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Joeytastic

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Peterborough, England
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ABSOLUTELY DESPERATE :(
Jul 30^th, 2009 at 8:12am

Since leaving hosiptal a few days ago I haven't had a KIP 9/10 but what I have had is this dreadful constant background headache in the my right temple. It's phantomy and shadowy and sometimes it does flicker to something to something more painful.

It's really exhasting because it will not relent. It's making me really miserable. If I get on the O2 it does make it disapear but within 10 mins of remving the mask it is back, Sumatriptain gives me about an hours break...but then it's back....

I can go to sleep on it after some O2 treatement (mainly because I am exhasted) but the flickers wake me up.

I'm getting desperate. Should I ring my GP?

Jo x

P.S
Started Amitriptyline and Topmax as a prevenetative three days ago. Feel like the walking dead.

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*DISCLAIMER: Please use short words and dumb it down. Topimax'd out of my mind Cheesy

Until Poisoned With Triptans
Black Wolves Gnawed My Brain.
Yet They Wait, Eager.

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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: ABSOLUTELY DESPERATE :( Reply #1 - Jul 30^th, 2009 at 11:06am How long do you stay on O2 after it goes away? What flow rate are you using?? lpm?? Have you tried caffiene drinks with taurine (energy drinks)
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: ABSOLUTELY DESPERATE :( Reply #2 - Jul 30^th, 2009 at 11:17am The answers to FramCire's questions are important. Please take the time to go where he leads. Yes, I would call your doc, but how knowlegable is your GP in CH matters? Do you not have a neurologist/headache specialist you can call?
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Joeytastic

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Girly ClusterHead

Posts: 54
Peterborough, England
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Re: ABSOLUTELY DESPERATE :(
Reply #3 - Jul 30^th, 2009 at 12:07pm

15 lt a min (the max my bottles go) and I have been on them constantly... I had it on tap on hospital and since I have been home I have been through about 6 large bottles in 3 days (trying to cure the constant headache).

I rang OUCH in the end and they said go easy on the oxygen, only use it when the beast rears it's head and touch wood the constant headache has gone... I am on a KIP 2 now Cheesy

No... I have read about red bull type drinks... I always thoughts that caffine was a trigger...?

J Kiss

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*DISCLAIMER: Please use short words and dumb it down. Topimax'd out of my mind Cheesy

Until Poisoned With Triptans
Black Wolves Gnawed My Brain.
Yet They Wait, Eager.

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Joeytastic CH.com Junior Offline Girly ClusterHead Posts: 54 Peterborough, England Gender:	Re: ABSOLUTELY DESPERATE :( Reply #4 - Jul 30^th, 2009 at 12:08pm P.S I used to chomp on my mask for 60 PLUS mins.... sometimes fallings alseep with it on... Now I am stiucking to the 20 min rule.
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jarris

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Re: ABSOLUTELY DESPERATE :(
Reply #5 - Jul 30^th, 2009 at 12:24pm

Hey Joey,

I've had exactly the same symtpoms for the last three days! I'm afraid to say that I've only had a let up of an hour here and there but have managed thanks to your help earlier to obtain some by this evening. Thanks for that!

I just had an attack kip8 and only used ice for that one...i put loads of ice in some tissue and then into a sandwhich bag (only thing i had) and it really helped.

My pain/shadows is constantly located around the neck and shoulder- which is where my attacks seem to start. I also get shocks all up the nerve...
I was on the amiptriptilyne during my second cycle and had to stop taking it....it did reduce my night-time attacks but made me feel so emtionless and zombie like i stopped after 2 weeks.

I had this injection to the occipital nerve which my neurologist said has the potential to completely elimate and episode of cluster. I took a chance but it didn't work for me. However, it could work for you....The procedure wasn't so bad and was definitely worth going through to stop this pain....

wish you some pf time!! Wink

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FramCire

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Re: ABSOLUTELY DESPERATE :(
Reply #6 - Jul 30^th, 2009 at 12:55pm

OK folks, you got me a bit confused. Let me say a few things and see what sticks:

1. You shouldn't be on O2 that long. If it doesnt work in 15 mins, you probably need to consider a higher flow rate. (I suggest you stay on O2 for 5 mins once the attack is aborted)

2. If it returns quickly, maybe you need the higher flow rate too.

3. Have you tried a prednizone taper? I am thinking even a day or two with no headaches plus a more normalized O2 usage might help.

4. Caffiene is not a trigger for most. In fact, in combo with taurine is an abortive for a lot of people. I use the big starbucks drinks (in tall cans) with taurine effectively.

Let us know how it is going, by tonight I expect the real O2 experts will be chiming in with more help!

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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Joeytastic

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Posts: 54
Peterborough, England
Gender: female

Re: ABSOLUTELY DESPERATE :(
Reply #7 - Jul 30^th, 2009 at 12:58pm

I'm glad you've got some Oxygen on the way. Try not to hug the delivery man too tightly when he arrives Wink

Touch wood, I'm episodic, with years between cycles so those injections would be a last resort for me. I'm being refered to a neurologist next week so I'll see what he or she says.

I don't want to jinx anything but I'm feeling the best I have in days at the moment. My office just sent me a HUGE bouquite of flowers too with a get well soon card (I work with in all all male office too ha ha!)

J x Kiss

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*DISCLAIMER: Please use short words and dumb it down. Topimax'd out of my mind Cheesy

Until Poisoned With Triptans
Black Wolves Gnawed My Brain.
Yet They Wait, Eager.

