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primetime CH.com Junior Offline Still standing....barely Posts: 50 Baltimore, MD Gender:	maybe worth a look Mar 7^th, 2011 at 5:19pm Not sure if there's anything to this but figured it was worth a read. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: maybe worth a look Reply #1 - Mar 7^th, 2011 at 5:33pm Things would have to be awfully damned hopeless for me to allow them to split my noggin.
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bejeeber

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Re: maybe worth a look
Reply #2 - Mar 7^th, 2011 at 6:36pm

I sure am glad she finally found relief, but sad she suffered all those years without relief. If the article is accurate, it sounds like she thinks she tried everything, but likely hadn't actually tried some of the safest, most effective stuff (like high flow 100% O2 for instance) before going all drastic.

I wish more people would think to research their CH online and find us, and sometimes I wonder why they don't?

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« Last Edit: Mar 7^th, 2011 at 6:37pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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wimsey1

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Re: maybe worth a look
Reply #3 - Mar 8^th, 2011 at 8:06am

bejeeber wrote on Mar 7^th, 2011 at 6:36pm:

I sure am glad she finally found relief, but sad she suffered all those years without relief. If the article is accurate, it sounds like she thinks she tried everything, but likely hadn't actually tried some of the safest, most effective stuff (like high flow 100% O2 for instance) before going all drastic.

I wish more people would think to research their CH online and find us, and sometimes I wonder why they don't?

You know, that's a funny thing, my friend. I've wondered why it took me so long to get "on board" with all ya'll. I knew of the site many years ago, and it wasn't until I reached a moment of personal desperation that I decided to post. I'm not a personal fan of Facebook, Twitter, or any other blog. In fact, I belong to just one other blog with a totally different interest. I think reluctance builds over time when discussing CHs with others because we are treated to such crap and misunderstanding. It takes courage to come on here and say, "OK, I've got these damn headaches, and..." Those of us who have been around for awhile maybe forget how hard it is to become so vulnerable once again. I for one have felt this to be a life saver. Blessings. lance

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George

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Re: maybe worth a look
Reply #4 - Mar 8^th, 2011 at 8:02pm

There was a guy in Boise who ended up having two DBS surgeries for CH. The first one failed, because of a brain infection. He had a second surgery about a year ago to try to replace the wires. Each surgery cost around $100,000, and wasn't covered by insurance.

What happened after that, I have no idea. There's been nothing said publicly (and there was a lot of media coverage at the time). His un-updated facebook page is nothing but a mess of spam.

So I couldn't say. Doesn't sound all that great, though.

Best,

George

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Melby29

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Re: maybe worth a look
Reply #5 - Mar 8^th, 2011 at 10:01pm

My neurologist (the idiot one) would think this was something out of a science fiction novel, because women don't get cluster headaches.

But seriously....... it does sound all wonderful, an operation curing all that horrendous pain.... they don't mention the risks though. It's brain surgery. It wouldn't be such a nice story if it was someone who really had tried all the options, was coping well with preventative meds and O2 for the hits, decided to have the surgery anyway and died of complications, along with 80% of the people who tried the surgery.

As someone who is fairly new to this, I have no idea what it will be like to live with it for years - so for those who have been taking the meds and using the O2 for years and years now, what kind of success rate would you need to see, to consider going down that path???

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primetime

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Re: maybe worth a look
Reply #6 - Mar 8^th, 2011 at 11:07pm

Melby29 wrote on Mar 8^th, 2011 at 10:01pm:

My neurologist (the idiot one) would think this was something out of a science fiction novel, because women don't get cluster headaches.

But seriously....... it does sound all wonderful, an operation curing all that horrendous pain.... they don't mention the risks though. It's brain surgery. It wouldn't be such a nice story if it was someone who really had tried all the options, was coping well with preventative meds and O2 for the hits, decided to have the surgery anyway and died of complications, along with 80% of the people who tried the surgery.

As someone who is fairly new to this, I have no idea what it will be like to live with it for years - so for those who have been taking the meds and using the O2 for years and years now, what kind of success rate would you need to see, to consider going down that path???

I can say that after 7 years of 2 guaranteed cycles a year, as well as other random hits, I would seriously consider something drastic.

I know that there are plenty of people in the CH family that have dealt with much worse than me, for much longer than me and god bless them for battling the Beast. We're fortunate to have all the information and weapons in our disposal to do battle with CH. But speaking for myself, all I know is that CH is a real mother f---er and I'd do virtually anything to get rid of them. Anything.

Of course I can prevent and abort and continue to get by pretty well. But to not have to carry around an injector kit or to not have to run to an oxygen tank or drink those nasty energy drinks or to simply not have to ever feel that twinge, that pressure, that stuffy nose, that watery eye, then to not every have to battle one of these stupid G.D. headaches ever, ever again would be pretty freakin liberating.

