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parrothead
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Another first-timer
« on: Jan 29th, 2003, 6:00pm » |
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I'm another first-timer to this site, my clusters started 2 years ago. My famitly physician didn't know what was going on. It wasn't until my Wife had to take me to the EM room one night, that a doctor there diagnosed my headaches. Since then I've found an excellent Neurologist in Denver, who has prescribed Amerge which works well most of the time. He has also prescribed several preventatives which haven't worked.
He now wants me to try Lithium, although I'm scared to try this because of the "stigma." Can Anyone give me some feedback as to how well Lithium has worked for them? Also, any info as to side affects?
My clusters seem to last approximately 3 to 4 months during the winter with about 9 months offf and come every year. Is this typical?
Any information would be most helpful.
Thanks,
Parrothead in Denver
P.S. - I like this site, buts whats up with all the fowl language and rotten attitudes? 
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cootie
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Re: Another first-timer
« Reply #1 on: Jan 29th, 2003, 6:06pm » |
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(P.S. - I like this site, buts whats up with all the fowl language and rotten attitudes?)
It's called the 'PV' effect Parrothead.....pain and venting...does the body good. You'll get lots of help here......hi to ya....Pam 
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marty
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Re: Another first-timer
« Reply #2 on: Jan 29th, 2003, 6:11pm » |
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Hi and welcome Parrothead..
I'm sorry to that you had to look for us - good thing that you found us though.
As to the Lithium, I don't have any personal experience, but I am sure that you will get plenty of feedback from others.
I can tell you that the "Rotten Attitudes" and "Faul Language" is part of what and who we are.. This is a large group of people and we are all different, we go through a lot and we try to do it together by supporting and standing by each other. Sometimes we will have our little arguments and it may get heated from time to time.
So please, don't judge us before you get to know us..
Once again, welcome and I am sure that you will find answers to most of your questions here.
Marty
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2late
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Re: Another first-timer
« Reply #3 on: Jan 29th, 2003, 6:11pm » |
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welcome parrothead, lith didn't agree with me, but alot around here swear by it, my advice is try it, it might be yer ticket, look into gettin' 02 it's benign & helps alot of us.......good luck! ...........2late
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brain_cramps
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Re: Another first-timer
« Reply #4 on: Jan 29th, 2003, 6:14pm » |
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Welcome aboard parrothead ;D (wasn't sure if I could say that with a straight face LOL)
Glad you found us, sorry you had to look.
This board has a great family that are very knowledgeable when it comes to CH. Ask, and someone will (at least try to) answer. Besides that, there is A LOT of info under the buttons to the left.
on Jan 29th, 2003, 6:00pm, parrothead wrote:He now wants me to try Lithium, although I'm scared to try this because of the "stigma." Can Anyone give me some feedback as to how well Lithium has worked for them? Also, any info as to side affects?
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I'm not sure about lithium, myself. But stick around, and I'm sure someone will have some info for you.
on Jan 29th, 2003, 6:00pm, parrothead wrote:| whats up with all the fowl language and rotten attitudes? |
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QUACK YOU ;D ;D ;D
You must've run into one of the brothers on a bad day.
When it comes down to it, everyone most of us get along put up with each other. Stick around. You'll have a hard time finding a better bunch of people (if I don't say so myself).
grant
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| « Last Edit: Jan 29th, 2003, 6:24pm by brain_cramps » |
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jonny
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on Jan 29th, 2003, 6:00pm, parrothead wrote:
He now wants me to try Lithium, although I'm scared to try this because of the "stigma." Can Anyone give me some feedback as to how well Lithium has worked for them? Also, any info as to side affects?
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Ive been taking Lithium everyday for 12 years, on its own it did nothing. When I mixed it with Verapamil (chronics cocktail ) it put me in heaven with more PF days ive seen in 16 years.
Sideffects are slight hand tremors if I have to go to 900 mgs.
Attitude?........You aint seen nothing yet......LMMFAO ;D
................................jonny 
Opps, almost forgot the most important thing.
The clusterhead that created this site has a favorite word, wanna know what it is?
FUCKENEH!!!!!!!;D ;D
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| « Last Edit: Jan 29th, 2003, 6:23pm by jonny » |
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Charlie
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Re: Another first-timer
« Reply #6 on: Jan 29th, 2003, 6:29pm » |
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Welcome aboard and glad you found a good MD.
I have little experience with drugs but others here really know their business.
