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birdman
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O2 question
« on: Jan 17th, 2008, 9:21am » |
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I cannot seem to get off of the O2 without the return of HA within the hour. I start to wonder if too much O2 use is causing rebounds. Or if the beast is just biding its time until it sneaks in. Does anyone think O2 can cause rebound HA's? Is it just a delay/stall of the inevitable? I use the right mask at the right LPM and hope this is just the last ditch effort of the beast for this cycle. I am going through tanks like crazy. That God my supplier is understanding. The rep actually has an aunt who gets CH. What thoughts do you folks have on this?
Tim
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gizmo
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Re: O2 question
« Reply #1 on: Jan 17th, 2008, 9:38am » |
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The following O2 related problems are mentioned on the German OUCH site.
- using oxygen can increase the daily attack frequencies
- with episodic CH the length of the episodes might increase
- using higher O2 flow rates (> 10) and / or using O2 for a longer time can lead to "O2 headaches"
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DennisM1045
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Re: O2 question
« Reply #2 on: Jan 18th, 2008, 10:10am » |
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I'm not sure where the German site got that info but it is not my experience.
Some people have the beast return within an hour of stopping O2. Sometimes it takes a little backup. Taurine in energy drinks can help keep the beast at bay(and does for me). Some others will take another abortive med.
I hope your cycle breaks up soon.
-Dennis-
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nani
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Re: O2 question
« Reply #3 on: Jan 18th, 2008, 12:48pm » |
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Been having the same problem of late, Tim. I don't know the why or how or anything...I just know it sucks.
I almost feel like the O2 isn't really aborting, but just knocking it back for a while. So, I'm not sure if some of my attacks are back to back, or just one hit that keeps getting knocked back.
Hang in there, bud.
hugs, nani
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thebbz
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Re: O2 question
« Reply #4 on: Jan 18th, 2008, 2:16pm » |
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One step ahead of the demon is a good place to be.
I found that continuing with 02 after the HA is aborted increased the time between hits. 15 min. at least per treatment.
but thats just me. Sometimes nothing works dammit. 
all the best
thebb
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maryo
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Re: O2 question
« Reply #5 on: Jan 18th, 2008, 6:45pm » |
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I had been having the same problem w/ recurring hits 1-2 hours after aborting with O2. I have been somewhat chronic since menopause (3 years) but the hits have been wimpy compared to those of the past. Then this October they started ratcheting up. At one point I was having 4-5 a night. Each successive one was harder to abort. So for the first time I went on a prophylactic. Control is still dubious. I am on 80 mg Verapamil 3x day, 12 mg melatonin at bedtime, clonopin at bedtime, and I keep two cafergots bedside, which I take after aborting the first headache of the night. So I get through with one headache or possibly just an all-night shadow.
Sometimes it's really hard to tell what's working with clusters. They have a mind of their own -- changing pattern, defying treatments that previously worked. It's f--king war, man.
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Jonny
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Re: O2 question
« Reply #6 on: Jan 18th, 2008, 9:12pm » |
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on Jan 17th, 2008, 9:38am, gizmo wrote:
- using oxygen can increase the daily attack frequencies
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I would love to see a link that says anything close to that!
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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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Crappy
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Re: O2 question
« Reply #7 on: Jan 19th, 2008, 2:46am » |
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on Jan 18th, 2008, 9:12pm, Jonny wrote:
- using oxygen can increase the daily attack frequencies
I would love to see a link that says anything close to that!
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A book published in 1998 said "There is a clinical suspicion that over- utilization of oxygen may increase the frequency of cluster headaches." http://tinyurl.com/yvje4e
"Clinical suspicion" just means some doctors suspected it, maybe from anectodal reports from patients, but if there were any truth to it then some proof would have shown up in the myriad of actual studies published in the past 10 years.
I searched quite a few pages into Google, and the only other reference I could find was the same quote verbatim in one later science encyclopedia, so I assume it was just quoting that book.
