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Topic: Just found out I have CH today.....very newbie. (Read 518 times) |
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scope757
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Just found out I have CH today.....very newbie.
« on: Nov 27th, 2006, 8:18pm » |
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After 6 weeks of severe pain - I've been to 2 doctors, a steady dose of antihistimines even though I had no congestion, 2 different regiments of antibiotics, a catscan, and today, finally found myself seated in a neurolagists' office. After about 2 minutes of me describing the pain on half of my face especially in my eye, usually occurring when I lay down to rest or soon after falling asleep, always in the evenings, the pain comes on very quickly - lasts from 10 minutes up to 2 hours, usually 30 minutes, then disappears just as quickly. My one eye starts tearing and my nose runs. Sometimes it's everyday, every other day or sometimes I go for 3 or 4 days without it occurring. The nuerologist sat back and told me I had CH. Never heard of it before, I researched it on the web and came across your site here. The symptoms I see described for CH are exactly what's occurring to me, I told this to 2 different doctors. The 3rd, the nuerologist, knew it immediatly when I described it.
Probably sounds typical to ya' all, but for me this is new.
Just wanted to say thanks for all the great information I learned here today and you have a new member.
Think I'll try the caffaine thing next time.........make it an expresso !
Steve
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Kevin_M
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Re: Just found out I have CH today.....very newbie
« Reply #1 on: Nov 27th, 2006, 8:29pm » |
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Welcome Scope,
Glad you pursued getting a diagnosis. We're in the same boat here and know the pain, grab an oar.  Learning to manage it is important to all here and there's plenty of accumulated input, check a lot of things out in the neighborhood and feel free to ask away anywhere.
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| « Last Edit: Nov 27th, 2006, 8:35pm by Kevin_M » |
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the_old_man
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Re: Just found out I have CH today.....very newbie
« Reply #2 on: Nov 27th, 2006, 8:36pm » |
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Hi Scope,
Sorry you have ch, but glad you're here. There is more knowledge here than you'll ever find in a dr's office. Here you'll find sympathy, understanding, support, encouragement, information, and a place to vent...but not a cure. Right now there is no cure. I've had ch for nearly 30 years...30 years a sufferer...30 years a survivor...because of this place. When I need to just clear my head, or need a good laugh...I come here. When I need to vent or need advice...I come here. This place has never let me down. The people here have all been there and done that. Their combined knowledge should be put into a book and made required reading for all the wannabe doctors out there. No textbook can begin to compare to the wealth of knowledge that is here. Come back often. Read a lot. Don't be afraid to ask questions. And don't take the good-natured ribbing personally. Everyone is here to help. Drink from this well of wisdom and enjoy your stay.
Wishing you pain-free days and nights.
The Old Man
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jon019
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Re: Just found out I have CH today.....very newbie
« Reply #3 on: Nov 27th, 2006, 9:13pm » |
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Hiya too Scope,
What the old man said, says it all. Scope it out!
Regards
Jon
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HeadhurtinMama
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Re: Just found out I have CH today.....very newbie
« Reply #4 on: Nov 27th, 2006, 9:14pm » |
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Steve, welcome to the fun house, sorry you're here, but we're glad you found us!
Bridget
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Here comes the rain again
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chewy
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Re: Just found out I have CH today.....very newbie
« Reply #5 on: Nov 27th, 2006, 9:49pm » |
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What meds did the nuero prescribe?
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Jimi
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Re: Just found out I have CH today.....very newbie
« Reply #6 on: Nov 27th, 2006, 10:38pm » |
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Yeah, let us know what your neuro prescribed for you. Some Doctors are better than others. Also welcome to your new home. 
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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scope757
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Re: Just found out I have CH today.....very newbie
« Reply #7 on: Nov 27th, 2006, 10:40pm » |
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Well I think it's ending....I think.....I was getting it almost daily.....now, I had a half hour bout on wednsday and a 10 minute one sunday night. I hope that's it. I've been taking 3 Motrins when I feel the first signs of it.....I think it's deadening the intensity a little. The neurologist gave me Axert to try. I haven't really heard much mention of this drug here. Anyone try this one? Also, does this gradually taper off when it's ending? I still feel it slightly right now, but no real pain, just enough to know it's still there.
Thanks for the help
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Jobette
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Re: Just found out I have CH today.....very newbie
« Reply #8 on: Nov 27th, 2006, 10:59pm » |
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What type of preventive med are you on? Axert is an abortive, I think, but as you will learn here and for yourself as time goes on, most things that are taken by mouth are of little to no use when fight clusters. Most of us take either zomig and imitrex nasal spray and imitrex injections. These act faster and there is the best of all OXYGEN. Is the Axert the only thing that he/she gave you? Oh yeah, Welcome to Clusterville, but I hate that you had to come to our town, but we are here for you!! 
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Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
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Sean_C
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Re: Just found out I have CH today.....very newbie
« Reply #9 on: Nov 27th, 2006, 11:14pm » |
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on Nov 27th, 2006, 10:40pm, scope757 wrote:| I've been taking 3 Motrins when I feel the first signs of it..... |
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Thataboy
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sandie99
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Re: Just found out I have CH today.....very newbie
« Reply #10 on: Nov 28th, 2006, 5:31am » |
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Welcome Steve!
I'm so sorry that you have ch, but this is the best place for us clusterheads. I hope that you'll be pain-free soon.
