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tboo
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My First Post
« on: Sep 23rd, 2003, 10:25am » |
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I've been coming to this site for a little over a year now, but this is my first post. I fist started coming here after I woke up in the middle of the night in extreme pain. My left eye was throbbing, I couldn't sit still and the only thing that I wanted to do was rip my eye out of it's socket. My girlfriend got up to find me crawling around on the rec room floor crying. It scared the shit out of her. We couldn't figure out what was going on (I was in about my second hour) and why I was hurting so much. We were about to go to the ER when "poof" no more pain. I cleaned up the sweat and tears off of my face and went to bed. I found this site the next day and began reading. I have since been to the doctor, but have had a hard time convincing him that this is real. My girlfriend works for a university library so she was able to get me some really good studies to take to him and show him what was going on. I have now been correctly diagnosed with cluster headaches. I'm only a seasonal sufferer, but I swear the beast saves it all up and gives it to me for two solid weeks all at once.
I'm in the middle of an episode now. I started getting shadows yesterday so I began the water treatment (it usually works for me), but ended up starting to feel a real banger coming along. I woke up at two this morning and have been suffering ever since (8:40am). I'm at work and afraid to leave for a "headache". Nobody seems to understand and I end up feeling like a jerk. So I'm suffering through it drinking as much water as I can hold, hoping this damn thing will go away. Sorry the post is so long, but I needed to get some of this out for my own benefit. Damn, I hate this.
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Killroy 2.0
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Re: My First Post
« Reply #1 on: Sep 23rd, 2003, 10:33am » |
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I feel for you 
sending good thoughts you way
Gena
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echo
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Re: My First Post
« Reply #2 on: Sep 23rd, 2003, 10:33am » |
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Sorry to read that the SOB has found another victim. Gald that the water treatment works for you. Has the neuro given you an Rx for any preventative meds?
Welcome to the MB.
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| « Last Edit: Sep 23rd, 2003, 10:33am by echo » |
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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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tboo
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Re: My First Post
« Reply #3 on: Sep 23rd, 2003, 10:38am » |
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Thanks for the good thoughts, I need them. I haven't tried any preventative meds yet. The water treatment was working so well for me I thought I'd just stick with it until it didn't work, which seems to be today. I've scheduled an apt. with my neuro for today, he wants to do some tests to see what my body is like during an episode. Hopefully he's read the lit out there and can get me something that'll work. From what I've read though it's pretty hit and miss.
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ZAIRA
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Re: My First Post
« Reply #4 on: Sep 23rd, 2003, 10:39am » |
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I'm sorry to see you posting here as a sufferer , but WELCOME to the board. Stay strong.... Zaira
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| « Last Edit: Sep 23rd, 2003, 10:39am by ZAIRA » |
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cootie
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Re: My First Post
« Reply #5 on: Sep 23rd, 2003, 11:18am » |
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Hi tboo.......hope you can find a med combo that works and helps you tolerate this ordeal....good luck with the neuro apt...keep us posted how yer doin. Pam with good neuro visit vibes fer ya
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tboo
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Re: My First Post
« Reply #6 on: Sep 23rd, 2003, 11:30am » |
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You guys are all the best! ;D
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Cerberus
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Re: My First Post
« Reply #7 on: Sep 23rd, 2003, 11:33am » |
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Sup Tboo.....sorry you got the beast, glad you found us.
First piece of advice, get some meds (Oxygen) as well if youcan get some. it seems to work for a good portion of us. I personally take, Imitrex, Verapamil, and Oxygen so far so good (only my second year with meds).
Another thing......no matter how much you may hate taking pills, shots or whatever.....never, never settle because its been working so far, the beast will have you for breakfast , lunch and dinner. Being armed with a good lot of info on this is really helpfull, somewhere on the left is "reading material for employers, many are not sympathetic to "headache" but many also change thier tunes when having read the symptoms and such.
Stick around and keep posting, vent, support , and do what ya gotta do to get relief and hope. I might suggest that if your Doc has never heard of CH it may be time to find one that does and get the treatment you need, not just from your neuro. There is a lot of help here if you need it, don't be afraid to bare yourself to the MB we have all done it and all have survived so far.
PF wishes to you from another episodic in Cycle,
I'm with ya in spirit man,
Ramon
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ClusterChuck
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Re: My First Post
« Reply #8 on: Sep 23rd, 2003, 12:08pm » |
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I'm sorry you have to be here, but welcome aboard.
You need some meds!! Push for the oxygen. It has almost no side effects, and then they can work on preventatives.
One thing that I need to stress: get a full set of tests (MRI, CAT scan, etc.) to make sure it is not a tumor or anything like that. Ch does not kill (although at times many of us wish it would) but tumors DO kill!
I hope you get some pain free time soon, and keep us informed. We DO care!
Chuck
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Lissa
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Re: My First Post
« Reply #9 on: Sep 23rd, 2003, 12:18pm » |
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My sympathies that you've been struck by the beast. Hang in there and welcome to our playground. ;D
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Episodic cluster survivor since 1995 at age 16.
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tboo
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Re: My First Post
« Reply #10 on: Sep 23rd, 2003, 1:18pm » |
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Thanks for all of the support and advice! One of the reasons I didn't push for meds and stuff was the cost. I've heard the cost of the meds can be kind of high when coupled with all of the doctor visits. I have decent insurance, but I didn't want a bunch of bills when I only get them for about 8 weeks a year and the water treatment generally works. It looks like I'm going to have to suck it up though and just pay the bills, oh well, at least it may keep the beast at bay.
