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Topic: O2 Rebounds? (Read 707 times) |
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kimmiedawn81
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O2 Rebounds?
« on: Sep 7th, 2007, 1:20pm » |
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Ok, the oxygen finally worked for me last night but I had two more hits after that. I just felt like it brought on more headaches. Has anyone else ever felt like that?
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DennisM1045
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Re: O2 Rebounds?
« Reply #1 on: Sep 7th, 2007, 2:26pm » |
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I often find that the beast tries to return after a successful abort on O2. I just hit it again. Usually the 2nd try kills it for a while. It could be that I'm not staying on long enough. I use a hard 15 min cap. Keep trying.
-Dennis-
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nani
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Re: O2 Rebounds?
« Reply #2 on: Sep 7th, 2007, 2:49pm » |
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on Sep 7th, 2007, 2:26pm, DennisM1045 wrote:| It could be that I'm not staying on long enough. I use a hard 15 min cap. |
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Too much O2 hurts me, so this is what I do: I start with a full 15lpm...as soon as I feel it starting to back off, I lower it to 11lpm, then 7lpm. I think it allows me to continue to breathe without discomfort, and stay on a bit longer than I could otherwise.
I've heard people wonder about this, Kim. I've also seen the suggestion that you stay on the O2 for a few minutes longer. Try lowering the flow as things get better, and stay on a bit after it's gone.
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kimmiedawn81
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Re: O2 Rebounds?
« Reply #3 on: Sep 7th, 2007, 2:53pm » |
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I did stay on it a few minutes longer. The best combo for me is o2 and trex. That takes the hits away quicker than anything.
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barry_sword
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Re: O2 Rebounds?
« Reply #4 on: Sep 7th, 2007, 5:31pm » |
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I can't tell as this is my first cycle using o2 and this is a very strange cycle this time.
I do agree about staying on it for a few minutes after the hit is settled down but I stay on the 15 lpm flow ratethe whole time. This works for me.
I hope you find what works for you soon. Sorry I am not much help.
Barry
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ski2k
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Re: O2 Rebounds?
« Reply #5 on: Sep 7th, 2007, 11:44pm » |
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I'm kinda a little different... I try 10lpm at first, and if it continues getting worse after about 5 minutes, then I turn it up to 15, then back down a bit as things seem to get better.
I agree with staying on it a little while after the beast seems to leave. I usually, like Nani, turn it down to 7lpm or so, and sit there for an extra 5 min, or so. I try not to stay on it for more than 20 min at any one time, as I've heard from a lot of people, if it doesn't work by then, it probably won't for that hit. Try again next hit. I too have noticed if I try to "rush it", and go off it too soon, the beast comes right back. Usually within 30 minutes for me, but taking my time and letting it do it's job, I usually don't get hit again. (well... not for a while, that is...)
Good luck, and PFDAN
Adam
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mcf69
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Re: O2 Rebounds?
« Reply #6 on: Sep 7th, 2007, 11:55pm » |
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In my experience I've learned to stay on it a bit longer at a reduced flowrate, then if i get a second hit, I put it back on and take a shot of trex, that usually does it...
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Batch
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Re: O2 Rebounds?
« Reply #7 on: Sep 13th, 2007, 12:33pm » |
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Kimmie,
I don’t think the term “rebound” used in this situation is correct. It’s not quite the same thing as taking too much of a prescribed medication. After all, we’ve all been addicted to oxygen since we were conceived, and we’ll continue to be so until we assume room temperature. Re-Attack, may be more appropriate.
What some of us feel is really happening here, is that the oxygen induced vasoconstriction, which stopped the pain, has only aborted the symptom. We see vasodilation as a symptom of the attack, not the triggering mechanism. Therefore, when we breathe oxygen and induce vasoconstriction in and around the trigeminal nerve, in reality, we are only aborting the most obvious symptom of a cluster headache attack, pain, and not the actual triggering mechanism. If the triggering mechanism is still present, or strong enough, it will override the vasoconstriction, within a few minutes after stopping the oxygen therapy, the vascular structures will begin to dilate, and the pain will return.