I can't find any studies supporting the other info gizmo lists from the German OUCH site (increased cycles, or rebound O2 headaches).
Todd Rozen's report "Cluster Headache – Diagnosis and Treatment" (http://tinyurl.com/23b8k7) says that birdman's original post about attacks returning is experienced by some people:
Quote:Past studies indicate that
about 70% of cluster patients respond to oxygen therapy.
In some patients oxygen is completely effective at
aborting an attack if taken when the pain is at maximal
intensity, while in others the attack is only delayed for
minutes to hours rather than completely alleviated. It is
not uncommon for a cluster patient to be headache-free
while on oxygen but immediately redevelop pain when
the oxygen is removed. |
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That has been my experience so far, but I'm still going to try to get ahold of a demand-valve regulator and give that a shot. When I first got my tank a few weeks ago, it aborted my headaches for at least a couple of hours, which was fine by me. Now they come back 10 or 15 minutes later. I refilled my J tank after 4 or 5 days three times in a row, used a non-rebreather, and tried all of the tips I read on the board, 15 lpm, so it wasn't for lack of trying, but I'm not ready to give up on it yet before surrending to rx only.
Energy drinks have helped kill attacks when I first feel the shadows.
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The plural of "anecdote" is not "evidence."
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wildhaus
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Re: O2 question
« Reply #8 on: Jan 19th, 2008, 3:50am » |
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on Jan 17th, 2008, 9:38am, gizmo wrote:The following O2 related problems are mentioned on the German OUCH site.
- using oxygen can increase the daily attack frequencies
- with episodic CH the length of the episodes might increase
- using higher O2 flow rates (> 10) and / or using O2 for a longer time can lead to "O2 headaches"
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Could you give me the link Pls.
must say this is new for me............
and do go over this doc. I think it could help you.....
http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf
Michael
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| « Last Edit: Jan 19th, 2008, 3:56am by wildhaus » |
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gizmo
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Re: O2 question
« Reply #9 on: Jan 19th, 2008, 5:49am » |
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http://www.clusterkopfschmerz.net/oxygen.html
It is the part in red letters starting with "Aktuell: 4. Oktober 2002" (I've shortened it to the "facts" and translated it to English).
Unfortunately there's no reference mentioned.
> and do go over this doc. I think it could help you.....
I personally don't have a problem with O2 - simply because I hadn't the chance to try it (my doc just sent me to the neuro).
Oliver
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| « Last Edit: Jan 19th, 2008, 7:18am by gizmo » |
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BMoneeTheMoneeMan
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Re: O2 question
« Reply #10 on: Jan 19th, 2008, 9:36am » |
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on Jan 19th, 2008, 5:49am, gizmo wrote:http://www.clusterkopfschmerz.net/oxygen.html
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Ding, Ding, Ding!!!! We have a winner!!
Ohhhh, Jooooooonnnyyyyyyyyyyyy. U got your boots on?
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
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George_J
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Re: O2 question
« Reply #11 on: Jan 19th, 2008, 9:50am » |
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on Jan 19th, 2008, 9:36am, BMoneeTheMoneeMan wrote:
Ding, Ding, Ding!!!! We have a winner!!
Ohhhh, Jooooooonnnyyyyyyyyyyyy. U got your boots on?
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Hm. I think it's just an unfortunate linguistic coincidence. This is part of the German OUCH site, after all.
Leastways, it provides some insight where our prime troll and non-German speaking German got the screen names "klusterkopf" (sic) and "kopfschmerz".
Not to worry, gizmo--but for reasons unrelated to anything you're saying, the term "clusterkopfschmerz" sets off a lot of alarm bells.
Best wishes,
George
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Ah! The foreigners put on such airs
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And their harlequin eyes.
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It all comes to light in the sheer
Debonair.
