I can't believe I haven't thought about a forum ages ago, but here I am, suffering from CH, and apparently talked to the wrong people.
Whoever hasn't experienced the CH pain, has no idea what we are going through. I don't get it every spring (and I thought after 5 years I would be magically healed) but this year I wasn't so lucky.

I feel like the intensity of the pain and the length (last time I had it for 4 month) are getting longer the older I get. Does anyone else have the same impression?

Halunke wrote on May 20^th, 2011 at 5:45pm:

I feel like the intensity of the pain and the length (last time I had it for 4 month) are getting longer the older I get. Does anyone else have the same impression?

Yes, exact same impression - including the positive flip side of dramatically lengthening remissions, which is something I've seen several others report.

Thanks for taking the time to answer, bejeeber.

Are you saying that each attack has a lengthening remission or a cycle?

I wanted to share that I started avoiding certain foods, which trigger day attacks. I'm staying away from alcohol, chocolate, msg products, cheese and nuts. Caffeine helps me and minimizing the always pertaining headache during the day.

However, I still get nightly attacks and am still hopeful that there is a simple cure which would finally stop them altogether. While Imitrex or O2 helps keeping the Beast at bay, I'm wondering each day what I have to do to stop this cycle.
I can't help but wonder if it is mood related. In the past years I experienced certain events that heightened my mood and the CH was gone the following night.
Has anyone had the same experience, or am I going nuts?

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

Bust em.

          Potter

Halunke wrote on May 21^st, 2011 at 10:57am:

Are you saying that each attack has a lengthening remission or a cycle?

Yes - 30 years ago I started with roughly one month long episodes each year. Then they started coming a month later each year, then there'd be a 1.5 year remission, then 2 year remissions, etc.

If I would have tracked it in accurate detail I wonder if it would've shown to correspond to the fibonachi number series  :)

Somewhere in there the episodes started lasting 2 months instead of 1.

This pattern continued and my last remission was a whoppingly voonderbar 7 years (!)). Not an uncommon pattern with CH remissions I've seen other long time CH'ers report. My last episode itself lasted 2.5 months though.

Simple ways that folks are preventing their attacks include:

• The clusterbusters approach that Potter brought up. The most powerful preventative I've seen so far. Some are reporting that they've knocked entire cycles out cold. Sometimes with legal and mild Rivea Corymbosa seeds.  A Newsweek article on clusterbusters:
  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  

• The high dose vitamin D3 preventative regimen discussed in this relatively new topic:
  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  

• Melatonin 9 mg to 21 mg before bed to prevent night attacks (I don't have a very good handle on what the success rate is with this, but some CH'ers have definitely had success).
  

There's no cure for CH yet.......but the clusterbusters is as close as I've seen so far. I have not tried it yet. I have close friends on the board who were getting creamed, NOTHING was working, and busting has them trying to remember what a CH is. It's worth a visit to the clusterbusters board to educate yourself and make an informed decision. Until they find a cure! ;)

Joe

Thanks for the tip. I will definitely give it a try :)
I'll keep you posted on how it works...

The only thing we have universally in common are the CHs themselves. After that, it's kinda a crap shoot when we share experiences and interventions that do or do not work for us.  I pray you will find age brings a cessation to the hits. It did not in my case. I did "mature" from episodic to chronic, with wild fluctuations of both intensity and duration over the past 4 years.  In short, everyone is different.


Quote:

I can't help but wonder if it is mood related. In the past years I experienced certain events that heightened my mood and the CH was gone the following night. Has anyone had the same experience, or am I going nuts?

If you mean "are CHs mood, or state of mind, induced" I would say, no.  So far, no one I know has been able to outthink a hit. It is true some find exertion, which may be related to an endomorphic high, helps reduce or abort the hits.  This may explain what you are describing, depending on what you mean by "heightened." 

As far as feeling lucky goes, feel free to feel as lucky as you wish. But pain is pain, and this pain is really a pain. I do however count myself blessed to have found this community. Blessings to you. lance

So I tried the Fish Oil/Vitamin D regimen. Sadly it didn't have a positive effect, rather aggravated the beast.
At this point I get an attack the moment I sit still and don't move my head. For work I have to work on the computer all day long, so I can't move around constantly.
I wish it would just stop.... :(

Are you at least able to keep 02 with you at work? I was in law enforcement for 30 years and took to keeping an E-Tank in the trunk of my cruiser, in high cycle buckled into the front seat next to me! People just assumed I was a medically trained cop and had 02 available! Sure makes a difference in the abort time when the tank is always "right there" so as soon as you feel the tingle/tension feeling start you can blast it with 02.

Joe

PS: The wish it would "just go away".....an almost daily thought on cycle. :'(

Halunke wrote on May 27^th, 2011 at 10:02am:

For work I have to work on the computer all day long, so I can't move around constantly.

I too work in IT, so when I'm getting CHs I take an O2 cylinder to work in a backpack (easier to carry along with the mask plus regulator) which sits under my desk, out of sight.

When I get a CH, I just grab the backpack and go somewhere quiet to abort the CH. I always work out a few potential places beforehand so I know where to go.

Even if I'm in a meeting, people know I may have to leave it at short notice for a few minutes, but I've discussed this before hand so there are no surprises.

I've also got things like Red Bull in a draw, so everything is close to hand.