OK, I've posted a few times but it's been a bit since I've opened a dialog...but here goes.

This new cycle started for me about two weeks ago. I had detoxed from everything back in 2001 and was using just O2, ice pack and Red Bull for any abortive measures I needed.

To start off, I'm @ 25lpm and I have ordered the mask off the site a while back so I'm good there. Love the mask, by the way. Glad to know somebody's thinking back there...anyway, this cycle kicked in and it's been all over the map so I decided, since I moved and I live in a completely new area, I'd try a new Doctor and see where that takes me.

First experience there was awesome. They had me run through the standard neurology stuff....reflex testing, etc...then the doc asked me to smile. The thing is, I have a rather unique smile in that it's a bit crooked. I hate it, personally, but it has gotten me a few dates here and there (more on that at a different time). When asked, I explained to her that when I was born, I was rather forced out (this was 1970) and had a partial muscle collapse on the right side of my face, causing my whole face to droop. The doctors at the time said it's nothing to worry about and that it would all go back to normal in time.

It did...kinda. Without smiling or manipulating my face, things look mostly normal...so I guess there's that.

So the Doctor takes one look at that and starts brainstorming. The interesting part is that the affected side is where my clusters are at. The other thing of concern that she noticed was that the pupil on that side was noticeably larger. I had just had a rather nasty bout right before my visit there so I had though that maybe that was the case...but in my 20+ years of dealing with this monster, I don't ever recall pupil changes.

They ordered an X-Ray...not sure why...and also, my most recent MRI from my old neuro.

Before I left, they did an occipital nerve block with lidocane...just to kinda test the waters. She's working on the theory that I may have occipital neuralgia as well as clusters (joy). I also got a prescription of Gabapentin (nerve pain/anti seizure) and Baclofen (muscle relaxer). Not sure if any of them help yet...too early to tell.

The nerve block only lasts a few hours but I was PF during that time...can't tell if I was PF anyway or if it was doing any good.

Last night=Good 'til about 7am...then...Hell. I'm going back in today to see if I can get another block and get some follow up.

Figured I'd keep you guys updated.

Also, I'm doing the Batch vitamin deal on top of all this....

Un

Joe,

Occipital neuralgia...at least, from what I am learning, looks like something that CH could be mis-diagnosed as or vice versa...though, in a few cases, it sounds like some people can have both. ON (as I'll call it from now on) is usually brought on by some type of trauma. I think that's where this new neuro is coming from seeing as my birth trauma might have been a leading reason. She's thinking at this point that it may have been a mini-stroke due to what my mother says about there being a mass of broken blood vessels that were part of the process.

Sounds lovely, doesn't it? You should hear mom's version of events...you could write a horror novel from the sounds of it.

God only knows where we're going at this point. I got hit again today and they wanted to try a big Toradol injection. No dice, of course.   

Thanks for the welcome back. I'm glad this place is around. It's like your favorite motel when you're on a road trip...sucks to be away from home but at least you know the pillows are soft...

Un

I have the briefest moments of brilliance in between hits!...actually, this is something I should ask the community in general...has anyone experienced unexpected genius WHILE getting hit?

My math skills are mensa-like during a hit...analytical skills, through the roof....maybe something is stirring up in the the old brain pan that accompanies the pain but we never notice it because, well...the pain.

I have theories coming out all the time about this stuff. Mostly, just gibberish!

Un

Uncontrollable wrote on Nov 11^th, 2011 at 2:15am:


While I am reasonably bright, when getting hit I turn into a stupid, raging thing. There are no analytical skills operating. Just panic and reflex. Without a routine, I don't think I would know what to do. So if you're getting smarter while getting hit, why not find us a cure? And it does suck to have two diagnoses. Good luck with the Gaba. I know it has been a god-send for other types of neuralgia, but it didn't help my CHs at all. Here's hoping you have a different experience. Blessings. lance

S'pose I should have clarified a tad. I am definitely a rumbling idiot 99.9% of the time!

Can't get away from that part I guess...it's that .1% where you have to cough up some info during a hit...ER visit, whatever. I guess the remarkable part is the memory recall for me. Almost freakish. I think, at the same time, that's my brain saying "here's what you need! Now, leave me alone already!"

Makes more sense to me than anything else.

Imitrex,

I completely hear 'ya about the pupils. I was scared to death about eye damage...especially since I did Lasik a few years ago.

On a different note, I thought I was going to get by on "cycle lite" this time around until last night. Upper kips...at least 3...ugh. I'm scared to sleep now. You know you're in a tough situation when you play all of your cards for a hit...cold pack, O2, Red Bull...all in one stinking night...several times over, mind you.

I hate this.

Un

Update:

Still working with insurance over the Botox dealie...so, nothing there yet.

This weekend was pure, unadulterated HELL. High cycle, hits every 1-2 hours at night and 4-5 during the day. Just pure insanity. I have been taking Neurontin (Gabapentin) and Baclofen up to now and, though I know it takes a bit for the Neurontin to kick in (about as long as Verapamil, from what I've read) I just couldn't wait any longer for some kind of relief.

I know my postings over the past couple years have been scarce but if anyone has read anything from me before, you'll know that my disdain for Prednisone shows no equal. Mind you, when I detoxed from everything back in '01, they had me on 40mg a day for the better part of a year. I was not a person anyone wanted to be around during that year...so needless to say, my experience was a bit skewed.

After spending some time on the boards here and reading up on what is working for a lot of you, I called my neuro and asked about a Prednisone taper and Verapamil dose. Though we couldn't come up with a solid number for the Verapamil (I'm going to start @ 240mg...these are the little, 40mg instant release tablets so I'm doing 80mg x3 with meals), we agreed that 60mg of Prednisone tapered to 0 after 2 weeks is probably the best route for that...

I got the script yesterday and dove right in...last night, I actually slept. No hits whatsoever. No O2 needed, no Red Bull. Nothing. I'm not going to jump all over this and say I'm good to go but actually getting some sleep after not having a full night in well over three weeks is definitely cause for some celebration...so I danced a little jig in the living room this morning, coffee in hand...

Un