chronicclusterheadaches.co.uk

Shedz · Posted: Sun Oct 04, 2009 1:01 pm Post subject: He don't play fair..

My cycle always starts around Oct-Nov...... Beast came out to play on July 13 (I keep a CH diary) August was HELL, then he disappeared on Sept 4. Waited a week, nothing... few more days, had a few beers.. Nothing. YEEHAH, PF again! Sept 25, guess who's back... and angry. So was August a freak occurance, or is this the beginning of something else? Were any of you episodic before you were chronic? Any advice or thoughts would be appreciated. Paul

_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

Ike · Posted: Tue Oct 06, 2009 8:37 pm Post subject:

I was episodic but only for once cycle, Came in nov gone in jan ok all year till the next Aug and i never stopped ... 6years now and still getting kicked, Some breaks here and there. So to be honest im not the best man to ask really...

For your sake i really hope it was a fluke ! Ill keep my fingers crossed for you... Oh i do know one lady on ouch that has cycles dec-feb then may-july so Maybe you might be getting more cycles in a the year..

Keeping notes is a great idea as you can work out whats going on from it when you look back.

Fingers crossed and keep us up todate ok !

Oh while im thinking of it i had 28days hit free (still shadows though) but no hits for 29 days and i drank a few beers to with no effect ! but id not go for one now not in full flow !
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Wed Oct 07, 2009 6:53 pm Post subject:

THE BEAST IS A CHEAT ! PATTERNS CHANGE , RULES CHANGE , YOU ADJUST , then the bastard comes at you sideways................ Always enjoy painfree days ................ but , never stop stockpiling weapons and ammunition needed for battle ! MEGA1.gif
_________________
"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

Shedz · Posted: Thu Oct 08, 2009 12:30 pm Post subject:

Cheers guys, Jill put a post up saying that storms had affected her, so i'm hopin that the high pressure at the end of summer was to blame!! Don't really want to entertain the idea that my cycle could be changing, I know ,I'm a stubborn bastard.... My new best friend is the 02 delivery man (again!). Trying not to rely too much on Imigran, I like to keep that back for the K10 hits.

_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

Ike · Posted: Thu Oct 08, 2009 5:20 pm Post subject:

ill keep thinking the same thing for you !!
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

Shedz · Posted: Sun Oct 11, 2009 3:07 pm Post subject:

Fingers crossed eh......
_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

phil h · Posted: Sun Oct 11, 2009 3:13 pm Post subject:

I'm praying for you and cursing the beast .
_________________
"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

aileen statton · Posted: Sun Oct 18, 2009 5:33 pm Post subject: Just to say hello

Hi all
I am new here a friend gave me this site to help. I was reading and found alot of you have named CH so I am going to give it a name too. Now I have a choice first ex hubby robert or second ex hubby derek? both painful.
But on a serious note I am get my cycle from jan-feb which I can cope with then I get my big bugger from May-second week in august I am now getting them now.I am on verapamil and migrain injections which are not working on this cycle feels like Head lice it amunes to treatment. I cant even sleep at night so not only CH Im sleep deprived

somedays I will sit and rock nothing helps. A very good friend and fellow sufferer has gave me great advice so I am going to follow it up.
I hope you all hang in there and love to you all.

Ike · Posted: Sun Oct 18, 2009 6:20 pm Post subject:

Hi,
Im glad your here, But sorry you have to be. There is something really going on right now so so many of us are really getting hit hard and for the episodics it's way out of pattern, Mayb the weather has something to do with it ?

Verapimil is a great 1st choice but either works well or not at all. Try asking for topamax next that might be of more use. Also stock your self up on frovatriptan (sometimes known as migrid) they tell you to take it when a hit starts but we have found that does nothing and works well if you take it before a hit it almost always gives me a good night.

o2 o2 o2 o2 LOL ill always shout about that one as no side effects at all and works 98% of the time for me, Stopping a hit in 10mins or so. without it i'll go 2hrs or so.

