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Topic: Welcome back....Geeeesh! (Read 528 times) |
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Patrick_A
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Welcome back....Geeeesh!
« on: Jul 8th, 2003, 10:32am » |
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Geeesh, I was hoping i'd never see this site again.
Its been 3+ years since i had a cluster headache. I am 44, and my Dad was also a cluster sufferer. His clusters entirely stopped at the age of 42. My last episode ended in February, 2000. After 2+ years i was beginning to think they were gone forever. NOT!!!
About 2 weeks ago, i started feeling strangeness happening on the right side of my head. It kind of felt like something was growing there. I recognized it almost immediately, but of course i was hoping it was my imagination. It feels like stuff is moving around inside my head. Hard to describe. Sure enough, about 3 days later, i wake up with a mild headache. Maybe about a 5 on a scale of 1 to 10. You know, just enough to wake you up, but also just enough to give you hope that its just a regular headache. I got up, took a hot bath, it subsided and i went back to sleep. Of course we all try to fool ourselves into thinking it was nothing, and i did the same. I went a week before i got another one. This one was a little stronger, maybe a 6 or a 7. But i knew at this point, "IT IS ON" I am back in full force. Yes, my clusters are back. I had a monster last night, 8.5. My own scale rates the 8 to 10's as killers. 10's make you suicidal but 8's make ya cry and everything in between is a true nightmare.
I see basically nothing has changed with this site since my last visit 3+ years ago. Same information, same people. I guess i come here for the diversion, maybe a little sympathy and support. I know i am in for about 2 to 4 months worth of killer CH's up to 5 or 6 a day everyday. I don't know about everyone else, But my headaches tend to follow a scale. I start out with 3 Ch's a week, and rapidly ramp up to 4 to 6 Ch's a day, everyday, and slowly go back the other way until eventually i realize.....They are gone! I have had Ch's in every season and every month. No real rhyme or reason.
I also have found out that i cannot stop the headache, It has a mindof its own. I can take an imitrex and stop it for now, but all it truly does is delay it till later, or if i take lots of imitrex, i get those vicious REBOUNDERS! They always seem to be 10's.
Anyways, I am unfortunately back. I pray this latest episode isn't as bad as the last. Thanks for any and all support in advance.
Patrick A
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Mark C
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Onward through the fog.
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Re: Welcome back....Geeeesh!
« Reply #1 on: Jul 8th, 2003, 11:03am » |
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Hi Pat,
Sorry you left...and more sorry you need to return..know what I mean.  I have many of the same feelings you do ramping up to an attack...bummer. It would be wise to check in every now and then just because much is learned about our disease and the information can be found here, plus we are all soooooo nice! Look here for more on rebounds.
PFDAN's
Mark
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don
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Re: Welcome back....Geeeesh!
« Reply #2 on: Jul 8th, 2003, 1:02pm » |
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Quote:| I see basically nothing has changed with this site since my last visit 3+ years ago. Same information, same people. I guess i come here for the diversion, maybe a little sympathy and support. |
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I got an idea. Next time your PF for 3 years maybe you can come here anyway and return all that sympathyand support your looking for to others. Just a thought!
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| « Last Edit: Jul 8th, 2003, 1:02pm by don » |
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ShariRae
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Re: Welcome back....Geeeesh!
« Reply #3 on: Jul 8th, 2003, 1:08pm » |
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Sorry you had to come back here.. but..why did u leave when you became pain free? There may have been someone here that could have used your support & encouragement...welcome back.. but this time.. please stay..
Shari
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Only two defining forces have ever offered to die for you,
Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
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Patrick_A
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Re: Welcome back....Geeeesh!
« Reply #4 on: Jul 8th, 2003, 10:41pm » |
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Sorry if i stepped on anybodies toes. I didnt mean to imply that this board doesnt have any uses because lord knows i needed it when i was suffering last time.