We know from the experts in this field that the hypothalamus plays a central role in this illness, but actual triggering mechanisms that result in the attack are not yet understood.
Please discuss the following with your doctor before trying:
As imitrex is the only FDA approved abortive medication for cluster headaches, you may want to consider combining your O2 therapy with imitrex. Most of us gave up on imitrex tablets as they were too slow in aborting CH attacks. With good O2 therapy at the highest flow rate possible 15-25 LPM or higher with a demand valve, many of us are able to abort an attack much faster than with imitrex subcutaneous injections or nasal spray. As the dose of these two forms of imitrex is usually 5 to 6 mg. and the tablets are either 25 or 50 mg. the tablets carry more of the vasoconstrictor abortive and as the half life of imitrex is 2 hours, the tablets should provide continued relief from further attacks for at least that long even when you are in "High Cycle."
Accordingly, what I and a few others have done is talk with our doctors and use the following procedure:
At the onset of an attack (assuming we're awake) take a 25 mg. imitrex tab (I ask for an Rx for the 50 mg. tabs and use a pill splitter to cut them into two 25 mg. doses as this is more cost effective), then start the O2 therapy. If you've done it right you should be able to abort the attack anywhere between 5 minutes for a low Kip level attack <5 and 15-20 minutes for a high Kip level attack at 7 or above.
As I indicated earlier and others have said the same thing, should the pain return in 5 to 15 minutes, restart the O2 therapy asap. Once you've aborted this re-attack, and if you've taken the 25 mg. imitrex tablet, you should remain PF for at least 2 hours when you next regularly scheduled attack hits.
If the beast comes a calling while you are sleeping and you're in high cycle, chances are you will be ramping up rapidly to Kip 6-7 or above rapidly when you wake up enough to realize what's happening. If that happens, start the high flow rate O2 therapy at 15-25 LPM asap (25 LPM is MUCH better if you have a 0-25 LPM regulator). If you've planned properly, your imitrex and red bull should be handy. Now you are faced with the choice of a faster abort but higher probability of a re-attack by using the imitrex nasal spray or subcutaneous injection, OR a longer abort time but with a longer time to the next hit by taking a 25 mg. tablet. That's a tough choice at times...
Again, we are all wired differently, and medications like imitrex work differently on each of us. Having said that, the latest study we just completed using Very High Fow Fate O2 Therapy using a 0-25 LPM O2 Regulator at its 25 LPM setting, and a Demand Valve capable of 60 LPM have consistently given us a very high success rates in aborting attacks at all levels up to Kip 9 (none of us had a Kip 10 hit). We will have more info on this study in the weeks to come. If you've not already done so visit the OUCH O2 User's support Team web page at:
http://www.ouch-us.org/medications/oxygen/o2info.shtml
and pull down the "Supplemental User's Guide for O2 under the "O2 Information" link. You can also download the guide with the following link:
http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf
We've been compiling a lot of new information on oxygen therapy and will be posting it on this page. There is also a link where you can let us know your questions or feed back how we're doing by clicking on the "Questions and Feedback: link or going directly to that page at the following link:
http://www.ouch-us.org/medications/oxygen/o2comment.htm
We try to reply to all questions or comments within 24 hours.
I hope this helps and take care.
Batch
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| « Last Edit: Sep 13th, 2007, 12:36pm by Batch » |
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Kevin_M
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Re: O2 Rebounds?
« Reply #8 on: Sep 13th, 2007, 1:05pm » |
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Thanks for being here, Batch.
on Sep 13th, 2007, 12:33pm, Batch wrote:| If the triggering mechanism is still present, or strong enough, it will override the vasoconstriction, within a few minutes after stopping the oxygen therapy, the vascular structures will begin to dilate, and the pain will return. |
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What it feels like is happening. Nicely explained.
Quote:| you should remain PF for at least 2 hours when you next regularly scheduled attack hits. |
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On a different tangent, chucking in preventive measures as otherly desirable, too.
