I know that since you've started getting these headaches you've been on a dozen and a half to two dozen different medicines, a good bit of them prescribed by your family doctor during your first cycle or two of these things. Back then you probably took exactly what was prescribed. After being correctly diagnosed by a specialist and trying to find the right combination of medicine for relief, you probably took a little more than you were told. Now, many of you are experts at what, when, and how much to take. You are to be commended.
I know you've broken the speed limit, buy a lot, to get home to head off an attack, some of you even pulled over for an hour or two.
During your attack free cycle maybe your at home or work or at the mall when all of the sudden you get that feeling in your head, or neck, a sign, I swear it makes a noise..... and you freeze in your tracks. It's what I call "vinegar" feeling, I guess because it feels like vinegar. A pea sized signature of this thing that is just reminding you that it didn't go anywhere, but is just waiting around like a bear in hibernation.
I bet you've used this as a form of birth control, it makes you stop having sex....or maybe that's just the meds, I think I'll need some input on this one.
I know that during your attack you've used some words that even your parents don't know what they mean.
I know that when your attack is over, that feeling is better than sex, but I might need some input on this one.
You drink, quit, drink, quit, drink, quit, drink.....
You smoke, say your gonna quit, smoke, say your gonna quit, smoke.....
You don't explain how bad a cluster headache is to friends, co-workers, even family.
You laugh to yourself when someone says they have a splitting headache, I'm laughing typing it.
I hate this one, but if one of your kids ever got this disease, you would give your life to cure them..................


My name is Dave. I live in South Jersey and I'm 47. I've been on this site off and on for the last 7-8 years but didn't become a member until yesterday. Why? I just started a cycle a few weeks ago and I was telling my girlfriend about the information available and the forums and some of the "anecdotes" presented. She said "why don't you write something about how you feel". That's what this was. By the way, it will be 4 years on July 2 since Debbie and I met, and she moved in a week later. I was the winner in that deal. By the way she didn't know what a CH was, let alone that I get them....but she would.
My first headaches were at the age of 32, scattered over a few weeks, family doctor was no help, they went away, no big deal right, hahahahaha.
20 months later I get that vinegar feeling in my head, unbearable pain, eyes drooping and tearing, phleghm taste in the mouth, the bear shows up. I start at 1 a day, work up to 6 a day, back down to 1 a day, each headache 1-3 hours, same time every day. Run off to my family doctor, no problem she just read about this, she knows what it is, makes me take a pee test, 2 days later calls me up.....I'm pregnant!
Out with that doctor, off to a specialist, although my wife at the time was a little let down, she was picking out names!
During those first 2 cycles I have taken medicine I can't remember the name or quantity of, and didn't even know what I had. But my brother in law did. He found my diagnosis on the computer, it was a kind of good day.
My nuerologist confirmed it and on my next cycle prednisone did the trick, 60mg for 10 days, then 5mg taper every 3 days, and verapimil.
I still cycled, about every 14 months and 8 weeks long, but in September of 2008 I started a cycle that lasted 6 months. The prednisone didn't seem to work so well anymore. I was also using imitrex when i could.  I went on a 7 day steroid treatment, can't remember I think methylprednisone and it worked....for 7 days. I then had what was my worst experience with this disease, involving depakote. On the 6th day of taking this I was in agony. Still getting the headaches, only 1-2 a day but long 3-4-5 hours a shot, the depakote doubled the size of my legs and my knees ached in the worst way. Man did I feel close to death. I told the doctor we have to try something else, and although she wanted to stay with it for another week I seriously wasn't sure I could make it, and that was that. Don't be afraid to tell your doc you know more than them when it concerns how your body feels.
It was at this point that I tried lithium, and it worked, 600mg in conjunction with dilt-cd 240mg. March 2009 all is good, go to 300mg lithuim and stay on 240mg dilt-cd.
A few weeks ago cycle starts. Again a change, 1 headache every 3 days which is good, I'm not complaining but after initial 1 1/2 hour hard pain I have a 2 day light pain headache. Off to my doc....increase lithuim to 1200mg, a little arguing , ok push dilt-cd to 360mg, dexamethasone 2 mg for 7 days, re-up imitrex, and anti nausea pills, I've been throwing up this round. I thinking the CH's will return after the steroid treatment, I'm working on getting it re-upped; and today I priced oxygen and will go that route if I can't control this cycle.
I know I said CH's made me smart, but not really. I've read what many of you have said here and it gave me confidence to tell my doctor what I thought we should do, and one way or another settle on my appropriate plan of treatment.
So I ask you, in your opinions, is this path I am on a familiar one, as far how my cycles are changing, or do you think I'm just pregnant?

WOW! 50 years old, 31 year sufferer here. What an awesome initial post sir.  You've got the right attitude, and sounds like you finally have a neuro who is on the right track. Lithium has been my savior for many many years.

When you abort a headache...a feeling beter then sex??? They're neck and neck for sure!  A cycle really cutting into the sex life??? Yeah, been there done...or actually not done... that.

Work hard on getting the 02....it should be your number one abortive. I can be pain free in less then 10 minutes. It's almost impossible to believe until you've experienced it.

Dang glad you've come on the board, you have a definite gift for the written word.

Joe

thanks brew, i think

Welcome to the madhouse dock. Listen to what Joe said. 02 is cheap, very effective for most, safe and knocks one in 10-15 minutes.

Hi Dave and welcome.  Glad you decided to join in.
This is a good bunch of people....here to help and support 24/7.

Be well....
Jackie

Welcome Home!  Glad you decided to join the family. 

Excellent first post!  I appreciate your humor.

I'm with Joe and the others on the O2.  Read up on it and get a script ASAP.  (sooner if you can)  At 25 lpm and an O2ptimask I can usually kill a hit within 5-8 mins if I get to it early.  Within 10-12 if I get to it after it hits K7 or higher.  An energy drinkwith Taurene in it is also very helpful, and sometimes I will use it with the O2 to kill the lingering HA that sticks around for a while afterward.

Now that you've finally joined the family, we are having a "family reunion".  The OUCH convention is in July in Atlanta.  If it is at all possible for you to come it would be well worth your while!  We are having two of the top CH Neuros in the world there to speak to us along with the chance to meet and talk face to face with a number of other clusterheads. 

Jerry