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BigSi110 · Posted: Fri Feb 22, 2008 4:28 pm Post subject: Simon's Story

As explained before, I am 37 and I started getting head pains at around 14.

At that time, I had a liking for strong coffee (which has stayed with me

) and started to get intense pains over my right eye. The eye would partially or completely close and start to water. Initially, the pains would last for about a minute and then disappear.

However, over time, they got worse. I think my first trip to the doctors was about 2-3 weeks later. The diagnosis then was migraine and to cut out all dairy and caffeine from my diet.

The attacks happened every 6 months or so and always at night. I just thought they were migraines, so took all sorts of things; herbal remedies (feverfew), paracetamol etc. The attacks would last for about an hour with usually a series of run-up attacks before they got really bad and then a few run-down attacks before they slipped away until the next time.

I carried on like that for many years, occasionally seeing the doctor who'd just say 'migraine' and send me away with another useless prescription.

There have been a few notable attacks - virtually all of them have been at night or during the early morning. One struck without notice when I was driving along the motorway with my sales manager as passenger. I tried to ignore it, but in the end he asked me to stop as I couldn't see the road. Trying to recover from an attack when there's someone sitting next to you is terrible. I just wanted to crawl into my shell, but he was waiting for me to get better before we made a sales call.

Suffice to say that call was one of the worst I've ever made. I had to ask him to disappear for an hour in the end and for me to sit in the car and to try and rid my head of the pain. Not good.

Over the years I have found the attacks getting worse in intensity. Each fresh attack brings on a higher degree of pain and each episode gets longer. These days it's a good 3 months from first hints of pain to being sure they're gone.

The pain: these days it starts with a sharp pain above my right eye (although the last attack was over the left - very odd) and usually always at night, between 11pm - 3pm or so. As soon as the pain hits, my eye waters and my nose runs. I have to put my hand over my eye, as much for comfort as to shield it from light. ANY light is bad. ANY noise is bad. I oftem shiver, like a fever, mid-attack and sometimes feel nauseous. The pain envelopes my head and takes over, relentless in intensity (at its worst) and very sharp.

I usually go into one of our spare bedrooms - I don't want to disturb my wife, but equally, I don't want her breathing or movement disturbing me. She finds it all very frustrating as she feels completely helpless, but ignoring me is the best thing she can do.

The pain steadily gets worse - it's like a hot, rusty piece of barbed wire is being slowly pulled each way through my eye, back and forth, time after time. The intensity comes in waves, sometimes relatively (for sufferers...) faint, sometimes very intense, but always reaching a crescendo of pain.

I have found that I want this crescendo to happen, as I know then that things will get better. However, the last cluster proved me wrong again!

The past few years have seen me getting highly frustrated with the incapacity of it all. I often cry, which is hard to admit to and feel like getting a hammer to end the pain once and for all.

The pain, mixed in with extreme tiredness, makes things bad during the day. The two don't mix well and can often trigger each other. In pain-free times I am almost obsessed with getting good sleep (8 hours) as regularly as I can.

Food doesn't seem to be a trigger, but alcohol when in an attack cluster is very bad. I leave alcohol alone for a while afterwards too, just to be sure.

My mood darkens too. Heaven help anyone making a noise or bothering me. My son, now 5, is great and understands 'daddy's headaches' and keeps quiet and helps out.

During an attack, I find opening a window is essential. Zero noise and zero light are essential too.
I usually wrap up in a dressing gown and sit in bed. Having my head comfortable is vital, but hard to do - a mixture of pillows helps, but it's never easy to get just right.

I find that 'thinking' the pain away can help, so I think of good things in my life and try to concentrate on them. If I feel the pain has reached a crescendo, I tend to relax a little and try to sleep - more often than not the Nurofen will help that. When I feel well-enough to open my eyes a little, a cup of tea makes me feel better, as does a shower.

As I come out of an attack, I feel a sense of euphoria, knowing that I can resume the day again. Odd.

I don't know for sure exactly what triggers them, but have kind of latched on to a chemical imbalance as the probable cause. So, philosphically, I tend to believe that they'll strike whenever the time is right for them. I can't really justify or quantify it any other way.

I really MUST get this O2 thing sorted, but am naturally reticent and stubborn when it comes to helping myself for such things, but it really must be done.

