Hi guys, my first few posts have been somewhat wayward, i feel like i should introduce myself and my experiences so far in a little more detail. I understand that everyone is here to help, so the best course of action seems to be to lay all my cards on the table!
Alot of this is going to be all 'me, me, me' and for that i apoligise. I really hate talking about myself.
I'll start with explaining how my worst attack to date came about.
I'd been suffering headaches at work, just over a week. I made nothing of it, just carried on with my job. It wasnt the easiest thing to ignore, but it was just a bad headache.
They started getting worse day by day, and appearing at the same times. The first one at roughly 12.30 pm, the second at 16.30 - 1700. I could feel it coming, and as the days wore on, i knew what to expect.
My right eye, just behind my right eye is where the majority of this takes place. On the odd occasion, it starts behind my left, but as the 'attack' takes full force, it's always behind my right eye. The pain, it's like someone is jamming a thick, curved needle into my eye, then turning it upwards and up into my head. The eye closes, becomes heavy, weepy, my nose starts to drip, but only on the side where the pain is, it never runs from my left nostril when the pain is momentarily on the left side of my head.
Friday came and the pain got so severe i literally stumbled into my boss's office and asked to take the afternoon off.
Rebecca suggested i booked an appointment at the doctors. I agreed, and it slowly started to die down. It hit again when i was sat in the waiting room, i remember an older man sat near to me looking uncomfortable with the way i was behaving. My doctor, she was surprised to hear my symptoms. This, apparently, is quite rare. I was given imigran, two 20 mg nasal sprays. I didnt take any until the following day, she said after i took the first i may need another after a two hour period.
I woke up saturday, the sun was shining and i felt good. Bekki had work throughout the day, and her parents, my in - laws were looking after my boy. I was sat there waiting for 12 - 1 o'clock, imigran at the ready.
Mid - day came and minor pain, nothing to worry about, started dancing behind my right eye. I dont know if i mistimed it, because i let it get gradually worse. I took one 20mg imigran nasal spray through my left nostril, the right was a no go area, and waited.
Within 5 minutes, i was hit with what i can only describe as someone beating me around the head with a hammer. A really big man, hitting me with a really big hammer.
I was pacing at first, holding my head, already crying, but then it started 'spiking' every 5 to 10 seconds. The most excruciating pain i've ever felt, and i've broken my fair share of bones! I went from felling sorry for myself to a snarling, screaming, violent animal. I sat on my bed, i couldnt lie down, just rocking back and forth holding my head. I rember repeating 'c'mon, c'mon, c'mon,' then every few seconds i'd get an unreal surge of pain. GET OUT OF MY ******* HEAD! I must have broken everything within reach, but at the same time didnt have the energy to do it, if that makes sense. I wanted to pull my head open and remove whatever it was causing the pain, my hands and head are bruised from the constant lashing out. It felt better to have something else hurt.
Bekki came back from work, was horrified to see what had happened, and drove me straight to A&E. I cried and screamed all the way there. I cried and screamed when i got there. The walk from the car through the doors felt like too much to do. I'm normally such a self conscious person, but i just didnt care anymore. Everyone, and i mean everyone was looking at me literally attemp to climb the walls, talking, whispering, and i just wanted to die. I really wanted to die. I wasnt even thing about Bekki or Tyler, and for that i feel ashamed.
Oxygen, i dont know how high the flow was, didnt help to begin with. Eventually it slowed it down though. Afterwards, when the pain was minimal, they gave me a rediculously strong painkiller. Maybe for them that was job done, but it was around 19.30, 18.00 when it starts to disappear of its own accord. I dont have enough experience to be able to tell the difference.

I've rambled havn't i?

Hah i've got a funny feeling i'm going to be a thorn in all of your sides for a long, long time.

Apologies in advance, and thankyou if you managed to read all of that

IronCookaroo

*feeling, and *attempt. I hate typo's

I can't imagine what that's like. Do you take vitamin D3? People on here have had some promising results from D3 lately.

Also, people keep mentioning Kip and then a number. Is this like, a pain scale? Like on a scale from 1-10, how much does it hurt, sort of thing?

HI Jair,

Maybe you missed the front page and got straight onto the board but,
may I suggest you have a read of these?

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Respect

Gary

Ah, thanks Batty. The Force is strong with you. XD

IronCookaroo wrote on Feb 25^th, 2011 at 10:57pm:

I've rambled havn't i? Apologies in advance, and thankyou if you managed to read all of that

Iron, you just needed to say that to someone mate, you dont have to apologise here as we have all said the same thing when the bus dropped us off at the 'Partners in Pain' Central!

