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        New Message Board Archives >> Jan-Mar 2004 >> Imitrex filled and LOMN done!
        
(Message started by: helpless23 on Feb 26^th, 2004, 9:11am)

Title: Imitrex filled and LOMN done!
Post by helpless23 on Feb 26^th, 2004, 9:11am

Hi guys!

Well, all of my bitching and moaning worked! It took about 2 weeks, but with a lot of support from 357Mag - I did it! I got Ken the meds (Imitrex Nasal Spray) to get refilled every 12 days (with 6 doses) instead of every 30! I also got a new Dr. for him to see, and that's on March 2nd!

I'm thrilled, he's so happy and it's about DAMN time!!! It seems that I've been fighting this Dr. for a month now, ever since we first went to see her. I asked her to write the Letter Of Medical Necessity 3 weeks ago and she wouldn't. If she had, Ken wouldn't have had to suffer for 2 weeks almost with no meds. Also, the beast is still hitting him, 1-2 times a day, mostly at night. Wakes him right out of his sleep. But it's cutting down in length. I think the Indomethacin is doing something for him.

Well, just wanted to let everyone know the good news and sometimes you just have to stand your ground and show those Dr.'s who's boss!~ ;-)

Much Love,
Toni

Title: Re: Imitrex filled and LOMN done!
Post by ave on Feb 26^th, 2004, 9:16am

Good for you!

Remind us all to get you somehing special, come Supporters' Day.

Title: Re: Imitrex filled and LOMN done!
Post by Margi on Feb 26^th, 2004, 9:38am

If Indo's working for him, Toni - you might want to research CPH... indo is almost 100% effective in treating that.

If it is cluster, work hard to get him some oxygen. I know you said earlier that your doctor is afraid to give it to him because of small children in the house ( ::)), but maybe it's time to find a new doctor.

Title: Re: Imitrex filled and LOMN done!
Post by helpless23 on Feb 26^th, 2004, 9:47am

on 02/26/04 at 09:38:21, Margi wrote:

Hi Margi,

I'm not really sure with the term CPH. From the symptoms he has, it sounds like CH to me. But what really do I know. I have only been dealing with it for a couple of months now.

When she started him on the Indomethacin, she also started him on Prednisone the same day. He went HA free for 5 days, then started to taper and he started getting them back. So now it's at the point where we don't really know WHAT is working. Whether it's the Prednisone still in his system or if it's the Indomethacin. His cycle is getting really wierd though. I"m not really sure what's working here. Maybe I say it's the Indomethacin and that's "hope" talking. I don't know!

I fired the old Dr (after I got the LOMN out of her) and he has a new Dr. appt on March 2nd...I hear great things from our sister-in-law who goes to him for Migraines. His wife suffers with Migraines too, so he's very sympathetic and has written her LOMN too when she ran into problems with the Ins. Co. He's also putting her on Topomax, but I have heard that causes memory loss, and in Ken's type of job, that could be very risky.

So, I'm very confused!!!! I want to say that the meds are working, but I'm not a Dr. That's why I come to you guys! It's funny. You CH's are MY support. Did you know that?

I love this place. I love the people - I cant say thank you enough!

I would love everyone's input on this!

Much Love,
Toni

Title: Re: Imitrex filled and LOMN done!
Post by thebbz on Feb 26^th, 2004, 2:51pm

the key is a good doctor!!!! dont settle for inaction !! fire them and get ano0ther . Dont forget to breathe
you are not alone keep fighting. BB thebbz

Title: Re: Imitrex filled and LOMN done!
Post by helpless23 on Feb 26^th, 2004, 10:35pm

thanks bbz and all of you.

She is fired and new appointment is on the 2nd. I think I said that already, but it's late!

Thanks for all your help and support for the supporter! :-) And sweet gesture too about a gift.

;;D :-*

Much Love,
Toni