Your cycles are nothing unusual. This horror likes to screw with our heads. He's hard to predict.
We know one another well and like to keep things lively. Even the bickering is mostly not too serious. We're too entrenched in colorful expletives to change. I think anyone with clusters does well not to be homicidal.
Stick around. There are good things here.
Charlie
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Mark C
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Re: Another first-timer
« Reply #7 on: Jan 29th, 2003, 6:32pm » |
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Welcome parrothead!
on Jan 29th, 2003, 6:19pm, jonny wrote:
Attitude?........You aint seen nothing yet......LMMFAO ;D
................................jonny |
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It's ALL good brother!
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jonny
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Mark,
You are the best ive seen here in a loooong time with the Gif's........LOL
I love it!!!!!
.........................jonny
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don
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Who gives an arial copulation (didn't want to say
FLYING FUCK) about stigma. If your in serious CH pain, stigma means nothing.
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Charlie
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Re: Another first-timer
« Reply #10 on: Jan 29th, 2003, 7:03pm » |
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That's cool Mark
I agree. Mark's the best
Charlie
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Karla
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Re: Another first-timer
« Reply #11 on: Jan 29th, 2003, 8:05pm » |
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I was on lithium for 1 1/2 years. I was so afraid to start taking it due to its stigma. I didn't want to be a zombie etc. It reduced the number of headaches I was having from 8/day to 4/day at 900mg/day. I had no side effects at all. I loved the drug. Then one day It lost its effect on me and my clusters started up again full force. Now I take methadone since I have literally tried everything there is to try and had them all fail me. Methadone keeps me pain free now.  ;D ;D
Marc you are so cool with your gifs.
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Karla
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domm
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Re: Another first-timer
« Reply #12 on: Jan 29th, 2003, 9:20pm » |
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a Jimmy Buffet fan in Denver? welcome to clusterville.
I have no experience with Lithium. I found relief with oxygen and Imitrex as abortives and Verapamil as a preventative. The Verap takes about 5 to 7 days to kick in, but the PF time is well worth it.
Pull up a chair
Good luck in finding the right set of meds that work for you
domm
PS - my brother lives in Denver. His name is Mike. Do you know him? ;D ;D
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Roxy
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Re: Another first-timer
« Reply #13 on: Jan 30th, 2003, 1:40am » |
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Welcome Parrothead
I've never tried lithium, but go for it....the relief is worth any kind of stigma you might be worried about. I really don't see much of a stigma in using it.......don't worry about what other people think.....to hell with them.
I don't think anyone here has an attitude problem.......call me at 3am when the beast is hitting.....then you'll see attitude!!!!  ;D
Hope you find all the info you need....get yourself some 02,
Tracey
domm: drove through Denver last year.....think I met your brother.
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JohnM
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Re: Another first-timer
« Reply #14 on: Jan 30th, 2003, 1:53am » |
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I took Lithium for 2 years during ccsles back in about 1994/95 It did zip for the ch and left me feeling a bit spacey and absent minded while I was taking it. Just after that time I discovered Imigran injections and wham, I had a way to stop them in their tracks.
Then I had the anxiety attacks when the injections run out and the medical aid and doctors won't let me have enough. Then I started stockpiling thme for the next cycle.
Maybe Lithium will work for you. Good luck
John
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Stampertje
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Re: Another first-timer
« Reply #15 on: Jan 30th, 2003, 6:31am » |
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Welcome aboard man.
You're definitely in the right place here for advice and support!!! They've helped me a lot.
I've been on Lithium now for a couple of months, I'm doing 800mg/day. But so far it ain't doing a thing, except making me a little off. 
My concentration is lower and sometimes I'm feeling a bit spacey just like John. I'm hoping my neuro will give me combo of the Lithium and Verapamil.
The meds are different for everybody, so try it is my opinion.
Stick around and ask if you're in need of info or support.
PFDAN,
Rik
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BruceD
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Re: Another first-timer
« Reply #16 on: Jan 30th, 2003, 8:35am » |
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Welcome parrothead,
Have you given the O2 a shot? A couple of weeks ago I was on here for the first time in desperation and was pushed towards oxygen. I must say that it is amazing and has been a lifesaver for me. As for the language & attitude, I usually just skip over much of it. Ya know this place is like a big family and some of these guys have been here together for quite a while. That combined with suffering from CH for many years makes it easy to vent and raz one another. No harm, just read past what offends and learn.
