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        New Message Board Archives >> 2002 Posts >> Frustrated!!!!!
        
(Message started by: bart on Nov 6^th, 2002, 9:01pm)

Title: Frustrated!!!!!
Post by bart on Nov 6^th, 2002, 9:01pm

just got done reading some of the messages posted today, hoping they would do me some good tonight. unfortunately i'm at the desperation stage of my cycle. i'm beginning to ask the question "why me" "what the hell did i do to deserve this" had one this morning that dropped me to my knees and to tears. i go to the neuro. tomorrow to hopefully change meds. currently on verapamil-depakote and not working. i feel like i have done my research and am prepared to go to battle if i have to. i'm also prepared to tell him i will go somewhere else to. didn't mean to upset anyone by saying your comment don't help. they usually do. i'm sure i'm not the only one that gets to this point. i told myself several years ago that i'm not going to let these things run my life, but sometimes i don't have a choice. thanks for listening.

bart

Title: Re: Frustrated!!!!!
Post by Charlie on Nov 6^th, 2002, 9:07pm

I know exactly what you're going through. I did have some good medical advice but still.....why me? At least you have us for venting....fire away. I had no idea there were many others. It truly is a horror.

Good luck with the doctor and let us know how you do.

Charlie

Title: Re: Frustrated!!!!!
Post by Bob P on Nov 6^th, 2002, 9:07pm

Bart,

When you get desperate, ask about prednisone. You can't atke it for long because of the side effects but it usually stops the attacks dead in their tracks.

Here's what Goadsby suggests:

Steroids

Corticosteroids are highly efficacious and the most rapid-acting of the preventative agents. But caution must be exercised in using them because of the potential for serious side-effects. Treatment should be limited to a short intensive course of two to three weeks of tapering doses.

We start patients on oral prednisolone 1mg/kg to a maximum of 60mg once daily for five days, then decrease the dose by 10mg every three days. Unfortunately, relapse almost invariably occurs because the dose is tapered. For this reason, steroids are used as an initial therapy in conjunction with preventatives, until the latter are effective.

When he talks about using in conjunction with preventatives, he means verap. Just curious what dose you are on?

Title: Re: Frustrated!!!!!
Post by Mark C on Nov 6^th, 2002, 9:25pm

Hi Bart,
Hate to hear your getting your ass, I mean head kicked. I know all about that. I think if anybody has a right to be upset its a Clusterhead after a few weeks of playing lets see if I can push my brain out my eye socket. It a good thing you are heading for the Neuro, and prepared.
I have got an attitude with mine in the past and no Dr in right mind would not understand.
This shit hurts! Bad!
I have found is especially difficult to be polite at 3:00am with an ER nurse who has seen it all. I will show my ass and be proud of it if needed.
Hang in there tonight and let us know how it goes tomorrow.
Do you have an abortive like Imitrex or Zomig? Both I find a must for survival. I have never done well with preventive meds, but I too have an appointment this month and will be armed to the teeth with questions and hopefully will get answers.
Good luck Bart,
Mark

Title: Re: Frustrated!!!!!
Post by domm on Nov 6^th, 2002, 9:33pm

bart - you didn't mention O2 and I don't remember if you have / had tried it. It was a life saver for me.
Hope you have a better night and the doc makes some sense for you tomorrow.
Good luck
domm

Title: Re: Frustrated!!!!!
Post by bart on Nov 6^th, 2002, 10:05pm

thanks for the quick replies. i was on prednisone 2 weeks ago and don't know if he will put me back on for another week or two. this seems to work a little. currently i'm on 240mg of verapamil. i'm currently using imitrex and not very willing to give that up. have never tried zomig and haven't researched it at all. any quick advice about it. i tried the O2 and it didn't work, i think i need to read up on it again and see if i did it wrong. thanks again for the replies. i'll get back to you tomorrow.

Title: Re: Frustrated!!!!!
Post by cootie on Nov 6^th, 2002, 10:25pm

Bart....good luck.....I'm a supporter....but we've went thru hell with all this a long long long ass time....Brad won't even try new meds cuz he is afraid they won't work and so far he's had luck with imitrex (pills and nasal spray) and verapimil so he doesnt' want to try something new and go thru the entire episode finding out it didn't work. Seems if he lets the CH get ahold of him they come on "harder faster" for a while.....he'd thought the last cycle was sinus at first and tried to endure and fight it off but lost that battle and had to get back on his meds. He swore it was sinus this time since everyone we know has it "bad".....after the next day ...he knew it wasn't sinus anymore !!! Good luck to you agin....cootie >^..^<