
Jackie, I am currently out of cycle, but continue to get my refills. I have a cabinet FULL of meds - let me know if you need any of them - I'll send them your way.
Keep us posted. We are all here for you. Although "supporters shoes" are extremely difficult to fill - us ch'ers are here for you.
Mia
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Slammy
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Re: What do we try next???
« Reply #16 on: Nov 26th, 2002, 11:56am » |
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Hey Jacks!
My heart goes out to you and Blake...... I know of others that have found the imitrex nasal spray actually making the CH worse....... I don't know why, but maybe the injections are an option?
Kim maybe right... a changeup in the cocktails he is on? Maybe the beast is getting immune to the one Blake is currently on?
P.S. Don't ever apologize for your posts.....Where else are ya going to go? 
Love ya!
Slammy
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Azrael
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Re: What do we try next???
« Reply #17 on: Nov 26th, 2002, 4:16pm » |
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You and Blake are in my thoughts and wishes. Good luck to ya.
PFDAN......................................... Drk^Angel
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jonny
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Re: What do we try next???
« Reply #18 on: Nov 26th, 2002, 4:43pm » |
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on Nov 26th, 2002, 6:21am, Jackie wrote: Jonny....if I do it again you'll need to give me one of your famous ass kickings ;D
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Not on your life, Jacks!!!.......You are special!!, You got my cell # call me next time, anytime you need to.
..........................jonny
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Mark C
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Re: What do we try next???
« Reply #19 on: Nov 26th, 2002, 5:13pm » |
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PF vibes going to you and Blake. I am sorry he is getting hit so hard. I know after a couple of months the emotional wear and tear becomes almost as difficult as the pain.......almost.
Sounds like he may be having some rebound from all of the meds. I tend to agree with Kim and the others about mixing up the meds, but the levels he has been at you don't have a lot of wiggle room. That sucks......sounds like you have been doing everything right. Jacks you are great.....you guys hang on, you're both due a break.....
Mark
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Jackie
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Re: What do we try next???
« Reply #20 on: Nov 26th, 2002, 6:44pm » |
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What can I say?? Thanks to each of you for the replies. You have been more help than words can express.
I've got more ideas to hit the new doc with. He better listen to me or there is gonna be a bad scene in his office... ;D
Blake had a better day....only one zomig, about half a tank of air and one of the best meds available (a conversation/pep talk with another chronic...Thanks, Jonny... )
Blake will post soon. He's gonna be better any day now...I'm positive!!!
You all and this board have saved us once again. What the hell would we do without each other?
Love,
Jacks
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Jackie
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Re: What do we try next???
« Reply #22 on: Nov 26th, 2002, 7:17pm » |
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Yep....for sure!
Those BBB's are worth their weight in gold....don't misplace 'em.. ;D
Jacks
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Jill
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Re: What do we try next???
« Reply #23 on: Nov 26th, 2002, 7:25pm » |
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I am kind of late in this post, sorry about that...a bit slow on my end lately.
I feel his pain, I do and I understand it all too well, as many do. He is extremely lucky to have you by his side, I mean really lucky. And that makes you a great person for standing by him through thick and through thin.
You both are in my prayers and I know that you will make it, your attitude shows it.
Hope that he is pain free very very soon....
Jill
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Jabeen
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Re: What do we try next???
« Reply #24 on: Nov 26th, 2002, 9:52pm » |
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I know you have tried a lot and been offered other suggestions...my neuro gave me Wellbutrin after Verapimil and something else didn't work. I kow it has helped some, and not others...but what else is new with this crap? My pain experiences pale in comparison to people like Blake-can't even imagine how that must be! I pray you can find some relief soon. He's lucky to have you.
Jabeen
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