Now on to why i left after my Ch's dissipated last time. Ya know, I didnt just abruptly leave. Just kinda drifted off into the sunset. I have nothing but admiration for people who deal with this on an everyday basis, but i truly didnt have much to add and had too many irons in the fire to participate here.
Thank all of you for everything you do. I am sure i will need you again very soon, Patrick
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cootie
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Re: Welcome back....Geeeesh!
« Reply #5 on: Jul 8th, 2003, 11:20pm » |
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Welcome back.......hey stick around....never know when sumone mite need ya ta lend em an ear.....or maybe you'll need the same....sorry yer head hurts again ! Pam that's always sorry my head hurts
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RevDeFord
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Pain is real if the neighbors know you have it!
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Re: Welcome back....Geeeesh!
« Reply #6 on: Jul 9th, 2003, 8:15am » |
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Just letting you know, those excuses won't work. I left and came back and got totally blasted for it. And I see why.........there are tons of people on here who are currently Pain Free. But they lend an encouraging ear to those of us who are not pain free. And we in turn do the same for them. This is not a well that you come and drink from when you want a drink, it is a place you stay and help those who need you to lower the bucket for them now and then. Sorry to hear you are having pain again, but I hope you realize, as I did, that it is vitally important that people who are Pain Free stay so that they can provide hope and encouragement to those of us who aren't.
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I don' know why it hurts, but I pray it will stop.
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DouglasL
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Re: Welcome back....Geeeesh!
« Reply #7 on: Jul 9th, 2003, 9:17am » |
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Don’t worry about what Don and a very few minority on this board have to say about leaving and coming back.
Good thing none of them own a business. They would run off there own customers.
Good to see you! Welcome back.
DougL
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don
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Re: Welcome back....Geeeesh!
« Reply #8 on: Jul 9th, 2003, 9:26am » |
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Apparantly Doug L speaks for many, or so he would like to think. Trust me, he dont. You countin the minority numbers Dougie? Show em!
Ego is a dangerous thing Dougie boy.
Quote:| Sorry if i stepped on anybodies toes |
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You didn't step on toes. I think the "well" analogy by the big Rev in the cool shades puts it into perspective.
Quote:| but i truly didnt have much to add |
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As a fellow sufferer you have more to add than you may know. A supportive post or email to someone in pain goes a long way.
So lets get down to real beans. What are you doing for your pain? Meds? Neuro? Home remedies?
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DouglasL
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Re: Welcome back....Geeeesh!
« Reply #9 on: Jul 9th, 2003, 9:47am » |
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Don baby!
No i'm not keeping track or numbers. I just read the board.
I see gracious welcomes from everyone until you come along and then because you happen to be the prez of ouch a lot of people then follow suite. Any way that’s not the direction I want this to go.
Nope no ego here. In fact Don if you would ever take the time to get to know me. You would find that i’m really a very submissive and passive person. Your ego is the one to watch out for in my humble opinion.
DougL
Ps. Thanks for tweaking my nipples awhile back. How did you ever guess that I was into that? 
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| « Last Edit: Jul 9th, 2003, 1:14pm by DouglasL » |
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don
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Re: Welcome back....Geeeesh!
« Reply #10 on: Jul 9th, 2003, 10:21am » |
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Drop it Doug and get back to the guys thread.
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DouglasL
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Re: Welcome back....Geeeesh!
« Reply #11 on: Jul 9th, 2003, 10:38am » |
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Don,
No
DougL
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| « Last Edit: Jul 9th, 2003, 1:17pm by DouglasL » |
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Patrick_A
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Re: Welcome back....Geeeesh!
« Reply #12 on: Jul 9th, 2003, 10:56am » |
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Ok, then if you must know. One reason i left is because of exactly what is happening now. The constant bickering among people looking to bash others.
The other more important reasons were personal, but i will elaborate just for you Don and Rev.
I started building my house. and then my Mom came down with her 4th bout with Cancer. Between overseeing the building process and trying to care for my Mom and working my Fulltime job. It basically left me no time to participate here.
