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New to cluster headaches, new to here (Read 1517 times)

WillAnderson

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New to cluster headaches, new to here
Oct 19^th, 2008 at 3:41am

Hello there,

I'm Will, I'm 33 and new to all this.

Part of me wishes I didn't find this place and part of me is relieved I have. It's only starting to dawn on me what this disorder(?) could turn into. I had my first ever bout of cluster headaches 3 years ago and it lasted for about 6 weeks. I'd hoped that maybe it was a freak one off, that maybe my doctor had miss-diagnosed me, but it's come back and last night was just horrible.
I don't think it's got to a 10 yet on the scale, but is around 8 to 9 at its worst. Do people find it gradually gets more severe with time, or is it pretty much the same? Or does it vary from person to person?
Anyway that's me.
Here's hoping tonight won't be as bad...

Will

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BMoneeTheMoneeMan

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Re: New to cluster headaches, new to here
Reply #1 - Oct 19^th, 2008 at 3:49am

Hi Will!!
Sorry you had to come looking for us, but i am glad you found us. Maybe you can tell us what you and your doc have discussed in terms of relief. There are literally dozens of different meds or cocktails that can be used, all of which have side effects or unintended consequences. It would be a good idea to poke around the site here and read up. I dont think CH lessens with age, but i do think it varies in severity for each person. Hell, even one cycle to the next can seem like a totally different animal.
Personally, I use Oxygen as my primary abortive. The only negative is that it makes my mouth dry, but it works rather well. 20 to 30 litres per minute on a non-rebreather.
I also take melatonin and benadryl before bed and i think it helps reduce the nighttime hits.

Hope you get a good nite sleep.
B$

"Fool me once, shame on, shame on you. Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&

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barry_sword

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Re: New to cluster headaches, new to here
Reply #2 - Oct 19^th, 2008 at 9:56am

Hi Will and welcome. Sorry you had to go looking for us but for your own sake glad you did. There is a ton of knowledge here and many, many people willing to help anyway they can.

o2 is my abortive and Verapamil is my preventive. My cycles last a long time (usually more than a year at a time) and I find the hits ramp up near the end of my cycle. We are all different with how our cycles run and what triggers ect. but the pain is very real and all of us here share that.

You are not alone anymore.

Barry

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Just Plain Carl

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Re: New to cluster headaches, new to here
Reply #3 - Oct 19^th, 2008 at 11:39am

Hello Will,
Welcome to the group. Ditto on what Barry said.

I start my cycle with a 10 day Prednisone burst along with Verapamil.

Been doing this for 30+ years. I think it just gets easier to deal with after so long. What may have been a k10 20 years ago, may be a k7-8 now. Just my opinion.

Anyway, read up on all the past posts also. Tons of information for you and your Dr.

Good Luck To Ya
JPC

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DennisM1045

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Re: New to cluster headaches, new to here
Reply #4 - Oct 19^th, 2008 at 1:11pm

Hi Will,

Welcome to the nut house ... and your new 2nd home Cool

I found that once I understood what I was fighting and found a few weapons that help (Oxygen, Imitrex and Verapamil) that the pain became more bearable. Just being able to fight back, even if I lose a battle or two, really helps.

My cycles always vary in intensity. I typically get two a year lasting for 12 weeks or so each. So I'm half the year in cycle and half the year out. Just finished up a relatively easy cycle that started back in July. I'm just as likely to get blasted again in the spring. You just learn to take it as it comes. The key is to live your life between the hits.

-Dennis-

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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Callico

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Re: New to cluster headaches, new to here
Reply #5 - Oct 20^th, 2008 at 2:12am

Welcome to the family, Will.

You will find as you read here that CH varies from person to person, and cycle to cycle, and often from day to day.

Read, read, and read some more. You need to know what you want to try and what you DON'T b4 going to your Dr. What works for one doesn't necessarily work for another, so you will probably have to experiment with different combinations to get the king of relief you are looking for. for me, Kudzu was the best preventative, with minimal side effects, being that it is all natural. I used Verapamil and Lithium for some time with some relief, but the side effects got to me. O2 worked for a while, but only if I got to it soon enough. I was only using 15lpm though, and I don't think it was enough. Now some are going as high as 30lpm. I may give it another try. Energy drinks, such as Red Bull work very well for me, but they cannot be used all the time. If you use them you have to chug them down as fast as you can drink at the first sign of attack. They will usually work within 5-10 mins for me.

don't be afraid to ask questions. there is no such thing as a stupid question if it is an honest question, so ask away.

Jerry

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coach_bill

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Re: New to cluster headaches, new to here
Reply #6 - Oct 20^th, 2008 at 8:08pm

Hello Will. Bill here from Cleveland Ohio. I hear where your coming come, You got plenty of new advise now to catch up to for the last 3 years so read, read and read more. Best abort for me is Oxygen. Sorry to hear your getting hammered, now read everything here and build your weapons up and go kick some beast ass.!! Be Better Soon. Coach Bill

boy i cant wait till it's my turn to give him a headache. paybacks a bitch

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sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: New to cluster headaches, new to here Reply #7 - Oct 21^st, 2008 at 6:49am Hi Will, welcome to ch family! PF days your way, Sanna
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Rina

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Re: New to cluster headaches, new to here
Reply #8 - Nov 2^nd, 2008 at 7:28pm

Hi Will,

I am also new to the site. I am at the start of a third episode. I have found that one's capacity to handle more intense pain increases over time. I also used to use a scale of 1 to 10 and then I had a 12. The one great thing about it all is the relief when it is over. I almost have a sensation of achieving something spectacular and then need to celebrate. I only have nightly attacks at the moment, so I can slip in and out of bed without interruptions to my day. I wish I could figure out what makes the time of day change. life is so much easier if you can plan around this event.
Take care,
Rina

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