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  New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › RE: New Cluster thread responses....
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RE: New Cluster thread responses.... (Read 1229 times)
ocnprl
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RE: New Cluster thread responses....
May 3rd, 2009 at 4:46am  
Hey, Steve again. Read your posts...thanks. I'm gonna fire my doctor when she gets back from her all-important vacation next week. But first I want to give her a BIG piece of my mind. I also have an appointment with a neurologist in a couple weeks for back surgery. I'm going to bring up my CH history to him, see what he says, and DEMAND he educate that quack I see. Couple of questions though...
LITHIUM - I suffer from bi-polar, and went through many meds before finding the right ones I take now. They had me on Lithium (1500 mgs  day) for years before switching, and I still had major CHs during that time on Lithium. It didn't do much for my depression, and don't see how it could help with my CHs. Don't you think if it would have helped them, it would have done something when I was taking it for depression?
O2- I tried O2 once or twice a looooong time ago and don't remember it working. Do I have to have a certain grade? I just don't see how it can help much. From what I read, it only masks and shortens it very little and takes almost 20 minutes into it before you feel anything. If that's true, after 20 minutes, that's almost half way through one CH. Do you have to breathe in with every CH every day? That's several times a day for me. Is it really worth it?
After the first 5 years or so, the only thing I found that helped some, was the Prednisone. I would get about a months supply (weaning off quickly), and my CHs seemed to subside a little after the first week or so, and going away completely after about a month or so.
Anyway, let me know and thanks.
Steve
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"During the darkness of the night, you transformed yourself into a lion king and let out a powerful roar...but fearlessly, you never stepped back, even with so many layers of dangers." Thich Nhat Hanh
 
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Bob Johnson
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Re: New Cluster thread responses....
Reply #1 - May 3rd, 2009 at 7:12am  
Steve, look at the statistics on the "cluster survey" (left). It's informal data but the best we have. Picture shows broad range of responses to the various meds used for CH, i.e., appears to be no option to trying different meds, varying doses, combinations,  until you find what works for you.

It's the great frustration: no universal fixes and even, for our body, possibility of a med stopping working.

The one thing we agree upon: finding a good doc with headache experience AND who is open to receiving new ideas from us is central to a good outcome.
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Bob Johnson
 
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ClusterChuck
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Re: New Cluster thread responses....
Reply #2 - May 3rd, 2009 at 9:11am  
ocnprl wrote on May 3rd, 2009 at 4:46am:
O2- I tried O2 once or twice a looooong time ago and don't remember it working. Do I have to have a certain grade?

Yes, and no ... You need 100% oxygen.  I have never heard of any other blend or "grade" being supplied by oxygen suppliers, but I am sure there are.


ocnprl wrote on May 3rd, 2009 at 4:46am:
I just don't see how it can help much.

Oh, yea of little faith!  LOL.

Oxygen is the only thing that has kept most of us, with what little sanity we have.  It is a life saver!  Most of us use it as our first choice abortive.  If it does not work, which there could be times that it didn't, THEN we go to one of the other methods: Imitrex; Zomig; etc.


ocnprl wrote on May 3rd, 2009 at 4:46am:
From what I read, it only masks and shortens it very little and takes almost 20 minutes into it before you feel anything.

Not always true.  Many of us can abort a hit in as little as 3 to 5 minutes!  And if it is a hit that would last 2 hours, THAT 3 to 5 minutes is a MIRACLE!

It is true, that you sometimes get a stubborn hit, that will take 20 minutes to abort, but even then, if it could last 2 or more hours, it is still worth it.

I think the information that you have read is old and out of date.  Click on the tab, on the left side of your screen oxygen info and read the latest information and see if that coincides with what you have read.


ocnprl wrote on May 3rd, 2009 at 4:46am:
Do you have to breathe in with every CH every day? That's several times a day for me.

Yes, you get on the oxygen, as soon as you feel one starting, however many times a day you need to.

I get hit (during my normal periods) between 8 to 12 times a day.  During high cycle, I can get hit up to 20 times a day.  I am chronic, so that is 365 days a year.


ocnprl wrote on May 3rd, 2009 at 4:46am:
Is it really worth it?