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Joeytastic

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Peterborough, England
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Re: ABSOLUTELY DESPERATE :(
Reply #8 - Jul 30^th, 2009 at 1:03pm

FramCire wrote on Jul 30^th, 2009 at 12:55pm:

OK folks, you got me a bit confused. Let me say a few things and see what sticks:

1. You shouldn't be on O2 that long. If it doesnt work in 15 mins, you probably need to consider a higher flow rate. (I suggest you stay on O2 for 5 mins once the attack is aborted)

2. If it returns quickly, maybe you need the higher flow rate too.

3. Have you tried a prednizone taper? I am thinking even a day or two with no headaches plus a more normalized O2 usage might help.

4. Caffiene is not a trigger for most. In fact, in combo with taurine is an abortive for a lot of people. I use the big starbucks drinks (in tall cans) with taurine effectively.

Let us know how it is going, by tonight I expect the real O2 experts will be chiming in with more help!

1. I know this now. I consider my wrist slapped

2. 15l works well for me when I use it sensibly
3. The bottles I get have in built regulators on so there is no need for extra equipment I believe
4. I'll get some sugar free red bull then Cheesy

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*DISCLAIMER: Please use short words and dumb it down. Topimax'd out of my mind Cheesy

Until Poisoned With Triptans
Black Wolves Gnawed My Brain.
Yet They Wait, Eager.

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Brew

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Re: ABSOLUTELY DESPERATE :(
Reply #9 - Jul 30^th, 2009 at 1:15pm

Quote:

4. I'll get some sugar free red bull then

Careful with this one. I'm not sure what sugar-free Red Bull is sweetened with, but artificial sweeteners have shown to be a trigger for many. They are for me - especially aspertame.

If I was a dieter, I'd leave the dieting until after cycle. If you're diabetic, maybe some good, strong coffee and a taurine supplement.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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jarris CH.com Newbie Offline I Love CH.com! Posts: 15 London Gender:	Re: ABSOLUTELY DESPERATE :( Reply #10 - Jul 30^th, 2009 at 1:22pm Great news that you are feeling good!! I really hope it continues! Milk the sympathy at work as it doesn't some often...you deserve some
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FramCire

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Life like a froward child
must be humored a little

Posts: 1710
Bolivar, MO USA
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Re: ABSOLUTELY DESPERATE :(
Reply #11 - Jul 30^th, 2009 at 2:14pm

Joeytastic wrote on Jul 30^th, 2009 at 1:03pm:

FramCire wrote on Jul 30^th, 2009 at 12:55pm:

OK folks, you got me a bit confused. Let me say a few things and see what sticks:

1. You shouldn't be on O2 that long. If it doesnt work in 15 mins, you probably need to consider a higher flow rate. (I suggest you stay on O2 for 5 mins once the attack is aborted)

2. If it returns quickly, maybe you need the higher flow rate too.

3. Have you tried a prednizone taper? I am thinking even a day or two with no headaches plus a more normalized O2 usage might help.

4. Caffiene is not a trigger for most. In fact, in combo with taurine is an abortive for a lot of people. I use the big starbucks drinks (in tall cans) with taurine effectively.

Let us know how it is going, by tonight I expect the real O2 experts will be chiming in with more help!

1. I know this now. I consider my wrist slapped

2. 15l works well for me when I use it sensibly
3. The bottles I get have in built regulators on so there is no need for extra equipment I believe
4. I'll get some sugar free red bull then Cheesy

Prednizone is a steroid and has nothing to do with O2. A regimen where you taper off of it works for some time for some of us.

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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Joeytastic

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Girly ClusterHead

Posts: 54
Peterborough, England
Gender: female

Re: ABSOLUTELY DESPERATE :(
Reply #12 - Jul 30^th, 2009 at 3:03pm

FramCire wrote on Jul 30^th, 2009 at 2:14pm:

Joeytastic wrote on Jul 30^th, 2009 at 1:03pm:

FramCire wrote on Jul 30^th, 2009 at 12:55pm:

OK folks, you got me a bit confused. Let me say a few things and see what sticks:

1. You shouldn't be on O2 that long. If it doesnt work in 15 mins, you probably need to consider a higher flow rate. (I suggest you stay on O2 for 5 mins once the attack is aborted)

2. If it returns quickly, maybe you need the higher flow rate too.

3. Have you tried a prednizone taper? I am thinking even a day or two with no headaches plus a more normalized O2 usage might help.

4. Caffiene is not a trigger for most. In fact, in combo with taurine is an abortive for a lot of people. I use the big starbucks drinks (in tall cans) with taurine effectively.

Let us know how it is going, by tonight I expect the real O2 experts will be chiming in with more help!

1. I know this now. I consider my wrist slapped

2. 15l works well for me when I use it sensibly
3. The bottles I get have in built regulators on so there is no need for extra equipment I believe
4. I'll get some sugar free red bull then Cheesy

Prednizone is a steroid and has nothing to do with O2. A regimen where you taper off of it works for some time for some of us.

Ah I tried that steriod. When I weaned off it the beast grew claws. Sorry for the misunderstanding.

And as soon as I wrote I was feeling great, the devil woke up. B**tard!!!

J x

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*DISCLAIMER: Please use short words and dumb it down. Topimax'd out of my mind Cheesy

Until Poisoned With Triptans
Black Wolves Gnawed My Brain.
Yet They Wait, Eager.

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Aussie6330

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Re: ABSOLUTELY DESPERATE :(
Reply #13 - Aug 16^th, 2009 at 10:30pm

Hi again....I understand the "background" headaches you speak of and all I can offer is what I do. 2 x Phenergan (antihistamine) 1 hour before my expected attack. I am also on the Predisone treatment to be followed with Verapamil as a calcium blocker. If it all gets too much.....O2 @ 15lpm for at least 5 - 10 min after the beast is beaten. Hope you find some help in the above. Cool

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