Okay, so a quick follow up to the treatment that started 3 weeks ago. I started this cycle early September (around Labor Day) with some minor pre-cycle headaches. My first blown attack was Sept. 18th and lasted daily (minus 3 days) until Oct 28th.

At any rate, I got an occipital nerve block on Oct 28th and starting a gradual increase of Verapamil the same day. 80mg 2x a day for 2 days; 160mg 2x a day for 2 days and then 240mg 2x a day till pain-free for two weeks then I'm allowed to taper it back down.

I'm also up to 25mg of melatonin before bed and oxygen as needed.

Luckily, I haven't had a major attack in two weeks. Just not sure if it's from the nerve block or the Verapamil - my guess is the latter since I had two attacks within 5 days of the nerve block but none since I maxed out my Verapamil dosage.

That being said, I'm stuck in "limbo" now. I'm still getting shadows on the right side. It was a little odd during the first week after the nerve block. I was getting twinges on the left side of my head in addition to the right which is where I get attacks. The twinges are gone on the left finally, but now I'm just stuck with these constant shadows on the right side. From my brow to the top of my head, the occasional pain in my temple and in the back of my head down into my neck. Same places I get shadows after an attack but maybe only a 2-3kip now max. Just enough to be distracting, annoying and drive ya nuts.

I haven't taken any Relpax in over two weeks other than the two doses the the nurse practitioner recommended that I try on Monday to ease the pain of these shadows. (Dumb idea, did not help anything except to make me feel over-medicated, lightheaded and knocked me out on the couch an hour later - the effect of which I still felt the following morning as I couldn't even stand up long enough to take a shower - had to sit in the tub for fear I was going to fall).

Neuro put me on a Methylprednisolone 4mg dosepack (taper) that I started this morning. Hopefully, this will provide some relief and rid me of this final "stage."

Usually, when it's over, it's over. I don't recall a cycle quite like this one before. I'm at least able to function and am working every day. They understand what's going on at work and have really been super.

Wow, how I do ramble.....

Anyway, has anyone else ever experienced anything like this? I don't want the Red Bull, esp. not with the Verapamil. O2 has helped to take the edge off of some of the rougher "ice pick" HA's, but I haven't needed it in about a week now.

I'm not taking any other pain killers, excedrin, advil etc. as they aren't working either. Small doses of caffeine aren't working either, i.e. Coke, coffee, etc.

I'm still having trouble sleeping, but can get up to 5 hours of fairly solid sleep so I can deal with that.

Any suggestions or stories are welcome. As always, thanks so much for your help and support. I really don't know what I would have done had I not found this group 6 years ago.

Thanks,

Katie  8-)

Not much to offer you. I had 3 month cycles spring and fall for over 20 years, hit my 40's and they rocked all over the place, 8 month cycles with 2 year remissions, the beast morphs, just when you hit a comfy cycle that you can deal with, he switches things up.

Hoping you're at the tail end, hang in there.

joe

Guiseppi wrote on Nov 17^th, 2010 at 7:49pm:

just when you hit a comfy cycle that you can deal with, he switches things up.

Comfy cycle? That's funny. Thanks for the laugh. LOL

Seriously, though... going into a more chronic state scares the hell out of me. I sometime wonder if the fear of getting these dumb things just helps bring them on. And then I remember, it's all in my head. (See, you're not the only one with jokes, hahaha).

They definitely change. I can always tell the difference between one cycle and another. This year was completely different for me and pretty bad. It seems like a lot of people are having a rough time of it this year from what I've been reading.

Anyway, doing my best to hang in there. You, too.

~ Katie

Katie,

Unless there is some reason you cannot take them, get some energy drinks like Rock Star or Red Bull.  Any that have TAURINE in them at 1000mg.  Also, go out and get some Dristan 4-way nasel spray.  (Nothing else will do) 

This combo MAY help you with the shadows.  At the very least, your nose won't be plugged up and you'll be able to get some work done.

This combo has worked for a lot of us here.

WOW.....25mg of Melatonin is HIGH!.  9mg.  is my max...when I tried more it made me all jumpy inside.  You may want to decrease that dosage. 

Good luck to you Katie

I have tried the red bull. I don't like to take a lot of caffeine normally, and it makes me extremely shaky. Plus, I have read that red bull and verapamil aren't a good mix.

Doc said to dose between 12-25 mg so I've gradually increased to the 25mg. It's the only way I've gotten any sleep. I'll taper it back down when I start the verapamil taper. I'm taking 11 pills a day right now + the pred taper. Today that makes 17 pills. I take more than my 86-yr old grandpa who, by the way, doesn't have an oxygen tank in his living room either. LOL

~ Katie

Katie,

First of all let me set your mind at ease.  You are a long way from chronic!  Chronic is defined as over a year without at least a two week break.  I'm chronic, have been episodic.  There are advantages to both along with the obvious down-sides.