(Ellen)
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gizmo
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Re: O2 question
« Reply #12 on: Jan 19th, 2008, 10:43am » |
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> Not to worry, gizmo--but for reasons unrelated to anything you're saying, the term "clusterkopfschmerz" sets off a lot of alarm bells.
I'm aware of that.
For some (unrelated ?) reasons I don't like the German site, especially the forum.
IMHO there's too much "small-mindedness" in regards to alternate treatments and a lot of unnecessary "sharpness".
Only my opinion of course.
Oliver
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Batch
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Re: O2 question
« Reply #13 on: Jan 19th, 2008, 11:20am » |
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Tim,
What you are experiencing is called a "Re-Attack." As strange as this may sound, a re-attack is a good indication you are using oxygen therapy effectively in aborting your attacks. Re-attacks are not uncommon and are a normal part of oxygen therapy for many of us.
The good news is you are aborting the most obvious symptom of a cluster headache attack... the pain. What is not happening is an abort of the triggering mechanism. As the effects of the oxygen therapy subside when you stop the therapy and the triggering mechanism is still present, the attack resumes... Staying on oxygen for an additional 3 to 5 minutes after the pain is completely gone usually helps reduce the frequency of the re-attacks.
You should be having the re-attacks around the same time frame each day, These attacks will abort with oxygen therapy just as easily as the previous attack. Re-attacks eventually go away if you continue to use oxygen therapy effectively.
Oh yes, most folks who think overuse of oxygen therapy results in an increased frequency of cluster headache attacks know very little about aviation physiology or aerospace medicine, nor do they fully understand the proper use of oxygen therapy as being the single most effective, least invasive, and least costly abortive for cluster headache attacks.
Yes, the possibility of a re-attack following a successful abort using oxygen therapy increases if the abort times are low and the Kip level of pain is high, but that is a small price to pay... After all, it's the pain we all want to stop and if oxygen therapy stops the pain... why walk away from a good thing or let someone talk you out of using it?
I was a Navy pilot and flew over 3,000 hours in fighter aircraft... All of it was spent breathing 100% oxygen and most of the missions were over two hours in duration... I'm still here. I also use oxygen therapy at flow rates of 15 to 25 liters/minute and have no problems. I and many others have found the higher the oxygen flow rate, the shorter the abort times...
Take care,
V/R, Batch
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Jonny
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Re: O2 question
« Reply #14 on: Jan 19th, 2008, 2:39pm » |
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Thanks Batch, not only for the info, but for your service to this country!! 
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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.
- Guiseppi
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wildhaus
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Re: O2 question
« Reply #15 on: Jan 19th, 2008, 3:46pm » |
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and to get to a higher flow,
on way is - (as I have it set)
2 tanks of 20lt. @ 200bar.
conected with a T conector and to the mask (I have a flowmeter and from there to the mask)
this is the flowmeter, and you can see its just over the 20lt./min. flow when I made the Pic.
you can get just about 20-22lt./min.
and I go for the time it takes to abort the pain about 7-10 min. and then 5 more to be on the safe end...... just
as Pete put it in his post.....
Micahel
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| « Last Edit: Jan 19th, 2008, 3:53pm by wildhaus » |
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Crappy
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Re: O2 question
« Reply #16 on: Jan 19th, 2008, 5:56pm » |
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wildhaus,
I don't understand the need for two tanks - wouldn't a higher flow regulator let you pull 20-22 lpm out of one tank? I'm just curious, because I have one J tank and am working on getting a demand-valve regulator, hoping to get much higher flow than the current 15 lpm, which isn't working for me well.
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BMoneeTheMoneeMan
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Re: O2 question
« Reply #17 on: Jan 19th, 2008, 7:26pm » |
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Michael, you and I have the same set up!!
I can not get a regulator that goes over 15LPM. I can get 15lpm regs all day long, and tanks are free........so, hooking up 2 tanks on 2 regs into the same reservoir bag gets up to 30LPM for me.
