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 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

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


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

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

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


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:


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.