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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello, this is my story.
        
(Message started by: Agro on Aug 15^th, 2006, 9:52am)

Title: Hello, this is my story.
Post by Agro on Aug 15^th, 2006, 9:52am

Hi everyone. I am Paul. I am 32. I used to be a firefighter in the City of Nottingham and am now a full-time final year law student. I'm English caucasian and my CHs began in 2001. I get a cluster every 6 months then have 6 months off. They strike over a period of approx. 6 weeks, occurring everyday (occasionally every other day).

I tend to have 2-3 shadows per day, and the Beast usually arrives at 4am. I tend to go to bed around 1-2am because I work as a bartender at night. I believe REM triggers the Beast in me. Therefore, it is almost unavoidable.

The Beast rarely reaches 10 on the KIP scale for me but has done so in the past maybe 4 or 5 times. Usually, I range in 2-4 for shadows and 7-9 for the Beast. This could be described as an all or nothing scenario for me.

My symptoms are on the left side. I have a 100% red eye which pours hot tears with persistence. My left nostril blocks up. The pain is acute behind my eye and around my temple, and reaches over the entire front left part of my brain up to the crown in my head. The Beast makes my scalp feel extra-sensitive as if it were scalded.
Occasionally, I get migraine symptoms including nausea and a hyper-sensitivity to light. However, I have only ever vomitted once and that was during a KIP 10 (I will never ever forget that night).

I have had oxygen prescibed to me because all the 6 other options given by the consultant were drugs. The oxygen helps the shadows disappear and reduce the length of time the Beast occupies my head. Stubbornly, I decided to stop using oxygen because I felt like I was giving the Beast "the time of day" by being forced to use something to try and avoid him. As you can guess, it led to lots of painful headaches. I am now back on the oxygen.

I lie motionless when I have a visit from the Beast. I do use my hands to massage my temples, eye and the back part of my skull above my neck. I sink into a trance and although I am fully conscious, it feels like a dream. This is because I normally get the Beast after I fall asleep. However, when the KIP scale increases, I become only too aware of what is happening to me and begin to writhe in pain on my bed in tears of agony.

I've never banged my head on anything. I apply pressure with my fingers. I find that I can often fall back to sleep during an attack but I have no idea whether I am suffering migrainous unconsciousness or am merely falling asleep because it's late. I've never fallen asleep before the apex of the pain, however, which leads me to think it is just sleep.

I've read the terms and conditions of this forum regarding illegal drugs. I don't condone drug abuse but I have an open mind and as you know, we will try anything to avoid the Beast and I have tried cannabis. One way I have found to avoid REM which triggers the Beast in me is to smoke cannabis before I go to sleep. This has had a positive effect on me insofar as reducing the number of high KIP CHs. During an attack, it can also help me to fall asleep.

I feel for you all. Only my mother understands what I am going through because she has read this site. I worry that I will get CHs before exams because the whole of the rest of the day I feel as though my brain is fragmented - as if I cannot properly string memories and thoughts together.

I live in hope that one day the Beast will just disappear as I have read he is supposed to...

I'm not letting the Beast defeat me. He who has hope, has everything.

Title: Re: Hello, this is my story.
Post by LeLimey on Aug 15^th, 2006, 10:02am

Hello Agro
Nice to meet you, I'm in Bingham so I'm not far from you :)
What consultant are you seeing? Is it one at QMC or City?
Have you ever tried melatonin? Its very good for people who get hit alot at night. It works on REM sleep and is good for blocking hits in that way.
Red Bull or el cheapo equivalents are very good for blocking both hits if you can guzzle it quick enough and also for banishing shadows. I'd highly recommend it, you have to drink it fast though, no being girly and sipping daintily!
There is loads we can (and will) do to help. If you want to chat anytime say and I'll either pm you my phone number or I'll ring you if you prefer, neither is a problem.
Lets get you sorted eh? Before those next exams too.
Helen

Title: Re: Hello, this is my story.
Post by Agro on Aug 15^th, 2006, 10:25am

Hi Helen. Mr Humberstone is my consultant at QMC. Coincidentally, my sister is Matron of Neurology dept. at QMC and my brother lives in Bingham! Maybe we should meet up for a drink or something for a chat. Other than these flaming headaches, I am a normal guy! PM me if you'd like to go ahead. It would be interesting to hear about your story and also, I will try the red bull thing! I drink a lot of coffee.. I wonder whether that may have the same effect (i.e. a triple espresso during an attack!)?

