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Melissa
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Re: O2 question
« Reply #25 on: Jan 22nd, 2008, 9:57pm » |
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Out of curiousity birdman, for what length of time are you spending breathing the O2? For myself, I spend no more than 20 minutes myself (if it does not abort before then) after feeling first twinges.
As for the O2 & blindness, that is if it's breathed in all the time (if I remember correctly). The amount we breathe is only to abort an attack and we shouldn't be on it longer than 20 min. at a time (I believe).
As for expecting them for the rest of your life, well, there are some who've had them for decades and they all of a sudden stop. Mine began when I was 16, occuring for about 40 days every 18 months or so, and am now 33. I don't believe they'll be leaving anytime soon and I am always expecting my cycle to come.
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birdman
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Re: O2 question
« Reply #26 on: Jan 23rd, 2008, 8:41am » |
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I usually stay on the o2 for 20 minutes, the most 1/2 hour. It is funny that you asked because I am strating to think that the longer I use it each time, the more likely I have been to get hit again. In other words, the times were I have had to go 1/2 hour ar the times I usually get hit again. Always assumed it was just a bad hit or rebound. Maybe too much o2?
Tim
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Melissa
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Re: O2 question
« Reply #27 on: Jan 23rd, 2008, 8:44am » |
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Well, when I have an attack and start using the O2, I only stay on it long enough for the pain to subside, then I turn it off. Due to owning a clustermasx, I am usually off of it after only 6-8 minutes because the pain is gone.
Are you staying on it regardless of the pain passing or is the pain still going after 20 min.?
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birdman
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Re: O2 question
« Reply #28 on: Jan 23rd, 2008, 6:26pm » |
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I stay on until the pain subsides. I give it a minute or two and then I am off. Takes that long sometimes for the pain to go away.
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Guiseppi
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Re: O2 question
« Reply #29 on: Jan 23rd, 2008, 6:41pm » |
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I'm jumping on this thread a little late, but what Maryjo said caught my eye. I've always had trouble with the "re-attack" within 20 minutes of shutting down the 02. Tried staying on it longer, the same result within 20 minutes of shutting down the 02 he's back.
What i have been doing is I pop 1-2 cafergot when I start the 02, 02 beats it down, cafergot buys me up to 12 hours pf time.
Others have posted the same results using just coffee or an energy drink, chugged as they start the 02. I intend to try that the next cycle. It'd be nice to dump the cafergot too if the energy drink/coffee route works for me. 
And yes, Batch is the resident guru of 02!
Guiseppi
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outofcommission
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Re: O2 question
« Reply #30 on: Jan 25th, 2008, 3:00am » |
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on Jan 17th, 2008, 9:21am, birdman wrote: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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hi birdman. i have been doing o2 for about 2 weeks now. i don't take any other meds. just kudzo. at least 4 or 5 days o2 did not seem to do a whole lot. first 2 or 3 days still getting 5 or 6 kip8s in a 24 hour period, some back to back. and no sleep. 3 to 4 days i would have to ride out a few sevens but it would level at that and not go higher with the o2. 5 to 7 days i still got woke but it was to a kip 2 to a kip 5 and i could hit the o2 for about 5 minutes and it was gone and i could get 4 more hours of sleep. still got hit 3 or 4 times a day but as long as i got on them immediately with o2 i would only have to ride out a kip 2 or a kip3 for about 5 minutes instead of riding out a 7 but about the same frequency.8 to10 days maybe a kip 1 or a dull shadow miday and a kip1 when i lay down to go to bed but i could turn on the heat and not have to be propped up to get some sleep. i am probably 13 days on o2 and last night i slept a full 8 hours and maybe 1 kip1 yesterday. also when i get hit i crank it up to 25 lpm for how ever many minutes it takes to ride it out all the way. i think o2 is great. we,re all different but give it give it at least 10 days. hope that helps birdman. let me know if it works.
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outofcommission
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Re: O2 question
« Reply #31 on: Jan 25th, 2008, 3:21am » |
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oh would also like to ad that i don't think i'm done with my cycle yet. couple days i'll let you know.my last cycles lasted 3 to 4 months and would hit any time of the year. i have been through about 6 cycles since i was 10 y.o. with about 3 to 5 years remission between. and with each cycle the pain would be more extreme and more frequent. (last cycle i lost my job, destroyed most of my furniture and went kind of crazy) this time around is not as bad. i don't know man.
