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patsfan3767
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I am new will take any advise
« on: Apr 16th, 2008, 5:06pm » |
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Hi all,
Just been told I have clusters. It took 4 months of hell. i am on Prednisone and o2. also take some good Meds for the bad one. They usually last 3 to 4 hours. Just wondering what you all do to stop yours. I could use all the help I can get
Thanx,
Tim
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Sandy_C
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Re: I am new will take any advise
« Reply #1 on: Apr 16th, 2008, 5:35pm » |
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Hi Tim, and welcome.
I'm sorry that you have been diagnosed with clusters, but you have come to the right place to find information.
I can't speak to the meds you have been prescribed, but others will be along shortly who have much more knowledge about them than I do.
In the meantime, check all of the buttons on the left of your screen. You mention that you have 02, make sure that you have a set up that allows you to go to at least 15 lpm, and a NON-rebreather mask.
I don't know what you mean by taking Pred and 02 and "other good meds" Please be more specific, and someone here will have tried it, used it, and can give you more info.
We're all in the same boat and we all row that boat. Pick up an oar and start rowing.
I was told, the first time I ever posted on this site, that there is no such thing as a stupid question, other than the one you didn't ask. Ask anything and everything. We'll try to help you.
Sandy
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Guiseppi
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Re: I am new will take any advise
« Reply #2 on: Apr 16th, 2008, 6:29pm » |
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Welcome to the board! Glad you found us. Most find the best results from taking a 2 pronged attack to the beast. You can't "cure" it, but with a little effort, you can control it.
1: A good preventative medication. Something you take while you are on cycle, (That is getting headaches)..with the goal of reducing the number of hits and their severity. I use lithium at 1200 mg a day, other popular prevents are verapamil and topomax. Many more for you to read about here and take back to discuss with your doctor.
2: A good abortive regimen. A headache starts, now what. Your first line abortive should be oxygen. Breathing pure 02 will have me completely pain free in as little as 10 minutes with no drug side effects. Read the link on the left. Used correctly it's a miracle fix for many, used incorrectly it's worthless.
Other great abortives are imitrex injectable or nasal spray. Caffeine, either by itself or combined with taurine in energy drinks works as an abortive for many.
The prednisone is generally used as a short term transitional medication to provide relief while you wait for your preventative medication to kick in. You shouldn't stay on prednisone for long periods as it's pretty hard on your body.
A lot for you to digest but understand this. It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain. Most docs just don't see this condition in their medical career and so don't know much about it.
We are here to help!!!
Guiseppi
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Jonny
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Re: I am new will take any advise
« Reply #3 on: Apr 16th, 2008, 6:35pm » |
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on Apr 16th, 2008, 6:29pm, Guiseppi wrote:| It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain. Most docs just don't see this condition in their medical career and so don't know much about it. |
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Damn Joe, that paragraph should have a button of its own on the left!!!!!
DAMN well said, bro! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Karla
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Re: I am new will take any advise
« Reply #4 on: Apr 16th, 2008, 6:50pm » |
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like was mentioned earlier verapamil up to 960mg a day and /or lithium. You can't take predisone forever. As soon as you stop the ha will probably return. Ask your dr to start one of these meds as soon as possible to prevent your ch from comming back once the predisone is stopped. Good luck!
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Karla
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patsfan3767
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Re: I am new will take any advise
« Reply #5 on: Apr 16th, 2008, 6:59pm » |
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Thanks to all the good advice.For awhile I tought I was going insane.Was a Marine for 10 years and thought I was able to do with Pain, neverthouht there was pain like this
Tim
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CostaRicaKris
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Re: I am new will take any advise
« Reply #6 on: Apr 16th, 2008, 7:10pm » |
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on Apr 16th, 2008, 6:59pm, patsfan3767 wrote:Thanks to all the good advice.For awhile I tought I was going insane.Was a Marine for 10 years and thought I was able to do with Pain, neverthouht there was pain like this
Tim |
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Hi Tim,
Welcome. We understand. CH is very rare and often misdiagnosed for years. We have simialar stories. Mine in brief... first CHA seven years ago, went to dentist, ENT, urgent care six times given vicodin, morphine, methodone, antibiotics, had CAT scans MRIs, finally diagnosed with CH Sept 2007. I've meet plenty of people who say "I get bad headaches too" but I know only the people on this board understand.
