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tcrotty80

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new to cluster headaches
Feb 25^th, 2009 at 6:40pm

hello my name is tim. for the last 3 1/2 weeks i have been taking antibiotics and vicodin for a sinus infection come to find out after seen a differnt doctor that i am having cluster headaches. so i found this site and all i have read is correct in beliveing i do. i get a 6 or 7 on the kis scale at night 1 hr after i fall asleep and they have been getting worse as the nights go by now today i got my fist durring the day at 2 p.m. and it was the worst yet. my doctor wants me to take depakote er 500mg and tylenol. tylenol really? im not 12yrs old there is no way tylenol will help this. so got hime to give me imatrex as well. it seemed to cut the attack down to a 1/2 hr last night but then could not fall asleep for hrs and felt anxious all day. i am going the the minnesota headach center at the noran clinc tomorrow moring to se a specialist. is there anything i should ask about or medications to ask for. any and all help would be great since i am new to this very confused and very scared.

thanks
tim

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B.Baer

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Re: new to cluster headaches
Reply #1 - Feb 25^th, 2009 at 8:29pm

Tim,
Welcome to the site, take it a step at a time, yes it's scary at first, we've all been there. I'm sure many will come along shortly and add to this thread, but read up on the site as much as you can. There is a great deal of excellent info. here. Talk to you Neuro. about O2, alot of us use it to abort headaches, just read up and do it correctly.
You've come to the right place, we all share your pain, and I do mean that literally, I have found more helpful information and support on this site then anywhere else. Read and ask questions, you'll find we're a very helpful bunch. Knowledge is power. Good luck.

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DennisM1045

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Re: new to cluster headaches
Reply #2 - Feb 25^th, 2009 at 9:33pm

Hi Tim and welcome to the family. I'm glad you found us but sorry you had too.

Sounds like you are headed in the right direction. I hope you find a specialist that knows more than the Dr treating you right now.

Here are some articles on the proper treatment of clusters. Read through them so you have some idea of what to expect. If nothing else it'll give you and idea if the Dr knows what he's talking about.

Also, push for Oxygen (Link on the left hand side of this page). It works to abort an attack in as little as 10-20 minutes for about 70% of us. Nothing works for everyone but when O2 works, it'll be your favorite abortive.

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There are also herbal approaches that work for some. Search the threads here for kilowatt3.

Magic mushrooms and other similar "natural" remedies are also effective.

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Read everything!!! Your most important weapon in this is information and self education. You are your own best advocate.

Good luck and ask any questions you think of...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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kevmd CH.com Hall of Famer Offline Who needs a hypothalamus anyway? Posts: 524 x0\|philadelphia\|USA\|\|0\|0\|PA,Pennsylvania Gender:	Re: new to cluster headaches Reply #3 - Feb 25^th, 2009 at 10:09pm demand oxygen. Ask about verapamil, lithium. Oxygen is a life saver
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Guiseppi

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Re: new to cluster headaches
Reply #4 - Feb 25^th, 2009 at 10:14pm

Welcome to the board, glad you found us, sorry you had to. Dennis has given you some great reading. Yeah....tylenol...like peeing on a forest fire!! Grin

Sadly you suffer from a rare disorder. It will behoove you to educate yourself as much as you can, and partner with your doc to plan a treatment plan. There's no cure...yet.....but this condition can be managed to give you your life back again. A warning, just sitting down in front of a doctor and saying fix me, can be a recipe for months of pain. Knowledge is power!

The good news is, you're not alone anymore!

joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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sheep2blue CH.com Junior Offline Posts: 28 x0\|lavina\|USA\|\|0\|0\|MT,Montana Gender:	Re: new to cluster headaches Reply #5 - Feb 25^th, 2009 at 11:02pm Read the 02 info and print it to take to Dr. 02 is the number one for a lot of us! T
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snickers CH.com Junior Offline I Love CH.com! Posts: 29 California Gender:	Re: new to cluster headaches Reply #6 - Feb 26^th, 2009 at 8:38pm Hi Tim! Welcome. You'll find lots of info here and great advice. As others mentioned try 02. It works th ebest for me. Though I hear it doesn't work for everyone, it might just be what you're looking for. hang in there.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: new to cluster headaches Reply #7 - Feb 26^th, 2009 at 10:47pm Hi Tim, You have been given good advice. Please check in and let us know how your appointment with the HA specialist went. As the others have said, ask for 02...If he says no.... DEMAND it. It helps a great many people here. Good luck and pain free wishes! Jeannie
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Emjay

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Re: new to cluster headaches
Reply #8 - Feb 28^th, 2009 at 7:32am

Hi Tim,

Welcome and ouch!