Stick around and read everything you can (and get your wife to login & do the same)
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SommelierCH
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Re: Another first-timer
« Reply #17 on: Jan 30th, 2003, 9:51am » |
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Well, at least you found us, sorry you had to. There’s a whole bunch of us here. I ended a ten week cycle end of Dec., it was eight weeks last cycle. Remissions used to be 3 yrs., last one was 1yr. 10 months. I’ve had them since 1986.
What works for me is:
OXYGEN, 100% pure @ 10 lpm, through a non-rebreather mask.
TRIPTANS, Maxalt MLT 10 mg. or Zomig ZMT 5mg. Both are tablets, that dissolve in the mouth, entering the body fast, under the tongue.
Get a script for the O2 and use it whenever the shadows start increasing. Always jump on it as fast as you can.
Keep us posted,
PFDAN,
David J.
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SommelierCH
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Re: Another first-timer
« Reply #18 on: Jan 30th, 2003, 9:54am » |
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Almost forgot,
FUCKENEH! FUCKENEH! FUCKENEH!
David J.
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parrothead
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Re: Another first-timer
« Reply #19 on: Jan 30th, 2003, 2:59pm » |
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Thanks to everyone, your input is very much appreciated. I think I'm going to forego the Lithium for now. My Neurologist wants me to try Neurontin(?) as a preventative.
I would really like to find out if there are any clusterheads out there who have been diagnosed with a Pineal Gland cyst.
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don
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Hate to burst anybody's bubbles but;
Neurontin was tried with me and was a complete failure.
20+ years of CH and the only preventative (and I've tried em all) that has ever worked has been verapimil.
Hope you have better luck !
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| « Last Edit: Jan 30th, 2003, 3:58pm by don » |
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BobG
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Re: Another first-timer
« Reply #21 on: Feb 1st, 2003, 4:25am » |
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domm...............I spent a week in Denver one day last year. Met Mike at the Hard Rock on 16th Street.
Roxy…….He mentioned he had talked to you. He had a really big grin when he said it.
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Laurie
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Parrothead,
I've used Neurontin during my last 4 cycles. My cycles last only 3 weeks, with 1 CH/night during sleeping hours. Neurontin stopped about 1/2 the headaches during the first 3 cycles, but didn't really work during my last cycle. I start with 300-500mg at night, gradually push it up to around 1000mg, then, when the cycle ends, reduce it by 100mg/night until I'm off it. I don't use it during the day.
For me, it seems to stop the escalation of whatever the trigger is into a CH. Sometimes I wake up with that dreaded feeling in my head that tells me the headache is about to begin...and then it never escalates, so I go back to sleep. More commonly, I just sleep peacefully through the night.
One nice thing about Neurontin is that it starts working within hours, rather than days or weeks. The side-effects, if used only at night, are generally tolerable - and even desirable for a CHer. It makes me extremely sleepy, so, if I do have a CH, I can go back to sleep in about an hour, after the Zomig kicks in. It also makes me feel a drugged sort of calm/peace, so I'm less afraid to go to sleep. I sleep about 2 hours more than normal while on Neurontin. However, I can't drive for about 12 hours after taking it (loss of coordination, mental fuzziness, and slowed visual processing). I'd recommend taking it about 12 hours before you plan to drive.
Laurie
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das
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Re: Another first-timer
« Reply #23 on: Feb 2nd, 2003, 9:20am » |
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First of all, there are a lot of people here that will give you great advice, but sometimes those same people will piss you off to no end. Thick skin here is best. Living with CHs for many years can make anyone sour, so just ignore any rudeness. I left this site for a long time because I thought that for a support network, there sure were a lot of people that made you feel unwelcome. Ignore them and just learn as much as you can.
I once posted asking what people's thoughts were about taking Lithium. At the time I was on all the other usual meds..verapamil etc.. and my Doc suggested Lithium. Someone here just said get off your meds if they aren't working and see what happens. I did that and tried msuhrooms and have been in remission since. Not one med !! It's been almost 14 months now, although I have gotten some shadows. My attitude at this point is, screw meds. I will only take shrooms or 02.
Why should I destroy my liver while suffering from CHs. At one point, I opened my medicine cabinet and it looked like my 90 year old grandfather's. I could have opened my own pharmacy.
So in conclusion, CHs suck!
Ya got learn to deal.. plain and simple.
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