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aileen statton · Posted: Fri Oct 23, 2009 4:23 pm Post subject:

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.
_________________
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 5:29 pm Post subject:

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
_________________
"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

Ike · Posted: Fri Oct 23, 2009 7:02 pm Post subject:

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

Email me, Admin@chronicclusterheadaches.co.uk

Shedz · Posted: Sat Oct 24, 2009 7:10 pm Post subject:

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

_________________
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

Sherri · Posted: Sat Oct 24, 2009 7:40 pm Post subject:

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.

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

phil h · Posted: Sun Oct 25, 2009 12:55 am Post subject:

_________________
"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

Sherri · Posted: Sun Oct 25, 2009 2:06 pm Post subject:

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.

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Ike · Posted: Sun Oct 25, 2009 2:13 pm Post subject:

Pretty much what Sher said

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

Email me, Admin@chronicclusterheadaches.co.uk

aileen statton · Posted: Wed Oct 28, 2009 7:06 pm Post subject:

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
_________________
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: Thu Oct 29, 2009 5:10 am Post subject:

Stay positive and I wish you pain free days and nights !

_________________
"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: Thu Oct 29, 2009 5:04 pm Post subject:

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

_________________
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