Melatonin seems to work well for lots (mainly people in europe and uk) its hard to get here but gp should not have tooo much trouble getting it but might take a few more days than normal meds. taking about 15mg at night really helpped me and Em another sufferer here says its brilliant for her.

Id go with Derek lol sounds meaner !!

there is always someone here so if you need us in the night someone will be online, But if you want to 'talk' with someone i can pm you my number and you can call me anytime 24hrs a day.

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

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Sun Oct 18, 2009 8:14 pm Post subject:

Hello Aileen ! I'm a chronic ch here . Alot of the episodics are getting hit earlier in the year this year . I don't know why . Besides the good advice that Ike gave to you to bring to your GP ; you might also ask about a prednisone taper if the other meds aren't doing the trick . Anyway , it's a pleasure to meet you and welcome aboard .

This is a warm, friendly and supportive family here .

Don't isolate in your pain . There are no dumb questions you can ask . We've all asked them all 10 times . It's key to not feel alone with what you're experiencing . You are now part of the family . We are here for you . With exception of when we are all getting hit hard , then we are not all on the board alot . This is one of those times . We all try and check in daily . So if you post , eyes will be on it and respond eventually .

Phil h :smt108 remember that O2,O2,O2 and coffee are staples for clusterheads

_________________
"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

Shedz · Posted: Wed Oct 21, 2009 2:27 pm Post subject:

Hi Aileen, welcome to the madhouse

_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

aileen statton · Posted: Thu Oct 22, 2009 4:38 pm Post subject:

Hi All and thank you so much for the warm welcome and good advice. Well I went to a doctor (if you could call her a doctor) she told me my headsches are caused by stiff mucles and to stop all tablets have a bath and a massarge and go out side for some fresh air. I dont even think she knew what DEREK <<<(new name for it) is she was making out i was getting tension headaches or migrain

. I get migrains and only wish I could get them and not CL. Needless to say My mum is going to get me an apointment with the doctor who diagnosed me.
I feel so much better im not alone and There is a few of us out there. Love to you all xxx

Ike · Posted: Thu Oct 22, 2009 6:41 pm Post subject:

What the hell ? Id have kicked her butt lol, Get back and see another gp or better still demand you want to be seen by a neuro !!

dont take that crap ... Paul lives only 25mins away from you, Maybe he could drop you some o2 and if it helps at all go and demand it from them.

That really does suck, Have a look at the ''helpful links'' and ch articals that should give you lots to print off and take with you next time..
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

aileen statton · Posted: Thu Oct 22, 2009 8:17 pm Post subject:

Thanx Ike
Im gonna go tommorow and god help her. A formal complaint is going to go in. not only did she say that about my CL but I also have a broken foot and take co-codamal 30/500 and said that is why im getting the headaches as well as the mucles in my back I was about to say that i bet she thinks the running nose is because i have a cold and the eye lid is because i need glasses. but the doctors surgery i go to is wonderful really down to earthfor eg Dr burgess has one hell of a sence of humor when my sister was having heart burn when pregnant he told her to roll off sooner he always cheers us up. it is just this one woman who has just only started as a traniee.
I have never felt so insulted in all my life as if i am not important. To be quite honist i dont think she knew what CL is so I have printed off some infomation for the doctor but she does know what a broken foot is and felt she showed no compassion towards me. I was having and attack when I went to see her so if i didnt walk out of the room I would of hit her. But the best thing was while I was talking to her another paitent walked in. She hit the next paitent button by acident. So lets just say stern words are going to be said to her
_________________
If you feel alone ill be your friend
If you are scared ill chase the monsters away
When you need a friend ill be with you in spirit
WHEN YOUR IN PAIN ILL BE IN PAIN WITH YOU

phil h · Posted: Fri Oct 23, 2009 4:54 am Post subject:

Bring downloaded printed material to your doctor . We advocate for ourselves and either a doc becomes teachable or we move on . This is not a disease many mds know anything about , nor do most of them want to learn about . We have all been through many docs . It's an ongoing relationship of educating them and getting them to help us .........Bring printed data to them. Good hunting...

phil h :smt108
_________________
"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