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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BarbaraD
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Re: Just found out I have CH today.....very newbie
« Reply #11 on: Nov 28th, 2006, 5:31am » |
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Welcome to Clusterville.
Be careful with OTC stuff -- they can cause rebounds (esp. Excedrin -- works good occasionally, but be careful).
Red Bull and coffee work good for me to abort at the first signs. O2 is a lifesaver for most of us.
One thing to keep in mind. NOTHING works for everyone and NOTHING works every time.
Most of us have been thru about everything and what works this time might not work next time and something that didn't work in the past might just work now. It's a crazy disease we have, but we've mostly learned to cope.
I'm glad you got diagnosed so quickly. That's a big plus. Some go for years without the right diagnosis.
Again welcome to Clusterville. Pull up a chair and read read read. There's more knowledge on this MB than most doctors will ever know.
Hugs BD
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dave.....
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Re: Just found out I have CH today.....very newbie
« Reply #12 on: Nov 28th, 2006, 9:19am » |
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scope757.......... we have been wating for you......... no realy sorry you had to find this place the way you did..... but welcome...... i find more support here than i could ever find at home
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Richr8
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Re: Just found out I have CH today.....very newbie
« Reply #13 on: Nov 28th, 2006, 9:50am » |
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Steve,
Welcome! You are on of the lucky ones finding us so early after a dignosis. Many of us suffered for years before finding this place. You will have an advantage in working toward finding a treatment that gives you some relief based on all of the knowledge and experience you will find here. I hope you are right about your cycle ending, but now is the time to take a proactive approach in educating working with your Neuro to find a treatment that minimizes your disomfort.
Read all of the info you can find on this site and take this info:
http://www.brightok.net/~mnjday/chtherapy.pdf
to your Doc to help in developing a strategy that works for you. I would like to second the advice against OTCs and and narcotics as they only complicate things further. I would also like to add another plug for Oxygen. Read all of the Oxygen info on the left panel and make sure that you are ready for your next epidode. Oxygen works wonders for many of us and has little or no side effects.
Best of luck my friend. If this is truly the end fo your cycle, hang around and support and share with others. We are all in the same boat, so grab an oar and start rowing.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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B14CK5H33P
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Re: Just found out I have CH today.....very newbie
« Reply #14 on: Nov 28th, 2006, 10:22am » |
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Axert is a triptan like Maxalt, Imitrex, Zomig, Relpax, Frova. I think all triptans can cause rebounds, and though Imitrex injections work quickest, the best abortive I have found is Frova - less hits and more space in between.
Nothing beats oxygen though for most. No rebounds.
Sorry you have CH, but glad you found this site.
Peace,
Carl D
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roy21302
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Re: Just found out I have CH today.....very newbie
« Reply #15 on: Nov 28th, 2006, 11:47am » |
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Steve,
Welcome to the sight, sorry you had to seek us out but your among friends now. Ask all you want to know, stick around and read all you can, the more you know ther better even if your cycle is coming to an end, it helps next time.
I would point you in the direction of the button on the left showing Oxygen info, have a read and try it, it really works
Good luck, stick around . Cheers Roy
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klafata
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Re: Just found out I have CH today.....very newbie
« Reply #16 on: Nov 28th, 2006, 8:06pm » |
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welcome steve
sorry you are here however.
I have been on cafergot, found it works well at least for me. I guess with all the hype on O2 I should try it? My doc has suggested it..
i feel for ya brother.
good luck
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scope757
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Re: Just found out I have CH today.....very newbie
« Reply #17 on: Nov 28th, 2006, 9:38pm » |
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i really want to thank everyone for the great info and support, it's nothing short of incredible. I owe you all greatly. I have poured over all of the information and printed much of it out to show the doctor. I'm currently on no medication, the Axert he gave me was just a couple of pills to try.......samples. He didn't prescribe anything. I'm guessing neither the neuro or my regular doctor is truely aware of how to treat this. I had another attack last night, so I guess it's not over yet. They do not seem as intense as a few weeks ago, is this a sign of it ending? Not sure. Going on about 2 months of this @%*&!!! without anything to help the pain.
Would really like to try the O2.......need to talk to the doctor.
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AussieBrian
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Re: Just found out I have CH today.....very newbie
« Reply #18 on: Nov 28th, 2006, 9:46pm » |
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on Nov 28th, 2006, 9:38pm, scope757 wrote:| I have poured over all of the information.... |
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Red Bull, I hope, or even just straight coffee, but just be aware that alcohol is a major trigger for many people.
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Melvyn
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Re: Just found out I have CH today.....very newbie
« Reply #19 on: Nov 29th, 2006, 9:13am » |
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Hi Scope,
sorry you needed us but lucky you to have found us so quickly.
It's true that you should try a number of things as different things work for diferent people.
I went through a list - whilst waiting months to see a neuro, and found that Melatonin worked for me. I got the idea from the bright net doc that you have been given.
Can't say if it will work for you but it does the trick for a number of us and is well worth a try.
Best of luck - keep trying - you will find something that makes it bearable.
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Melvyn
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Jobette
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Re: Just found out I have CH today.....very newbie
« Reply #20 on: Dec 1st, 2006, 9:41am » |
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If your dr writes no other prescription get one for oxygen, the less meds the better, but you need something to help fight the beast. The Melantonin helps with sleep wiwth less side affects. Good luck 
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Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
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