A few years ago there was discussion as to whether or not Verap extended cycles.  There was some consensus that it helped with the number and severity of hits, but caused the cycle to extend giving a mixed blessing.  I weaned myself off of it a number of years ago because of the side effects being worse than the benefit, but I was on a much higher dose.

I understand your frustration with the constant shadows.  Sometimes I wish it would just hit and get it over with!  Hang in there.  It will end.

Jerry

Callico wrote on Nov 17^th, 2010 at 10:53pm:

A few years ago there was discussion as to whether or not Verap extended cycles.  There was some consensus that it helped with the number and severity of hits, but caused the cycle to extend giving a mixed blessing.  I weaned myself off of it a number of years ago because of the side effects being worse than the benefit, but I was on a much higher dose. I understand your frustration with the constant shadows.  Sometimes I wish it would just hit and get it over with!

The last time that I tried Verapamil was in 2004. It wasn't the right dose back then. They had me on 180SR and it was the worst cycle EVER. They also tried Depakote and prednisone that go round. I felt like it would never end after 56 days of hard hits. That's what I'm afraid of this time, too. And the worst part is that the Verap gives me a headache! I've learned to tell the difference and it usually goes away after about an hour or with a coke.

At least I'm not getting attacks now, but you're right. I've thought on more than one occassion that I wish I would get hit just so the constant shadows would stop. But, you know "be careful what you wish for."

I think that the Medrol is helping actually. I started to go PF for a little while last night. Could've danced an Irish jig.  ;D

Thanks for the advice. We'll just have to ride this out.

~ Katie

Hi Katie, I have ongoing shadows that are usually between 1-3, sometimes as high as a 5. My docs call that a "baseline" headache. It doesn't respond to O2 but does decrease with Imitrex. I don't normally use Imitrex for this, but when I have a major attack and do take the Imitrex, it helps. The only other thing that really does help for the ongoing pain is a nerve block. It at least drops the pain by 50%. That's with shots in the back of the head, side of the head above the ear, temple area, and above the eye. The eyebrow ones are a bit painful. The block lasts anywhere between 5 and 15 days for me. If they just hit you at the back of the head (occipital) then maybe that's part of the problem. By the way, the block doesn't do a thing for my major daily hits.

Also, I recently started getting an opposite side headache that feels a different from the cluster. It's sharp and painful, but just isn't the same. It scared me at first because I had just had a block and I thought it might be side switching. I tried taking some good old fashioned naproxyn for that pain and it knocked it right out. If the opposite side headache is persisting for you, you might try some basic headache medicine like ibuprofen, naproxyn, etc. to see if it helps.

-Chris

Chris,

Thanks for that. The alternate side HA's are better, just the occasional twinge now and again. I did try some Liquid Advil and that helped.

I'm up for another block if it would work. The after affects sucked and I had tremendous pain for the first 48 hours at the injection site. It finally went away with an ice pack and some rest. I may suggest that route if the steroids don't work, but so far so good.

~ Katie

Doesn't tickle getting the shots either! Good luck. -Chris

Doesn't tickle getting a headache either, LOL. At least after a shot, the "tickles" aren't as often.

Maybe that's what they should change the name to: Cluster Tickles - it would have the same affect as when you tell someone you get Cluster Headaches. They think you're a sissy either way.

~ Katie

Now THAT is funny!

Soooo..... follow up.......

Today was the last day of the Medrol taper. I have had wonderful times of pain-free but they don't last for more than an hour or two at a time. Better relief than I've had in almost 3 months though, so I'm not complaining.

At any rate, it's been 3 weeks since I had a full-blown hit. I'm going to start on the verapamil taper. I've already started tapering down on the melatonin and am down to 15mg before bed now. Still waking up several times throughout the night, but the sleep between is so much better. Again, no complaints here.

I figure at this rate I can be med-free by Friday. I finally just decided that it's not going away and I'm probably just extending this with the verapamil so we'll try this. What's the worst that could happen? I get hit, suck down some O2 and go back on the verapamil. Won't be anything I haven't gone through before.

Anyway, just thought I'd check in since it'd been a while.

Hope you are all doing well and are headed toward PF days.

~ Katie

Hi, Katie. Please just be careful with tapering off the verapamil (cuz it seems to be working, or something is) too soon or too quickly. I don't mean without a drs care, I mean jumping too soon to the conclusion you've got the beast licked. I hope and pray you have, but I have to say, I much prefer dealing with these shadows (even daily at times) than with the chronic hits of 4-6/day I was getting. Everything's a trade off with chs. And you know, you can get taurine tabs w/o caffeine, although I think the taurine supercharges the caffeine. Still, it might be worth looking into. There are cautions about mixing the two (verapamil and taurine) but they are not exclusionary per se. Just be cautious, good luck, and God bless! lance