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        New Message Board Archives >> February 2002 >> I have not posted because I have nothing to offer 
        
(Message started by: nancyc on Feb 18^th, 2002, 3:41pm)

Title: I have not posted because I have nothing to offer
Post by nancyc on Feb 18^th, 2002, 3:41pm

rite now as far as support...plus I dont' want to be accused of whining....that is NOT what I am doing. I am posting because I need some advice...all me and my Doc can get...so please don't give me any sympathy posts as we are all suffering rite now and if you have any to give, give it to someone else..not trying to be ugly but despite what some folks say, I dont want sympathy. But this has always been my family so I need to talk to you guys about this. I am chronic as most of you know..I have been getting hit really bad. I tried the shrooms 3 times and got a few pf days which was worth it to me..and would do them again...I am getting ready to go out on FMLA...disability for a few months to find a med that will work for me...I made a major drug error at work, which did not hurt anyone and I was covered by the Doc but it scared me...I dont wanna lose my nursing license...Please give me some ideas of meds to try...and if you live in SC, please refer me to another neurologist...I really appreciate your help...My GP is helping me now and she told me to ask you guys these things...she has faith in this mb and so do I...as she said, who better to ask...I love you guys and thank you in advance.....i am hanging by a thread here and need your advise....God bless...smiles,nancyc

Title: Re: I have not posted because I have nothing to of
Post by Frank on Feb 18^th, 2002, 4:23pm

~~Oh Nancy... I am so sorry.~~ Oops. I forgot some of the meds you have tried. Did you try verapamil with any luck... without dropping your BP too low? How about prednisone or lithium? Maybe a combination of verapamil and lithium?

Title: Re: I have not posted because I have nothing to of
Post by Cranpain on Feb 18^th, 2002, 4:34pm

Nancy, please hang in there. My neuro told me at the beginning that we would need to find the right "combination" of medications. After many trials, I am taking verapimil and trileptal, with some success. Don't let your doc get hung up on one certain med. Try them all, if you must. Different things work for different people. Good Luck........Mike

Title: Re: I have not posted because I have nothing to of
Post by nancyc on Feb 18^th, 2002, 4:39pm

forgot to mention my previous and present meds...i am on 720 mg. verapamil with about 2 injections of imitrex plus 2- 50 mg. imitrex tabs daily...i was on topamax which gave me relief at 200mg until it made me suicidal. ihave been on depakote, lithium (for a short short time)..O2, inderal (even though for migraine sufferers), DHE, prednisone, elavil...none of these worked...remember i am gonna be out of work so i can deal with any side effects since i will be at home now...thanks...smiles,nancyc

Title: Re: I have not posted because I have nothing to of
Post by Frank on Feb 18^th, 2002, 4:49pm

What was the reason for trying lithium for a "short, short time"? Unless you had bad side effects, maybe you didn't stay on it long enough. Where's our lithium expert jonny?

Title: Re: I have not posted because I have nothing to of
Post by Elizabeth on Feb 18^th, 2002, 5:26pm

Well, nancyc....
I have some stuff I found....
Sansert?
Indocin/indomethacin (few side effects - worst one was water retention)
Depakote?
Magnesium IV? (someone mentioned that recently)
There are two other calcium channel blockers that I know of:
Diltiazem and nifalpine.
Now that i've mentioned these, I'm sure you'll get lots of information about them from the people with the real brains... like Ueli, jonny, Todd.....
Hope I helped!
Liz

Title: Re: I have not posted because I have nothing to of
Post by Paco on Feb 18^th, 2002, 5:38pm

Hey Nance---
A recent study reported success with 9 mg. melatonin taken at bedtime. Might be a good thing to try. I don't think it would react with your other meds. Also, try slapping someone.

Title: Having nothing to offer never stopped me
Post by Jack on Feb 18^th, 2002, 5:44pm

In fact I think the best posts come from those with nothing to offer - it takes some creativity to do so. ;)

Title: Re: I have not posted because I have nothing to of
Post by jonny on Feb 18^th, 2002, 6:22pm

Lithium works for you or it dont, plain and simple

Title: This may help
Post by don on Feb 18^th, 2002, 7:40pm

Helped me after a brutal 6 month cycle.

Neuro was going to kill me or himself if we didn't find a solution.

2 days inpatient on IV DHE and Benedryl.

