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O2 making my CHs more frequent... (Read 2046 times)
PNug
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O2 making my CHs more frequent...
Dec 8th, 2009 at 4:27pm
 
I'm wondering if anyone else has experienced this - I've just started O2 therapy again, and my clusters usually go away within 10 minutes (plus another 5 to be sure), but then they are right back, bigger, badder, stronger, faster approx. 2 hours later.

has anyone else experienced this?

I don't want to wade into the high/low flow debate, as I'm acheiving success with what I'm doing, it's just that I've had 5 episodes today, and that is UNREAL compared to waiting one or two out... I've also barfed twice today, which is also uncommon for me (I might barf two or three times during a cycle, but the last time I barfed twice in one day was about 10 years ago during a REALLY BAD three-month 
Smileyepisode).

-Leanne
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Joni
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Re: O2 making my CHs more frequent...
Reply #1 - Dec 8th, 2009 at 5:05pm
 
I am so sorry!  I haven't used O2 in many years for the same reason (well, not the vomiting).  I may not have done it correctly, but it did stop my headache every time...until I got off of it!  And when they come back, they are mad!  So, I never used it again.

Someone that uses it will be able to help you better and they will be along.  Are you using any other treatments that could be making you sick?  Could you coincidentally have a virus?  That's all I've got.

Good luck!
Joni
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burnt-toast
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Re: O2 making my CHs more frequent...
Reply #2 - Dec 8th, 2009 at 5:43pm
 
My experience with Oxygen was very similar to yours.  I.e., abort an attack only to have increasing numbers of attacks of increased intensity.  This increase occurred after about 10 months of good results from Oxygen.  Its use was discontinued and the frequency/severity of attacks returned to normal very rapidly.
   
To be fair to Oxygen my use was about a decade ago and my prescribed use was at 10lpm/nonrebreather.  Input from a few folks here indicates that flow rates up to 25lpm may help avoid this problem.  It is something that I am currently taking some time to look into for discussion with my Neuro.

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Marc
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Re: O2 making my CHs more frequent...
Reply #3 - Dec 8th, 2009 at 6:56pm
 
My experience with O2 was the same years ago. When I went to very high flow, the problem dramatically reduced after about 10 days. The hits became farther apart and with reduced intensity. This approach did require hitting every CH "full blast" every time, even with the mild hits.

You siad:
"I don't want to wade into the high/low flow debate, as I'm acheiving success with what I'm doing"

Yes, I was having the same kind of "success" at lower flow too.

I'm not trying to debate the issue. You asked a question and I gave you an honest answer.

Marc
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« Last Edit: Dec 8th, 2009 at 6:58pm by Marc »  
 
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Barry_T_Coles
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Re: O2 making my CHs more frequent...
Reply #4 - Dec 8th, 2009 at 7:04pm
 
Hi Leanne

I'm chronic & have that happen when i'm at the peak of a high cycle, 10 - 14 days.

Something that is worth a try that works for some of us o2 users is when your on the o2 & you have killed the hit & your about to do the follow up breathing take a Imigran tablet (sumatriptan); I have been able to get up to an 8 hour break before getting hit again, it wont work if you take it before or after it has to be right in the middle of the o2 breathing (I have no idea why this works it just does for me and some others)

"My preferred method is to count the number of breaths I take to get rid of the hit & then stay on the O2 for the same amount of breaths, I can usually abort a hit with about 80 to 100 breaths but I breathe straight from the bag as I have a beard & can’t get a proper seal with the mask.

The most important thing is to be absolutely sure that you have killed the hit, no "maybe’s" or "nearly", if you don’t ensure its gone before you do the follow up breathing there’s a good chance of getting a rebound hit & that will be even harder to get rid of than the original one."

Cheers
Barry

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barry_sword
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Re: O2 making my CHs more frequent...
Reply #5 - Dec 8th, 2009 at 8:58pm
 
Hi Leanne. I have been using o2 for only the last couple of years and never experienced any nausea or throwing up.

