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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> looks like i have drawn a short straw!
        
(Message started by: Bahney on Jan 4^th, 2006, 6:05pm)

Title: looks like i have drawn a short straw!
Post by Bahney on Jan 4^th, 2006, 6:05pm

Hi, i am Dave from a place called Hull in England

over the past few weeks i have been getting migranes which seem to get worse, it was like a pulsateing throbing right behind my eye but nothing i did relieved the pain. i have never been one to go to doctors or hospital, infact in 5years i havent so much as had a common flu or a stomach ache to complain about so i NEVER EVER get sick.

it got really bad on monday night though i woke up at about 3am and i honestly thought someone had attacked me, hit me in the face or i had some physical damage....nothing else could explain the pain, i ran to the bathroom to look in the mirror and i saw nothing just a stream of tears out of my eye, no bruises no marks nothing in the brief few seconds a massive panic set in...what is causeing this??

i don't mind admiting it but i speant the next 30minutes paceing around the bathroom clutching my head and running my head under a freezing cold shower for as long as i could stay still i felt like i kinda needed to run or something anything, not sure what though instead i just paced in circles around the bathroom, and squeesed my head between my hands.

it felt like an eternity like the world was running in slow motion because i could have sworn i was in the bathroom for easily 2hours! before the pain went away, i cleaned myself up and went back to bed to discover it had been less then 30minutes!

fearing a brain tummor or something VERY serious i booked an emergency apointment with my doctor this morning (wednesday) he was very quick to diagnose me with a condition known as "cluster headaches" something i had never heard of, he asked me about 20 questions about how it felt and how i was feeling latley the usual stuff.

i suppose i am happy it isnt a brain tummor but at the same time having this condition scares me just as much, the thought of more of these attacks? and from reading this site it appears as if they are not something that will go away.

i am now hoping that i am one of the lucky ones that gets them maybe every few years rather then every other night, i suppose time will tell.

i don't think i have ever been this scared before in my life, my parents arnt realy sure whats wrong with me and to tell the truth i am unsure as well, i am just so scared to go to sleep.

from reading on this site (which by the way is fantastic) i suppose i need to get an oxygen tank for myself.

if there is anyone else in the UK i would love to hear about your experiences.

thanks for reading

Dave

Title: Re: looks like i have drawn a short straw!
Post by Barry_T_Coles on Jan 4^th, 2006, 6:46pm

Hi Dave.
Barry from down under, welcome but really hope you don’t have Clusters.

You say that your doctor has confirmed Clusters, that’s a good start as most General Practitioners don’t know what it is but I would suggest that you get a referral to a Neurologist for confirmation as there are other things that can mimic CH.

When you get the referral go armed with as much info as you can glean from this site and anything we can point you to as the Nuro may not have heard of CH anyway and He/She may need the info to be able to help you in prescribing meds or oxygen.

There is a heap of info to the left; read, read and read again to acquaint yourself with the condition.
Do the cluster quiz, as a start.

Hears a link to the Mayo clinic for a starter.

http://www.mayoclinic.com/health/cluster-headache/DS00487

Keep us informed as to how you are going.
Kind Regards
Barry

Title: Re: looks like i have drawn a short straw!
Post by E-Double on Jan 4^th, 2006, 8:49pm

Hiya,

There are tons here from the UK as well as @
http://www.clusterheadaches.org.uk/home/index2.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: looks like i have drawn a short straw!
Post by Jonny on Jan 4^th, 2006, 8:58pm

on 01/04/06 at 18:05:20, Bahney wrote:

i am now hoping that i am one of the lucky ones that gets them maybe every few years rather then every other night, i suppose time will tell.

Try every night!.....Never belittle the beast....he pays back.

Title: Re: looks like i have drawn a short straw!
Post by Jasmyn on Jan 5^th, 2006, 3:03am

Welcome here Bahney.

Barry and Eric gave very good advise. You will find support and understanding here. Fear is part of this condition just try for it not to take over, there is help out here.

