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Topic: So I'm chronic....Now what? (Read 584 times) |
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Bond007
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So I'm chronic....Now what?
« on: Nov 1st, 2006, 2:16pm » |
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Up till now, I think I've been taking this whole CH diagnosis in stride. I've been taking my meds like a good boy, trying this and trying that with little to no positive effect.
Now, I'm on a 60 mg pred taper and 240 mg verap and I'm chronic. What's next? I read where Chop's neuro told him that there's virtually no chance for a chronic to become episodic. What are the chances? Can this beast still go away as quickly as it attacked over a year ago?
I guess I'm looking for a glimmer of hope here gang. If it's there great. If not, well then, I suppose I need to hear that now too.
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Sometimes life bites you in the ass -- that's what drugs are for!!
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maffumatt
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Re: So I'm chronic....Now what?
« Reply #1 on: Nov 1st, 2006, 2:59pm » |
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Now you deal with it the best you can. There is always hope. Never give up, never give in. Don't let the bastard win. You get up in the morning, put your pants on and go to work. When it comes, you fight. When its over, you go on about your day.
Look into clusterbusters. It ended a 10 month cycle for me. There is alot of evidence that the meds we take actually prolong cycles.
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Stju1970
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Re: So I'm chronic....Now what?
« Reply #2 on: Nov 1st, 2006, 3:04pm » |
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Please keep on fighting. Don't give up. We are all in this together. I have been fighting this thing for over 3 years, and I believe it will go away some days.
I didn't ask for this, and certainly you didn't ask for this, just come without warning.
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kcopelin
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good grief
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Re: So I'm chronic....Now what?
« Reply #3 on: Nov 1st, 2006, 3:50pm » |
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There is always hope. Live every single day. Pace yourself. Be gentle with yourself. You are not your headaches. Do people who are chronic ever become episodic? Yep. Do people ever suddenly stop having CH. Yep. Do we know why, when or how? Nope. Clusterbusters sure seems to have helped some folks though-can't hurt to try.
Listen, this cycle for me started in Feb 2005. That makes me chronic. And after the rage subsided, and the self-pity, and the absolute despair-I looked around. My husband, my kids, my friends, my community, my other family (here on this board). I'm pain-free usually 19 hours a day. That's where I live-those moments, with those people. Surrounded by love and grace. Its enough.
Wishing you peace
kathy
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jon019
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Re: So I'm chronic....Now what?
« Reply #4 on: Nov 1st, 2006, 4:01pm » |
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on Nov 1st, 2006, 3:50pm, kcopelin wrote:| There is always hope. Live every single day. Pace yourself. Be gentle with yourself. You are not your headaches. |
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VERY wise words. It took a few years but I eventually stopped thinking of myself as a headache named Jon.
They are a part of me, yes, but they aint me. I don't even say "my" headaches anymore. They're not mine, I don't own them, they don't own me and I'd really like to return them.
Regards
Jon
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BarbaraD
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Re: So I'm chronic....Now what?
« Reply #5 on: Nov 1st, 2006, 4:52pm » |
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You CAN go back to episodic. Kip did and was PF for a couple of years before he hit another cycle. And he was chronic for years before that.
doctors don't know everything (esp. neuros).
Load up on Red Bull and take your meds. Keep trying new things till you hit on your "magic" formula. Mine was topamax and for years I did really well on it. Only had hits occasionally. Before that I couldn't even get out of the house I was in such bad shape.
So there's a LOT of hope out there. Just keep a "positive" attitude about it (yeah yeah I know....). When it gets you down, come here and vent. Someone will be around to hold your hand and sympathize with you - that's what we do around here.
Hugs BD
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Bond007
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Re: So I'm chronic....Now what?
« Reply #6 on: Nov 1st, 2006, 5:44pm » |
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Thanks gang! I guess I really needed a pick me up. Of course the verapamil doesn't help. Makes me kind of sleepy.
Mrs. Moneypenny and I are gonna get away for a couple of days and escape to spa. Hopefully I'll be able to unwind a little and rejuvenate myself.
Once again thanks!
Jamie
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E-Double
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Re: So I'm chronic....Now what?
« Reply #7 on: Nov 1st, 2006, 7:06pm » |
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now the anxiety goes away and you stop asking for them to leave or worry when they will come.
I think it's easier mentally
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BB
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Re: So I'm chronic....Now what?
« Reply #8 on: Nov 1st, 2006, 7:12pm » |
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on Nov 1st, 2006, 5:44pm, Bond007 wrote:
Mrs. Moneypenny and I are gonna get away for a couple of days and escape to spa. Hopefully I'll be able to unwind a little and rejuvenate myself.
Once again thanks!
Jamie |
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Sounds like an excellent idea Jamie.
Have a nice relaxing time at the spa.
Enjoy yourself . Life goes on
All the best.
Annette
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Jonny
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Re: So I'm chronic....Now what?
« Reply #9 on: Nov 1st, 2006, 7:21pm » |
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on Nov 1st, 2006, 2:59pm, maffumatt wrote:| Now you deal with it the best you can. There is always hope. Never give up, never give in. Don't let the bastard win. You get up in the morning, put your pants on and go to work. When it comes, you fight. When its over, you go on about your day. |
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Great post, Bro!
Thats the thinking that got me through 30 years chronic.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Bob_Johnson
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Re: So I'm chronic....Now what?
« Reply #10 on: Nov 1st, 2006, 10:19pm » |
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Peter Goadsby noted that about 1/3 of chronic CH changed to episodic.
