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Nolan
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New to group
« on: Apr 3rd, 2004, 12:17am » |
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Hello everyone,
Nothing fancy for my username...it's my name: Nolan. Easy to remember.
I began suffering from cluster headaches in 1982, when I was 22 years old. I'm 44 now, so (obviously) I have some real war stories. I'd say -on average- my cluster headaches are on a 15-month cycle, although there have been times when they didn't appear for two or three (very happy) years.
My 'clusters' seem pretty typical to what I've read and heard described. I'm usually awakened 2-3 hours after I fall asleep. The pain attacks my right side, seems to center behind my right eyebrow, and runs over the right side of my head and down to my neck and jaw. To be honest, I'm not really keen on talking about what goes through my head and the extent of my suffering. Besides, if you're reading this you probably already know. Yes, I can relate to ‘shadows’ and could write a book about exhaustion and depression.
I've been married to lovely women for the last 12 years, and she is supportive. However, we both work (she, in a bank, I'm a photojournalist) and care for a three children. She struggles in a different way. I feel bad when she needs me and I can’t help. This stress/pressure often makes the pain worse and longer lasting.
I suppose what bothers me most, is the suddenness and dread...that, and the loneliness. Pacing for 1-2 hours during an attack really messes with your mind. But, what is crazy (and, sometimes I think I'm going crazy) is I'd prefer to have a night attack! I don't want anyone to see me like that, and I'm not supposed to be anywhere...except in bed. The stress from a day attack, when work or children are waiting is often overwhelming.
Right now, I'm one week into my current cycle. So, if the past is any indication, I have about three weeks to go. I'm on pain medication, vitamins, and (try to) drink plenty of water. I handle it; practice has taught me -even when the pain is nearly unbearable- to stay positive. I pray, but I don't plead. I have a great wife, a clean house, and children that love me. I’m thankful for what I’ve been blessed with.
Finally, thanks for this site! The part about having ‘someplace to go at 3 AM’ is what lured me. It stinks to have this condition, but good to have a place to help and be helped.
Hanging in there! You do the same-
Nolan
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pubgirl
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Hi Nolan
What a great first post. You sound like a lovely man with a lovely family.
Welcome to Clusterland, you won't be lonely now with people here to help with the beastie!
I guess from your post that if you are pacing for that long you haven't got a decent abortive that works for you.
Have you used Imitrex and 02?
Wendy
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BobG
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Re: New to group
« Reply #2 on: Apr 3rd, 2004, 1:01am » |
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Hey Nolan. Welcome to the board. Sorry you had a reason to come looking for this site but glad you found it. Don't sweat the user name thing. Many of us use a "real" name and it works out just fine.
Most of us would rather have an attack come on in the middle of the night. We like to be alone and pace where others can't see us and an attack on the job is a real bummer.
Good to hear you have a supportive lady. There is a Supporter's Corner here with wonderful people that can relate to what your wife goes through.
You say you're on pain medication............most cluster sufferers find that pain meds are of little help. Check out the buttons on the left side of your screen. There is information on meds that can be used to fight the cluster fight.
Keep hangin' in there.
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Stay stressed. Never relax. Never sleep. Ever.
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Nolan
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Re: New to group
« Reply #3 on: Apr 3rd, 2004, 1:15am » |
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Thanks for the warm greeting Wendy and BobG.
Wendy, I normally don't pace for two hours, except for the times when the condition is at its very worst. On average? Perhaps 45 minutes, sometimes less.
I have tried 02 without success. Don't know much about Imitrex. Would you suggest I ask my doctor about it? Needles don't bother me...I'd ram a stick up my ass if I thought it would help.
Bob, the pain medication is new, as of today. My doctor thought if I could 'break the cycle' it might lead to a quicker remission. I have to admit, having 2-3 pain free days helps with my outlook and attitude. As I type this (I'm supposed to be working!) I'm buzzing pretty good. I don't normally like pain killers, and won't like this before long. Though the years I've seen many doctors and tried MANY drugs, but nothing works for long. When it gets rolling, it's unstoppable.
Again, thanks for the welcome.
Nolan
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buckeyescooter
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Re: New to group
« Reply #4 on: Apr 3rd, 2004, 1:33am » |
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Welcome Nolan....we're very much alike in terms of cycle and how long we've had the HA's....I know o2 doesn't work for every one, but take a moment to research the site and make sure you've been using it properly....the key for me has always been mask and liter flow....have to get that baby up above 10 sometimes to really have an effect.
I have two little girls, both still in diapers, so I know the fear and helplesness of which you speak. I too, have a supportive partner....but she's also human. Living with someone who has these mofo's requires a special person. Anyway, I'm glad you're here. I just found this site myself earlier this week.
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Nolan
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Re: New to group
« Reply #5 on: Apr 3rd, 2004, 1:55am » |
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Hey Buckeyescooter-
Thanks for the welcome. Honestly, it is nice to speak to someone who understands. Before tonight, I had never talked (typed) to anyone who suffered this ailment.