Mom died, House got built and Ch's are back.
Sad story but true.
Thanks all for welcoming me back, Though i must admit, I don't want to be back. For those who want to bash me for leaving. KMA!
Patrick
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don
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Re: Welcome back....Geeeesh!
« Reply #13 on: Jul 9th, 2003, 11:07am » |
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Quote:For those who want to bash me for leaving. KMA!
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SEE! You belong right here! LOL
So back to the beans. What are you doing to treat?
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Patrick_A
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Re: Welcome back....Geeeesh!
« Reply #14 on: Jul 9th, 2003, 11:12am » |
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I haven't started any meds yet Don. Got an appointment with my Neuro on Thursday. Gonna find out whats new and probably hook me up with some imitrex for aborts. I don't like Imitrex though. It makes me feel like my heart is going to explode and it also gives me whopping Rebounders. In fact the Rebounders tend to get very close to that 11 on a scale of 1 to 10. I am going to also see what is available in narcotics. Just need something that will give me that rare 8 hour sleep once per week. Don't like doing narcotics either, but i would rather mix it up than depend on Imitrex only. The other meds never worked for me as far as preventative measures go. Tried Prednisone and verapamil and they never made any difference.
My personal home remedy is to run a Very hot bath and submerge my head up to my nose, and snort hot water into the nostril that is affected ( right side always ).
We all have theories,....Mine is....The swelling inside my head needs somewhere to go. It swells against the eye, then it swells against the sinuses and then against the ear area. Of course that where my worst pain seems to come from. I find that if i can give it more room to swell, the CH is not as severe. So the only thing i can control is the sinus cavity and i try to make it as empty as possible. As everybody knows, When you are sitting on a "10", i'd sacrifice body parts to be at an "8", and if ur sitting on an "8", you'll do the same for a "6" and on and on. Anyways, Just trying to "Do my time". Hoping its not as severe as my last episode. Won't know till i get there.
Anybody here got a list of triggers for Ch's. I am aware of alcohol. I quit drinking years ago because of the Ch's. I do smoke, any info on smoking and others would be appreciated. Might finally be my time to quit tobacco too.
Thanks, Patrick
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BobG
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Re: Welcome back....Geeeesh!
« Reply #15 on: Jul 9th, 2003, 11:21am » |
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Triggers? You want triggers? We have Triggers. Lots of 'em.
relaxing after being stressed
nitroglycerine tabs
sitting behind a woman who wore way too much perfume
Alcohol
paint fumes
citrus juices and products
smell of Clorox
the detergent section in the grocery store
good whiff of a citronella torch or candle
Fumes
changes in temperature (like being in the refrigerated aisle of the grocery store)
sun on my face
Computer screens
nutrasweet
body odor
chocolate
caffiene
chinese food MSG
cold wind in the face
Milk amd milk products, i.e.: cheese
During vigorous sex sessions at peak of episode
barometric pressure changes
walking into the dry air inside from running the heat and back out into the moist cool air
Driving on tree lined roads that cause the sunlight to be broken in patterns
drinking plenty of alcohol or smoking like a chimeny
a pattern of sleep loss
prolonged periods of high adrenal stress
a very bad weather system
Peanuts (the roasted kind usually)
Red wine
Nitrates
in hot dogs
WD40
4-6 8oz cups of coffee a day
odor of raw onions
trialkylamines
Sleep
Frozen Food department
repetitve motion of the shoulder
taking a nap in the afternoon
REM sleep
Take-Offs on commercial airlines
PepsiMax
TV
watching a movie in a movie theater
ginko biloba
alka seltzer plus
over exertion in heat
nasty flu virus
Hot baths, sauna's, steamrooms
vicks inhaler
treadmill exercise
Food.........
the dreaded new shower curtain liner.
RED 'Stuff', certain foods that are red, pizza sauce, etc.