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gwen
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Re: My First Post
« Reply #11 on: Sep 23rd, 2003, 1:24pm » |
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 my heart goes out to you, sending good pf vibes your way. Our thoughts go out to you.
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stuey
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if your current doctor is having trouble believing you then you need another doctor tboo, one who will be for you, not against you. you need meds, preventives, the works. it's nice that water helps, but water sometimes don't cut it. sometimes we need that imitrex injection, or some need that oxygen or whatever. please find a neurologist with some sense quickly. rooting for you strongly. stuey
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BarbaraD
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Re: My First Post
« Reply #13 on: Sep 23rd, 2003, 3:56pm » |
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tboo,
Good luck at the neuro. GET SOME MEDS!!! Even if you don't use them right now - have them on hand if you really need them.
I agree with the O2. Get a script for it and get it set up. It works most of the time for most of us. A good strong cup of coffee with it helps me most of the time if I get to it quick enough.
I feel for you right now - I'm dancing with Mr. Demon myself right now and it ain't a fun dance. I"d just as soon change partners - how 'bout you? Hell, nothing is working right now for me. I can get it down to about a 3, but he's lurking and just waiting. No sleep and I''m old an need my sleep. So at least you're not alone in your suffering. I'm right here with ya.
Hugs BD
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5-string
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Re: My First Post
« Reply #14 on: Sep 23rd, 2003, 4:09pm » |
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Hey tboo,
sorry you're dealing with this. Glad you're here.
Listen to Chuck. Get the tests. I got an M.R.I.,CAT scan,and an M.R.A.
This is my first year with meds. It's worth it for me big time. I got Imetrex nasel spray, Varipamil(preventative)
and oxygen.
And you're not leaving work because of a "headache"
I printed some stuff out and showed it to my powers that be because I was out of work from july 20--sept.03
These things really suck.
Good luck, I hope you can get what you need.
...Mark..
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Opus
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Re: My First Post
« Reply #15 on: Sep 23rd, 2003, 5:26pm » |
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Opus/Paul
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Big Dan
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Re: My First Post
« Reply #16 on: Sep 23rd, 2003, 5:35pm » |
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... Welcome Home, Brother...
Glad you finally broke your cherry....
... and get you some fuggin' preventatives, and read up on some O2... if you haven't already... 'tiss good shit, my friend...
PFDAN's to ya...
-Big Dan
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stevegeebe
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Re: My First Post
« Reply #17 on: Sep 23rd, 2003, 7:21pm » |
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Welcome tboo.
Hope you tour is short.
Ahh, the Autumnal Equinox...I suspect the membership is going to increase.
Weird shit.. ain't it?
Steve G
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Prense
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Re: My First Post
« Reply #18 on: Sep 23rd, 2003, 7:41pm » |
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Welcome aboard tboo!
Ditto to what everyone else has said except...
on Sep 23rd, 2003, 10:38am, tboo wrote:| Hopefully he's read the lit out there and can get me something that'll work. |
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DON'T COUNT ON IT! ;D
Best wishes for you!
Chris
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tsayswhy
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Re: My First Post
« Reply #19 on: Sep 23rd, 2003, 8:37pm » |
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welcome Good neure.
meds.
O2
and last but lease SUPPORT 
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Charlie
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Re: My First Post
« Reply #20 on: Sep 23rd, 2003, 8:48pm » |
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Welcome to the fold. Tboo. Mine were somewhat like yours. Seasonal and lasted for about 20 minutes. You may had read my stuff but here are two helpful links:
The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others.
http://www.ouch-uk.org/ch/note_colleagues.cfm
http://www.netsync.net/users/charlies/
Charlie
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tboo
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Re: My First Post
« Reply #21 on: Sep 24th, 2003, 1:05pm » |
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This board has been the best thing I've found since these damn things started. I went to doc and he's referred me to a neurologist for some more tests and stuff. I brought in a bunch of lit I'd printed out and told him to read it if he didn't know much about it. Fortunately he had heard of it and had a neurologist who could see me. We're waiting for that apt before anything is prescribed. At least the beast was at bay last night. He left around 7:00pm - 8:00pm, but has been telling me all day today that he wants to come back. I've been trying to keep him away with the water, but we'll see. Thanks for all the support and advice, and for those of you suffering right now, my good thoughts are heading your way. I'll keep you updated on the next apt.
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Hirvimaki
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Re: My First Post
« Reply #22 on: Sep 24th, 2003, 1:22pm » |
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Tboo,
I won't repeat all the good advice that's been posted before, but I do want to say: WELCOME! The best thing about this board is the sense of family and acceptance. It helps to know you are not alone and to be able to vent and share and grown and learn.
O2 and Imitrex are what I use, but find what works for you...
Hirvimaki (AKA Boo...)
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OneEyeBlind
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Re: My First Post
« Reply #23 on: Sep 24th, 2003, 2:26pm » |
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Welcome to the board !!!!!!! All the great advice has been given .. so my post is just WELCOME !!!!!!
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ebk3
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Re: My First Post
« Reply #24 on: Sep 24th, 2003, 8:49pm » |
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Take an imitrex shot/ if you're like alot of us it will kill the attack in minutes!!!
Gene
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The sufferers of the worst pain that humans endure, are very rare. Their very real hopes for the relief of this pain lie almost completely with each other.
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