Hello... again. I first joined ch.com in 2009, right after I was first diagnosed with CH. My neurologist had me try Prednisone (made 'em worse), plus Verapamil and Indomethacin (did nothing at all), before trying Depakote/Divalproex. Those stopped the cycle dead in its tracks. Moved from CT to GA shortly after that, and I've been mostly pain-free since, just a few shadows in December & January.

Until this year. CH started up again after Christmas, and I renewed my Divalproex prescription since my last bottle expired a year earlier. Attacks came and went, nothing higher than a K5 or 6. In February, they became more severe and more frequent. Divalproex didn't seem to be working at all. Went back to my new doctor in GA, he doubled up my prescription and also gave me one for Vicodin, since a Lortab from a friend seemed to stop an attack.

2 weeks later, I went back to see him today, since none of the drugs were helping. Had an attack last Sunday that started at 7:00 p.m.; the worst was over in 30 minutes, but stayed at K2-4 for 9 hours! Lortab and 2 Vicodin 3 hours later didn't touch it.

Doctor referred me to a neurologist, saying, "I don't know what to do. Except prescribe oxygen, which I've never done before." Sad when you know more about your condition and possible treatments than your doctor, but that's one of the joys of having a condition that affects only 0.1% of the population.

My next appointment, on the 18th (and I've got nothing to get through a CH attack except grit and determination until then), is with a headache specialist at a neurological group, an LPN. As I was leaving, I thought, "An LPN can't prescribe meds, can they? Hmmm..."

The LPN's bio says, "She has many years of inpatient experience working in neurology and neurological rehabilitation." Well, so far, so good. However, it goes on to say, "Her medical model is focused on patient education. She feels education is paramount for understanding and managing neurological disease."

Education? I have plenty of that, thanks to this website and others! And all the education and understanding in the world isn't going to subdue the Beast at 3:00 in the morning!

I foresee more lost time at work while I see someone else who (probably) can't really help me, and another appointment with one of the neurologists at another time, so more lost work time... and 'round and 'round we go!

I have to wait for my appointment too and I got yanked off my protocol.  Have you been downing caffeine?  Energy drinks and such?  Ice or heat might help. 

Lortab and Vicoden won't work.  They're narcotics.  You'll ramp up on the usage and get rebounds.  Careful with that.

I agree with Jmag, tread lightly with the narcotics as rebound becomes a real issue.

Try calling the neuro's office on a daily basis asking if they've had cancellations. It'll give you a chance at an earlier appointment while alerting them that you're suffering a LOT while you're waiting. At the first appointment tell them you need oxygen. If they won't prescribe it, your hunt for a neuro will have to go on else where.

Joe

Thanks for the replies, folks. Yeah, I'd already figured out the hydrocodones don't work, so I haven't bothered with them. Seemed like a Lortab worked when I got hit at a friend's house; guess it was just a coincidence that the CH quit 15 minutes after taking it.

Thanks for the tip about calling for cancellations. That hadn't occurred to me. After almost 36 hours pain-free, I got hit with a monster tonight. Still hasn't quite gone away after 4 hours. So I'll be calling a lot as soon as they open on Monday!

I also wondered tonight why, when my doctor said he didn't know what to do anymore, I didn't ask, "Have you ever heard of Imitrex?"  :o

As for other home remedies, can't say anything has really worked. As for caffeine, people constantly ask me, "How much coffee do you drink in a day?" because my coffee cup is never empty and never more than arm's reach away.  :) Tried the energy drinks, and they didn't help. Not sure the taste is worth it even if it did help. Okay, after tonight, I'd overlook the taste...

Again, thanks for the tips. And is it me, or is this smiley  :o perfect for CH sufferers?

Paul_zero6 wrote on Apr 15^th, 2012 at 2:14am:

As for other home remedies, can't say anything has really worked. As for caffeine, people constantly ask me, "How much coffee do you drink in a day?" because my coffee cup is never empty and never more than arm's reach away.  :) Tried the energy drinks, and they didn't help. Not sure the taste is worth it even if it did help. Okay, after tonight, I'd overlook the taste...

Welcome aboard Paul....

My own experience with caffeine (my friend!)...is that TIMING is the most crucial aspect. Too much...and/or at the wrong time = MORE and longer hits....where NO amount of additional caffeine will have any beneficial effect. 

The human body is a remarkable stasis machine...give it too much of anything...for too long...and it adapts. Pound it with a blast...e.g. imitrex, caffeine, alcohol...and the effects can be dramatic and quick.

What I'm saying is to save your bullets..you just may find that that "surprise" blast may be effective....

Best,

Jon

Well, I tried the Monster treatment when I got hit just as I got to a supermarket. Whether or not it would have worked is kind of moot, since the attack had been going on for 30 minutes and was at K5 and rising by the time I chugged the drink.

I didn't think the attack would amount to anything, or i would have run over to the section with the cold energy drinks right at the start.

I did get to look like an idiot standing in the frozen foods section with a bag of frozen corn plastered to my head.  ;D  (Must have been a run on peas; all I could find were boxed peas. Noooo!)

Not a good day today; it's like a classic rock radio station - the hits just keep on comin'.

That's funny...a bag of dried peas...anyway, Jon's right. Timing is everything. Waiting a half hour hoping it will go away, or thinking it won't be too bad, is a recipe for a really bad time. O2, imitrex, and energy drinks all are more effective just about when we suspect we may be getting hit and aren't quite sure it will stay on. Don't know why I still indulge in that kind of magical thinking, though. When a hit starts, it ramps up, unless I grab it by the throat and choke the life out of it. Blessings. lance

No, no... I was looking for frozen peas; had to settle for frozen corn.

But a bag of dried peas would be hysterical.... I can picture a CH newbie standing in the canned/dried veggies aisle, holding a bag of dried peas to his head and saying, "This isn't working... maybe I should try the lentils next?"  ;D

Found out yesterday at work that O2 works! Now I just have to get the new neurologiist to prescribe it for me... (I'm lucky to work for a company large enough to have an emergency medical facility on site, and fortunate to have it staffed by people who listened to me when I told them I needed a non-rebreather mask and at least 15 lpm.)

Paul_zero6 wrote on Apr 18^th, 2012 at 12:08am:

But a bag of dried peas would be hysterical.... I can picture a CH newbie standing in the canned/dried veggies aisle, holding a bag of dried peas to his head and saying, "This isn't working... maybe I should try the lentils next?"  ;

It seems that the beast must be vegan as nobody ever seems to try frozen meat!



Paul_zero6 wrote on Apr 18^th, 2012 at 12:08am:

Found out yesterday at work that O2 works! Now I just have to get the new neurologiist to prescribe it for me... (I'm lucky to work for a company large enough to have an emergency medical facility on site, and fortunate to have it staffed by people who listened to me when I told them I needed a non-rebreather mask and at least 15 lpm.)

Great news in finding just how amazing oxygen is. You'll now be one of those trying to tell everyone else to try it, just like so many of us who use it to kill off our CHs.