In a couple words, yes, YES, YES!!

I, most likely, would not still be walking on this earth, if I did not have my oxygen.  I swear by it.  It is the only thing that has allowed me to live any sort of a normal life.

I never go anyplace without a tank of oxygen in close proximity.  Do I take it with me into a store?  No.  BUT it is in my car, if I need to go on it.  I take it to work with me.  When traveling by car or train (I never take a bus), I have oxygen tanks with me.

You REALLY need to try it again.  We have improved the methodology, and made it much more effective.  BUT, you need to use the right mask, and regulator in order to get the desired results.

If you are anything like the rest of us stubborn ba$tards that dragged our feet, and said, "Oh, I tried it once, and it never worked for me" you will be kicking yourself, once you see how good it is.

If you wish, send me a PM, either with your phone number, or asking for mine, and I will gladly talk to you about oxygen usage.

OR, you can reach me via skype, and the user name of ClusterChuck.

PLEASE look into oxygen!

Chuck
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
ClusterChuck  
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TedtheBear
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Re: New Cluster thread responses....
Reply #3 - May 3rd, 2009 at 9:36am  
ClusterChuck wrote on May 3rd, 2009 at 9:11am:
It is true, that you sometimes get a stubborn hit, that will take 20 minutes to abort, but even then, if it could last 2 or more hours, it is still worth it.


No truer words spoken!!
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chrisw
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Re: New Cluster thread responses....
Reply #4 - May 3rd, 2009 at 4:58pm  
I was skeptical at first, but once I tried it,  I felt like kicking myself for not taking it seriously years ago.   If I get on it fast enough, i can get rid of a hit in 2-5 min.  Its true that its not a preventative, but anytime I can get through one without shooting myself with imitrex, I consider that a goood thing. 

good luck, and talk to chuck
chrisw
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christine neville weaver  
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Guiseppi
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Re: New Cluster thread responses....
Reply #5 - May 3rd, 2009 at 7:18pm  
Lithium is my prevent med and at 1200 mg a day blocks about 70-80% of my attacks, doesn't work for everyone. Historically is more effective for chronic then episodic...figures since I'm episodic! Wink

Oxygen will abort an attack for me in as little as 6-8 minutes. Certainly worth a shot. I'm one of those that CH comes back within 10-20 minutes of shutting down the 02. Now I take an oral cafergot when I start the 02. 02 beats it down in less then 10 minutes, cafergot keeps it at bay for up to 12 hours. Not a "cure" by any means but it sure makes the beast more manageable.

And make no mistake, everyone here understands the frustration you are feeling. When you're in high cycle it's hard to think logically about anything. You just want your fu%$ing head to stop hurting. Hang in there, we're all in your corner.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Lottie
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Re: New Cluster thread responses....
Reply #6 - May 4th, 2009 at 5:54pm  
Definitely worth trying O2! Even if it does take 20 mins to work, and you have to do it again and again... For me, every minute counts! And also knowing that there IS something you can do about it! Every time I abort a CH attack, is a victory, especially if it didn't require a shot of Imitrex.

Lottie
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BarbaraD
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Re: New Cluster thread responses....
Reply #7 - May 5th, 2009 at 8:34am  
I'm an O2 pusher also. I've been using it forever, but the usage has changed over the last few years. Higher flow rate - different masks, It's definitely worth another shot.

Back a couple of years ago it took 20 minutes or so to abort with o2 - today it's 3-5 minutes most of the time with the new stuff...

As to the prevents... I'm on topamax and have been for years (I'm chronic) - it works for me (a lot of the time, but I still get hit - it keeps me sane).

I keep cafergot on hand for the REALLY bad hits when O2 doesn't work (seldom, but it happens).

If you're hurting ANYTHING is WORTH trying until you hit on something that works for you. Read the literature available on this site - we've got years of research and testimonials here. I've been here since 98 and have seen things CHANGE a lot since then. There's always something new coming down the pike that wasn't there last year or even last week.

Hugs BD Kiss
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Brew
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Re: New Cluster thread responses....
Reply #8 - May 5th, 2009 at 12:59pm  
Steve,

Just to be fair, doctors need vacations, too.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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