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seasonalboomer
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Re: O2 Rebounds?
« Reply #9 on: Sep 13th, 2007, 1:12pm » |
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I've never considered it as the oxygen being the trigger for the additional hits. I find "the beast" metaphor is best and feel as though there are times (especially middle of the night hits) when the O2 only stuns the beast temporarily. He then gets up after shaking it off for another attack. Eventually, always, I win. Screw the beast!
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Tom_Thumb
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Re: O2 Rebounds?
« Reply #10 on: Sep 13th, 2007, 2:25pm » |
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Wow after reading all the input .I also have a problem . I have been on o2 for 9 weeks now . I am on the # 22 bottle (big ones) I also have alot of the reattack . I use the imitrex injection also . I must be staying on the 02 way to much after the hit about 20 to 30 min. at 20 to 30 . I can not shake this cycle I GET HIT EVERY TWO TO THREE HOURS . This is week nine . So saying all that you might want to watch how you use o2 if you are having alot of rebounds . Well here I go again hit # 5 for today
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Batch
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Re: O2 Rebounds?
« Reply #11 on: Sep 13th, 2007, 4:42pm » |
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Tom,
Having the beast come a calling every 2 to 3 hours is pretty much standard when you are in a high cycle for episodics or chronics. That is unless you're ClusterChuck. High cycle for him is 20+ attacks in a 24 hour period.
My last post deals only with the abortive effects of Oxygen Therapy... and that it can be combined safely with imitrex or other trex derivitives.
Remember, 2 to 3 hours PF between hits can be heaven on earth... learn to enjoy times like that.
Go see your doc or neurologist to find the right medication or combination of preventatives... Having a doc that is willing to work with you in order to fine the right medication or combination of preventative medications is the secret to success.
The only other thought here is, there is no such thing as a free lunch when it comes to any medication other than Oxygen. They all carry one or more side effect... In some cases the side effects get down right pesky and leave you in worse shape than if you'd never taken them.
Make sure you read through all the material the pharmacists give you with your medication and learn to recognize the side effects.
Good luck and max PF time to you.
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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Batch
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Re: O2 Rebounds? hy
« Reply #12 on: Sep 13th, 2007, 5:34pm » |
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Tom,
Doh!!! I forgot to ask what flow rate you are using? If you've an M size cylinder with the nut & nipple regulator attachment, most of these regulators have a plastic tube on them calibrated for O2 flow rates from 0 up to 15 LPM with a little silver bead.
If you have a regulator like this, the flow valve can be open further to increase the flow rate beyond 15 LPM. I'm not suggesting or recommending you do this mind you...
There will be times during high cycle when even Oxygen Therapy has a hard time taming the beast... specially at 15 LPM where an abort can take upwards of 30 minutes at Kip 7 and above... In these cases, I go for 25 to 30 LPM and it can cut the abort time in half or more...
Here's how it works:
DO NOT TRY THIS WITHOUT FIRST SEEING YOUR DOCTOR, NEUROLOGIST, OR CARDIOLOGIST AND DISCUSSING THE FOLLOWING WITH HIM, HER, OR THEM!
Another aspect of oxygen therapy that we are beginning to understand better is the practice of aborting cluster headache attacks with hyperventilation. Now, in a pinch, when no oxygen is available, just hyperventilating on ambient air can reduce the intensity of an attack, or with luck, even abort it quicker than letting it run its course.
Naturally hyperventilating on 100% O2 is much more effective than hyperventilating on air. Now I know many of you will think that hyperventilation is bad, that it should be avoided, and that at this point, that those of us who do it are crazy as bed bugs. What I am here to tell you, is that we think breathing rapidly and deeply until we feel the symptoms of hyperventilation is actually beneficial for short periods of time, and that it actually reduces the time to abort a cluster headache attack.
Many of us who use a 0-25 LPM regulator at 25 LPM, or higher with a demand valve during an attack, find it actually works very well and usually cuts the abort times in half when compared to 15 LPM.
