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lcerbone

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er twice today
Dec 6^th, 2009 at 10:38pm

So I got one early morning at 3:30am took shot imitrex, Woke up at 7am with a level 10 went to ER as I had no more meds left,, sucked o2 until it went away. I was discharged, oh and real quick ALL hospital staff have no idea about clusters, I asked to be given oxygen asap and she said your in pain because your getting too much oxygen?? anyway after discharged went home. 5 minutes went by hit again HARD level 10, went back to ER they gave me shot and out I went until 3am. WOke up dischaged felt some shadows that seemed like they may blow up into something bad so I took a treximet pill and a steroid pill that they gave me (predisone 50mg). Been good so far. HAs anyone had this intensity all day like this?? I NEED TO BREAK THIS CYCLE!!! o2 coming tomorow I cant wait. I am dreading sleeping as I know it will come.

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Joni

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Re: er twice today
Reply #1 - Dec 6^th, 2009 at 11:33pm

Yes, unfortunately it happens. I didn't hear you mention a preventative medication like Verapamil, Lithium, etc. I will let someone else post to you about O2 as I do not use it as of yet, but in case no one sees this for awhile, I think I can tell you that maybe you didn't use the O2 correctly or long enough. For my abortive the last cycle, I used Zyprexa.

Have you been diagnosed with Clusters? Have a headache specialist? Howlong have you been in this cycle? Do you have Red Bull (or similar) on hand to chug? Some people here also use Melatonin at night and they say it helps.

Read all you can here and share your circumstances and more people will be along to give you tips.

Good Luck!!
Joni

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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McGee

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Re: er twice today
Reply #2 - Dec 7^th, 2009 at 4:02am

Hi lcerbone,
ive been on O2 since June and when i use it correctly im PF in 5 min. sounds like you had a rebound wich happens if you dont stay on the O2 long enough after the pain has gone. You have to stay on the O2 for the same time that it takes to kill the pain eg 5 min to be pain free and 5 min to make sure total of 10 min. If it takes 10 min to be pain free then stay on for 20 this should stop the rebounds. Also the correct mask is important, no out side air, just pure O2 the ER probably gave you a normal mask wich lets the out side air in wich either will not work or takes longer.
Glad to hear your getting O2 and all the info for its use is on the left (oxygen info)

wishing you/us all lots of PF days

Mark (trainee astronaught and deep sea diver)

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lcerbone

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Re: er twice today
Reply #3 - Dec 7^th, 2009 at 7:29am

Yes have been diagnosed with clusters. I am however getting a mri and mra again this year as my neuro makes me get them every time the cycle begins, usually every 3 years. My quess is that they are so unsure about clusters that they have to cover themselves just to make sure? Anyhow this cycle started nov 12th. No preventitive medicine. I do not like taking all these meds and my neuro suggested o2. I am right now on prednisone and teximet when a headache comes instead of imitrex shot.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: er twice today Reply #4 - Dec 7^th, 2009 at 7:36am lcerbone wrote on Dec 7^th, 2009 at 7:29am: Yes have been diagnosed with clusters. I am however getting a mri and mra again this year as my neuro makes me get them every time the cycle begins, usually every 3 years. That sounds a bit excessive. I think you need to find somebody who knows what they're doing.
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Marc

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Re: er twice today
Reply #5 - Dec 7^th, 2009 at 7:56am

lcerbone wrote on Dec 7^th, 2009 at 7:29am:

................ this cycle started nov 12th. No preventitive medicine. I do not like taking all these meds ...........................

To answer your question: Yes. Most of us have had some very bad times when they came back-to-back-to-back.

Sounds like you will be getting to know the folks in ER on a first name basis with your current CH management scheme.

Prednisone works miracles for CH's, but you can only take it for a short time. Expect them to come roaring back. NOW is the time get on a preventative medication because they take time to work.

Are you using O2 at home? Have you carefully read the O2 info here on this site? With proper use, most of us can kill a CH in 3-7 minutes if you jump right on it at the first sign.

Marc

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« Last Edit: Dec 7^th, 2009 at 7:57am by Marc »

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Bob Johnson

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Re: er twice today
Reply #6 - Dec 7^th, 2009 at 8:48am

The overall tone of your messages conveys that you are not using meds on a systematic/regular basis. Without such an approach you won't get the long term relief you seek. The use of one/two doses only when you have a "10" leaves you naked.

It does raise the question, which others have mentioned, that your doc may not be on top of treating clusters.

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Karla

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Re: er twice today
Reply #7 - Dec 7^th, 2009 at 11:44am

Before I found something to help my ch. I got 8 ch a day, everyday of the year. I was chronic. They each lasted roughly 1 1/2 hrs long. Each was a 10. That was 12 hrs a day in high inteses pain. Not to forget all the low level pain (shadows) inbetween hits. It can make one a bit crazy. So yes, it is possible to get hit that frequently. The predisone the dr. gave you should break up your cycle and give you a good remission period. Try the melatonin at bedtime to sleep most the night through and energy drinks during the day to lesson the intensity of the pain. good luck.

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Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi

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lcerbone

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Re: er twice today
Reply #8 - Dec 7^th, 2009 at 4:52pm

yes well you all are right. I recently changed nueros and my new doctor wants a mri and mra so she can see on her own whats what. Afterwards we will be talking about preventive meds. Is melatonin over the counter? meanin can i buy it tonite? My new doc was the one who set up the o2 so thats a good start. lets see, coming in tonite. ILl keep posting. All was good today no clusters must be the roids.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: er twice today Reply #9 - Dec 7^th, 2009 at 4:55pm If you're in the United States, yes, you can buy melatonin over the counter. Not so in Great Britain. There you need a prescription.
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