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Batch
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Re: O2 question
« Reply #32 on: Jan 26th, 2008, 12:49am » |
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There are some interesting posts in this thread on re-attacks, time limits, and blindness so I'm jumping back in...
Melissa, Outofcommission... Good on you two for using oxygen therapy to abort you cluster headache attacks... It's great to hear about CH'ers using oxygen therapy to successfully abort attacks. That's all I use and it works great. More folks need to follow your example.
Melissa, sorry, but I've got to throw a flag on your comments about the 20 minute oxygen time limit and blindness... Neither apply to oxygen therapy for cluster headache attacks.
I've been an inmate in the National Eye Institute at the National Institutes of Health in Bethesda, MD for an eye condition and have been through three back-to-back phase I/II clinical studies in the last 5 years. I've also read a lot of their literature on eye conditions and I ask a lot of questions related to my eye condition and the use of oxygen therapy for cluster headaches...
The short answer is using oxygen therapy to abort cluster headache attacks does not pose a risk of blindness for healthy children or adults.
The only validated cases of blindness due to the use of high concentrations of oxygen I could find were directly related to premature infants receiving high concentrations of oxygen in an isolette or incubator.
The conditions sited include Retrolental Fibroplasia and retinopathy of prematurity (ROP). Retinopathy of Prematurity (ROP), originally called retrolental fibroplasia, was the leading cause of blindness in children in the 1940s and 1950s. It is still a problem today and the following link provides more than enough info if you're interested.
http://www.lowvision.org/retinopathy_of_prematurityxx.htm
Healthy people using oxygen therapy for cluster headaches do not have this problem when using an NRB O2 mask or mouth tube. Having said that, allowing gaseous oxygen to blow directly against the eye will dry it out and that could cause problems, but I doubt many folks could stand the pain unless they were heavily sedated.
Time limits on oxygen therapy... There is a 20 minute time limit for safe oxygen dosing during hyperbaric oxygen therapy at 2 and 3 ATM (that's equal to the pressure at 30 to 60 feet under water) to guard against CNS and Pulmonary Oxygen Toxicity, but the safe dosing limit at Sea Level pressure is much higher.
As I indicated in an earlier post in this thread, Navy and Marine Corps pilots are required to breathe 100% oxygen for periods of 2 or more hours at a time while flying tactical aircraft... Why would the Navy put pilots in the cockpit of a $35 million dollar aircraft then make them breathe something that would make them blind?
The simple answer here is pulmonary oxygen toxicity is not a risk during oxygen therapy for cluster headaches... There are any number of studies on pulmonary oxygen toxicity that indicate healthy people would need to stay on 100% oxygen for up to 12 hours continuously in order to encounter symptoms of pulmonary oxygen toxicity and these effects are easily reversed by breathing normal air. Six (6) hours of exposure to 100% oxygen is a more realistic and very conservative time limit.
Abort times and re-attacks. We are all wired differently so I don't have all the answers on re-attacks following a successful abort with oxygen therapy so here's my thinking...
The basic metric in using oxygen therapy to abort cluster headache attacks appears to be: The higher the flow rate, the shorter the abort time. I think 15 liters/minute is the minimum flow rate and I use higher.
Unfortunately there's a flip side of this equation for some of us, as the incidence of re-attacks appears to be higher with shorter abort times (less than 10 minutes).
If you can make the pain of a cluster headache attack go away in less than ten minutes... (that was the goal of your use of oxygen wasn't it?) Why not stay on oxygen at a lower flow rate like 10 liters/minute for another 15 minutes to abort the triggering mechanism and guard against re-attacks if you've been having them? I don't see any down side to this practice as long as it works.
If it doesn't work, Joe makes a great point... augment the O2 therapy. Some folks have good results by slamming a can of Red Bull with their oxygen therapy. Joe uses cafergot. When I first started using oxygen therapy and wanted to get more than two hours sleep between hits, I worked with my neurologist. We came up with a solution where I took a 25 mg tablet of imitrex then jumped on my O2. That usually gave me 4 to 6 hours between hits and a good sleep at night.
The bottom line is see your doc/neurologist to work out a solution with a prescription abortive to augment your oxygen therapy if augmenting with homeopathic aids fails to buy you relief from re-attacks.
