Its been 20 yrs. and countless ignorant docs. None of them know what to do. All they have done for me for 20 yrs is start me on vicotin and valiumn at age 12 and work me up to oxycontin and xanx by the time I was 21. I don't know what else to do. I go to the ER, get 5mg of dilaudid, walk out, and drive myself home. And the doc think I'm a junkie cuz my tolarance is so high from all the years of taking opiates. My brain has been "re-wired" as they have told me. I will NEVER be the same again, never. And it sucks for me. So do you see my frustration??? I can't eat because I might trigger a headache, I can't sleep because I'll wake in the middle of the night with one. I've already lost 15 lbs. this cycle. Do I need to keep going? I can't spend time with my son because he knows when I start pacing that to "be quiet because daddy's head hurts". What kind of life is this??? Its not a life, its not even an existance.  

In your distress/frustration you didn't tell us whether you are seeing a good headache doc and what--of the stadard meds--you are using.

Clearly, treatment options have improved significantly since I started my CHs 35-years ago. There are good options available to you.

No good docs. just pain managment. he's got me on MS Contin 30 mg 2x a day and zanaflex 2 mg 2x a day. Opiates seem to be the only thing that work. none of the verapamil, senequan, baclofen, thorazine, magneziun, amatriptaline, depakote, lamictal, do I need to keep going?

ChefChris wrote on Nov 7^th, 2008 at 3:33pm:

No good docs. just pain managment. he's got me on MS Contin 30 mg 2x a day and zanaflex 2 mg 2x a day. Opiates seem to be the only thing that work. none of the verapamil, senequan, baclofen, thorazine, magneziun, amatriptaline, depakote, lamictal, do I need to keep going?

No triptans? This regimen seems archaic.  get oxygen.

             Potter

Wow, that is not a good recipe for success.  
Dang.  You've tried all the other popular drugs?  Nothing worked?  Have you gone about it in both the preventative and abortive methods?  

If you say it helps you, I won't knock it, but you are playing with fire.  Your method would be my absolute last resort, even after an operation from Dr Ali Sultaneh.  

BMoneeTheMoneeMan wrote on Nov 7^th, 2008 at 7:03pm:

Your method would be my absolute last resort, even after an operation from Dr Ali Sultaneh.

Every time I hear that name I envision the Ali pig on the BBQ pit! :D

There does come a time for a real HA nerologist somewhere in this story right?

     I can't eat because I might trigger a headache, I can't sleep because I'll wake in the middle of the night with one. I've already lost 15 lbs. this cycle. Do I need to keep going? I can't spend time with my son because he knows when I start pacing that to "be quiet because daddy's head hurts". What kind of life is this??? Its not a life, its not even an existance.  

[/quote]


Sounds like the opiates are working good  [smiley=wtf.gif]:D  you surely dont need our advise. :o

Pain killers do squat for CH. You need a referral to the neuro. You can get from the ER doc. Your doctor is treating you with treatments from 25 years ago. Dump him. Take the links Dennis posted for you with you and demand reasonable treatment.
Hang tough take the advice given and you will be able to manage this.
Then you can play with child and get on with life.
all the best
the bb
I never eat a big meal while in an episode. Just snack all day.
Never relax ever

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Says here in the first post that he's been to see Dr. Saper at MHNI.  Just my opinion, but I would like to think that he would've prescribed some O2 and some kind of triptan.

What do you say Chris? Whats up, the people there are top notch from what I hear.
some docs will surprise ya though. Cheer up Chris, CH wont kill ya, it will get better. 02,02,02
the bb

You had a doc giving you valuim when you were 12 years old?

[smiley=troll.gif]

  Once a junkie always a junkie.

               Potter

what a nice encouraging thing to say to somebody there potter. with your positive reinforcement i think i can do this. thank you potter!

ChefChris wrote on Nov 12^th, 2008 at 9:42am:

what a nice encouraging thing to say to somebody there potter. with your positive reinforcement i think i can do this. thank you potter!

  Been there done that before you was a twinkle in your pappys eye.

                    Potter

ChefChris wrote on Nov 6^th, 2008 at 6:20pm:

Its been 20 yrs. and countless ignorant docs. None of them know what to do. All they have done for me for 20 yrs is start me on vicotin and valiumn at age 12 and work me up to oxycontin and xanx by the time I was 21. I don't know what else to do. I go to the ER, get 5mg of dilaudid, walk out, and drive myself home. And the doc think I'm a junkie cuz my tolarance is so high from all the years of taking opiates. My brain has been "re-wired" as they have told me. I will NEVER be the same again, never. And it sucks for me. So do you see my frustration??? I can't eat because I might trigger a headache, I can't sleep because I'll wake in the middle of the night with one. I've already lost 15 lbs. this cycle. Do I need to keep going? I can't spend time with my son because he knows when I start pacing that to "be quiet because daddy's head hurts". What kind of life is this??? Its not a life, its not even an existance.

[smiley=troll.gif]