Works great
B$
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Jonny
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Re: O2 question
« Reply #18 on: Jan 20th, 2008, 12:52am » |
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on Jan 19th, 2008, 7:26pm, BMoneeTheMoneeMan wrote:Michael, you and I have the same set up!!
I can not get a regulator that goes over 15LPM. I can get 15lpm regs all day long, and tanks are free........so, hooking up 2 tanks on 2 regs into the same reservoir bag gets up to 30LPM for me.
Works great
B$
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Sweet that you can get 30, B$
I got to have my gas to dude dial mine out to 30 and change the lpm gage so it reads correct....I just found out this can be done.
30 LPM will = Heaven! 
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| « Last Edit: Jan 20th, 2008, 12:53am by Jonny » |
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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.
- Guiseppi
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birdman
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Re: O2 question
« Reply #19 on: Jan 21st, 2008, 11:26am » |
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Great information Batch, thanks! I need to get a higher regulator, mine only goes to 15lpm. I thought that was fine. Instead of dealing with the supply company, I think I may just buy my own. Anyone recommend a specific site or regulator?
Tim
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Batch
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Re: O2 question
« Reply #20 on: Jan 21st, 2008, 10:49pm » |
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Tim
If you use M-60 or M-size O2 cylinders, Western Medical, MADA Medical, and Flotec all make a "Flow Meter" Type Regulator with a CGA-540 Nut-n-Nipple attachment shown below. The sight gage is calibrated to 15 liters/minute, but the valve that controls the flow rate can be opened several more turns past 15 LPM to produce a much higher flow rate... The standard barb fitting for your NRB mask hose attaches to the treaded fitting below the flow meter.
Search on "Oxygen Regulator 0-25 LPM" and you'll get a lot of sources for the CGA-780 Yoke Type regulators for E-size O2 cylinders.
Hope this helps.
V/R, Batch
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Racer1_NC
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Re: O2 question
« Reply #21 on: Jan 21st, 2008, 11:17pm » |
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on Jan 20th, 2008, 12:52am, Jonny wrote:
30 LPM will = Heaven!
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It does....can't beat high flow O2!
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birdman
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Re: O2 question
« Reply #22 on: Jan 22nd, 2008, 9:29am » |
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Thanks Batch! Having a hard time of it right now and it helps to get some good information for the battle.
And ditto on the thanks for serving! God Bless!
Tim
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maryo
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Re: O2 question
« Reply #23 on: Jan 22nd, 2008, 6:15pm » |
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I love getting oxygen info from different perspectives. It never occurred to me that a fighter pilot would fill in some of the gaps.
In October I started having 4-5 headaches a night. The O2 was working fine but in my case I notice that as the night wore on (emphasis on WORE) the headaches got a little harder to knock down. Day after day of this led to serious sleep deprivation and probably my husband would say what he noticed was I got grumpy as hell. So I went on verapamil. Oddly enough, my BP was low to begin with and has gone up a little. Still getting hits (although fewer and wimpier). But at some point in the night I need a four-hour stretch of sleep so I pop 2 cafergot after aborting with oxygen. It buys me a decent stretch of sleep. Cafergot is cheap, too. So if additional O2 doesn't help, either pray for an end to the episode or consider something to compliment the O2 therapy (Red Bull?). And try the melatonin. I'm taking 15 mg at bedtime. Definitely a help. Cheap, no scrip needed.
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Akash
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Re: O2 question
« Reply #24 on: Jan 22nd, 2008, 9:05pm » |
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What about the side effects of O2? nobody has mentioned them? I have read that 15lpm of 02 or more can cause serious side effects such as blindness. anyone have any info on this? Also, has anyone heard of CH going away for good? I have not read one post with a person saying that their CH is gone for good. Is CH something that tends to stay with people for the rest of their life? I am 24 and started getting them every year from dec-jan for the past 4 years. Every year from ear dec till very late jan I get them every day without letting up. then they just dissapear for the next 10 months until Dec again.
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