Sorry gang.....didn't mean to rant. We now return you to regularly scheduled message board. Cool

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wimsey1

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Re: maybe worth a look
Reply #7 - Mar 9^th, 2011 at 7:10am

Quote:

But to not have to carry around an injector kit or to not have to run to an oxygen tank or drink those nasty energy drinks or to simply not have to ever feel that twinge, that pressure, that stuffy nose, that watery eye, then to not every have to battle one of these stupid G.D. headaches ever, ever again would be pretty freakin liberating.

These are definitely percs, but that's all they are. The real desire is to be rid of the pain. Episodics have cycles that end, with some relief in between. Chronics don't. I was getting hit every two hours, at a KIP 8, every day for almost 3 years when I went chronic. I was in conversation with a neuro about DBS at the time because as I saw it, death was not the worst thing that could happen to me. Unrelenting torture and total uselessness was. But, back to Bejeeber's comment: I found this site, started using O2 as indicated, upped my verpamil, lately have added D3 to the mix along with melatonin and energy drinks, and while still chronic, I actually have hours, or even days, between hits. I feel reborn, let me tell you. If this hadn't worked, I don't know where I'd be right now. But we are resilient creatures, and we cling to life and hope, and given even a small respite, we find life worth living again. That's how I see things, anyway. Blessings. lance

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primetime

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Re: maybe worth a look
Reply #8 - Mar 9^th, 2011 at 11:09am

wimsey1 wrote on Mar 9^th, 2011 at 7:10am:

Quote:

But to not have to carry around an injector kit or to not have to run to an oxygen tank or drink those nasty energy drinks or to simply not have to ever feel that twinge, that pressure, that stuffy nose, that watery eye, then to not every have to battle one of these stupid G.D. headaches ever, ever again would be pretty freakin liberating.

These are definitely percs, but that's all they are. The real desire is to be rid of the pain. Episodics have cycles that end, with some relief in between. Chronics don't. I was getting hit every two hours, at a KIP 8, every day for almost 3 years when I went chronic. I was in conversation with a neuro about DBS at the time because as I saw it, death was not the worst thing that could happen to me. Unrelenting torture and total uselessness was. But, back to Bejeeber's comment: I found this site, started using O2 as indicated, upped my verpamil, lately have added D3 to the mix along with melatonin and energy drinks, and while still chronic, I actually have hours, or even days, between hits. I feel reborn, let me tell you. If this hadn't worked, I don't know where I'd be right now. But we are resilient creatures, and we cling to life and hope, and given even a small respite, we find life worth living again. That's how I see things, anyway. Blessings. lance

I can't imagine what it's like to be chronic with CH. I know what a challenge a cycle can be, how frustrating it is to be in a hit ot the dread and fear of the next hit. I commend everyone who fights this battle virtually every day of their lives. Your strength is unbelievable.

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"Our greatest glory is not in never failing, but in rising up every time we fail." -Ralph Waldo Emerson

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bejeeber

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Re: maybe worth a look
Reply #9 - Mar 9^th, 2011 at 12:33pm

primetime wrote on Mar 9^th, 2011 at 11:09am:

I can't imagine what it's like to be chronic with CH. I know what a challenge a cycle can be, how frustrating it is to be in a hit ot the dread and fear of the next hit. I commend everyone who fights this battle virtually every day of their lives. Your strength is unbelievable.

A big ditto to that!

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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E-Double

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Re: maybe worth a look
Reply #10 - Mar 9^th, 2011 at 11:54pm

Take the pain but get rid of the anxiety and dread and that's what us chronics deal with. The only time I start having real dread is when I get a significant break and start imagining if it's gone. Then I get whacked and in a weird way I feel comforted because it's what I have known for so long.
No way I'd risk having a surgery that isn't guaranteed to work

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: maybe worth a look
Reply #11 - Mar 10^th, 2011 at 12:57am

E-Double wrote on Mar 9^th, 2011 at 11:54pm:

Take the pain but get rid of the anxiety and dread and that's what us chronics deal with. The only time I start having real dread is when I get a significant break and start imagining if it's gone. Then I get whacked and in a weird way I feel comforted because it's what I have known for so long.
No way I'd risk having a surgery that isn't guaranteed to work

I'm not officially chronic yet but getting close to the definition (10 months so far). My experience is very similar to E-Double in that I'm used to being hit (but not the pain) and I've always got O2 and Red Bulls to hand (other than when flying twice a week), so there is not the anxiety about wondering when the next hit is.

However yesterday was the first time I'd had a CH for 17 days, my longest ever break and to me that wasn't easy to deal with as I was constantly expecting the next one to arrive. Of course I got two in a couple of hours and was soon wishing it'd be another 17 days (or longer) before the next.

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wimsey1

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Re: maybe worth a look
Reply #12 - Mar 10^th, 2011 at 7:35am

Mike and E-Double, Amen to that. We've mentioned this before but I would add to what you have already said, and mention I worry these things will switch sides. Stupid, I know. But it's the devil I've come to know and I'd rather battle what I know than what I don't. May we all have truly pain free days and nights, and days and nights, and....Blessings. lance

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