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clopez
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First time sufferer
« on: Mar 1st, 2003, 5:52pm » |
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My husband has just started getting cluster headaches 5 weeks ago. We went through all the tests. MRI, Cat Scans, ETC. At first they thought it was a skull based brain tumor. But there is something there, but not the cause of the headaches. The nueroligst put him on nuerontin, but that made it worse. Thank god for Vicadin. I have never heard of these cluster headaches before. But after reading all these horrible stories from everyone, how can you all stand it. Can anyone give me any suggestions on what was given first time suffers and what drugs seemed to work the best 
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jonny
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LOL
27 years chronic (that means I get them EVERYDAY)
How can we survive?..........We have to, for our families.
5 weeks ago?, take the cluster quiz on the left.
Sorry your here but this is the best place on the planet for cluster sufferers and supporters.
...............................jonny
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cbolony
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Re: First time sufferer
« Reply #2 on: Mar 1st, 2003, 6:50pm » |
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Quote:| I have never heard of these cluster headaches before. |
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You came to the right place.Read every thing on the left side of the board.I like imitrex injection stops all the time.Sorry that you came here but welcome to the board.Lot of great people here just ask question
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2late
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Re: First time sufferer
« Reply #3 on: Mar 1st, 2003, 7:53pm » |
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welcome to the board! we stand it cause there is no other option! meds that work for me are verapamil oxygen & immitrex injections. good luck! .........2late
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Charlie
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Re: First time sufferer
« Reply #4 on: Mar 1st, 2003, 11:25pm » |
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Welcome aboard. You're not alone. We all wondered at first how we could stand it. We do and some of us have long remissions. A lot of us don't.
Stick around and keep in touch. You'll find some good ideas here and ways to manage this horror.
This is just me but be careful when neurologists tell you you have strange things wrong in your head. I was told the same thing....30 years ago. Others told me it was good that I waited. It wasn't true. Get more than one opinion. It's important
Charlie
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Jarvis
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Re: First time sufferer
« Reply #5 on: Mar 2nd, 2003, 1:42am » |
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Hello clopez. - You have come to a good place. Be prepared for much trial and error on the medications. What works for some doesnt work for others. Hope your husband gets lucky and finds a workable treatment right away. Read all you can in the links to the side and share the info with your neuro. We deal with it not by choice but because we have to. It seems pretty bad at first but later on it's pretty bad too.  You do learn ways to deal over time . A lot of survivors out here. Your husband is one step ahead of the game by having you there to understand. .. Do tell more and many here can help.
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rumplestiltskin
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this here's one club noone wants to be in.
Nothing works for everyone, something works for everyone.
There are folks who claim the Clusterheadache pains ceased entirely and forever due to natural remission, supernatural remission, drug induced cessation, or some other procedures. The validity of their claims is held in scepticism by the vast majority of those of us that frequent this site. Those few permanent sucess stories are scattered throughout the archives of this message board and the guest book.
Those presently here are divided between those that have found ways to manage their pain...to lessen the frequency and/or intensity of the attacks and those whose attacks are running unabated at regular heart-wrenching, head banging intervals.
The severity of our pain makes this a desperate search.
We have a variety of tools at our disposal. Some are preventatives and some are abortives. The lists can be found following the links on the left. Visit the OUCH (The Organization for Understanding Cluster Headaches)sites both here in the USA and the UK one.
My present strategies:
Preventative: I've recently upped my dose of Verapamil from 240 twice a day to 360 twice a day. This regimen which started at 80/day has kept me ALMOST painfree for over 1 1/2 years. My gratitude for that is beyond words.
Abortives: O2 (Oxygen exactly as perscribed at this site) a miracle tip. 100% as fast as I can suck it till the pain aborts. Vigorous exercise. Midrin and it's generics at some precursors and shadows. Zomig (Zolmatriptan) if I feel that a major breakthrough CH is brewing.
Dance Steps: Forehead on floor...head and neck in hands....toes curled.....moaning "oh fuck".
First time suffers receive: Misdiagnoses, bad advice, a tiny inner voice telling them "you have a brain tumor and you are gonna die", unsympathetic spectators, sympathetic spectators that say stupid things, and a taste of what the worst pain known to man feels like.
Walk in the sunshine
den
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SommelierCH
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Re: First time sufferer
« Reply #7 on: Mar 2nd, 2003, 7:41am » |
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You GO den! Preach brother. Nice post.
clopez,
We stand it, because no matter how intense the pain, we aren’t going to die. We don’t give up. I haven’t seen a thread on this yet, but I know that when that first one hit in 1986—I knew I was going to die. But I didn’t. However, I’m one of the lucky ones, 1-3 attacks per day, for 10 weeks, every 2 years and when it ends-it ends. Without this site (before this site) I was feeling pretty sorry for myself. Our family here, puts everything into perspective, and there is nobody else in the world who can understand. Welcome.