Title: Re: looks like i have drawn a short straw!
Post by Ghost on Jan 5^th, 2006, 10:21am

Like Jonny said but every night x2 and every day 3-5 times. he was Chronic a long freakn time, as others here are. I just went Chronic recently and pray every day and night for some kind of break but so far nothing. I've been learning to cope some but still have moments of pure surrender, just hoping it ends no matter how. I just again have trouble contenplating the prospect of every day for the next 30 years. I have nothing but the most possible respect for anyone that can go through that. Listen to those that have gone and are going through that and understand they have survived and will help point you in the right direction. Good Luck and pray for relief from the beast and enjoy every minuite of it.

Mike

Title: Re: looks like i have drawn a short straw!
Post by Beastfodder on Jan 5^th, 2006, 4:27pm

Hi Bahney,

You'd be amazed how many of us there are.

Almost as amazed as I was reading your GP hit the nail on the head so easily, you're lucky if it that's the case.

Chances are it'll be episodic and it can be a real bugger. 'Can be' are the important words there - options to treat CH, research on their effectiveness and feedback are freely available. And this site is about as good it gets for all the above.

So read lots, (definitely recommend O2 delivered through a proper mask as your first choice abortive), and get a plan with your GP to tackle it.

All the very best

Andrew

Title: Re: looks like i have drawn a short straw!
Post by zanychef on Jan 6^th, 2006, 2:09am

hi bahney
loads of uk sufferer over here
just hope you are episodic and not chronic but only time will tell
o2 the best abortive for lack of side effects especially when used in conjunction with a clustermasx
Ian

Title: Re: looks like i have drawn a short straw!
Post by Will_Williams on Jan 6^th, 2006, 6:12pm

"Neesh Geet!" Not good signs at all... Hopefully it's something that you can get rid of. I was just recently diagnosed with CH as well. I'm going on the 25th to get a second opinion though. I'm not from England, but I've been there plenty of times and can't wait to go back! The GP should have really referred a good Neurologist to you though. You should definately see someone who specializes in head conditions. Try not to let it drive you mad though! You can always come here and have someone to talk to who can relate.

Title: Re: looks like i have drawn a short straw!
Post by imnotbub on Jan 11^th, 2006, 2:56am

i don't mind admiting it but i speant the next 30minutes paceing around the bathroom clutching my head and running my head under a freezing cold shower for as long as i could stay still i felt like i kinda needed to run or something anything, not sure what though instead i just paced in circles around the bathroom, and squeesed my head between my hands.

Welcome to the dance. I thought I was strange for walking around in circles during a hit, but I found many do it. I think it's your mind giving you something to keep you somewhat preoccupied to try to cope with something that is virtualy 'uncopeable'.

Title: Re: looks like i have drawn a short straw!
Post by Icey on Jan 11^th, 2006, 3:16pm

Short straw yeah ?, certainly does .. I'm a uk sufferer too .. 20 yrs . I've also danced that dance many many times . Cried , begged , stuffed my face in a cusion , paced the garden . made myself sick , done the cold flannel , could go on ::) I have tried lots of meds , some have worked at first but then they dont offer much . O2 , well yeah helped me sometimes but the pain was that bad I used to throw the mask , cause I couldnt sit still long enough . I didn't have the mask they now recommend . I'm about to try alternative meds ;) Just waitin to order them . When I was diagnosed I felt completly on my own ,in fact I was . For sites like this I say ..Thank you !!!

Debbie xx

Title: Re: looks like i have drawn a short straw!
Post by scottyf on Jan 11^th, 2006, 4:13pm

3 GPs over the course of 4 years failed to diagnose it here in London. Third one sent me to a neurologist when I told him that these were clearly coming back and being told I dont have MS or a tumour each time is not enough. Also, this summer, my mother got the shock of her life when she saw me in the bathroom, in a terrible state. Also, at 24, I am now a productive member of society (!) with a job so just putting up with it over the summer break is no longer an option.

The neurologist interrupted me after about 15 seconds with the diagnosis, and when I continued she just nodded her head. I got a quick "neurological MOT" to check all else was good, and will be getting an MRI scan just to rule other things out. I am being told it is to do with body clock and blood vessels not responding well to a change in the seasons.