What is happening when you hyperventilate is that you reduce the level of carbon dioxide in your lungs faster than normal, and this causes the CO2 in the blood stream to flow into the lungs faster than the body is generating it. As CO2 becomes a weak acid when dissolved in the blood, removing it faster than it is being generated, lowers the acid content and this shifts the acid-base equilibrium towards the alkaline side of the equation, raising the pH level of your blood stream. This is also called alkalosis. And, as we induced this condition by hyperventilating, it is called respiratory alkalosis, or by even another name, hypocapnia (lower than normal level of CO2 in the lungs and bloodstream). It just so happens that hypocapnia acts as a cerebral vasoconstrictor and it causes the cerebral vascular structures in and around your trigeminal nerve to constrict back to normal…
So where are we... We know Oxygen inhaled in high concentrations acts as a vasoconstrictor. This condition is called hyperoxia (more oxygen in our lungs and bloodstream than normal). Now if we add another vasoconstrictor, hypocapnia, by hyperventilating on 100% O2, we are doubling the vasoconstrictor effects, shrinking the vascular bodies in and around the trigeminal nerve at a faster rate... and this gives us the ability to abort our attacks in less time...
ONCE AGAIN *** DO NOT TRY THIS WITHOUT SEEING YOUR DOCTOR FIRST AND GET A GOOD SET OF CARDIOPULMONARY AND RENAL FUNCTION TESTS. ***
I might add that I see my neurologist monthly and I also get a complete battery of blood chemistry tests every month as well...
You'll also need a 0-25 LPM regulator or a Demand Valve to get a flow rate high enough to support hyperventilation on 100% O2... Remember, O2 has nothing to do with hypocapnia... You can hyperventilate on air.
We'll be publishing all this on the OUCH web site in the O2 User's Support Team pages in a week or two... We need to get a sanity check on the procedure for Very High Flow Rate Oxygen Therapy for Cluster Headaches from a team of international Neurologists, Physicians, and Respiratory Physiologist first...
Finally, thousands of Navy and Marine Corps pilots are flying on 100% oxygen every day. And I for one, can tell you that during air to air, or air to ground training flights, or when the bad guys are tossing everything but the kitchen sink including SAM missiles and AAA (anti-aircraft artillery) at you in actual combat, sucking down 100% oxygen at a flow rate of 60 liters/minute is easy... I've got over 3000 hours flight time and too many missions over North Viet Nam that all ended with a day or night carrier arrested landing to count... I'm still here....
Take care, and keep on sucking 100% O2 to abort your cluster headache attacks. Just do it smarter.
V/R, Batch
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| « Last Edit: Sep 13th, 2007, 6:05pm by 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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Chillrmn1
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on Sep 13th, 2007, 12:33pm, Batch wrote:| What some of us feel is really happening here, is that the oxygen induced vasoconstriction, which stopped the pain, has only aborted the symptom. We see vasodilation as a symptom of the attack, not the triggering mechanism. Therefore, when we breathe oxygen and induce vasoconstriction in and around the trigeminal nerve, in reality, we are only aborting the most obvious symptom of a cluster headache attack, pain, and not the actual triggering mechanism. |
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Batch,
Excellent explanation. Never believed O2 caused recurrent attacks, just that it wasn't able to entirely stop all the processes involved in the manifestation of an attack.
Again, excellent explanation.
Bob
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lorac
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Re: O2 Rebounds?
« Reply #14 on: Sep 14th, 2007, 8:18am » |
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Batch YOU ARE THE GREATEST! Thanks for all the info. LORAC
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Tom_Thumb
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Re: O2 Rebounds?
« Reply #15 on: Sep 14th, 2007, 11:51am » |
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BATCH YOU ARE MY HERO !!! Thanks for all of the input . I am sure you are there for us .Taking the time for all for info was so wonderful. Thank You very much .
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Guiseppi
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Re: O2 Rebounds?
« Reply #16 on: Sep 14th, 2007, 6:06pm » |
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I'm also one of the minority in that the CH returns within 20 mnutes of shutting the 02 down. I tried staying on 02 for 20 minutes after pain was gone, weaning down slowly, no matter what I tried I got slammed 20 minutes after the 02 stopped.
