Hi everyone. I am so grateful that I found this site.
I started having CH at 19 but wasn't accurately diagnosed until I was 33. I have pretty long remission periods. The last was 7 years. I am 4 weeks into a cycle and I am miserable. The lack of sleep is making me nuts. My CH only happen at night after I fall asleep and usually last about 1-2 hours.
I had an MRI last week that was unremarkable except for a small maxillary cyst.

I am wondering if I even need to try a preventative medication since my remissions have been so long in the past. I would like to hear from others with long remission periods. My heart goes out to those of you who always have these headaches. I can not imagine what that would be like and after reading some of the posts here, I almost feel guilty for complaining about mine.

Best wishes to all of you.

Hey Angela;

I'm relatively new here myself but I'm learning a lot as I read through the posts. I'm sorry that you need this place but I sure am glad that you found it !

Best;

Jason

Usually my episodes last about 6 weeks. I dont think the headaches are any worse this time around, I am just older and not tolerating the lack of sleep like I used to.
My last episode, I was treated with Prednisone which stopped it but I have been on 2 courses this time with no relief. I have refused all offers of narcotics to "get me through it". I generally sit in front of a very cold air conditioner with ice on my head and pray for relief until it comes. I also discovered that a Claritin reditab could knock one way back within minutes but it returned later.
This site has made a tremendous difference this time around. I am a nurse and couldn't even begin to rate this pain until I read the Kip Scale. I am so thankful I found it.

Thanks for the welcomes.
Batch, thank you for the info. I tried a couple of the triptan drugs years ago and they were effective but it was requiring more doses than were recommended to keep them at bay. That is when I was given Prednisone and was CH free for 7 years. Oxygen sounds like the safest, most effective treatment. Since there have been so many years in between my episodes, I havent even thought of CH for about 6 years. I guess I thought I was cured. I knew there wasn't a cure but I was unaware that so many years could go by between attacks.
Here I sit at 4:30 am with no sleep and I'm supposed to be up for work in an hour. Looks like I will be working from home today.

Glad to see you're getting all kinda good advice from the members here Angela.

I hate to see you just praying for relief when it sounds like you could possibly be aborting each and every one of these attacks.

So yep, it turns out to be how you use the meds/O2 that makes all the difference in this case - if you were doing the Batch style O2, and had 1/3rd dose imitrex injections that anthony g mentions as your back up, you could be a pretty unstoppable beast killing force as you ride out the last (hopefully) 2 weeks of this cycle.

Angela you mentioned you are a nurse; hopefully you have access to oxygen. have you tried breathing it at high flows with a non-rebreather mask?

Well perhaps you can ask your Doctor to prescribe oxygen so that you can abort the night time CH's and get some sleep.

Will be looking forward to hearing your good news of this...

Christy