Is it a bit like being in a strange crowd until you find out they all support the same footy team as you do?

How long have you been suffering/diagnosed with CH? I have had it , off and on now, for 11yrs...
Now (Thankfully)the pain has slowly migrated to my temple over the years from behind my left eye..
I suppose everyone reacts to this differently but we have this in common...
First time it hit, I thought I had a brain tumour, and was going to drop there and then... during the first K10, I wanted to get a tea spoon and pop my eye out and get some paracetomol in the socket.....Then slowly realised drink was a trigger, a mouthful of wine would start an attack!
Went to the Dr, he said it might be a detached retina and referred me to an Opthalmic Surgeon, who cheerfully said"Oh Yes!, thats what we call 'Ice Pick in the eye syndrome', ran the dye, shone the light etc.He only found a few 'floaters'... It was only about 5-6 yrs ago, I went to see a new Dr at our group practice...He asked me 2 questions...Is the pain on both or one side? and do they wake you a couple of hours after you have gone to sleep? I said' one side only and yes, they do!'
"You have Cluster headaches"...
I was and still am, having treatment for high BP, he said he would get that sorted and then address the clusters..He left about a year ago, so my CH story goes on. I will be sorting out my own O2 setup as I don't think I have snowflake in hells chance of getting it from my current GP!
Gotta go home to bed now Iron (shifts!) but will catch up with you later!


Quote:

Hah i've got a funny feeling i'm going to be a thorn in all of your sides for a long, long time.

I think it will make a nice change from the one's in our heads mate! Ha Ha!

Respect

Gary

Batty wrote on Feb 26^th, 2011 at 12:33am:

IronCookaroo wrote on Feb 25th, 2011 at 10:57pm: Hah i've got a funny feeling i'm going to be a thorn in all of your sides for a long, long time. I think it will make a nice change from the one's in our heads mate! Ha Ha! Respect Gary IronCookaroo

Ooh GOOD one Batty!  :D

And I agree IronCookaroo that you should feel free to be a thorn in our sides all you like - yes it's these jumbo thorns right behid our frikkin' eyeballs that are the real buggers, but we're figuring out how to yank 'em outa there.  :D

Bejeeber,


Quote:

but we're figuring out how to yank 'em outa there

I think its going to be education in the end Bud!

The Future

Respect

Gary

Jair Crawford wrote on Feb 26^th, 2011 at 12:10am:

Ah, thanks Batty. The Force is strong with you. XD

Dont forget Padawan....... the Force is strong with O2!

Gary

Hi IronCookaroo

That was a pretty vivid description that sounds a lot like a pretty nasty CH. However I'm not a medical doctor and you really need to get an accurate diagnosis from a neurologist who specializes in headaches. There are several other things that give very similar symptoms to CHs that need different treatments.

You didn't ramble at all, I could have written almost the exact same description of what it was like before I got oxygen to abort my CHs, so much so that it wasn't easy for me to read. You have zero need to apologise.

As you're in the UK, have you looked at the Ouch UK website - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

They are clued up on how things work in your corner of the world.

Oxygen is an amazingly good way to abort CHs, especially when used at a high flow rate via a non-rebreather mask. Waiting long enough to get the A&E (ER for the US readers) will not make it as effective, which is why it took so long. I can abort in about 6 minutes when using 25lpm starting within a few minutes of a CH.

The ridiculously strong pain killer you were given is unlikely have touched the pain of the CH. It was probably an opiate, which are best avoided, especially once the pain has dropped off.

Keep reading and asking questions.

Hey Iron, not a ramble at all. Everyone reading your post is nodding their head and saying, yeah, been there and done that. Mike makes a good point about the oxygen. It's most effective when started at the onset of an attack. My attacks went from 90-120 minute bastards to a 6-8 minute abort time just by huffing pure oxygen. If I wait even a few minutes to start the oxygen, the abort times can be doubled. If I let the headache get really established, oxygen won't help and I have to resort to imitrex.

Hang in there, we've all been in your shoes. :(

Joe

had another one today, the mid-day one wasnt too bad but the 5pm one knocked me for six. I was scared of looking weak infront of bekki. I cant appear weak. I'm the provider. I stared into space gritting my teeth for what felt like an eternity. I thought it was hours but bekki say's  it was only around half an hour. I'm god knows how far in to my first cycle, is there any advice into what i need to ask for medication wise? The migraine meds seem to increase the pain tenfold, but when i take them again two hours later they relieve the crap for maybe 10, 15 mins. Then the Uber Bastard returns in quite a bad mood.