Altocor 60mg (lovastatin)
Anger is an invitation to the beast
my boss (she never shuts up)
My boyfriend (he never shuts up)
And the winner is “Wierd as it may sound, Jello will do it every time”
My personal trigger………lack of stress.
Bob-nolife-G
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| « Last Edit: Jul 9th, 2003, 4:26pm by BobG » |
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Stay stressed. Never relax. Never sleep. Ever.
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don
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Re: Welcome back....Geeeesh!
« Reply #16 on: Jul 9th, 2003, 11:22am » |
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There is a ton of info, opinions and experiances on smoking in the archives. Try doing a search.
Careful with the narcs but I understand the need for relief.
Have you mentioned or tried Oxygen?
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echo
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Re: Welcome back....Geeeesh!
« Reply #17 on: Jul 9th, 2003, 11:36am » |
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on Jul 9th, 2003, 11:21am, BobG wrote:Triggers? You want triggers? We have Triggers. Lots of 'em.
relaxing after being stressed
nitroglycerine tabs
sitting behind a woman who wore way too much perfume
Alcohol
.........
My personal trigger………lack of stress.
Bob-nolife-G
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Holy Shit Bob! What's left?
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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BobG
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Re: Welcome back....Geeeesh!
« Reply #18 on: Jul 9th, 2003, 11:40am » |
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Those are just the ones that don't include (too many) dirty words. 
We also have a list of "cures".
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OneEyeBlind
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Re: Welcome back....Geeeesh!
« Reply #19 on: Jul 9th, 2003, 11:40am » |
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Welcome back ... its always nice when one of the sheep return to the fold.
Glad to have ya here, sorry ya gotta be here.
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judyw
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Re: Welcome back....Geeeesh!
« Reply #20 on: Jul 9th, 2003, 12:04pm » |
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Welcome Patrick...First things first...sorry that you are here again, but so glad you knew you could find us here...Condolences on the loss of your mother  ...Kudos for getting the house built...Have you finally reached a moment of quiet in your life...seemed to always hit me at the times when I should be able to relax a little...Such is CH it seems...always in the background of our lives...Good luck with the visit to the neuro...please update us on how things are going for you... 
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RevDeFord
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Re: Welcome back....Geeeesh!
« Reply #21 on: Jul 9th, 2003, 2:17pm » |
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The only trigger that I can say with absolute certainty hits me is when I have a wide change in sleep cycle. An example - If I have a lock-in with the kids on Friday, I can guarantee you that by the Tuesday a week and a half later, I will start a cluster episode. This has happened to me time and again like that. Almost always the week or so after I drive a long ways for vacation I get one, when I have been up all night.
It stands to reason since the hypothalamus is tied to clusters as well, that when I have a wide change in sleep, it gets off kilter.
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I don' know why it hurts, but I pray it will stop.
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Opus
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Re: Welcome back....Geeeesh!
« Reply #22 on: Jul 9th, 2003, 3:45pm » |
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Bob,
You missed the most common trigger of all,
Living
Opus/Paul
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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BobG
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Re: Welcome back....Geeeesh!
« Reply #23 on: Jul 9th, 2003, 3:51pm » |
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LOL Paul.
You're right. As long as you're stayin' alive you can get attacked. The only cure is being pronounced brain-dead.
I'm not even sure about that. 
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Stay stressed. Never relax. Never sleep. Ever.
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Roxy
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Re: Welcome back....Geeeesh!
« Reply #24 on: Jul 9th, 2003, 5:29pm » |
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Sorry, Bob....I've been pronounced brain dead......(by my children of course)......didn't affect the ch's. ;D
Welcome Patrick!!
So sorry you had to return because of the headaches, with a PF stretch of that length, I just can't imagine the feeling of them returning. Talk to your doctor about getting some 02, it works as a wonderful abortive for most people, and the side effects are much easier to deal with than the trex.
PFDAN,
Tracey
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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