I first must say that I am glad to have found this website and it is comforting to know I'm not alone.  I was diagnosed with have CH's about a month ago.  It is my left side from behind my eye all the way down the left side of my face.  CH's started back in May and at first I thought it was sinus problems due to allergies.  But then I started to keep track and noticed that I was going through a few days of attacks and then nothing for 2-2 1/2 weeks.  Then the CH's would be back for a few days and then gone again for another couple of weeks.  After a few rounds of that I had enough and got in to see the Dr..

He prescribed 100mg sumatriptan in pill form and wanted to see how the CH's responded.  They did work but last week (my worst week as of yet) it just wasn't fast enough.  I went to the Dr office to see if I he could give me the nasal spray without an appointment.  The secretary went back and asked the Dr and he wanted to see me right away.  After telling him about the few previous days that were full of attacks throughout the day followed by the longest nights of my life, he prescribed me O2 and 20mg sumatriptan nasal spray.

The nasal spray was great for my attacks the next couple of nights, the days weren't as bad as earlier in the week, just full of shadows.  Fortunately I didn't need the O2 or maybe unfortunately I couldn't use it instead of the spray because I wasn't given the correct set-up when I picked it up.  That will be resolved tomorrow.

And then just like that the beast was gone.  What a relief, I was looking forward to a couple of weeks of being pain free.  BUT, this time I only got about 4 days and Friday and last night I got another round.  Very minor compared to last week but still not fun, not looking forward to what tonight might bring.

This whole CH thing is such a wicked thing, it has been tough getting people to understand and I am happy to know that all of you will.

The thing I am trying to figure out is the cycle.  Is all of this time since May the cycle and I'm still waiting for it to go into remission?  Or are these 2 week periods being PF the remission? 

I'm hoping that this is just part of the cycle and that someday they the CH's will leave me for a longer period of time.  I truly feel for those of you that are chronic sufferers. 

During the worst days it is reassuring to come here and read up so I wanted to make sure I introduce myself.

Thanks!
Paul

Well now that I got a good nights sleep and not having any CH's last night I thought I would add a little more.

I have tried many of the things mentioned by others here.  Ice packs have worked at night when I feel a big one coming, Monster and Red Bull seemed to work over the weekend.

The thing that has not worked yet is me asking my wife to read this site so she might understand how I actually feel.  All week last week she thought I was mad at her when in reality I was just trying to handle this thing.

I'm sure I'll have some questions for all of you who know a lot more about this, I have learned a tom already.  Now I just gotta get the wife to visit!   :)

See if she will look at the section devoted to supporters of CH folks. 

Re. cycles: They can be variable and some folks don't have them! Cluster-gods can be great teases....

PaulSyman wrote on Aug 20^th, 2012 at 12:40am:

Fortunately I didn't need the O2 or maybe unfortunately I couldn't use it instead of the spray because I wasn't given the correct set-up when I picked it up.

I would say unfortunate, get this right and it will make you smile.  ;)

In 2008 my husband started to keep track of his episodes in a notebook.  He writes down anything that might be pertinent - time of day, current meds, foods, alcohol, etc.  He always hated writing this stuff down.  After about 6 months he cycled out.  Now, almost four years later, he's back to battling the beast.  Now he finds the notebook helpful. 

He's been able to look back at things that he's tried, and how/if they made any difference.  I think that it's also good because it reminds him that they will go away eventually.

Funny part - I pulled out my own diary that I hadn't used in ages, and it opened to a page in 2008 where I was at witts end with this shit.  It made ME feel better too - if I survived it before, I can do it again.

Hey Paul, and welcome. While it sounds as if you have made a good beginning on things, I'd recommend you follow through with these:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance