Click this link to read a post I like on the clusterheadaches.com message board...

chopmyheadoff

CH.com Hall of Famer

im back and i want everyone in uk to read this !!
Sep 14^th, 2008 at 4:32pm

hey folks, not been on for abouta year now.
brief history of me..

I got this terrible condition at 21. im now 29
i suffered 5 YEARS of idiotic doctors telling me i had migrane and to stop eating cheese !!

one day in summer 2 years ago, i was in the middle of THE WORST hit ever. kip 20 tackle !!.

anyway, i thought "thats it" and i ran into A&E and basically said stop this pain or put me down. simple as that.

it was then i was referred to neurologist who by amazing luck is a specialist in clusterheadache. he gave me a pred taper and imigran injection along with the verapamil.

i cried there and then in his office just cos i was finally talking to someone who actually understood my pain.
and imigran was a gift from god, FINALLY i had a weapon against this pain that was basically going to drive me to suicide.

im chronic, and the verapamil seemed to work, id get the odd hit every week or so that was easily killed with a jab of imigran.

life was good, BUT early this year i noticed id not been hit for 4 months !! id never been longer that a week before even with verapamil.
so i stopped the verapamil. WHAT A MISTAKE

within a week iwas getting hit every 2 hours all day and night every day. now i dont agree with the current kip scale, i would call them 8 on my scale,and that seems about a 15 on the kip scale. iv only ever had 3 "10s" (on my scale).

anyway, the point is, even splitting the imigran , i was using far too many jabs in a day.

id herd of oxygen, and the neuro had told me to ask the doctor for it but the doc had told me that doctors surgeries dont prescribe oxygen.

i told the neuro(dr silver) and he told me to TELL the doc to fill in a HOOF form, and when i said it to the doc he did it straight away.

IT WORKS PEOPLE. IT REALLY REALLY DOES.

if your already diagnosed by a nuro then visit ur doc and DEMAND he fill in a HOOF form. i did it last wednesday. on friday i had a man on my doorstep with 4 huge cylinders of oxygen, and a 24 hour phone number to ring when i need more.

SERIOUSLY - i wish id done this years ago.
iv just RAN home from my friends house sporting a kip 8, ignored the imigran, got on the oxygen 15l/m breathing as fast as i could and the hit aborted in 6 minutes !!

if ur in the uk and ur using imigran, i swear to god, u need to try oxygen. itworks, its free, and u dont feel shitty afterwards !!

i wish id demanded it years ago.
if ur doctor wont fill in HOOF form insist he call Consultant Dr Silver, neurologist specialising in clusterheadache at Warrington General Hospital.

thanks for listening, hi to my old friends !!

Back to top

IP Logged

Charlotte CH.com Alumnus Offline Posts: 2385 Patterson,California Gender:	Re: im back and i want everyone in uk to read this !! Reply #1 - Sep 14^th, 2008 at 5:11pm Sorry about your troubles, glad you have O2, and it is great to see you again. Charlotte
Back to top	IP Logged

ClusterChuck

CH.com Alumnus

Offline

The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: im back and i want everyone in uk to read this !!
Reply #2 - Sep 14^th, 2008 at 6:32pm

I am SO glad that you have gotten the relief, that we keep preaching about, from oxygen! It has been a life saver for so many of us!

I am glad that you had the gumption to fight for it!

Congratulations!

chopmyheadoff wrote on Sep 14^th, 2008 at 4:32pm:

kip 20 tackle !!.

chopmyheadoff wrote on Sep 14^th, 2008 at 4:32pm:

now i dont agree with the current kip scale, i would call them 8 on my scale,and that seems about a 15 on the kip scale. iv only ever had 3 "10s" (on my scale).

Now, here I have to disagree with you. You never got a chance to meet Bob Kipple. Your loss! He was a wonderful human being! I was honored to meet him, in person, before he left this earth to go to a better place.

Bob put a LOT of thought into designing this scale. I don't think you will find much support in changing a scale that works so well for us. AND it has become a standard in the headache community.

There is no such thing as a KIP20 or KIP15 or any number higher than 10. A KIP10 is a VERY unique hit. If anything that you had before, you THOUGHT was a KIP10, and then you got something that was worse, even VERY much worse, then just adjust those that you had had before.

KIP10 is as high as the scale goes. There is no need to go any higher.

Chuck

Back to top

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

IP Logged

darknight CH.com Veteran Offline Ever danced with the devil by the pale moonlight? Posts: 188 x0\|Manchester\|Great_Britain\|\|0\|0\| Gender:	Re: im back and i want everyone in uk to read this !! Reply #3 - Sep 15^th, 2008 at 7:13am Glad to hear the Oxygen works for you. Ive been on Oxygen since Feb before that i was on maxalt which did not help. I use oxygen to abort as soon as i feel it coming as the sooner ur on the oxygen the better. I do have Imigran injectors as back up but have yet to use them!!!! PFD to all
Back to top	This is My Gift My Curse!! IP Logged

thebbz Ex Member	Re: im back and i want everyone in uk to read this !! Reply #4 - Sep 15^th, 2008 at 11:42am 02 works just as well in the US. Good your getting some relief. Excellent post. all the best thebb
Back to top	IP Logged

chopmyheadoff

CH.com Hall of Famer

Re: im back and i want everyone in uk to read this !!
Reply #5 - Sep 15^th, 2008 at 11:43am

i hear what ur saying re the kip scale but i still disagree.
i have had 3 or 4 kip 10s, and the definition does doit justice.suicide.

but i had a hit a couple of nights ago that i would call a 7 (compared to the 10s iv had) but the wording of a 7 on the kip scale doesnt do the pain justice..

i think there need to be a couple more "numbers" added in between 7 and ten, because the current scale doesnt go up steep enough.

if u get what i mean...
my pain was 7 outof 10, but the definition of a kip 7 on the scale doesnt do the pain justice. so what do i call it ? a 9.5??

pfd

Back to top

IP Logged

thebbz Ex Member	Re: im back and i want everyone in uk to read this !! Reply #6 - Sep 15^th, 2008 at 12:22pm Call it what you want, pain perception is very individual. Out of respect for Kip. I call it like the scale describes. I think it is a very good pain scale for clusterheads only. It doesn't apply anywhere else. all the best thebb
Back to top	IP Logged

Sandy_C

CH.com Sponsor

Offline

There is no such thing
as a stupid question.

