Just started a new episode last night. Last episode was two years ago. I was diagnosed with clusters over 20 years ago.
Hope to get some help here of any kind if you know what I mean.

The neurologist two years ago said that I was experiencing a "cluster migraine". Any body ever hear of this?

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 Joe,
Glad I found this site also! :)

I'm sitting here with my cold pack with what I call a "cluster hangover". It is how I feel the day after being bitten by the beast the night before. The only definition I can come up with for a CH-Migraine is HELL!

No treatment yet but I will be calling Monday to get an appointment with my neurologist. Hopefully get some prednisone, it usually works but not always. I do not take a prevent medication. I do not have home oxygen but am very interested.

I live in Brunswick Ohio and it seems that when the episodes start it is usually around this time of the year and last for 1 to 3 months.

After reading some of the posts on this site, I feel not so alone with this bourdon. Our CH's causes heart ship for us as well as our love ones and friends.

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............ [smiley=confused.gif]
Maz

Hopefully your neuro is a headache specialist neuro. We have found most garden variety neuros just don't have the experience and expertise to treat a rare disorder like CH.

Here are some CH sufferer recommended docs in the ohio area, any near you?

Ohio

Cincinnati:
Dr. Joseph Nicolas
University of Cincinnati Physicians

Cleveland:
Dr. Mark Stillman
Cleveland Clinic - Neurological Center for Pain

Dr. Stewart J. Tepper
Cleveland Neurological Center

Columbus:
Dr. Francis J. O'Donnell
OrthoNeuro

Grove City:
Dr. John Horn (PCP)
Grove City Family Health

Hilliard:
Dr. Donata Rechnitzer (PCP)
ExpressMed

Lewis Center:
Dr. Perry D. Mostov, D.O.
OSU Family Medicine at CarePoint Lewis Center Primary Care

Westlake:
Dr. Carl Ansevin


Some hints to your docs knowledge base:

Oxygen should be your first line abortive he prescribes you. Not some oxygen generator but home tanks, with a MINIMUM flow rate of 15 LPM, preferably 25 or better, and a non re breather mask. I can kill an attack, completely pain free, in less then 5 minutes using just oxygen. Check out this link as it must be used correctly or it doesn't work:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex injectors are a bit pricey but I always keep a few on hand for the times I can't get to my oxygen.

Prednisone is a good transitional therapy, for most it'll hold the beast completely at bay while a prevent med builds up in your system. It's a harsh med so it shouldn't be taken long term but is great for short term relief. For a very small percentage of CH'ers, it can actually break a cycle.

In order the most popular prevent meds are Verapamil, Topomax and lithium. Hopefully he will suggest starting on one of those as they'll reduce both the frequency and the intensity of your attacks.

For now, get to the store and grab a four pack of energy drinks. Rock Star, Red Bull, any containing the combo of caffeine and Taurine. Chugged at the first sign of an attack many can abort or at least really reduce the intensity of an attack. Help get you through the weekend at least.

Joe

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 ;D

Listen to Joe.. the advice he just gave you is priceless.

Also, another prevent is Zonagran (it's about the same as Topamax without the side effects). My neuro switched me to that about a year ago and it's been about the same as the Topamax that I've been on since 99).

Stay on here and read read read.. We're here to help all we can and we DO understand what you're going thru.. we've been there (or are there).

Keep us informed..  :-*

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

thanks, Joe.

Jerry

Hey Guys,

  Had 3 CH's of 8 on the scale Monday night and 2 last night. Is funny that you could set your watch on the timing 11:30pm, 1:30am, 3:30am. Last night got lucky and skipped the 3:30 CH but a strong shadow this morning.

I found the doctors that Joe recommended and guess what. The earliest appointment I can get is January 2014 through the Cleveland Clinic! That crazy. So I decided to go to my primary care doctor and see if she could get me in earlier & guess what. She retired a year ago. So I made a appointment with her replacement today at 9am. I hope this guy is familiar with CH's. Hopefully he will get me some prednisone and an earlier appointment with one of the doctors Joe recommended. The prednisone really works for me and 80% of the time it breaks my cycle.

