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        Cluster Headache Help and Support >> Cluster Headache Specific >> Frightening experience
        
(Message started by: Dragnlance on Mar 3^rd, 2006, 9:14am)

Title: Frightening experience
Post by Dragnlance on Mar 3^rd, 2006, 9:14am

Hi all,

Last night on the chat board, I was talking with a friend, who it turns out is fighting their first bout with CH.

As many of you know, I am chronic and have been all my life. I do not remember them "starting" the first time. So the comments made about how frightend they were, about the start of the headaches made me stop and think.

For those who get these monsters later in life (after age 15) where they had a "normal" life and suddenly get hit, what kind of terror must they go thru? Is it a brain tumor, brain cancer, going insane??? What could this be? Why is it happening? What will happen to me? Will I ever have a Life again? What can I do?

Frightening indeed.

I did my best to assure them that while the beast is not curable at this time, it may be in the future. I also did my best to stress that they can get thru this. It is not easy, nor plesant, but you can do it!!! You are strong enough, you just don't know it.
I also stressed that even with chronic CH, one can have a life. I adv that I can work 2 jobs, and one of these jobs has a very tough attendence policy. I have worked here now for eight years, despite the CH. All my co-workers know about my CH and know the signs.

The only reason for this post was to point out something about how people feel, and how sometimes people like me can take it forgranted. Maybe it can be that will help someone cope better.

Thanks for reading.

Lance

Title: Re: Frightening experience
Post by Guiseppi on Mar 3^rd, 2006, 9:52am

Great post Lance, you forget how scary it was at first. Along the same lines, remind yourself occcasionaly of what your supporters are going thru. Those of us who have been at this for over 25 years can take that poor supporter for granted! Give em a hug and a kiss and a thank you now and then.

Guiseppi

Title: Re: Frightening experience
Post by Dragnlance on Mar 3^rd, 2006, 10:24am

Well said Guiseppi!

Hope you are feeling better today!

Lance

Title: Re: Frightening experience
Post by sandie99 on Mar 3^rd, 2006, 10:38am

Lance,

My father died of brain cancer - it begun with a terrible headache - so you can probably imagine how I felt when ch came into my life! I, unlike my dad, have had HAs all my life, but, naturally, nothing like ch. During the worst attacks I did wonder what it was like for him.

CH came into my life when I was 21. And I thought I was going nuts. You know, pain cannot be this horrible... And now I've been PF nearly 11 months, which is a miracle. I did get hit last month and that hit had its purpose: I'm not afraid of ch's possible comeback. I know what I'm dealing with, I have meds in my cabinet, and supporters right here. :)

I feel for all the newcommers... And by that I mean those who have just got their first visit from the beast. It's terrible especially then when you don't know yet what kind of devil you're dealing with. I go back to January 1, 2003 time to time to remember the day I got my diagnosis. What a relief that was.

Best wishes & PF days,
Sanna

Title: Re: Frightening experience
Post by BarbaraD on Mar 5^th, 2006, 8:29am

I got hit later in life (after menapause) and it WAS frightening. Like you said, brain tumor - the UNKNOWN. I was diagnosed within two months (the end of the first cycle), but it was a frightening two months. The next hit about 6 months later was just as frightening even tho I knew what it was. For years, what worked the last cycle, wouldn't work the next and ... well you know the drill on that one. When I went chronic.. that was another experience. Took years to come to acceptance, but after I reached that point, then I learned to live with them and things got better (if CH can get better).

But I DO sympathize with anyone getting hit the first time. It scares the devil out of you. It's a total life change and it stays...

One note I'll put in here. I've been on this MB since 98 and I"ve never had a qualm about giving my phone number out to another sufferere - and I've never turned down a collect call in the middle of the night from a sufferer. Only another sufferer can really understand what a CHer is going thru and if someone needs help we should be there for support. I've never forgotten how scared I was when I got the first hit and if I can help someone get thru it without the fear I went thru, I'm available 24/7.

Sorry, I just get on a soapbox ever now and then...

Hugs BD