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        New Message Board Archives >> 2003 Posts >> After 12 MG ... then what ?
        
(Message started by: UnsolvedEquation on Sep 17^th, 2003, 5:23pm)

Title: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 5:23pm

My doctors are on my case BIG TIME. They said (after my last 3 EKG's were 'abnormal')..."NO MORE THAN 12 MG OF IMITREX A DAY". But, I've tried to tell them. It's just NOT enough. Some days I can get by with that, but most days I cannot. They would rather me go to the ER for Demerol...but I don't think it's sinking in their heads. I'd be in the ER almost everyday If I followed their advice. Besides, I can't wait an hour for Demerol when I got Imitrex in my back pocket. What do you guys think I should do ? Wait in terrible pain an hour 3 - 5 times a week for Demerol ? And I do the Imitrex tip thing too...I require at least 4 mg.
What would you do ?

Title: Re: After 12 MG ... then what ?
Post by Melissa on Sep 17^th, 2003, 5:29pm

I'm sorry if this has been asked to you before, but are you on a preventative and have you tried O2? Also, when they told you the EKG looked abnormal, did they tell you why? Do you have a heart condition or high blood pressure? Just want to help, that's all!

:)mel

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 5:33pm

Tried ALL the preventatives. Prednisone used to work, but not anymore. Currently on Verapamil 80 mg X 3(more to keep the BP down) but it doesn't stop the beast either. Also on Baclofen and Meletonin at night. BooCoo's of injections :( They've pretty much given up on preventatives now :( I've tried O2 with no success, but since hearing Johnny and the others...i'm gonna give it another try with a higher output.

Title: Re: After 12 MG ... then what ?
Post by Melissa on Sep 17^th, 2003, 5:42pm

I'm glad you're going to try the O2 again. Perhaps if you get on the O2 right away at the onset, and take a 2 or 3mg shot of trex instead of 4, it might do the trick using them in combination. Also, is there any way your doc could up your verap?

Title: Re: After 12 MG ... then what ?
Post by Prense on Sep 17^th, 2003, 5:48pm

That is a pretty low dosage of verapamil from what others claim that works for them.

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 5:48pm

2 or 3 mg won't do the trick. It makes me suffer TOO long. Can't up the Verapamil either. Tried it and it slowed down my heart to almost nothing. All the meds are at a stand still. Nothing helps except a 4 mg injection or LOTS of Demerol via IV.
RF is scary and also scheduled for next Tuesday !

Title: Re: After 12 MG ... then what ?
Post by Prense on Sep 17^th, 2003, 5:51pm

Wouldn't demerol stop being as effective after a while? I.E. more to get the same results?

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 5:56pm

Yes. A long time ago ... 25 mg used to knock me out. Then it took 50 mg. Then 75 mg. Now, it takes 100 mg and I'm pretty 'out of it', but still awake (but at least the pain is gone) Doctors are reluctant to give me that much to. It usually takes a few shots to work. They look amazed ! ???

Title: Re: After 12 MG ... then what ?
Post by Melissa on Sep 17^th, 2003, 6:36pm

I'm sorry Unsolved, I wish I could help you. :( Don't know what else to say except I hope something good comes your way soon.

positive vibes your way!

:)mel

Title: Re: After 12 MG ... then what ?
Post by Mr.Happy on Sep 17^th, 2003, 6:47pm

on 09/17/03 at 17:23:50, UnsolvedEquation wrote:

What would you do ?

I'd try shrooms (http://clusterbusters.com).

Beats a blank,
RJ

Title: Re: After 12 MG ... then what ?
Post by CC on Sep 17^th, 2003, 6:55pm

the trick i've learned over the years is, you have to suffer through one cycle, when your cycle ends, you pretend you still have them and keep getting the dosage the doctor was prescribing, after about a month you should have enough backup that the doctors think you have already used. when the next cycle hits you should have more than enough to keep ya going.

I am not recommending you do this, just letting you know what i do!!

Take care and best of luck!

Title: Re: After 12 MG ... then what ?
Post by Peppermint on Sep 17^th, 2003, 7:04pm

At the risk of getting slammed .... I have to say this, I just can't stand by and watch.

UE, have you ever paired the Verapamil with Lithium? My good bud, who is chronic, finds that his Verap (now at either 240 or 360, either way still too low), works with Lithium at 900 mgs, much better than it did when he took the Lithium at 300. Either way, I have seen here many times, people posting saying that Verap and Lithium are some serious weapons against the beast, when used as a combo.