Title: Re: Hello, this is my story.
Post by E-Double on Aug 15^th, 2006, 10:29am

You'll be fine.
I have gone through graduate school with the "beast" and sat through board certifiaction exams only to be delayed by an attack.
Once the attack was aborted I moved on and finished and of course increased my credentials.

Much of this is about attitude. Though it is difficult, we must try to be positive and live the best we can!

Good luck1

eric

Title: Re: Hello, this is my story.
Post by LeLimey on Aug 15^th, 2006, 10:32am

Hi Paul
Check your pm's!
Coffee will work in the same way, espresso was one of those things I found helped before diagnosis funnily enough and it was then confirmed by reading here.
I see Dr Evangelou at QMC, I think he's lovely, brilliant, very supportive and genuinely interested in finding stuff that works, can't really ask for more than that now can you?
Give us a shout, we'll meet up whenever you want :)

Title: Re: Hello, this is my story.
Post by Margi on Aug 15^th, 2006, 10:35am

on 08/15/06 at 09:52:13, Agro wrote:

I get a cluster every 6 months then have 6 months off. They strike over a period of approx. 6 weeks, occurring everyday (occasionally every other day).

My symptoms are on the left side. I have a 100% red eye which pours hot tears with persistence. My left nostril blocks up. The pain is acute behind my eye and around my temple, and reaches over the entire front left part of my brain up to the crown in my head. Occasionally, I get migraine symptoms including nausea and a hyper-sensitivity to light.

I lie motionless when I have a visit from the Beast. I do use my hands to massage my temples, eye and the back part of my skull above my neck.

I find that I can often fall back to sleep during an attack but I have no idea whether I am suffering migrainous unconsciousness or am merely falling asleep because it's late.

One way I have found to avoid REM which triggers the Beast in me is to smoke cannabis before I go to sleep. This has had a positive effect on me insofar as reducing the number of high KIP CHs. During an attack, it can also help me to fall asleep.

whole of the rest of the day I feel as though my brain is fragmented - as if I cannot properly string memories and thoughts together.

I wouldn't rule out migraine as a diagnosis....all of these things you've said here can indicate migraine...especially getting relief and sleep from pot. That's usually a major trigger for clusters.

Not trying to start a fight, just trying to help, ok?

Title: Re: Hello, this is my story.
Post by georgej on Aug 15^th, 2006, 10:54am

Good morning, Agro.

It sounds as if you and I have many things in common. Your cycles present the same as mine do and did, particularly when I was younger. (I'm 52, and have gotten CH since 1966.) Six months between, then six weeks on. (I'm now up to three years between.) Shadows during the day, and a single hit triggered by REM sleep late at night. The level of your hits. Even your method of coping sounds familiar--especially the trance-like state you induce, although I cannot lie down, nor can I sleep with any level of hit. (Maybe a middling shadow). I'm also a left sider. I do not medicate, nor have I used oxygen in the recommended fashion , although I may try it next go-around.

The level of your coping skills is impressive, particularly for one who's only gotten them since 2001. Coping takes immense self-discipline, and long practice. Coping techniques break down for everyone on higher level hits, though--even long-timers struggle and pace with a Kip 8 or above.

You can use that trance-like state in order to cope, should you choose to continue to go unmedicated. If you're interested, take a look at the "Coping" thread on the CH Specific board. We'd welcome your input. I firmly believe that learning to cope is as important as finding the right doctor and the right treatments.

Also try Charlie's "Dr. Wright's Circulatory Technique" and see if it works for you.

It's also good to hear that you're on top of medication options, should that become necessary for you.

I applaud your attitude and grit--it's attitude that makes all the difference with these monstrous things. It's the difference between a warrior and a victim.

It's a pleasure to make your acquaintance.

Regards,

George