No predicting who/when/how but the odds are not bad.
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Bob Johnson
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Sean_C
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Re: So I'm chronic....Now what?
« Reply #11 on: Nov 1st, 2006, 11:12pm » |
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Whoever said Chronics yirtually never become episodic is way wrong bro. 10 years chronic, 16 episodic for me. I had a three year misterious break when they left, I thought they were gone forever 
Life goes on Jamie, nothin you can't handle.
Keep on keepin on 
Sean........................................
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chopmyheadoff
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Re: So I'm chronic....Now what?
« Reply #12 on: Nov 2nd, 2006, 5:33am » |
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on Nov 1st, 2006, 11:12pm, Sean_C wrote:Whoever said Chronics yirtually never become episodic is way wrong bro. 10 years chronic, 16 episodic for me. I had a three year misterious break when they left, I thought they were gone forever
Life goes on Jamie, nothin you can't handle.
Keep on keepin on
Sean........................................ |
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so just because its happened to you, that person who says it virtually never happens is "way wrong ?" .
how u figure that bro ?
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unsolved1
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Re: So I'm chronic....Now what?
« Reply #13 on: Nov 2nd, 2006, 9:37am » |
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on Nov 1st, 2006, 10:19pm, Bob_Johnson wrote:Peter Goadsby noted that about 1/3 of chronic CH changed to episodic.
No predicting who/when/how but the odds are not bad. |
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I read somewhere it was an average of 9 yrs chronic before they switched back.  No links
UNsolved
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clusterwife
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Re: So I'm chronic....Now what?
« Reply #14 on: Nov 2nd, 2006, 10:19am » |
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Good post Barbara. My hubby was chronic on his left side, had surgery, then they switched sides, now they are more eposodic than chronic. The beast has many faces, I guess. Hope all goes well.
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Sandy_C
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Re: So I'm chronic....Now what?
« Reply #15 on: Nov 2nd, 2006, 5:15pm » |
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Hey, Bond, James Bond. I hope you and Mrs. Moneypenny have a wonderful time at the spa.
Try to relax and enjoy every moment you can, and never give up. Several people have gone from chronic to episodic... it could happen to you, and I sincerely hope it does.
Sandy
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Sean_C
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Re: So I'm chronic....Now what?
« Reply #16 on: Nov 2nd, 2006, 6:45pm » |
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on Nov 2nd, 2006, 5:33am, chopmyheadoff wrote:
so just because its happened to you, that person who says it virtually never happens is "way wrong ?" .
how u figure that bro ?
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Lots of folks here have gone episodic from chronic, there are lots of folks who have gone the opposite way too. Nobody can predict what your clusters are going to do, there doesn't seem to be a formula for that equation
Some docs still say women don't get clusters, thier way wrong too 
Sean.............................................
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Bond007
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Re: So I'm chronic....Now what?
« Reply #17 on: Nov 6th, 2006, 8:56am » |
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Thanks for all the wonderful supprt everyone! And, yes, the spa retreat was well worth the trip and even the kidney stone I passed on the drive home Saturday from the damn topamax! Sheesh!
I've got a much better handle on this thing now. I'd been dreading becoming "chronic", but that's simply a label. It's not who I am and it will not be how I will live my life.
Thanks for the kick in the pants!!!
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lskilly
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Re: So I'm chronic....Now what?
« Reply #18 on: Nov 7th, 2006, 9:02pm » |
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One thing about us chronic cluster heads. We dont have to wonder if we are going to have one just when it will start. I find myself relying more on relaxing and ice than the meds now.
I am retired now and dont face dealing with CH at work, but I just will not let it alter my life. Was fly fishing with a friend the other day and was sitting on the bank dealing with about an 8 when he came along. He thought I would just go home but I told him Nah as soon as this is gone I'm fishin.
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JDH
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Re: So I'm chronic....Now what?
« Reply #19 on: Nov 7th, 2006, 9:28pm » |
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on Nov 7th, 2006, 9:02pm, lskilly wrote:
Was fly fishing with a friend the other day and was sitting on the bank dealing with about an 8 when he came along. He thought I would just go home but I told him Nah as soon as this is gone I'm fishin. |
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That's good stuff right there. What an amazing outlook you have.
lskilly 1 beast 0
Jim
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| « Last Edit: Nov 7th, 2006, 9:29pm by JDH » |
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chopmyheadoff
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Re: So I'm chronic....Now what?
« Reply #20 on: Nov 8th, 2006, 2:26am » |
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on Nov 2nd, 2006, 6:45pm, Sean_C wrote:
Lots of folks here have gone episodic from chronic, there are lots of folks who have gone the opposite way too. Nobody can predict what your clusters are going to do, there doesn't seem to be a formula for that equation
Some docs still say women don't get clusters, thier way wrong too
Sean............................................. |
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all the folk who iv heard that have gone from being chronic to episodic were episodic to begin with and then went chronic.
could this not just be classed as a long cycle ??
has anyone actually been chronic to begin with, for years, and then just turned episodic ???
quote : Peter Goadsby noted that about 1/3 of chronic CH changed to episodic.
rubbish, my neuro is doctor silver who works closely with prof goadsby, it was him that told me very few chronics turn episodic.
I realise we are trying to soften the blow for this poor fella but lets keep it to the facts
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lskilly
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Re: So I'm chronic....Now what?
« Reply #21 on: Nov 8th, 2006, 8:24pm » |
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Jim
Thanks it is the only way I have found to deal with it. I cant let it control me, I have to control it. But then I may be a control freak 
Skilly
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