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DougK
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Hi Kids,
I am in month 2 of my latest cluster and am considering surgery since it leaves a better taste in my mouth than the gun does. Does anyone have any information on the surgical options for clusters. I'm terrified. My only friend these days is the oxygen delivery guy. I can trust him.
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vietvet2tours
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Re: Surgery
« Reply #1 on: Sep 19th, 2007, 2:19pm » |
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on Sep 19th, 2007, 1:44pm, DougK wrote:Hi Kids,
I am in month 2 of my latest cluster and am considering surgery since it leaves a better taste in my mouth than the gun does. Does anyone have any information on the surgical options for clusters. I'm terrified. My only friend these days is the oxygen delivery guy. I can trust him. |
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o2 works why surgery?
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Kill em all let God sort em out
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Guiseppi
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Re: Surgery
« Reply #2 on: Sep 19th, 2007, 3:27pm » |
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Do a lot of research before you even consider surgery, it's a risky proposition, people have died from the surgery. The success rates aren't that good and some of the side effects...in addition to death.....are facial paralysis and then having the head ache switch sides.
I hear your frustration loud and clear, most of us have been there a time or two. What else besides oxygen are you trying...prevents....other aborts etc. We're all here for you and like i said ...most of us have been where you are right now.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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UN solved
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No proven surgical methods to get rid of CH yet.
Find a good neuro or headache specialist and find a preventative that helps. It's out there, you gotta find it.
Goodluck
UNsolved
PS. Sell the guns ! 
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nani
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Re: Surgery
« Reply #4 on: Sep 19th, 2007, 3:43pm » |
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Hi Doug. I would worry about a dr that would agree to surgery if you're episodic. You haven't mentioned any prevents. Have you tried any?
Look here:
http://www.ouch-us.org/medications/medications.htm
pain free wishes, nani
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Ctech
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Re: Surgery
« Reply #5 on: Sep 19th, 2007, 5:56pm » |
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I don't take any meds for my CH - only 02 for me, but...
If it got to the point that I was really thinking about surgery (or capping myself) I would be trying every med that I could get my hands on!
I'm not saying I have not considered the "offing myself" but that was before I new about CH, and I thought I was alone without any options other than banging my head and taking my own life.
There is at least some hope for us cluster heads now - have you checked out the Cluster Buster method? That sounds promising and will be my next line of defense should the beast f**ck with me to much
I have an arsenal of guns and they have never looked like a peaceful end to me  - lots of sleeping pills might have crossed my mind but blowing my head off???
Hang in there! There are better options than the two you are considering 
Chris.
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ski2k
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Re: Surgery
« Reply #6 on: Sep 19th, 2007, 6:23pm » |
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Sorry to hear you're having to go through this!!
I've had trouble finding ANYTHING that helps prevent my CH. The only abortive I've found has been O2 (except recently... Energy drinks help too!!), and when the O2 fails, I suffer.
Chris mentioned the clusterbuster method. Might be more reliable and MORE effective than surgery. After having eposodic CH for 18 years, I decided to give the seeds a try this time. Holy shit!! they're working!! I can't reccommend giving this a try strongly enough! I pretty much had "given up" on trying to treat my CH since nothing but O2 worked. This might be your "silver bullet" too!
If you have questions about RC seed treatment, PLEASE send me a PM, or E-mail, and I'd be happy to help out in any way I can!! Surgery is just too risky, and so rarely works for CH.
Best of luck, and PF wishes,
Adam
P.S. Nani, who posted above, is another great resource for buster info. She's been great to me! I'm sure she'd help too if you asked!
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Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
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DougK
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Re: Surgery
« Reply #7 on: Sep 19th, 2007, 8:33pm » |
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Hi Kids,
I'm 47 and have tried every medication the could think of since the diagnosis thirty years ago. Pred worked once and other than that nothing but side effects. I have nothing left to try and no energy to go on like this. My trust in the medical profession is nill but where else is one to go.
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nani
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Re: Surgery
« Reply #8 on: Sep 19th, 2007, 8:50pm » |
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on Sep 19th, 2007, 8:33pm, DougK wrote:| have tried every medication the could think of since the diagnosis thirty years ago. |
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I'm familiar with that scenario. Have a look at this site...there's hope. Really.
www.clusterbusters.com
PM me any questions, if you'd like. Or post them here or on a new thread.
ps wishes, nani - who's only a kid at heart.
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clusterwife
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Re: Surgery
« Reply #9 on: Sep 20th, 2007, 12:38pm » |
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As most know, my hubby Kevin had TN surgery to numb his left-side of his face. The surgery worked great for 2 years, then he began to get hit on the other side too. He was desperate like you, he bought a gun, was willing.. but then he found Dr. Wayne Hurt in Houston,Tx and had the surgery performed. You have to exaust all of the pill therapies first. This is a last resort. For now, his pain is still there, just to a slightly degree less sometimes.Now he is taking Lyrica to help him until he gets another MRI done. PM me and i'll give you my number and you can talk to Kevin personally. Believe me, he understands what you are going through. Hope to hear from you soon, Leah.
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Ctech
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Re: Surgery
« Reply #10 on: Sep 20th, 2007, 2:31pm » |
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Why would someone try everything in the book but not the cluster buster treatment  I have seen people on here act like this is a last resort??? I have not tried it myself but it will be my next choice if the 02 fails me...
From everything that I have read I think the cluster buster method seems less risky than most of the most commonly prescribed meds for CH.