My neuro started me on a course of prednisone while waiting for Verapamil to abort an acute episode. The Verap is prophylatic and is usually a first course before jumping to depakote. I use a variety of abortives for breakthroughs including O2 (it is great) which is cheap enough considering my insurance company won't pay for it; Imitrix injections, which work the best and my preference for those nighttime hits since it is FAST (insurance company pays for those and I can use as many as needed). I used to use Maxalt MLT when caught unaware, with a Rock Star or Red Bull chaser but that is less effective (dulls the pain, maybe from an 8 to a 4). I take 10mg of Melatonin at night and it seems to be helping along with the 480mg of the Verap.

There is great advice here and that is why I have worked so successfully with my neurologist! I am an informed consumer and fortunately, I have a doctor with some experience. This is a very rare disorder and you really have to be as informed as you can be.

Good luck!

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tcrotty80

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Re: new to cluster headaches
Reply #9 - Feb 28^th, 2009 at 11:10am

hello.

sorry i have not been able to post. my work pc wont let me and my home pc is being fixed. so here is what my neuro did for me i got o2 with non rebreather 15ml high flow at home 6 boxes of imatrex injections with 5 refills. i have dual coverage medical ins. medica and healthpartners yay. and they put me verepamil 1 a day for a week then twice a day not sure of the dose. so this is what i have found out so far. i love the o2 works awsome. imatrex works great. and redbull helps keep the pain down. and if this regime dont work my doc is gonna put me on a prednisone taper. so i would like to say thanks to all for your help and advice. with this. as soon as my pc is fixed i will be part of the family every day on here. it sucks why we are here but comforting to know that im not alone.

thanks
tim

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: new to cluster headaches Reply #10 - Feb 28^th, 2009 at 3:41pm That's great news Tim. Sounds like you got a Doc that knows the ropes. -Dennis-
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Linda_Howell

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Re: new to cluster headaches
Reply #11 - Mar 1^st, 2009 at 3:55pm

Three and a hlf weeks into this and you have found a Dr. who knows his stuff????????????? OMG, are you one lucky indiviudal. If you do some reading around here you will come to the realization that you are among the minority. A good one, but a minority.

Some of the horror stories will break your heart. Some have gone decades w/o a diagnosis with no treatment. Others have been told they needed to have all their teeth pulled. Others have had uneeded jaw or sinus surgery...I could go on but I am sure you get the picture.

GOOD for you. This kind of a story makes me really happy.

Linda

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Hurt people.....hurt people. Think about it.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: new to cluster headaches Reply #12 - Mar 1^st, 2009 at 7:04pm Tim that is awesome news!!! The 02 works so well it scares me at times! (But in a really good way!) Congrats guy. Joe
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tcrotty80

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Re: new to cluster headaches
Reply #13 - Mar 2^nd, 2009 at 8:16pm

well we all know why im here i guess i should tell all a little about myself. i am 28 years old married for the second time i have a 5 year old daughter and a 1year old son. i work for a steel supply co in st.paul mn currently tying to quit smoking. im really trying to figure this whole ch thing out. see for 4 weeks i was in alot of pain day and night one they finally told me i have ch and got the meds i need it seems to have almost gone away. i still get what i think are shadows (very light pain behind the eye) other than that i havnt had a attack since friday after noon. i am on the verapamil but have not doubled the dose yet. supposed to on thursday. i have o2 but only need it a few time and wow did that work well and the injectable and pill form imatrex. (help that my wife suffers from migraines but havnt needed them for a while. not that i want it to come back. by all means i hope it stays away. just wondering if this is normal?

thanks
tim

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