Sorry you're in pain, glad you found us.
~Kris
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DennisM1045
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Re: I am new will take any advise
« Reply #7 on: Apr 16th, 2008, 7:39pm » |
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Hi Tim! Welcome to your new home on the Internet. Sorry to hear you have clusters but are in good company here.
I see the regulars have already given you a head start with some good advice. I just wanted to chime in with a welcome of my own for a fellow pats fan.
Clusters suck. There is no two ways about it. But you will learn to live between the hits like the rest of us. Your life will be what you decide it will be. CH isn't a death sentence. Just a challenge - if a very painful one.
Semper Fi
-Dennis-
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Jonny
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Re: I am new will take any advise
« Reply #8 on: Apr 16th, 2008, 7:46pm » |
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Hey Tim,
Your one lucky dude finding this site so soon, it took me 23 years and ive been here for more than eight years.
Helping clusterheads is what we do best!, especially those new to the pain. Ask all the questions you need to.
Pats fan?  ........Me too, im ten miles south of Boston.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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KatzPurr
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Re: I am new will take any advise
« Reply #9 on: Apr 18th, 2008, 1:45am » |
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Welcome Tim. Sorry to hear you are having to battle this beast, but you are definitely among those who can help provide great information and support. My hubby retired from the Marine Corps after 22 years of service and has seen me go through these cycles for 20 years. Like you, he is certainly no stranger to pain, but he will be the first to tell anyone that he's never experienced the intense agony that he has witnessed during one of my Kip 8 or higher ch. Hang in there and I wish for you PFDAN very soon! Semper fi
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syrs842
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Re: I am new will take any advise
« Reply #10 on: Apr 18th, 2008, 10:08am » |
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Hi all,
I am new to this site as well. I am pleasantly surprised to find this site and to find there are many many people going through the same thing as myself. I am sitting here typing on the verge of a big one later on, I know because I have that throbbing in the temple to say HELLO I AM WAITING FOR YOU! The worse part of it all is I have to go to work in about 25 minutes and who knows it may happen there and I have to grin and bare with it because I have to work.
I also will take any advise you all may have. I need to find out about over the counter remedies because I don't have insurance at this time.
Thanks,
Pat
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Pat
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AussieBrian
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Re: I am new will take any advise
« Reply #11 on: Apr 18th, 2008, 10:37am » |
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Hey, Syrs842!!! At the first hint of a hit, slam a Red Bull!
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Buzz
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Re: I am new will take any advise
« Reply #12 on: Apr 18th, 2008, 1:19pm » |
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on Apr 18th, 2008, 10:08am, syrs842 wrote:Hi all,
I am new to this site as well. I am pleasantly surprised to find this site and to find there are many many people going through the same thing as myself. I am sitting here typing on the verge of a big one later on, I know because I have that throbbing in the temple to say HELLO I AM WAITING FOR YOU! The worse part of it all is I have to go to work in about 25 minutes and who knows it may happen there and I have to grin and bare with it because I have to work.
I also will take any advise you all may have. I need to find out about over the counter remedies because I don't have insurance at this time.
Thanks,
Pat |
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This sometimes works for me as an OTC remedy/preventative:
I take 684Mg Nurofen (Ibuprofen) Migraine strength every 4 hours regardless of whether I have a headache. I believe that it has stopped cycles in the past if i get them early enough. I also up my Verapamil dosage at the same time although that on its own doesn't seem to do anything about stopping a cycle - I find it takes several days for my system to realise It has Verapamil inside it... and by then its often too late...
One other thing... I find Verap makes my memory a bit useless - and hell, I'm male so disadvantaged from the start!!! 
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Gator
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Re: I am new will take any advise
« Reply #13 on: Apr 18th, 2008, 6:43pm » |
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on Apr 18th, 2008, 1:19pm, Buzz wrote:
I take 684Mg Nurofen (Ibuprofen) Migraine strength every 4 hours regardless of whether I have a headache. |
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This is a good way to give yourself one hell of a medication overuse headache aka rebound headache. The only way to get rid of that is to suffer through it until its gone. I watched my wife go through this and it wasn't pretty.
