I've heard the term but can't define it! I know several on this board suffer from a dual diagnosis of migraine AND cluster, as if one isn't enough! What's your current treatment regimen? Do you have home oxygen? A decent prevent med? What part of the world do you hail from? Definitely glad you found us, welcome.

Joe

Hi,
My neuro called it (exact words) "migraineous neuralgia - common name cluster headaches". Maybe that's what your doc was saying. A rose by any other name............
Maz

Joe - WOW! Thanks for all the info.

Maz - I am still going to call them HELL!

This site is my new tool for fighting CH's

What Joe said!  Man that guy is sharp!  You'd think he had ch or something.   

thanks, Joe.

Jerry

One other option is to start calling the Cleveland clinic daily asking for any cancellations you can slip into. There's always the chance you'll catch an opening, and it'll let them know you're serious about getting in.

Joe

Crossing fingers, toes and eyes for ya!

Joe

Mike NZ wrote on Sep 27^th, 2013 at 1:58am:


This!

Bob, what is you plan "B" if they come back after the Pred dose pack is gone?

Marc

Yea Bob, this place is priceless.

I noticed that your last cycle was two years ago.  For the past ten years I have been, thankfully, on an every other year cycle.  My sentence started 39 years ago and it was every year until as noted above.

Have you had the same experience?  This thing is crazy.

October is coming and I am nervous.

Steve G

  Well, I got bit twice by the beast last night. I knew that the prescription for the prednisone was too small. Usually I get around 90 pills at 10mgs, this time 21 pills at 4mgs. Will hopefully see the doc on Monday and get a new prescription and try again.

A lot of people swear by Melatonin for the night-time attacks.  2, 3 mg. tablets about a half hour before going to bed.  You can find Melatonin in the vitamin aisle of any pharmacy or grocery store.  Supposedly it keeps one from going into REM sleep where the beast loves to make an appearance.

If you can't stand the sounds of ice..try using a frozen bag or peas or corn.  It molds to the side of your face or neck beautifully and can be re-used over and over again. 

Linda

Hey CB- hope things are going better for you, maybe even better than you expected they would be going at this point in time. I may have a little insight for you, based on my personal battle with CH, and I noticed no response to your question, so...

23-Yr Vet with CH here...no meds other than non-RX stuff that, if it worked at all in pain-reduction (sometimes killed CH in a few minutes if taken promptly) was only good for a few years, and I use little if anything for the past 10 years, it seems. I used to get hit with 3-4 month cycles, 3 CH/day, sometimes 4, 3-4 hr duration, 6-7 days/wk, remissions were sometimes shorter than cycles (2-3 cycles/yr, have had 4)...sometimes I was basically borderline chronic CH. Seems I'm heading into some sort of long-term remission from the beast since 2008 on the 18th year, as everything to do with CH has slacked off, with longer remissions, shorter cycles, shorter CH (about 1/4, but sometimes a few hours), less CH cts/day, usually. I'm still coping, and in the middle of a cycle as I type, but CH has been sporadic the last 24-36 hrs...I may be nearing the end of this cycle after about 8, maybe 10 days...I'll take that over 4 months, no problem...I sorta lost track of this round already...all in all though, lucky me to be on the down-hill side of the slope!!!

Your mention of a cold can on the head (never tried that, so, thanks for another possible weapon to fight with... , then asking about brain-freeze from ice-cream reminded me of what I just did a few nights ago, that I do frequently with night visits with the beast, which is to step outside and breath the dense, cold night air (higher O2 concentration and chilling effect)...in through the nose, out the mouth, DEEP, slow breaths at first, then pick up the pace as needed until the effects begin kicking in (just don't hyperventilate with cold air...hurts my lungs after a minute or two)...it cools the sinus cavity and seems to take the edge off for most of my night CH when massage/pressure-points fail...the colder the air, the more effect it seems to have...works pretty quickly for me in mid-winter when it's -20 to -30*F outside. Night before last it was about 25*F and snowing with high humidity (wet snow), and I felt relief coming within about 2-3 minutes...I slowed my breathing to about 20/min and gave it another 5-6 minutes and went inside...maybe another 10 minutes and I was back in bed...still a bit uncomfortable, but dropped from about 7 Kip-Scale to 2 or less...slept soundly soon after. Back in the day when I was hammering it out in the 9-10 Kip with 2/3 or more of my daily CH, this method would reduce the beast to maybe 4...won't subdue it entirely, but the reduction in pain is significant enough that I use it whenever all else fails...has always worked for me in CH pain-reduction, and for over 20 years now. If you're in a climate/season where nights aren't cool/cold, this won't help much...my summer CH weren't effected if it was a hot night....cold, dense air seems to be the key.

That said, you may be onto something with the brain-freeze, although you may not want to take it to the point of hitting that painful stage where it makes you groan in agony...suggest just a few good-sized spoons full to start, let the cold soak in for a few minutes, then hit it again, just to the point where you notice your CH pain changing, then it may begin to reduce it shortly after. Hopefully it doesn't supercharge the CH and make it worse, but if an external cold source helps the pain, the ice-cream might do even more if regulated correctly for your tolerances. Thing is, you may find that a all-out brain-freeze causes a distraction form CH, enough so that you don't notice it for a period of time...either way it may help.

Give it a shot and see what happens...let us know...I'm curious if it might work, myself.

You're definitely not alone...just found this site a few nights ago, myself...lots to read, but I'm going to get on the vitamin D-3 preventive regime shortly...sounds very promising, and far better for me than injections or oral drugs.

Wishing you, and all of us, PF days & nights.

CB... talk to Batch about the D3. It's working really well for a lot, but you need to do it RIGHT. He just chewed me out for doing it wrong. My dose was not what I needed. He's our D3 expert. Listen to him.

And the Melatonin.. I'm almost completely quit having night hits. But I take the melatonin (10mg) every night. Takes a little while to get in your system so don't get upset if it doesn't work the FIRST night. Took about a week before it worked for me and that's been years ago (on my third try  )

But O2 has been the MOST effective abort that we've found on this site to date. It works on about 70% of us and no side effects.

I'm hoping the D3 regimen will "stop" this cycle (that's been going on since 97) sometime soon - now that I'm doing what Batch told me to do and taking it RIGHT.

Good luck...