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Topic: New here (Read 788 times) |
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
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Just recently diagnosed with clusters. Annoying to know that I've been suffering with these for years, and no one bothered to diagnose me before. They used to send me home with a script for antibiotics and a diagnosis of sinusitis.
I'm going on the 3rd week of this episode, but thankfully I can go for up to 2 years without any episodes. This is the worst it's ever been for me, though. I'll be walking around, feel the thing coming on, and within minutes I'm suicidal/homicidal, banging my head, nose leaking, eye tearing, bulging and bloodshot, suffering in excrutiating agony. A couple hours later--just fine. Warn out, but fine. Exahsted and frightened, but fine. This goes on at least once and up to four times a day, but every morning just as I wake up. Good morning?!
My doctor won't actually treat these things, so I have to make an appointmnet with a neurologist, which has been another ordeal. So, in about a month from now, and this episode will probably be over by then, they might prescribe something for me. Meanwhile, I get to spend quality time in emergency rooms and clinics.
Wow--how did I get so lucky?
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Teaudire non possum. Musa sapientum fixa est in aure
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Jonny
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on Dec 9th, 2004, 8:10pm, Bandette74 wrote:| Wow--how did I get so lucky? |
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Believe it or not....you are lucky.
.......................................jonny
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john_d
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Sux to be in hell but always nice to find other people suffering there too. Glad you found here, Welcome!
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Tim_Z
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Re: New here
« Reply #3 on: Dec 9th, 2004, 8:16pm » |
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Welcome and hang in there.
Tim
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
Gender:
Posts: 113
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Re: New here
« Reply #4 on: Dec 9th, 2004, 8:17pm » |
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on Dec 9th, 2004, 8:13pm, john_d wrote:| Sux to be in hell but always nice to find other people suffering there too. Glad you found here, Welcome! |
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thanks!
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
Gender:
Posts: 113
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Re: New here
« Reply #5 on: Dec 9th, 2004, 8:18pm » |
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on Dec 9th, 2004, 8:16pm, Tim_Z wrote:Welcome and hang in there.
Tim |
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appreciate it. i've never even heard about these things before, but that didn't make the pain any different through the years that i've suffered with them.
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nani
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Got kudzu?
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Re: New here
« Reply #6 on: Dec 9th, 2004, 8:20pm » |
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Welcome and sorry you're here. Who diagnosed and then refused to treat you? What a jerk! You may be able to get an ER doc to prescribe verapamil for you. Possibly an abortive like imitrex, too. Ice helps a lot of us. Look around the boards here and at the OUCH site and you'll find lots of info. When you do see the neuro...push for a treatment plan even if your not in cycle. You need to be prepared for the next time. Pain free wishes...
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Others may come and go, but MY power is MINE.
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
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Posts: 113
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Re: New here
« Reply #7 on: Dec 9th, 2004, 8:26pm » |
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on Dec 9th, 2004, 8:20pm, nani wrote:| Welcome and sorry you're here. Who diagnosed and then refused to treat you? What a jerk! You may be able to get an ER doc to prescribe verapamil for you. Possibly an abortive like imitrex, too. Ice helps a lot of us. Look around the boards here and at the OUCH site and you'll find lots of info. When you do see the neuro...push for a treatment plan even if your not in cycle. You need to be prepared for the next time. Pain free wishes... |
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excellent advice! thank you. i will do this.
i had an er dr. prescribe 6 pills only of relpax, but that only seems to help a little if i take it way in advance, when i first feel it might be coming on. if i wait until it's an actual attack, it does nothing. plus, i only have one of these pills left, so even if it is useful, it won't be after tonight.
pain-free wishes to you all, as well!
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Sean_C
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Welcome Bandette, sorry you had to be here.
I hope it passes soon
Sean.......................
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BlueMeanie
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Welcome Bandette,
I suggest you go to the neuro anyway, cause you never know when another cycle could be lurking just around the corner.
Read the medical info and take it with you. 02 is a cheap med that works for many.
Hope your cycle ends soon !!!
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Jonny
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on Dec 9th, 2004, 8:26pm, Bandette74 wrote:| plus, i only have one of these pills left, so even if it is useful, it won't be after tonight. |
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Ice packs, hot/cold showers.....go out to the car and put your face in the AC vent, exercise real fast.
May not work but it has for many.
.....................................jonny
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
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Posts: 113
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Re: New here
« Reply #11 on: Dec 9th, 2004, 8:32pm » |
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on Dec 9th, 2004, 8:29pm, Sean_C wrote:Welcome Bandette, sorry you had to be here.
I hope it passes soon
Sean....................... |
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thanks, sean
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
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Posts: 113
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Re: New here
« Reply #12 on: Dec 9th, 2004, 8:36pm » |
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on Dec 9th, 2004, 8:32pm, Jonny wrote:
Ice packs, hot/cold showers.....go out to the car and put your face in the AC vent, exercise real fast.
May not work but it has for many.
.....................................jonny
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thanks. i'm searching for just about any tips, as you could imagine. i've noticed ice helps some--still excrutiating, but it's a little calming for me, anyway. and yeah, funny about the car A/C vent. i've noticed that, too.
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
Gender:
Posts: 113
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Re: New here
« Reply #13 on: Dec 9th, 2004, 8:39pm » |
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on Dec 9th, 2004, 8:31pm, BlueMeanie wrote:Welcome Bandette,
I suggest you go to the neuro anyway, cause you never know when another cycle could be lurking just around the corner.