Definitely not something I would recommend.
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BMoneeTheMoneeMan
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Re: I am new will take any advise
« Reply #14 on: Apr 19th, 2008, 1:29am » |
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on Apr 18th, 2008, 1:19pm, Buzz wrote:
This sometimes works for me as an OTC remedy/preventative:
I take 684Mg Nurofen (Ibuprofen) Migraine strength every 4 hours regardless of whether I have a headache. |
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Not just the MOH you have to worry about. You might want to look up the recommended max dose and look up what happens when you take too much ibuprofen.
Then chat with your doc.
Careful
B$
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bnewman
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Re: I am new will take any advise
« Reply #15 on: Apr 21st, 2008, 12:30am » |
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Hey I'm new to this group too. But, I'm not new to cluster headaches I have had them for seven years now. I finally found a doctor that helped me. She put me on Prednisone and Verapamil the doses are really weird but after about 3 days on both meds it breaks the cycle. I also have o2 by the bed. Here's my doseage on the predisone by the way it's 10mg.
2 tabs 4x's daily on days 1-5
2tabs 3x's daily on days 6-10
2 tabs 2x's daily on days 11-15
1 tab 2x's daily on days 16-20
1 tab daily at bedtime on days 21-25
1/2 tab at bedtime on days 26-30
the verapamil is 120 mg once daily
Also try going to bed with an ice pack on your neck it saves time when one hits you can just grab the o2 and start praying for the end 
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Brenda
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CostaRicaKris
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Re: I am new will take any advise
« Reply #16 on: Apr 22nd, 2008, 10:40pm » |
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on Apr 21st, 2008, 12:30am, bnewman wrote:Hey I'm new to this group too. But, I'm not new to cluster headaches I have had them for seven years now. I finally found a doctor that helped me. She put me on Prednisone and Verapamil the doses are really weird but after about 3 days on both meds it breaks the cycle. I also have o2 by the bed. Here's my doseage on the predisone by the way it's 10mg.
2 tabs 4x's daily on days 1-5
2tabs 3x's daily on days 6-10
2 tabs 2x's daily on days 11-15
1 tab 2x's daily on days 16-20
1 tab daily at bedtime on days 21-25
1/2 tab at bedtime on days 26-30
the verapamil is 120 mg once daily
Also try going to bed with an ice pack on your neck it saves time when one hits you can just grab the o2 and start praying for the end |
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bnewman,
That's called a Prednisone taper - very common, not wierd at all. We start high on the Prednisone and taper down to give us some relief while the preventative (Verapamil for you Topomax for me) has time to build up in out system. The first time I was on it I was increasing in my dose of Topomax while I was decreasing the Prednisone. I had to put it all on an Excel spreadsheet so I could keep it straight.
~Kris
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BarbaraD
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Re: I am new will take any advise
« Reply #17 on: Apr 24th, 2008, 8:53am » |
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What Gator said about OTC meds.... BE CAREFUL!!!! Occasionally I'll take three Excederin ES (if I'm out and that's all I can find - they're loaded with caffeine) BUT not on a regular basis -- they WILL cause REBOUND headaches...
Red Bull at the onset of a CH will sometimes abort and Melatonin (6-15mg) at bedtime will sometimes stop the nighttime hits (gets you thru the REM sleep - when the CH hits). My neuro recommends both of these to his patients.
What other "good meds" are you taking? Imitrex (or something in the trex family) or ergotomine are the "recommended" drugs for aborting CH (vaso-constrictors). Pain killers are "useless" for the most part.
O2 at 15 liters with a nonrebreather mask is the most recommended thing on this site. It has no side effects is is almost always effective on MOST of us. There's a link on the left that gives you all the specifics on it.
Preventatives are important for a lot of us. Verap, Lithium, Topamax are the the drugs most of us take as prevents. Prednisone tapers just keep you sane while the prevents get in your system. Pred is not good over a long period of time.
We're not doctors here, BUT most of us old-timers have been thru this for a lot of years and have tried almost everything there is, so we DO know what we're talking about. The main thing is GET A DOCTOR YOU CAN COMMUNICATE WITH and one who actually knows what CH is.
Hugs BD
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