There. Said it. Done. You're the first to see it and to witness it, other than my wife. It's hard to explain the seriousness to others.

Thanks!
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All in good time...

Ike · Posted: Fri Feb 22, 2008 6:38 pm Post subject:

Simon
there is so much i want to say here. and i will do when i have a little more time. i will pm you my phone number or let me know yours and i will give you a call.

you my friend are no longer alone, all of what you are saying makes sense but there are stages you can control,

Ill reply in full to this a little later, in the mean time check your PM's

Ike
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If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Sat Feb 23, 2008 6:19 am Post subject:

Simon , Certainly you have found the right place to be . It seems we all battled the beast alone for far too long . You have suffered in darkness too long . The beast loves for you to go one on one with him.. He always wins . With the sleep disturbances , fatigue and the dilirium of pain ; the beast will have his way with you and constantly morph into new patterns to avoid you ever getting a good handle on him . Depression is a secondary gift from the beast . You have been battling this a long time . We all arrived to a place like this , sick and tired of living on the merry-go-round of pain . This is a very special , compassionate place unlike any other . I know I cried the day I discovered I wasn't alone........... You need not fight the fight in a vacuum anymore . ...... Here we are one in sharing our experience , strength and hope ...... We have lots of experience in pain and alot of tips and personal experiences to share about the things that have and haven't worked for us ....... It's clear that with the same or similar diagnosis.......... our individual responses to treatment vary greatly . Unfortunately , one size doesn't fit all . You've come out of the darkness and into the light ...... Now stay in the light and accept the love and fellowship of the board members . You are a welcome addition here ..................

phil h :smt104 It helps to be able to lighten up and laugh with fellow dragonslayers............

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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

Sherri · Posted: Fri Feb 29, 2008 6:23 am Post subject:

Wow. I'm blown away. You're talking about me Simon. Your adjectives, the nuances...are all the same as mine.

You know what the shivering is?? Your body temp is coming back down. And it's a good sign. It MEANS IT'S ON IT'S WAY OUT. Your blood pressure is stabilizing..and you were hot during the hit, needed to cool down..and then it's too cold...

My teeth chatter, Im covered in sweat...I LOVE when that happens because I know it's almost over.

My neuro once asked me "How do you know when the attack is ending?" I responded, without hesitation, "The drop in my body temperature." Perspiration becomes a "cold" sweat.

During the attack, I have a tendency to take off whatever I have on...just throwing my clothes or pajamas off...aaah...then when the chills come. And my teeth are chattering...even though Im still in pain, I know Im headed out...and that helps to calm me down.

Then I grab a blanket and wrap it around me. I also do the thing with the pillows...and yes, it's sooooo difficult to get your head in the "right" spot...I put steady pressure at the base of my skull with my thumb...sort of lifting my skull forward...I most sit Indian style on the floor with my head pressed against the arm of a chair with a pillow or two on it...

I rock, sometimes I have to get up and pace...but I rock more, and get in a fast momentum rolling my forehead back and forth...I look like a lunatic.

I too got hit with a co worker in the car while I was driving...it was horrible. She was a nurse I worked with and we were coming back from a patient's home. She had NO IDEA what was wrong, what to do. I wanted to hit the "eject" button...and have her not there.

Your story really blew me away...so similiar. Thanks Simon....I appreciate you sharing that with me. We're here with you and for you.

Sherri
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"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Annette · Posted: Fri Feb 29, 2008 6:29 am Post subject:

WOW ! That was such a good account of CH. No doubt about it.

Come to think of it, I had observed the cold chill in my husband but didnt think of it as the beast leaving. I always thought it was me over-chilling him with ice and water . Thanks to you all, now I know better.

See? We always learn something new when we share.

Simon, welcome home, you will never be alone again

Please ask you wife to join the board too. There is the supporters section just for supporters to share our experiences and to get support too.

Sherri · Posted: Fri Feb 29, 2008 6:44 am Post subject:

Yes Annette...it's something I seem to leave out alot...is the chills.

You feel really hot during a hit...perspiring from the pain...and you're whole body is just hot...

Then there is a marked decrease...you usually don't realize it yourself immediately, you're too busy panicking and freaking out...or after you lose consciensceness and come to your FREEZING. That is another huge facet of CH.

Im glad Simon brought that up...and you're right, we're all blessed to learn from one another.

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"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.