I don't take nor have I tried any meds for CH besides 02 but I feel more comfortable taking something that has been in use for hundreds of years than some money maker for the "legal drug makers" (remember Vioxx?)
I think any doctor that would cut on someone’s head without recommending alternative treatments first has got some serious issues.
Just my thoughts...
Chris.
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nani
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Re: Surgery
« Reply #11 on: Sep 21st, 2007, 12:41am » |
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How are you doing, Doug? Check in, OK?
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ski2k
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Re: Surgery
« Reply #12 on: Sep 21st, 2007, 8:54pm » |
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yeah.. what Nani said....
Plus I was wondering if you had a chance to look into the clusterbuster link Nani sent you. I am currently trying one of those methods, and can't recommend it enough.
I, too, have always been difficult to treat. Never found ANY preventative that worked for me, but the RC seed treatment I've been trying has been unbelievable!! I never expected to get results like this! And it's cheaper than any med I've ever used! By far!
Look forward to hearing from you soon,
Adam
P.S. Listen to Nani... She's an angel!
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Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
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UN solved
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I don't know your history, but I'd be willing to bet that you haven't tried everything. The list of meds to try is just too huge. Everytime I thought I had tried everything, I found 3 more things to try. Keep looking, there IS something out there to help ... don't give in, don't give up !
If you haven't tried the clusterbuster method, plz, give it a fair trial. What about histamine desensitization ? (Worked great for me for a long time when nothing else did) Try it! ON nerve blocks ? Sphenopalatine blocks? Facet blocks? RFG ? ONSI ? Meds, meds, and more meds !! etc ... The list is truely amazing !!
PM me anytime !!
Goodluck
UNsolved
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Beastfodder
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Re: Surgery
« Reply #14 on: Sep 24th, 2007, 8:21am » |
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Doug, at 47, you've got a year on me.
I think I know where you're coming from - went too many years with a wrong diagnosis and no control at all over CH other than will power. By month 2 it's not pretty at all.
Not knowing too much about your history and meds and all that stuff it's hard to be specific in advice and support, simply because potentially there's so much to cover.
For the past three years O2 and clusterbusters have come as close to a solution as I could have hoped for - and also, judging some responses above, for quite a few sufferers.
All the very best and please post again if you need any more support
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O2 and clusterbusters - naturally
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Beastfodder
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Re: Surgery
« Reply #15 on: Sep 24th, 2007, 5:28pm » |
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Huge danger of letting this thread get hijacked for very wrong reasons - how you've been doing for the last few days Doug?
All the best
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O2 and clusterbusters - naturally
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Sandy_C
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Re: Surgery
« Reply #16 on: Sep 24th, 2007, 5:38pm » |
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You are right. My apologies to the board, and especially to Doug.
Doug, surgery is a final, non-alterable commitment. Personally, I would exhaust every other possible treatment method before even considering it. From what I can tell from your posts, you appear to be episodic. If you are episodic, you must know and understand that this pain WILL end. Surgical alteration/treatment is permanent, and has not been proven to "permanently" cure CH.
Please wait before making this decision. Please look in to all alternatives - prescription and "alternatives". Nani gave you a link to clustebusters. Read it, and then PM me. I have found great help here.
Sandy
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Ctech
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Re: Surgery
« Reply #17 on: Sep 24th, 2007, 6:17pm » |
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I know this has been touched on before but I think everyone that joins this forum should have a way to be contacted in situations like this one
We all know how depressing CH can make us and not hearing from someone after a post like this one makes people worry...
-Chris
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| « Last Edit: Sep 24th, 2007, 6:19pm by Ctech » |
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DougK
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Re: Surgery
« Reply #18 on: Sep 25th, 2007, 4:30pm » |
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Hi Kids,
I'm still here. Still doing battle. I am sorry for the delay between postings. I'm sure you all will understand. I started a another med thursday, indocine this time. I had used it about eight years ago but forgot how ineffective it was. This time it not only did not work the side effects had me cramped up for days and made the headaches worse. My new neuro is foreign and I dont believe he has ever treated this condition before nor does he understand english very well apparently. I'm screwed. I had such fun this weekend, I got to meet our local paramedics when I ran out of O2. Such nice folks. I'm now on Depakene starting today and I have the shakes. Oh well. Thanks to all of you for your care and support. I'm looking at clusterbusters in the between time and trying to find a neuro that understands. One of my problems apparently is that over the years I have forgotten all of the medications that have been tried. I guess I should keep better records or something. I just figured that if I am being seen in the same facility all this time they would have this stuff on record. There I go trusting the doctors again, stupid me.
Thanks again for everyones help and encouragement. I'll close this post with the advise I give my wife every day I send her off to work. I'm trying to do this myself as well.
Don't let the bastards get you down.
Doug
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Beastfodder
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Re: Surgery
« Reply #19 on: Sep 25th, 2007, 5:35pm » |
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Sympathy over your doctor.
It's very frustrating. Never too late to do a diary tho' - often helps me with doctor's since sometimes you just have to tell them what you do need as well as what you don't.
Worth persevering with Clusterbusters - odds are you might get some relief before a good neuro!
All the best
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O2 and clusterbusters - naturally
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ski2k
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Re: Surgery
« Reply #20 on: Sep 26th, 2007, 9:57am » |
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Glad to hear you're doing alright, and glad to hear you're looking into the clusterbuster site and treatment. It's helped me a TON!
Hope you find some relief soon, and keep us posted!
Pain free wishes,
Adam
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Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
https://www.iamshaman.net/affiliatewiz/aw.aspx?A=1022&Task=Click
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