Just like Svenn, I am not a doctor (although I played one on TV), I’m just another Clusterhead from Norway. This is what works for me, when I am in cycle:
Absolutely NO ALCOHOL (and I get paid to drink), it’s a trigger!!!
MOST IMPORTANT: Oxygen, read all you can about it here.
For the Big One, that always hits 15min-2hrs after I go to sleep (hint: don’t sleep) I do a
Maxalt MLT 10mg. or Zomig ZMT 5mg (both are fast dissolving, triptan based, tablets, that enter your body subcutaneously, under the tongue, bypassing the digestive system i.e. fast) and hit the oxygen. This will take out the Beast in 10-20 min. (That is, if the wind is blowing in the right direction, and the sun isn’t in your eyes and your glove’s not too big).
Read all you can here and on the OUCH site. (While you are there, join OUCH, it’s free and it helps us to be counted) Print out the pages on medications and take them with you to your husband’s next Doctor visit, you must guide them. Look’s to me that right now, they are just trying to “kill pain”. Our pain is different.
Keep posting, the more we know, the more we can help,
David J.
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Roxy
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Re: be glad you found us
« Reply #8 on: Mar 2nd, 2003, 11:32am » |
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Welcome clopez...pull up a chair and start reading and listening!
on Mar 2nd, 2003, 4:21am, rumplestiltskin wrote:| this here's one club noone wants to be in. |
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No one wants to be here, but with these damn things pounding away at you....it's an awfully nice place, with awfully nice people 
on Mar 2nd, 2003, 4:21am, rumplestiltskin wrote:
Dance Steps: Forehead on floor...head and neck in hands....toes curled.....moaning "oh fuck". |
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Damn den.....since we're doing the same dance here....want to give it a whirl sometime?
PFDAN
Tracey
gosh den....seem to be quoting you a lot lately....must be those wise words! 
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I used to have a handle on life....but it broke.
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suzy617
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Re: First time sufferer
« Reply #9 on: Mar 2nd, 2003, 12:19pm » |
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Nice to meet ya Clopez
suzy
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clopez
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Re: First time sufferer
« Reply #10 on: Mar 2nd, 2003, 12:55pm » |
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Thank you all for the information. It has all been helpful. I have been reading everything I can get my hands on. If someone out there can help me with some other questions it would be greatly appreciated. My husband also has a mytral valve prolapse, so he has to be careful with what meds can be taken. Any suggestions if anyone also has a heart problem. We were also wondering how do you know the attacks are gone. Do you stop taking meds and they stop, how does this work. Sorry for being long winded but we are so new to this. Also, does anyone have problems reading or being on the computer. My husband can not read or touch the computer. But it is strange the tv does not bother him. I feel for you all and Really pray you can get some sleep at night. I know you are all exhausted. Thanks again for the input
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jonny
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on Mar 2nd, 2003, 12:55pm, clopez wrote:| Also, does anyone have problems reading or being on the computer. My husband can not read or touch the computer. But it is strange the tv does not bother him. |
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Your husband can not read the computer because "he dont want to"
Touch the computer?.....He dont want to!!!!
just stopping meds will not take away CH, you will have to ask an episodic how that goes......mine never stop
Episodics!!!! speak up!!!
.....................jonny
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suzy617
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Re: First time sufferer
« Reply #12 on: Mar 2nd, 2003, 3:16pm » |
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Well I know they are gone when all the shadows have stopped and I dont wake up in the middle of the night for the imitrex anymore. When they stop you will know.
suzy
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When God measures men, He puts the tape around the heart, not the head.
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rumplestiltskin
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how to see a light in a dark room
« Reply #13 on: Mar 2nd, 2003, 6:01pm » |
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Pre Verapamil: After 3 to 5 months of pain the frequency lessened over a few weeks. Then stopped entirely....absolutely no twinges, no shadows, no pain for around 3 months....year after year.
Post Verapamil: As long as it's working...ALMOST no attacks...I have no intention of stopping taking it just to find out if I'm "in or out of cycle". I'll make hay while the sun shines.
Computerphobia?....hmmmmm...i guess as long as someone else is willin to grab the life preserver for me and toe my ass around I wouldn't need to reach fer it myself to save my life. It may or may not be pertinent here....butt it never hurts to remind folks that ....well....you remember....you are noones doormat. You have my permission to live yer own life.
Walk in the sunshine
den
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Lori
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Re: First time sufferer
« Reply #14 on: Mar 2nd, 2003, 6:25pm » |
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Glad you found this site,,,there are great people here and tons of info. No better place to be if your hubby has clusters.
I'm episodic and I knew my cycle was over once I had no pain, twinges, etc at all for two straight weeks. At that point, my doc weaned me off all meds. Even being on prev. meds didn't take all the pain completely away so it was fairly easy to tell still when my cycle ended. He should also ask his doc how he will approach it.
Good luck to you all.
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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