Posts: 3371
Jamestown, NC
Gender: female

Re: im back and i want everyone in uk to read this !!
Reply #7 - Sep 15^th, 2008 at 1:10pm

Everybody's level of pain tolerance is different.

I think I have a very high tolerance for pain. Three abdominas surgeries, four knee surgeries, two natural childbirths not to mention the odd broken bone or two. I could withstand anything.

My first cycle, when I didn't know what I had and thought I was going to die, was a definite 10 on the Kip scale, because I'd never felt pain like that before in my life.

However, eight years later, I realize that the what I thought was "suicide" pain I endured, wasn't a 10 - maybe a 6 or 7, but not a 10, because I've since experienced worse, once where I actually held the gun - that was maybe a K9 - or maybe it was only a K7, but at that time, it was the worst I had ever experienced.

I've learned over my thankfully short number of years with CH, as compared to many others, that what I thought was the worst pain ever in my life, (K10), has been surpassed, several times - and I've survived. I believe that if I don't keep control over this affliction I have, that there is yet a full blown 10 in my future.

I don't think I've really had a K10 hit yet. God, I hope I never do, and God bless those of you who have.

Sandy

Back to top

Lean on me, when you're not strong, cause we all need somebody to lean on.

IP Logged

monty CH.com Hall of Famer Offline Posts: 1056 The Swamp, Florida	Re: im back and i want everyone in uk to read this !! Reply #8 - Sep 15^th, 2008 at 6:30pm Spinal tap got it right - the meter should go to 11. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	« Last Edit: Sep 15^th, 2008 at 6:31pm by monty » The outer boundary of what we currently believe is feasible is far short of what we actually must do. IP Logged

southwalessunshine

CH.com Veteran

Offline

Posts: 154
caerphilly uk
Gender: female

Re: im back and i want everyone in uk to read this !!
Reply #9 - Oct 9^th, 2008 at 6:54pm

I agree with clusterchuck about not changing the scale. I too had my own 1-10 scale and when I first started coming on this site the kip scale confused me as I felt I was using it wrong. Howevr, we need a stable guide we can all identify with.
I'm glad you got your o2 to work for you. I was finally diagnosed with CH last yr and have been suffering with CH since my early teens. So to get a diagnosis was overwhelming. I cried with relief when my doc took me seriously. I found this site and got some amazing advice and printed it all off, made an apt with the doc and dumped the pile on his desk. Fair play he got back to me a week or so later and said that I could guide him with whatever I had to suggest and he would look into things as well. I got my o2, which doesn't really work for me, but I got it. I tried verapamil which made me worse. I'm now on Epilim which was working but slowly they're creeping back in so the dosage has been upped. Sometimes imitrex doesn't work too good either and I feel like I'm slipping back to the dark days. But this site is a god send and although I haven't posted for a long while I've intermittently looked in to see what's happening.
I agree more of us should be made aware of the benefits of o2 but most of the timeeven the docs don't even know about it.

Back to top

keep your face to the sunshine and you will never see the shadow.&&Alone we can do so little, together we can do so much.&&Walking with a friend in the dark is better than walking alone in the light.&&Helen keller

IP Logged

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: im back and i want everyone in uk to read this !! Reply #10 - Oct 9^th, 2008 at 8:05pm Not sure what exactly you are talking about. This KIP 10 pretty much says it all. Quote: Pain level 10 Major pain, screaming, head banging, ER trip. Depressed. Suicidal. How could it get any worse than suicidal?
Back to top	Hurt people.....hurt people. Think about it. IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: im back and i want everyone in uk to read this !! Reply #11 - Oct 9^th, 2008 at 8:12pm Glad to hear the 02 works as well for you as it has for me. Kinda makes you wanna shout to the rooftops that you ain't scared of the big bad beast anymore! Hope a hundred or so read your post get right out and get their 02!!!!! Guiseppi
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Agostino Leyre

CH.com Sponsor

Offline

"Hit like a phillips head
into my brain."

Posts: 3803
Madison WI USA
Gender: male

Re: im back and i want everyone in uk to read this !!
Reply #12 - Oct 10^th, 2008 at 9:13am

Linda_Howell wrote on Oct 9^th, 2008 at 8:05pm:

Not sure what exactly you are talking about. This KIP 10 pretty much says it all. Quote:

Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

How could it get any worse than suicidal?

Suicide. So, what that tells me is..... If you have something over a Kip 10, then you will kill yourself, so no one who is living can tell us about anything higher than a Kip 10. Makes sense to me. Wink

Back to top

Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&&

IP Logged

kevmd CH.com Hall of Famer Offline Who needs a hypothalamus anyway? Posts: 524 x0\|philadelphia\|USA\|\|0\|0\|PA,Pennsylvania Gender:	Re: im back and i want everyone in uk to read this !! Reply #13 - Oct 10^th, 2008 at 10:59am my only kip 10....I was in a hotel room and could not take it any more. I walked to the window to see if it opened. Thank God it did not
Back to top	PHILADELPHIA PHILLIES 2008 WORLD CHAMPS IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!