well there is no normal living. no matter what you do it's a pain in the ass. the best thing you can do is accept the fact that you have this condition and you'll have to live with it. best thing i've found to help me cope is posting my worries on this sight an seeking support from others like me and you. post what ever dumb question comes to mind. now that your here coping will get much easier trust me
check your PMs

Actually this is my first diagnosed time of attacks so I am just beginning "experimenting" with my neurologist. Right now - steroids and valproic acid. We'll see. During attacks I keep the windows wide opened (it's about 10 degrees outside so the cold air helps.. sometimes).

And thank you for the hug.

Margaret

Welcome to the board. Really push the docs for oxygen. Read the link on the left titled "oxygen info" and print a copy for your doc. I cna abort an attack in 6-8 minutes with oxygen. I have smaller E-Tanks that i keep in my car so I'm never far away while I'm on cycle.

Glad you found us, hang in there.

Joe

Had a really bad day today but i've realised that they come and and there's plenty of time inbetween.
I found that this forum really helps me even if i talk a load of tosh sometimes.
It's just really helpfull to know that there's plenty of support from the people "who" really know
Here's a bit more
Colin

What helped me to get through it was having a preventative and abortive that was working for me, and the support of the people here.  If I did not have those 3 things, then it seemed like my life was nothing but a burden to those around me.

hugs,
mel

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It's a very good question.

At your age, I had been living with episodic CH for about 5 years.  By that time, my cycles had become well-established--twice a year, 6-8 weeks at a time.  I was living alone for the first time.  At the time, the medications available for treating CH were very primitive compared to those being used now.  None of them worked for me.

I understand very well what you're asking.  The problem is...I don't have an easy answer.

To some extent, despite all the treatments available, and any support you may have, you must push yourself beyond what you believe you can endure.  You have to discover the strength to fight for a "normal" life within yourself.

The challenges are considerable:  Days and nights of unbelievable pain.  Sleeplessness.  The depression that often comes along with a cycle.  Isolation and loneliness--and the very real perception that no one around can understand what you are going through. 

The people around you are unable to truly understand.  They never can, and they never will.  Realizing that is simply part of living alongside this thing.  That won't change, no matter how long this thing is your companion, and no matter how long you battle against it.

A person I respect asked me recently how one comes to terms with CH, learns to accept it, and learns to endure a cycle and move on.  I've had to grapple with that question, because--partly--I don't know. 

Some of it is simply time and experience.  After many cycles, one begins to understand that it goes...this far...and no farther.  You begin to understand that no matter how bad it gets during any one attack--it ends.  You know it will.  So minute by minute, you learn to hold that in front of yourself:  The precious KNOWLEDGE that it will end. 

In the end--We're warriors. 

It's a war that we did not choose, that we did nothing to deserve, and that has no clear ending.  Others may not have to fight this war--but we do.  In order to survive, at some point we have to move beyond being victims of this thing and adopt a warrior's attitude. 

We fight each battle as it comes, as best we can, any way we can.  We continually look for ways to overcome our enemy (and our companion) .

We defeat him every time.

You are stronger and more resourceful than you may believe that you are.  You'll be fine.  I know it.

All my best to you,

George      

I'm sorry, now, I am going to sound stupid. I was crying this morning when I read your posts. Yesterday I had a pain free day and night, but this morning it returned. The only strength was made by you. Thank you. I pushed myself trough the day because of the words you gave me. Thank you.

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Solen, nothing you have said,  was at all stupid.  I can't tell you how many who have found this site have cryed tears of relief knowing they were no longer alone in this.  Lean on us, ask questions.  We're all in this together.   

We do whatever it is we have to to get through it.  Having this place makes all the difference.  You are not alone.

Hugs and pf wishes,
Beth