Cycle broke and hasn't returned.

yet

Title: Re: I have not posted because I have nothing to of
Post by Jim R on Feb 18^th, 2002, 8:30pm

Hey sis,

I do agree with Jonny about lithium - works or doesn't BUT it does take a while to build up. It took me over 1 month to stop the CH (I was on verap. concurrently too, as you know). Maybe give it another shot? Thinking of you sis. Jim R

Title: Re: I have not posted because I have nothing to of
Post by nancyc on Feb 19^th, 2002, 5:26am

Thanks so much, guys for the help...dont' care how long you are around Clusterville, sometimes you forget the meds and little tricks that seem to work for folks. I really appreciate all the emails and phone calls I have received with words of wisdom. Please email me or post with any other ideas...I need help rite now to try to put this beast in hibernation. Also, if you can spare one little prayer today, I need that too...I tell my main supervisor that I am going out on disability...FMLA...for a few months and he is not gonna be happy...He thinks I just have headaches...God bless you all and again, if you have any more ideas, get in touch with me..I am blessed to have this family.

Title: Re: I have not posted because I have nothing to of
Post by Mastifflvr28 on Feb 19^th, 2002, 8:58am

Good luck w/ your boss Nancy. Hope the needed rest and less stress helps. I don't have much advice for meds other then I use verap, imitrex inj. and oxygen. These are my godsends :)
Have you ever gone the Pred route? Might give you a few nites of sleep. Of course the beast will be back, but if your looking for a break...
Take care sweets

Title: Re: I have not posted because I have nothing to of
Post by Cheryl on Feb 19^th, 2002, 12:27pm

Hey Sis,

Well you know Donald was on all sorts including the Lithium.. He actually was on Lithium twice. They gave it a break and few years later back on it again. Donald is currently on Verapamil (I think) 240mgs 3 times a day, Celexia 20mg am/pm, Imitrex injections as needed, Methadone (for ha's not addiction) 10mg am/pm

Of course do you have the right mask for the O2 (I have one I can send you)
They have done the DHE injections (hospital stay) on Donald -- he was painfree for 14 days on that one.
Dr Walker seemed to think if you put 1/4tsp of Capsaisain creme up your nose you would eventually get relief after about 10 days of this. ( Donald couldn't stand it only used it once)

There is a procedure called Octipital Nerve Block (Donald doesn't like it) but again, Dr Walker gave him one in his office before he went into the hospital and the ha's was gone within 5 mins the first time.

There are a couple of other blocks that can be done.. one they put like novicane or something to that effect on two Q-tips and stick them alllllll the way up and in your nostrils to hit the nerves to see if this helps.

The other they give you a shot in the neck to hit a nerve an numb it.

Damn, the awful stuff that has had to be done(I hate to say it, but I say it lovingly I am glad it was not me.... crap I just had to watch and grit my teeth.)

I'll probably think of more

Love Ya
Cheryl

Title: Re: I have not posted because I have nothing to of
Post by Jasmyn on Feb 19^th, 2002, 2:01pm

Sis

A long time ago, before I was diagnosed, my GP, in another province, also injected me in the neck with something that stopped the attack in about 1 min. It does not keep future attacks at bay but the relief is great.
Maybe Cheryl can get the name of this stuff from her hubbies doc. It sounds just like the stuff my GP used, and besides you need a break while you wait for other more permanent solutions.

By the way, I will never think that a great Gal like yourself sends anything to get sympathy, but as we all know what it feels like, I Will give you the sympathy you deserve!

Hang in there my friend because HELL will froze over!

Lots of Huggs
Jas ;)

Title: Re: I have not posted because I have nothing to of
Post by Jayne on Feb 19^th, 2002, 2:13pm

Hi Nancy,
I do know it takes some time to find the combination/drugs /dosage that work for you. I do know that Sansert is a nasty drug and would advise anyone to stay away from it. I wish I could help you more. If you ever need me just to rant and rave at...let me have your # and I will call you.
Hang in there doll face
Jayne

Title: Re: I have not posted because I have nothing to of
Post by David_M on Feb 19^th, 2002, 2:53pm

Hey Nancy,
I don't have any more advice to offer than the fine info. above. But you have my prayers, and like Jayne, if you need an ear to rant in....
And I've heard or used every curse in the book, so feel free!
David

Title: Re: I have not posted because I have nothing to of
Post by Linda T on Feb 19^th, 2002, 4:16pm

:(Hey Nancyc: I have nothing to offer except my support. Sorry you're going thru such a hard time. You'll be in my prayers. Hang in there! Write me if you feel up to it. I, too, have heard it all and nothing you can rant and/or rave about will surprise me. Best of luck. Linda T.

Title: Re: I have not posted because I have nothing to of
Post by Charlie on Feb 19^th, 2002, 6:11pm

Post away Nancy. Your posts are always worth reading. I can't help with drugs but I hope the nonsense from the others is helping. :D ;D :)

Mean old Charlie

Title: sis....
Post by Melissa on Feb 19^th, 2002, 6:27pm

although i can't help you with the med things ::), i can tell you, that i'm here for you whenever you need me! You are such an excellent supporter ;D of everyone else, it would be a shame not to return the wonderful thoughts and helpful words back to you!!! You have many friends that love you here, so please don't ever worry about "whining" to us!!!! I love you sis....

melissa :-*