It is my 6th week of attacks this year. And I was curious, how do you fight to live normally during this period? How can you force yourself to put yourself together and go to work/school etc... I feel mad right now and I don't really want to do anything I don't want to try anymore. Helpless. Im eighteen but I have already moved from my mother and I live alone. And after those hits I don't have nobody to talk to, to hug. It feels like hell have come for me. Like the devil is not enough.

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

Hi Solen,

Hang in there. We all know and feel it is not easy. You are not alone here.
And hope you know the CH-website in Poland START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Virtual [smiley=hug.gif] from Hungary

Steve

Neuro, meds, oxygen?

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

heres a treatment that many of us have had good results with.

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

this was a one time treatment for me and i've been pain free for over a year now.

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. [smiley=hug.gif]

Joe

There is a new Polish site,
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
but you should really focus on forums (from my experience - I was able to find much more reliable info here).

Good luck ;-)

The most important thing is to find a proper neurologist. If someone not really experienced, who lacks knowledge about CH tries to treat you, it may be just a waste of time. I don't know where exactly do you live, but probably the best headaches expert in Poland lives in Lodz (I bet he would recommend you a good specialist in your area).

I don't know whether your clusters are chronic or periodic but I don't think using steroids is a good idea (as long as you didn't try the other meds with less side effects).

Had a really bad day today but i've realised that they come and go 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 support
Colin

Thank you truly for help. Support is the best we can get.  Colin hang in there.  [smiley=hug.gif]

btw. Joe, happy 49th birthday! I wish you everything you want to have and all those things you want to have and you have them, but you still don't know you do.

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

We all feel like that at times.  I'm still looking for my preventative that works and am very down about nit at the moment...if you wanna message me for a good old moan then go ahead.  
The only thing I can promise you is if you have a good look around this site and ask as many questions as you can, the guys here with more knowledge and information and advise than I have, will help you.  Once you're armed go to your doctor and once you're on the right meds you will see a little light at the end of the tunnel.  I'm not saying that you'll never feel this way again...you will but it'll be easier
Good luck and I hope you get some relief soon
S x

Quote:

And I was curious, how do you fight to live normally during this period? How can you force yourself to put yourself together and go to work/school etc...

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          

are you feeling any better today :)

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.

keep checking in. we'll make you stronger like the bionic woman ;)

Quote:

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.

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.   :-*

A whole bunch of us men cried like babies when we found this place. I still can't adequately explain the relief at knowing I wasn't alone, there were people who understood my pain, and even though they had no idea who I was, they all wanted to help me.  ;)

Joe

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