Shedz
|
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 
|
Ike
|
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 !
|
phil h
|
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
|
Shedz
|
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.
|
Ike
|
ill keep thinking the same thing for you !!
|
Shedz
|
Fingers crossed eh......
|
phil h
|
I'm praying for you and cursing the beast .
|
aileen statton
|
Just to say helloHi 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
|
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
|
phil h
|
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
|
Shedz
|
Hi Aileen, welcome to the madhouse
|
aileen statton
|
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
|
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..
|
aileen statton
|
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
|
phil h
|
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
|
aileen statton
|
Hi All
Good news I have seen a doctor who unfotunatly is a fellow suffer so very understanding. He has refered me to a neor and is sorting out some o2 hopefuly It will work. One thing he did say is that this may be turning to be chronic god i hope not hope it is just the weather  thank you all for your advice and I am going to go on to educate the ppl about this.
|
phil h
|
Sounds good Aileen . Hang on to the MD that is a fellow sufferer , it will make life easier . Carry material to each MD to educate them . I'm proud of you ! phil h :smt108
|
Ike
|
HELL YEAH thats what i wanted to read !!
O2 works for 95% of ch'ers and for me it's great and i takeit everywhere !!
Neuro should be able to help you with more meds as they have more leverage in the uk than gp's This is the start of good things but it really may take time ! A gp with ch is rare so hold on to him tight!!
IM really pleased tis is the start for you.... DONT WORRY about chronic till you need to the stress of it wont help. Think to your self this is a weird cycle but only a cycle and will END dont give up we are all behind you 1000%
Hugs Ike
|
Shedz
|
They're all right, worrying about becoming chronic is no good for ya, I do believe thats how this thread started!!!
Yuo're in good hands here, yes we;re all bonkers, but it helps 
|
Sherri
|
Paul, shut the hell up.
Aileen...I would've told that first "Dr." to stick it up her ass. Being that CH is so rare, many Dr's don't get it, and say many insensitive and inaccurate things. I had a neuro tell me "women don't get CH's"...
Im CHRONIC FOR GOD'S SAKE...AND TEXT BOOK. You're doing the right stuff. Hang on.
Weather is an enormous factor in this...when it's GOIN TO RAIN, Im the worst, when it starts to rain I get some relief. Unfortunately we can't control the weather.
CONTROL WHAT YOU CAN...and do not worry about becoming chronic, please. Do your best, and that is good enough.
|
phil h
|
 
|
Sherri
|
Aileen...
Good advice that Phil gave was be ready with your "pain arsenal". As you well know by now, its very difficult to function or remember where things are when you're in a painful cycle.
I have what I call "a pain bag"...it's just a thermal bag that I keep all that stuff...like things you heat up in the microwave, and you wrap them around your neck and head, I have things to rub on my face that numb it, inside of my mouth...and things you stick on that get hot. Also your pain meds...so you just grab your bag, and it's all right there. You're hysterical enought as it is, without not being able to find your things.
Im one of the rare ones that uses heat. Cold hurts me...Im repelled by anything cold touching my neck or face while hurting so badly. Also, I do put a cold pack in the thermal bag, when I go out, to keep engery drinks cold...for most of us, Red Bull is a life saver, and you have to slam it down the second you feel the first twinge.
OXYGEN....Yes. I haven't had it in a year...I can't afford it, lost my medical benefits, and can't afford it, but it does the trick. Hold the face mask on, and just keep breathing...just keep going, and youlll feel that horrendous edge come off first, and you'll calm down a little...then continue using it until pain is completely gone.
You have to use it the right way though...at a high liter flow, where you can hear the air....and just keep breathing. If cold packs help, put them on your neck and head too. When I had O2, as soon as I felt a CH coming, I'd immediately take meds, throw the heating things in the microwave for one minute...wrap them around my head, neck (an ace bandage helps keep them in place...although you look insane), then grab a Red Bull, slam it, go to your tank, crank it up and start breathing.
Keep thinking "My meds are going to kick in soon"...try to remain as calm as possible...sometimes it's not possible...I've given myself black eyes from hitting my head on things and catching my eye...I've even cut myself because I just couldnt stand the pain...that usually happens when Im getting hit repeatedly, and by the fifth time, Im exhausted, scared...
Being prepared is monumental. I look forward to having oxygen again...no one with CH should be without it...its' kind of barbaric in my opinion...
You are going to do fine. You are talking with alot of veterans here...we know all the tricks...and if you ever just want to talk, any of us are more than happy to talk to you....to encourage you to hang on...and get you through "the CH crazies"....There's nothing you could tell any of us that we wouldnt understand...we've done it all. We're here.
|
Ike
|
Pretty much what Sher said 
|
aileen statton
|
Thank you so much sheri
I do use heat and cold combo and found that it worked for the first head of the cycle but then (like nits) it amunes to it. You have gave me a good idea I will creat a Derek bag (Derek is the new name for my beast) I have to travel up and down the country alot so i can keep it with me in the frount seat or next to me at home then at least I dont have to panic where is my meds !! im one of the most dis-organised person on the earth icon_jokercolor.gif so to have the potions to be at hand is great.
Thank you once again and will let you all know when i get the apointment for the neros.
All my love and hugs
|
phil h
|
Stay positive and I wish you pain free days and nights !
|
aileen statton
|
Good news all
I have been 3 days pain free so fingers crossed im not chronic. But my heart is with all of you with pain every day if i won the lotto I would put alot of money in to more study of this curse.
I am not religous but makes me wonder what i must of done so bad to have this and wonder if anyone thinks the same as me or is it because what ever is out there thinks im stronge and can cope with it. I know one thing all of you are the most wonderful ppl in this would especialy all of you who suffer day to day. I am so proud to call you all friends and if i did win the lotto and get married to my lovleybfriend I would love more than anything if you was all there to share my day.
Loves you all
|
