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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> 3:04 AM and I am still alive
        
(Message started by: rapunzel on Mar 2^nd, 2006, 3:28am)

Title: 3:04 AM and I am still alive
Post by rapunzel on Mar 2^nd, 2006, 3:28am

Hello-
I just joined this site, just found this site- and have to wonder where you have been all of my adult life. What a wonderful feeling- to know there is someone else out there that actually will know what I am talking about.

I have a history of cluster headaches. I suffered many years ago with as many as ten a day for what seemed like an eternity- my doctor and er thought I was a drug addict, and nobody seemed to truly believe me until one day I found a neurosurgeon who diagnosed me, and 'cured' me with a two week steroid drug regime. When he believed me and my symptoms and said he could help, I cried.
And once the drugs were gone, so were my clusters-
until about a week ago.

Its been seven years. I am 37 years old, mother of three- and I havent slept in five days. Well, okay- I have slept for about an hour a night, until the excrutiating pain wakes me from a dead sleep and I need to be shot and put out of my misery...never before did my cluster headaches attack me in my sleep but now they do. I managed to get forty whole minutes of sleep tonite before the torture ritual began. I was afraid to go to bed tonite for fear of another attack, and unfortunately I was correct. The left side of my face is still tingling and my eye is still swelled but its bearable now. I cannot explain how wonderfully happy I am to have found you all- sad that you too suffer the agony I wouldnt wish upon my worst enemy, but so grateful that I am not the only one. My husband tries to understand but there really isnt a way to describe this hell. My mother suffers migraines and doesnt understand the reason why I cannot hold still, as she calls it- "tries to run away from the pain"...I am surprised that I havent crushed my own temple in trying to fight the pressure inside...I am surprised that my eyeball hasnt exploded from it-also surprised that I am not blind in my left eye from it. And nobody I know understands that desperate taking of pain pills at the very beginning twinge of pain to try and ward off the agony that is coming...
I am allergic to Imitrex. I didnt know until when it was prescribed to me and I used it during an attack- I couldnt breathe, felt like I was on fire, and ended up back in the e.r. where I was told I should never use it again. I was also given an opium based nasal spray prescribed to patients who suffer "phantom pain" after amputation. All that did was make me vomit.

So, I just wanted to introduce myself and say "Thank you, for being here and for understanding". I believe I am about to enter another round but when it passes, I will read the posts here - I have an hour before my day actually begins again and family starts to wake up to start a whole new day.

Title: Re: 3:04 AM and I am still alive
Post by Jasmyn on Mar 2^nd, 2006, 5:12am

Welcome home Rapunzel!

Yes this is a home for the likes of us. We are not always the most sane group of people but we are a hell of a support group.

I'm sorry that you suffer from this condition but here we understand.

Have you tried Oxygen and Melatonin?

Look on the left there you will find a lot of info.

Hope you get some sleep. It is hard to cope with 3 young ones and no sleep, I know, I'm also a mother of 3.

Vibes to you and wishing you some PF times.

PM me anytime when you need to talk, I'm on the other side of the world and usually up when the rest of the world is asleep.

Hugs Jas

Title: Re: 3:04 AM and I am still alive
Post by LeLimey on Mar 2^nd, 2006, 6:04am

Hi Rapunzel!
I'm a mother of three too and I know how tough it is trying to juggle everything some days. Welcome home :)
There is a ton of info here for you to read and think about, please ask all the questions you want and we'll help all we can. If you want to vent feel free, you can't say anything we haven't all thought ourselves so don't worry, you're amongst family here.
looking forward to getting to know you better
Helen

Title: Re: 3:04 AM and I am still alive
Post by Dragnlance on Mar 2^nd, 2006, 9:36am

Hello Rupnzel, and welcome home.
Very very sorry to hear you have the monster in your skull too. (it does prove that clusterheads are more hard headed than most! [smiley=laugh.gif])

I agree with Jas. Check out Oxygen, read the info to the left.
<-------------------------------

I take an herb called Kudzu, which helps me. THere are a number of posts on this site about it. I am chronic and have been for all my life. The other day I had 2 pain free days in a row!! Since I have been drug free for several years I know that it is the Kudzu that is responsible for this.
I suggest reading about it first. THere are tons of resources here, and lots of care and love.

You are no longer alone! That by it's self can often be the salvation some of us are looking for.

Pain free wishes!!

Dragnlance

Title: Re: 3:04 AM and I am still alive
Post by Richr8 on Mar 2^nd, 2006, 1:52pm

on 03/02/06 at 03:28:55, rapunzel wrote:

What a wonderful feeling- to know there is someone else out there that actually will know what I am talking about. Awesome feeling it is! Knowing no one could possibly understand besides another sufferer. I suffered for 13 yrs myself befor I found this place.

steroid drug regime. When he believed me and my symptoms and said he could help, I cried. Tthe steroids work for breaking my cycle also, but I still have annual cycles.

..never before did my cluster headaches attack me in my sleep but now they do. Most of mine are at night and sleep deprivation and fear of sleeping can be almost as devastating as the clusters themselves. I began using 6mg of Melatonin, which I learned about here, and it greatly enhanced my ability to sleep

So, welcome and please read all that you can here on this site. I didn't see you mention Oxygen in your post. Many here have good results with Oxygen as an abortive and it is atleast worth a try. There is a link on the left which explains Oxygen use in detail. What you don't find, please ask. There is a lot of knowledge and experience here and plenty of folks willing to lend some advice or an ear. Best of all, the lights are always on.

PFDAN,

Rich

Title: Re: 3:04 AM and I am still alive
Post by llreed on Mar 2^nd, 2006, 7:30pm

Hi Repunzel,
Welcome aboard - sounds like hard times. :( This board can be comforting when times get bad. Listen to all the above it could help, and help is always worth trying for some relief. Take care and PF wishes. Look forward to seeing you around the board.
llreed

Title: Re: 3:04 AM and I am still alive
Post by Charlotte on Mar 3^rd, 2006, 4:01pm

Welcome home.

I'm glad you're alive.

People who have migraine only can't understand that need to move.

I'm sorry abouyt the new cycle starting, but it helps to have people who are also there.