Take care,
V/R, Batch
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Melissa
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Re: O2 question
« Reply #33 on: Jan 26th, 2008, 9:10am » |
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on Jan 26th, 2008, 12:49am, Batch wrote:
Melissa, sorry, but I've got to throw a flag on your comments about the 20 minute oxygen time limit and blindness... Neither apply to oxygen therapy for cluster headache attacks. |
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Ok, thanks Batch. I didn't know that. I thought I had read somewhere that breathing too much O2 caused some sort of problem, but my memory fails me.
No biggie!
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DennisM1045
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Re: O2 question
« Reply #34 on: Jan 26th, 2008, 2:23pm » |
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on Jan 26th, 2008, 9:10am, Melissa wrote:
Ok, thanks Batch. I didn't know that. I thought I had read somewhere that breathing too much O2 caused some sort of problem, but my memory fails me.
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It's memory loss Mel
Way to clear the air and shed light into the dark corners of O2 FUD Batch!
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otakuhouse
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Re: O2 question
« Reply #35 on: Feb 6th, 2008, 7:24pm » |
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Well I wish I had something good to say. I just tried out O2 and am terrified and just had one of my worst ch days ever.
Philosophically I came into my current cycle thinking after getting ground down emotionally and physically by daily imitrex shots and an allergic reaction to verapamil that I should go non med on this. After all, I now know that as bad as the headache is it's not going to kill me and I just have to willpower my way through it.
Neuro and i figured I'd supplement that by finally getting o2 at home. Was so happy to have it here. I swear that i absolutely positively followed all your instructions - no clustermasx but a proper NBR. I scuba dive so tanks and hoses and so on don't faze me. I even read that great document that Butch and others put together - found it fascinating.
This cycle I had gotten down to one headache a day without any meds. You could set a clock to my 5.58am headache. I'd slam coffee and abort it by 6.30am and go back to bed. It would disrupt my sleep though which I find is the thing I have horrible trouble with.
Last night it came on and I went to the o2 tank and did everything as recommended.
Within 6 minutes pure relief. It was incredible. I was elated. I stayed on for 15 mins total at 10lpm. Was a little difficult to get back to sleep in that happy state. Finally did.
And then got woken up two hours later by another one. Hit the o2. Ten minutes in aborted. Back to bed exhausted.
An hour later again, the pain. Even worse. Hit the o2. Fifteen mins and nothing. Escalated to a kip 10. My first 10 on this cycle.
Forgot how bad those are.
I hit an imitrex tablet and the o2 again. Just got worse. Tablet did nothing but make me light headed stiff necked and cold sweat like crazy.
All day long i've been in and out of sleep with pain. Shadow has persisted even now 12 hours later have it.
Right now I am very, very wary about hitting o2 ever again. Advice?
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Batch
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Re: O2 question
« Reply #36 on: Feb 6th, 2008, 10:06pm » |
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Konbawa Otakuhouse.
What flow rate are you using when you hit the oxygen therapy?
15 liters/minute is the minimum... It works best when you start it as soon as you get that ominous feeling... Aw $h!# !!! ... Here it come again...
If you wait for as little as a minute... you pay for the delay with a longer abort time... Even at 15 liters/minute if you don't catch the warning signs and wait until you have a Kip 7 to 8 launching like the Space Shuttle, you're in for a painful ride that can last 30 to 50 minutes. Start O2 therapy ASAP after feeling the onset.
Oyasuminasai
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otakuhouse
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o2 question
« Reply #37 on: Feb 6th, 2008, 11:13pm » |
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I did initially start out at 10 on the first two, as my neuro wrote in the scrip, but after i kept coming back i upped it to 15 armed with the knowledge here and followed it to the letter. And i definitely hit it every time as early as possible sometimes when it was just that oncoming pressured feeling. The past week I have been absolutely on schedule with a great routine that's been managable. With this I went into the hellhole. The thing I hate most about the sleep disruption is I know for a fact that steady regular sleep keeps the beast away.
I'd do anything not to go back into six attacks in a row and a kip 10 so now i'm scared to hit the o2 again... And i know something that helps the o2 is relaxation. That first abort was so wonderful and hope filling. Given the origin of the question here do we find that some individuals just have an unusual reaction to o2 therapy?
One thing that has been odd about this current cycle is that if I ride out a headache on my own after it ends i am left with lingering pain around a kip 3 or 4 for hours later. Nothing i can't handle but annoying as all hell. Perhaps the o2 is killing the pain but the trigger mechanism remains for long periods and every time it comes back its amplified. At a loss and want to get this right.
Thanks for the advice and knowledge, though. You have better japanese than me, man, i'm half korean!