I find that when I kill a hit with o2 (been using o2 at 15 LPM but am ready with a higher 25 LPM reg and the new o2ptimask) is to lower the flow rate and stay on it for a few more minutes after aborting the hit. Seems to help keep that next hit away longer, but we are all different.

PF wishes. Smiley



 
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PNug
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Re: O2 making my CHs more frequent...
Reply #6 - Dec 8th, 2009 at 9:29pm
 
Joni wrote on Dec 8th, 2009 at 5:05pm:
Are you using any other treatments that could be making you sick?  Could you coincidentally have a virus? 


I do have a really bad cold right now - the worst I've had in a long time (if ever). I've been home from work for almost two weeks. It's hard to tell the difference between a sinus headache and a CH except:
-CH are ALWAYS on the same side
-CH do not respond to pain management medication
-CH come on fast and hard, whereas sinus headaches are just kind of there

So, I'm certain that I'm in a cycle - I've just never had them get that "mad" before!

I also just started accupuncture, and barely made it out of the office and home before I spewed. Good news is that my cold feels much better, but I think it'll take a few treatments before I feel any difference.

Does anyone else have experience with accupuncture?

I've had reasonable success with EFT as well, and reiki.  I know, I know... some are going to call me woo-woo, but when the meds dont work and you're on your last legs, anything ANYTHING is better than nothing (like I need to tell you guys that).

Thanks for all of your support, assistance and knowledge.

-Leanne
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Joni
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Re: O2 making my CHs more frequent...
Reply #7 - Dec 8th, 2009 at 11:06pm
 
Leanne-
When I asked you about a virus, I meant because you were sick at your stomach....not the CH pain.  Maybe you could be vomiting due to drainage from you cold/sinus problems.  Just a thought.  Feel better!
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Skyhawk5
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Re: O2 making my CHs more frequent...
Reply #8 - Dec 9th, 2009 at 12:51am
 
O2 will stop CH hits but will not stop CH. During peak cycle for me I would get hit after a K-9, a few hours later even without O2.

I know we're all different but stopping several hits is way better than not stopping one full blown..

Don
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PNug
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Re: O2 making my CHs more frequent...
Reply #9 - Dec 9th, 2009 at 2:08pm
 
Skyhawk5 wrote on Dec 9th, 2009 at 12:51am:
...stopping several hits is way better than not stopping one full blown.


True story, Don! I just wanted to know if this was a "normal" reaction.

I appreciate everyone's knowledge.

Thanks!

Smiley
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Tank
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Re: O2 making my CHs more frequent...
Reply #10 - Dec 18th, 2009 at 3:49am
 
I got into a knock down drag out with my neurologist about sinus headaches. They both acted the same with one difference. A CH would last 5-10 minutes w/o2 and a sinus would last several hours. The only way I could knock down a sinus headache was by using alcohol.

Tank
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Re: O2 making my CHs more frequent...
Reply #11 - Dec 18th, 2009 at 5:43pm
 
PNug wrote on Dec 8th, 2009 at 9:29pm:
So, I'm certain that I'm in a cycle - I've just never had them get that "mad" before!

I also just started accupuncture, and barely made it out of the office and home before I spewed. Good news is that my cold feels much better, but I think it'll take a few treatments before I feel any difference.

Does anyone else have experience with accupuncture?

I've had reasonable success with EFT as well, and reiki.  I know, I know... some are going to call me woo-woo, but when the meds dont work and you're on your last legs, anything ANYTHING is better than nothing (like I need to tell you guys that).

Thanks for all of your support, assistance and knowledge.

-Leanne



I think that stuff will help with the anxiety of a CH cycle, and probably that helps with the actual cycle in a way.  But it's really, really frustrating when you spend a lot of time trying stuff to directly stop the attacks and it really does not do squat for the CG.  If you want to try that stuff, I suggest you take it as a path to less anxiety and a healthier mind and body, not a direct help for CH.  I've been down that road.
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