Years ago, a pal loaned me a tank and mask, but didn't really explain how to use it. Of course, when I *needed* it, I didn't have the patience to fiddle with it.
Could be worth a try? If I get the chance, I will.
Nolan
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buckeyescooter
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Re: New to group
« Reply #6 on: Apr 3rd, 2004, 2:08am » |
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It's more than worth a try my friend.....it could save your sanity. It's by far the most effective way I have to abort a HA in minutes. Not 100% effective, but easily in the 80% range. When Im in a rough patch....I take it everywhere. Get some funny looks sometimes when I'm hauling an 02 tank on wheels and a cig hanging outta my mouth. Couple years ago had a guy do a doubletake and say, "Jesus, that guys hardcore".....and yes my friends I do know that 02 is flammable...was just having a rough day.
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Clusterheads are a rare breed.
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Superpain
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Re: New to group
« Reply #7 on: Apr 3rd, 2004, 2:32am » |
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I agree with giving the O2 another chance. HIGH FLOW!
If a med setup doesn't work, try a welding tank/regulator. That will definitely give you enough O2 flow to kill it, if it can be killed.
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Chris
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Bob_Johnson
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Re: New to group
« Reply #8 on: Apr 3rd, 2004, 7:13am » |
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Nolan, if your clusters hit regularly during sleep, might try one Ergomar at bedtime. It has a pretty good record for blocking the night attacks.
(It's a 2mg ergotamine tablet which you dissolve under your tongue. Need an Rx.)
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Bob Johnson
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pubgirl
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Hello again Nolan
For me even 45 minutes would be WAY too long.
I would really give 02 another go, making sure you have the minimum 9l/min regulator (preferably 12-15 l/min) and a non-rebreather mask (see details to the left)
If you hate injections (I do too) ask for the Imitrex nasal spray (unless you have low BP or heart trouble). It tastes awful in the back of your throat, but it aborts all my attacks within 15 minutes. The jabs are even faster than this though.
I would always use the 02 in preference though, I love it.
Hope you have a good and sympathetic doctor. Yours sounds a little doubtful as pain meds don't 'break cycles', they are mostly useless. In addition it seems very odd to me that you say you have tried many drugs over the years but no-one has given you the two main cluster abortives at all!.
If they are no good, change your doctor!
Wendy
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Nolan
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Re: New to group
« Reply #10 on: Apr 3rd, 2004, 10:01am » |
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Hi Pubgirl, and everyone else-
The very painful part of my CH attack lasted only 10 min this morning, after a pretty good nights sleep. The pain med (will have to get the name) seemed to kick-in about 15 minutes after I first felt it coming on.
My doctor is OK, certainly not up for any awards, but he tries. He just doesn't understand the depth of the pain (but really, besides those who suffer from it, who does? Who can relate? It probably seems like we're making it up) or perhaps he doesn't have the time. In any case, I have begun a list of the drug-treatments (like Ergomar) and will present them to my doctor at my next visit.
At least I'm sleeping 5-6 hours without interruption. But this 6:30-7-am morning cycle is getting old. Like in the past, I deal with the attacks, then try to forget and get on with my business. I WILL NOT allow this pain to rule my life!
Again, it is a wonderful feeling to chat with fellow suffers. Finally! Someone who understands!
N
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PittsburghJoe
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Re: New to group
« Reply #11 on: Apr 3rd, 2004, 10:33am » |
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Nolan,
In addition to all the great advice given here, get some melatonin! Since I started on 9mg nightly, I don't get woken up by the beast anymore, and I can get a good 8 hours sleep. I still get the occasional daytime attack, though I can usually nip those in the bud with O2. Melatonin and O2 have really changed my life. Just knowing I'll get some decent sleep and can abort any attacks quickly has helped my strss level immensely.
Welcome aboard. Sorry you had to seek us out in the first place...
Joe
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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Nolan
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Re: New to group
« Reply #12 on: Apr 4th, 2004, 3:28am » |
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I'm in the grips of a pretty bad cycle. Six attacks in the last 48 hours. I feel like hell, but keeping my chin up.
First thing Monday, I'm calling my doctor and asking about Imitrex and getting an 02 tank. I'm also considering buying some melatonin (thanks Joe) but I wonder, should I just try the Imitrex and 02 first? I wonder about mixing too many things in at once. Damn! I wish I would have posted Thursday night, so I could have acted on the proper meds Friday. This has been one tough weekend.
The pain pills are a joke. Remember however, that most of the doctors have told me I have a sinus infection or some other problem. My doc didn't pin-point the real problem (CH) until only recently, and then I confirmed it after reading this site and the Yahoo! Health section on cluster headaches.
Do any of you CH suffers have tenderness of the head (especially the scalp) after an attack or series of attacks? Often, I'll bring on a CH by simply washing my hair.