Many thanks

IronCookaroo

Based on what I've been reading, maybe try some vitamin D3. It seems to be giving good results when taken daily at about 10K - 15K IU.

IronCookaroo wrote on Feb 26^th, 2011 at 10:12pm:

I was scared of looking weak infront of bekki. I cant appear weak.

Being knocked for 6 by a CH isn't weak! You'd not be human if the pain of a CH didn't get to you.

Some people like to hide away from partners during a CH, others don't. Mine likes to see that I've got my oxygen, etc and then just stay nearby.


IronCookaroo wrote on Feb 26^th, 2011 at 10:12pm:

is there any advice into what i need to ask for medication wise?

First off, a prevent, something like verapamil, lithium or topomax. These will stop many of the CHs happening, however it takes time for them to become effective, so a prednisione taper dose, starting at 60mg and dropping down over 2 weeks will act as a short term preventive.

Then for when a CH arrives, you need something to abort it. Oxygen works wonders (see the oxygen link on the left) at a high flow rate (15lpm or higher). Imitrex injections also work quick.

Glad to see MikeNZ just gave you the best, most succint and info packed run down on the medical approach for CH. 8-)

The alternative approach, "ClusterBusting" is gaining a lot of traction lately due to it's effectiveness, If you haven't already looked into it, here's a video talk on the subject by one of our fellow CH'ers:
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I'll have a doctors appointment tomorrow, can anyone suggest the next type of medication i should ask for? I'd ask for oxygen, but i dont how i'd go about getting it. Maybe the injections. I really dont know.

Thankyou

IronCookaroo

Hi Iron'

Print this off here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and take it with you to your Doc..If he agrees and signs it no problem, will you ask him for me,will he accept another new patient,willing to travel?

Best of luck mate!

Respect

Gary

I'm really sorry, but i'm being told the page doesnt exist anymore, or the laptop im using can't display whatever the page may hold. I'm pretty sure if i crack this thing open i'll find a rare species of dinosaur. But still, thankyou. I just want to know what i'm talking about when i get there, or at least know what to ask for.

Thankyou

IronCookaroo

And thankyou Mike NZ, your post has been there for ages, i really should open my eyes abit more. I'll ask for help, I'll ask about what you've suggested. At the moment its all i can do.

Cheers man, i really do appreciate this

IronCookaroo

IronCookaroo wrote on Feb 27^th, 2011 at 8:01pm:

the page doesnt exist anymore, or the laptop im using can't display whatever the page may hold.

Anyone else having trouble with this?

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Here is the page with the link on it

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Gary

Your original link didn't work, but the last two are working fine for me.

Cheers for the feedback Mike!
Have found things that dont work on mine, work on other peeps and, vice versa!

Gary

I was scared of looking weak infront of bekki. I cant appear weak. I'm the provider. I stared into space gritting my teeth for what felt like an eternity. I thought it was hours but bekki say's  it was only around half an hour.

Iron
You sound as if you have a supportive partner,
has Bekki had a look at the info on the supporters page and also the info that is posted about the symptoms of CH? Unless you experience the pain it is impossible to imagine what we go through, it is also difficult to put the pain into words in an attempt to make others understand.
Please don't think of yourself as weak, you have a condition that is described as the most painful a human can experience!! 
:)

37-41withrestrictions wrote on Feb 28^th, 2011 at 10:15am:

Please don't think of yourself as weak, you have a condition that is described as the most painful a human can experience!!  :)

You are made of Steel mate, forged in the fires of Mordor....

Respect

Gary

My headaches typically start anywhere from November to early February. So far this year, they haven't started. I think I'm almost in the clear. In the 10 years I've been getting clusters, this would be the second time I've skipped a year.

I've been trying to identify health or eating habits that might have contributed to the dormancy. It usually seems to be a futile effort, but I can't help but try.

After reading this post, it dawned on me that I switched multivitamins early last year. I checked, and it contains Vitamin D3. Curious.

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Jair Crawford wrote on Feb 25^th, 2011 at 11:37pm:

Also, people keep mentioning Kip and then a number. Is this like, a pain scale? Like on a scale from 1-10, how much does it hurt, sort of thing?

Yes. On the left side of your screen there should be a list of radio buttons. The 5th one down says 'the kip scale'. Click it.

Hey guys, like was previously mentioned, i and we are not doctors, but i had been taking verapamil 180 and sandomigrane 0.5, this combo along with a cafergot taken when onset felt had helped me greatly, that and really cold water held in my mouth on the side of the headache, you would think "icecream headache", but it felt better, i would lay across chairs and lower my head to get the cold water to my upper teeth.
I never had any relief with oxygen or imitrex(nasal), good luck.