  One thing that helps me when I'm in the clutches of a CH is to go sit on a soft chair and roll a very cold pop (or beer) can around my head. This almost sounds like the tennis ball I read about here. If I use ice packs, to sound of the ice cracking is very loud and seems to make things worse. 
 

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

Went to the doctor yesterday and got my Methylprednisolone pack. Took the first dose (6 pills) and no CH last night. :) 5 days left of doses as they ween you off them. Hope its enough to break the cycle. 

Crossing fingers, toes and eyes for ya!

Joe

Enjoy the break, take time to enjoy life and prepare for when the taper finishes (hopefully with the cycle gone).

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

Enjoy the break, take time to enjoy life and prepare for when the taper finishes (hopefully with the cycle gone).

This!

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

Marc

So far,

Wednesday night no CH's - 6 pills, Thursday night no CH's - 5 pills, Tonight cross fingers - 4 pills. Small headache before bed maybe from the med, but i did feel ripe for a CH.

As for plan "B" - Will go back the the new family practice MD (So far i like this guy) and see if he would get me faster in to one of the doc's that Joe recommended. In the past i did start a new Methylprednisolone pack and I still have the old trusty cold aluminum can, finger massage, shower, and breathing exercises.

I am still BLOW AWAY by this site where people understand CH's! Most grateful!
Thanks for your concern.
Bob   

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

Hello Steve G.

  It is usually a yearly cycle for me but thankful I got an extra year off. I'm wondering, last year had a lot going on with my dad in the ER during this time.
Lots of emotional up and downs before he pasted away. Our family and I were a wreak for a while. Maybe that's why a got some extra time off.

Thanksgiving 2 years ago was the worst for me and the beast, he almost won, this is why I am not going to sit on my ass and hope he go away on his own.

Bob

  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.

clusterbob,

pred is an amazing drug for cluster (stops the pain while taking it).  I took it early in my cluster years,  at age 29 I developed AVN (death of bone in the hips) and was unable to walk anymore.  I had to undergo a double hip replacement at age 29 and all the docs agree that pred was the cause.  I tell you this because I want you to be very careful about how much you use this drug.  I understand it is tempting because of the relief it provides.  I fell into the trap and I don't want anyone to go through the nightmare I had to go through.
I am in cycle right now (11 weeks into it) and I rely on Oxygen and Zomig nasal spray at times.  For me Oxygen is the best thing going at the moment. 
That's my 2 cents for you.  This disease is terrible and the pain is unreal.  But we have to go through it at the end of the day.  Pain free wishes for you and me!!!!

On a side note,  I like the motorcycle!!! I love to ride too.

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

Metrolamar,
   Hope thing are working out for you.  Well you just threw a monkey wrench in to it but, at this point, if I only need to take a pack or 2 every couple of years maybe it would be ok? Much thanks for your information & Ride Safe!

Linda,
I will give it a try, Think you might be on to something. The aluminum can seems to transfer the cold to a specific spot for me. If I rotate it, you get another dose of cold, but that's just me.

Question, Has anybody gave themselves a brain freeze during a CH by eating ice cream and did it help?

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... 8-), 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.

23YrSurvivor,

   Hope you are having a reprieve on the CH's today with all that snow out there. I do not take any regular prescription meds either so far in my life (knock on wood). I guess we all have our own exercise that we do to help us cope with CH's. My best defense when not on prednisone is to wake my self up from sleep to start my exercises. It cuts the time and pain down some for me. I might have to do it a couple of times a night but if I try to sleep through it, I will be up with in a hour or two with a 8+ or more. The brain freeze idea was just a random thought.
   So far have been on prednisone since Oct 2nd.(60mgs.) and will take my last 10mg pill tonight as I am weaned off it. No CH's since the 4th. Only got 15 pills on this prescription. Fingers crossed for tonight after there are gone. 
   Have been hearing a lot about vitamin D, doing more research and will probably start a daily intake of 1000 to 5000 for a month or two to see what happens for me during my CH season. Take Care!

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...  :-* :-*

Thanks BarbaraD!

I am learning so much that my head hurts!

Bob