Nolan
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buckeyescooter
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Re: New to group
« Reply #13 on: Apr 4th, 2004, 10:35am » |
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Sorry you've had such a tough weekend Nolan.....hopefully you can get to the doc tomorrow. 02 can be wonderful thing....lets hope it works for you. Make sure that when he writes the prescription that he lets you get a regulator that goes up to 15....this is KEY! Keep us updated, and don't be too hard on yourself.
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joesf
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Re: New to group
« Reply #14 on: Apr 4th, 2004, 11:12am » |
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Mine HAs are like your's Nolan. My experience is almost identical to yours with them. I am 55 and have been getting them a long time.
As far as the O2 I just started with it this time. I use it in conjunction with showers, rubbing, ice packs etc. No meds. I got a bad one theother night i couldnt kill with anything. After 2 1/2 hours of suffering and no end in sight I tried the o2 again. The 02 killed it then in 15 minutes.
At least here you know your not alone. Welcome Nolan!
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buckeyescooter
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Re: New to group
« Reply #15 on: Apr 5th, 2004, 7:03pm » |
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Nolan....check in. How it go today with the Doc? Let us know how you're doing if you get a second.
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Nolan
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Re: New to group
« Reply #16 on: Apr 5th, 2004, 8:47pm » |
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Thanks for the concern! It really means a lot to me.
My cycle in continuing. A moderate CH woke me at 5:00am, but only after a restful eight hours of sleep. I purchased some Melatonin and took that before bed. I don't know if it was that, or simply that the "Beast" took the night off, but I felt better and more rested this morning than I had in days.
Saw the doc, and got both the 02 and a prescription for Imitrex (the kind that dissolves under your tongue) but not before a wicked lunch-hour CH.. 
Both now stand ready. *Sigh*
Figure this?
My wife fixed me lunch, (I go home everyday at noon to eat) Ham sandwich, potato salad, and Jell-O. Halfway through a CH cranked up and I left it. I felt GREAT when I got home, but inside 10 minutes I was a wreck.
Late this afternoon I had some errands to run, despite still being drained from my lunch hour CH. Next to my publisher's office is a Whataburger, so -starving- I pull in for a quick bite. Still waiting for my food, I felt "shadows" coming on and my right eye socket started to throb. Damn! I just sat quietly and decieded to eat until I *had* to leave. Three, four bites into the meal the pain left as suddenly as it appeared. I was in such a good mood I had a milkshake for desert and drove home smiling.
Little pleasures? I'll take all I can get.
Nolan
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FZfan
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Re: New to group
« Reply #17 on: Apr 5th, 2004, 9:52pm » |
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Nolan welcome.
Sorry you're here but glad you made it. Sounds like you're putting up a tough fight.
Shouldn't be any problem mixing o2 & imitrex, but I would suggest trying this:
Next time you start to feel it coming on, grab that o2 non-rebreather mask at anywhere between 10 and 15ml and breath deeply. Seal that mask around your face. Continue this for at least 10 minutes. If you still aren't getting any relief, give it another 10 minutes. If you're getting no relief after 20 minutes, turn off the tank and try the imitrex.
If o2 got you no relief at all during that attack, then next time take the imitrex tab first, then hit the o2.
The purpose of the first try would be to see if you can knock the beast down with o2 only. If you can do this, then you can save your meds for the really bad ones, or maybe decide not to use them at all.
Whatever you do, good luck. And, once again, welcome.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Luke63
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Re: New to group
« Reply #18 on: Apr 6th, 2004, 5:44pm » |
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Welcome Nolan....you found a good home. It sounds like everyone here pretty much covered all the good bases with you....keep positive and keep in touch...we're all here to help you. Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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Nolan
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Re: New to group
« Reply #19 on: Apr 6th, 2004, 11:48pm » |
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Just checking in...
Two Joe's, Pittsburgh and SF, and written me directly and their concern is touching. I told SF Joe this is the BEST, most REWARDING website I've visited since I got on the internet.
Since I started on the Melatonin (again, thanks Pittsburgh Joe!) I have slept all night and wake up very rested. I've built up my strength to the point where the CH's don't worry me so much, although my cycle has switched to noon-time attacks. Not bad though...getting by with no meds, and just a bit of 02.
In regards to the Melatonin, I really think Joe is onto something. No, it hasn't 'cured' me, but it does allow me to sleep through the night. I hope it works this well on the next cycle!
In all, I feel down deep that I'm in control of it, instead of the other way around. I truly feel that building your strength is key to getting through the cycle quicker. Of course, I'll be able to confirm these findings when its *really* over, No fireworks yet-
Nolan
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sandie99
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Re: New to group
« Reply #20 on: Apr 7th, 2004, 7:27am » |
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Welcome, Nolan!
Too bad you have to suffer from CH, but this site is the blessing to CH's dark cloud! 
Loads of PFdays,
sandie99
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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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