Read the medical info and take it with you. 02 is a cheap med that works for many.
Hope your cycle ends soon !!! |
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02 as in oxygen? i've only learned about that here on the net. the ER never even suggested it. i will go to the neuro--i'd like to have a plan in place for the next time. which could be a few months to a couple years from now. i cycle but not regularly.
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Sean_C
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on Dec 9th, 2004, 8:36pm, Bandette74 wrote:
thanks. i'm searching for just about any tips, as you could imagine. i've noticed ice helps some--still excrutiating, but it's a little calming for me, anyway. and yeah, funny about the car A/C vent. i've noticed that, too.
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It can be ten below zero and I'll go in the car and blast that AC LMAO........................it really does work 
Sean.................................
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Jonny
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Ok, last but not least......02, have you tried it?
Let me know if the doc wont give you 02, I will set you up
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| « Last Edit: Dec 9th, 2004, 8:43pm by jonny » |
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
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Posts: 113
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Re: New here
« Reply #16 on: Dec 9th, 2004, 8:42pm » |
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on Dec 9th, 2004, 8:41pm, Jonny wrote:Ok, last but not least......02, have you tried it?
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nope, i haven't even heard about it until i got here (on-line)
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Jonny
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LOL....See above
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
Gender:
Posts: 113
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Re: New here
« Reply #18 on: Dec 9th, 2004, 8:48pm » |
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on Dec 9th, 2004, 8:44pm, Jonny wrote:| LOL....See above |
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i'll call around tomorrow, if no luck, i'll be lookin for ya 
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Redneck
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Damn the beast! Hate it found you.
the 02, AC, ice (Iperfer a cold rag) and tons of other things.
Finding a "good" doctor is the most important step.
Good luck and hang in there. You Ain't Alone!
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Cerberus
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Whomever said that two heads are better than one?
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Re: New here
« Reply #21 on: Dec 9th, 2004, 10:05pm » |
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If you know whats good for you...then take the time to learn from the wealth of knowledge here. And Jonny is right....you ARE lucky.
Welcome to the house that pain built.
Ramon
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: New here
« Reply #22 on: Dec 9th, 2004, 10:44pm » |
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See if the doctor that diagnosed you will at least give you a prescription for O2 (yes, oxygen). It is relatively cheap, has very few side effects, and is VERY effective for most of us. BUT, it must be done the right way. Click on the OXYGEN INFO button on the left of your screen. It tells you the proper way to do it.
And, as far as I am concerned (remember I am NOT a doctor), forget about the relpax pills. By the time they get through your digestive track, and into your system, the hit is over. Pills are generally worthless as an abortive.
Check you PM's. I gave you my phone number, if you wish to talk to a clusterhead in person. If you do not have unlimited long distance, send me your number, and I will call you. I am a 26 year survivor, and the last 6 as a chronic. You CAN survive this, and lead a somewhat normal life.
You are now home, and part of this family (as whacky as it is!), so welcome home, and welcome to my heart.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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marlin
New Board Newbie
I love YaBB 1G - SP1!
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Re: New here
« Reply #23 on: Dec 9th, 2004, 11:37pm » |
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I think you are lucky. I've been at this for 27 years and only found meds in the past 8 or so. Believe me, knowing what I know now I wouldn't fight this beast without a full arsenal of meds. O2 is a no-brainer. Your regular doc can write a script and even my shitty Aetna covers it. The rest of the meds should be prescribed by a neuro. Get a good one that at least attempts to appear to give a shit. One that has treated CHs is preferrable. I have had real good success w/ Imitrex INJECTIBLES. Ask your neuro for a sample if you're a candidate (not everyone can take it). If it works you're going to kick yourself for waiting to see a specialist.
This site is a wonderful resource. I will be going to one of the meets. In all these years of struggling I've never met another clusterhead in person. I feel like an alien that looks like everyone else but would really just like a little alien company. There aren't many of us, 0.1% of the general population was the last estimate I saw.
Good luck and I hope your cycle ends soon.
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Bandette74
New Board Veteran
i can't hear you. I have a banana in my ear.
Gender:
Posts: 113
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Re: New here
« Reply #24 on: Dec 9th, 2004, 11:50pm » |
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on Dec 9th, 2004, 10:44pm, ClusterChuck wrote:See if the doctor that diagnosed you will at least give you a prescription for O2 (yes, oxygen). It is relatively cheap, has very few side effects, and is VERY effective for most of us. BUT, it must be done the right way. Click on the OXYGEN INFO button on the left of your screen. It tells you the proper way to do it.
And, as far as I am concerned (remember I am NOT a doctor), forget about the relpax pills. By the time they get through your digestive track, and into your system, the hit is over. Pills are generally worthless as an abortive.
Check you PM's. I gave you my phone number, if you wish to talk to a clusterhead in person. If you do not have unlimited long distance, send me your number, and I will call you. I am a 26 year survivor, and the last 6 as a chronic. You CAN survive this, and lead a somewhat normal life.
You are now home, and part of this family (as whacky as it is!), so welcome home, and welcome to my heart.
Chuck |
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awesome! thanks so much, chuck. Daphne, here. i truly appreciate it, and will be in touch. obviously i've become a member of a strange new subculture--i wish we didn't suffer these unique pains--but at least i found "here".
thank you, all! 
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