(just outta curiosity, what kind of craft did you log the most hours in?)
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Batch
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Re: O2 question
« Reply #38 on: Feb 7th, 2008, 9:50am » |
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Yobaseo Otakuhouse,
1000 gomens for assuming there was a Japanese link to your name... Don't give up on oxygen therapy... Please see my PM to you.
I flew the F-9F8 Cougar, F-8H/J Crusaders and and F-4B/N/J/S Phantoms.
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Major_Headcase
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Re: O2 question
« Reply #39 on: Feb 22nd, 2008, 11:47am » |
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I'm an episodic, started getting CH's about 6-7 years ago at age 50. The usual treatment of a prednisone blast and verapamil worked well until this cycle. I have had to increase my verapamil dosage each year to get relief ... currently at 960mg/day. FINALLY found a neuro in town [been treated by GP's until now], he prescribed oxygen and it's been the proverbial two-edged sword for me.
O2 gives me immediate relief in about 7-10 minutes at 15lpm with a clustermasx. I stay on the O2 for another 5-8 minutes after the pain relief. I've only been using O2 for about 3 weeks, but results are mixed. About 1/2 the time it's gotten me PF with no re-attacks, but the other half of the time I get a 2nd and 3rd attack about an hour and a half or 2 hours later.
Worse, my pattern has shifted ... I've been fortunate so far in that my attacks had always come in the early evening hours - it varies from year to year and even within cycle, but usually between 6 pm and 10 pm. But since I've been using O2, I'm not getting hit in the evenings but after I fall asleep. This week the pattern has been 1:30am, again at 3:00am and again at 4:30 or so [=/- 15-20 minutes]. The lack of sleep totally trashed me and I couldn't make it into work a couple of days this week. [insert boss frowny face]
Of course, this is the week new neuro is out of town and his "gatekeeper" nurse tells me I just need to wait until he returns next Monday. Thank God for this forum! This topic has given me some new ammo in the fight ... the point about aborting the trigger is good; also trying some melatonin before bedtime, and smaller doses of imitrex if I have too use it. Batch's tip on going another 15 minutes at maybe 10lpm sounds promising ... I'll try that tonight and over the weekend.
I'm so pleased O2 kills the attack so quickly ... and I'm so pissed it comes back again [and again] and now interupts my sleep. Well ... mostly I guess I've been spoiled a bit by having been lucky with Verapamil working so well up to now (usually at 2 months into my cycle I'm PF and getting set to start tapering off the Verapamil - it's been two months today and still getting hit lots) and for having no middle-of-the-night attacks (well, 2 or 3 over the years, but they've been the exception). As always, I'll live through it ... I know from experience that the human animal can adapt to new levels of pain it never thought it could before.
New things to try always brings me HOPE and that's a big deal at this point.
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Major_Headcase
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Re: O2 question
« Reply #40 on: Feb 25th, 2008, 12:49pm » |
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Well ... it was better weekend for me. Batch's earlier comment that "Re-attacks eventually go away if you continue to use oxygen therapy effectively" seems to be holding true so far. I extended my O2 time and added a low dose of imitrex if I get a reattack.
I said my attack pattern had changed from early-mid evening to the wee hours and that it was leading to sleepless nights. Friday, Saturday and Sunday night it moved to times I can cope with ... first hit around 9pm to 9:30, reattacks about 2 hours later at 11 - 11:30 and 1 - 1:30 am [Friday only] ... plenty of time to recoup and still get enough sleep to be functional the next day. This morning I don't feel like a broom-beat dog and that's great!
Plus, since I wasn't asleep when the beast came aknockin', I was able to jump on the O2 before the hit got rolling and intensity and abort times were much lower. 
When the second reattacks hit on Sat & Sunday, I took a 25mg imitrex and that, I believe, prevented a third attack those nights.
So ... I'm thinking that continuing with the O2 is leading to somewhat of a return to my usual hit schedule, one I can live with and still do my job. I'll continue to extend my O2 times as I did this weekend (an extra 7-10 minutes at 15lpm after the pain is gone, and then 7-10 minutes at 10lpm). I'm hoping that as I continue this routine, I can get down to zero reattacks and only one hit per night. Or my cycle ends ... I'm at 2 months now and that's usually been about the time the Beast wanders off until next winter.
THANK YOU for the great info and encouragement!!
Keeping my fingers crossed, John
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| « Last Edit: Feb 25th, 2008, 12:51pm by Major_Headcase » |
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