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,

Welcome aboard...  Sorry the beast is back and making life including sleep difficult... 

The following chart lists some of the latest thinking in treating cluster headaches... I covers acute treatment abortives as well as preventatives...

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

Have you asked your neurologist about oxygen therapy as an abortive?  See the following link for the "How To."

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And don't let them go after the maxillary cyst without a good reason...

Take care and check your PM...

V/R, Batch

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

Hi Angela,

So you are 4 weeks into an episode - how long have your episodes lasted in the past?

Are you currently doing anything to abort the CH attacks?

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.

The prevent is not to prevent a cycle, it's used to reduce the intensity and frequency of the attacks while you're "in cycle," getting headaches. If for no other reason then to test a prevent out to see how you tolerate it, I'd talk to your doc about it.

Now seeing Batch'es request that you check your PM's.....I suspect he's pm'ing you about oxygen and PH levels. Pay close attention to all he sends you, he knoweth of what he speaketh! 31 years of the beast, episodic, oxygen is still my first line and most effective abortive. On average it takes me 6-8 minutes to kill an attack. Cheap, effective, no "imitrex hangover!"

Welcome to the board, hope we can be of some help.

Joe

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.

Hello and welcome!
Sorry you needed to find this site but it was a god send for me for sure! I understand when u say you "thought you were cured" because 7 years in between bouts! I had 11 years in between bouts! Just rememeber this "beast" is un predictable for sure!! I was introduced to 02 from batch on this site it really works !!!!! and imitrex inject I use a third of the the stuff check out the imitrex tip on the left colomn hope your pf soon!!

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.

I know what you mean about the long remissions. I'm at the tail end of a 3 month cycle that bit me after a TWO YEAR remission.......had almost convinced myself I'd outgrown the damned things! >:(

Joe

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?

No, I haven't tried oxygen. I had heard of oxygen being used to treat these but never realized it's importance until I found this site.
I never get CH at work. Thank goodness my boss has been very understanding about the late morning arrivals after a bad night with little sleep. The last thing I need right now is to worry I will lose my job.

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

Hello Angela, I'm Angela too!  Nice to meet you.

I started at 14, diagnosed at 27, I am 32 now. I too have had long remissions, 3 years at the longest.  I take a prevenative, Verapamill.  For an abortive: I have been rx'd imitrex in viles with disposable syringes, so I can choose my doosage to stop the headache.  But, I only use the Imitrex if the oxygen doesn't work (which is about 7x's out of 10).

I don't take a single thing during remissions.  I enjoy life to the fullest.  I know these buggers won't go away and I can't resist life waiting for my next bout. I hope you got on the oxygen, it's the greatest!

Take care, glad you found us!  Sorry your a sufferer.
Angela