Obviously, not the same thing works for everyone, but that rate of Imitrex you are at sounds dangerous, and if the other suggestions don't work for you this is something you might want to ask your doctor about.

I am not a clusterhead, only a good friend and long-distance "supporter" of a friend who is a clusterhead.

I hope you find something that will work for ya soon .....without putting you in further jeopardy... I'm just trying to help, ask your doctor about this.

Peppermint

Title: Re: After 12 MG ... then what ?
Post by Ann on Sep 17^th, 2003, 7:11pm

Sounds like you should give O2 another try or try out the shrooms. Your verapamil dose is quite low. I take 120 mg 3 times a day and get palpitations every single day. I'll take those over attacks any day. I should also mention that I take 600 mgs of lithium as well. This combo has kept me pain free since June 24th! See if you can try it out.

Good luck
hugs
Ann

Title: Re: After 12 MG ... then what ?
Post by Prense on Sep 17^th, 2003, 8:32pm

Ch wont kill ya, but the meds you take can... That is a good point you brought up Pep...I am thinking about asking my neuro to combo my verap with lith. The verap is not doing much for me so far.

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 8:42pm

CC: I did this. I HAD a stockpile. But since I became chronic...the pile ran out. (chronic for 3 years) good idea though..thanx anyways
Mr.Happy: wish I had shrooms. I'd eat em' like I was at a buffet. So, how long does it take to grow some shrooms from start to finish?
Peppermint & Ann: I've been on different combo's many times which included Lithium twice. I went all the way to the 'toxic' levels. Didn't help either. Had blood levels quite often to keep the levels high too. Nothing :(
Prense: I know what you mean about the meds and how dangerous they can be. Imitrex for me is like an insulin or something. I know when I need it and I just feel like I have to take it. Like there is no other choice.
I will try the O2 again (3rd round) and up the flowrate.
I just feel like the docs are pushing me towards the narcotics...and i'd rather take the Trex. It works quickly without being drugged up like the Demerol does.

Title: Re: After 12 MG ... then what ?
Post by Prense on Sep 17^th, 2003, 8:45pm

I really feel for ya... :'( I hope you find some way to manage.

Title: Re: After 12 MG ... then what ?
Post by CC on Sep 17^th, 2003, 8:48pm

sorry unsolved i didn't happen to catch that u were chronic!! I guess that would not work for you! That is the only advice i can offer ya and i do know exactly how u feel about the trex, i won't even use anything else. i know every time i give myself half of an injection, the beast is gone within 20 minutes. So there is no way i am going to even persue other meds that i know will more than likely do nothing!!

best of luck bud! i feel your pain!!

Title: Re: After 12 MG ... then what ?
Post by Peppermint on Sep 17^th, 2003, 8:52pm

Well UE, I am sorry that these things haven't worked for you.
I don't know how long its been since you've tried the different things, but sometimes, as I've noticed here, folks will try something, it doesn't work... years or a good time later, they try again, and lo and behold... I hope that's the case for you.

If you are interested in the fungus therapy there are many with experience here, you could probably do a "storage" thing if someone doesn't have enough room for their own :) until you are able to grow your own. Happy gave you the start...go for it - good luck and good vibes to you man.

good linking Happy,
Legs

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 8:53pm

Thanx CC. I've pretty much gave up on preventatives myself.
Wishing you PFD & N :)

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 8:55pm

Peppermint ? Storage ? Fill me in

Title: Re: After 12 MG ... then what ?
Post by don on Sep 17^th, 2003, 9:03pm

Ask your Doc to try the IV DHE drip for a couple of days.

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 9:07pm

Thanx Don...I do that ALOT. It makes me feel fine ...while i'm on it then the beast returns within 24 - 36 hours. I do still request it for a break from the beast. It gives me a rest and works everytime. My last dose lasted for 5 days...my longest dose...I had that about 3 weeks ago. I'm almost ready for it again. They usually only give it to me for 3 days though. I found that I can only handle .5 mg doses now. Otherwise I puke my head off even with Phenegran injections.

Title: Re: After 12 MG ... then what ?
Post by don on Sep 17^th, 2003, 9:11pm

Are you chronic or episodic?

Title: Re: After 12 MG ... then what ?
Post by UnsolvedEquation on Sep 17^th, 2003, 9:32pm

Chronic for 3 years now