Now when a CH starts I pop an oral cafergot.....an old school ch med that never used to work for me cuz it took too long to go from my tummy to my brain!....then I fire off the 02. The 02 beats it down in less then 10 minutes, usually closer to 6-8 minutes, the cafergot seems to keep it away.
I use imitrex very rarely, it's extremely effective but expensive and I HATE the snakes crawling up my back feeling! The cafergot is very cheap and the only side effect I get is I get wired, like a double espresso from Starbucks wired. Might be worth a shot.
Guiseppi
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Batch
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Re: O2 Rebounds?
« Reply #17 on: Sep 14th, 2007, 8:13pm » |
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Guiseppi,
Excellent suggestion... A variation on the One-Two Punch with O2 and Imitrex, but more cost effective with fewer side effects. I like that. Good on you for sharing that with us.
When you find the time. Tell us more about your demand valve. How you got it. What your doc thinks about it. If yon use more or less O2. Things like that. You appear to have more experience than most in using a demand valve, so must have a few other ticks up your sleeve.
Thanks again.
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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Guiseppi
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Re: O2 Rebounds?
« Reply #18 on: Sep 15th, 2007, 6:14pm » |
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The demand valve I use is an old paramedic rig. I took the mask off of it and draw straight off the stone. The biggest advantage for me is when I'm getting hit I'm a deep breathe and hold kinda guy. I empty my lungs to the point I wanna cough, then inhale until I feel like I'm gonna pop, then I hold it for 30-45 seconds, then repeat.
With a continuos flow valve, I'd be aerating my living room with oxygen for 45 seconds at a time. Now when I'm not breathing, no air is flowing. With an e-tank, I average about 200 pounds to abort a headache.
A quick side note........on another thread Bob Johnson wrote that the majority of the medication in cafergot is destroyed by stomach acid. (I assume that's the ergotamine...sp?....leaving mostly just caffeine) I use cafergot in combo with my 02 to keep my CH from coming back. Anyone use just caffeine in combo with 02? Next cycle I may try just an espresso when I start the 02 just to see how it stacks up to my cafergot........one less med I'll have to take!!!! 
Guiseppi
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DennisM1045
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Re: O2 Rebounds?
« Reply #19 on: Sep 16th, 2007, 7:52am » |
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I use energy drinks with O2 so I think the principal is the same. I also think that the liquid gets into your system faster than a pill would. The one I use is Rock Star; 80mg Caffeine, 1000mg Taurine and a whole bunch of other stuff. They really hold the beast off for me after the O2 is shut off.
-Dennis-
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| « Last Edit: Sep 16th, 2007, 7:53am by DennisM1045 » |
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tommyD
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Re: O2 Rebounds?
« Reply #20 on: Sep 16th, 2007, 8:56am » |
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O2 therapy also works well in combination with the clusterbusters method. O2 is the abortive of choice since it doesn't interfere with the 'buster treatment the way triptans, steroids and other cluster meds do. So of course O2 is also good during detox when preparing for the 'buster treatment.
There are only a few reports so far, but it seems Taurine drinks don't interfere with clusterbusters.
And folks often report that O2 therapy seems to work better than usual when using it to abort the break-throughs and slap-back attacks you can get during clusterbuster treatments.
-tommyD
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southwalessunshine
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Re: O2 Rebounds?
« Reply #21 on: Sep 18th, 2007, 1:34pm » |
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I too take a Red Bull and 2 caffeine tablets then suck on the 02. It's till pretty much hit and miss with me with the 02 but I'm still trying to get along with it. My problem is that I'm not sure it's working. Also I have a huge problem I need to get over with the whole being tied to it thing. I hate the fact that i have to sit there for at least 20 mins, sometimes alot longer if I go for a set of 3 to ensure it's gonna work or not work. I know it sounds silly, and I feel like a kid having a tantrum, but the cylinder encapsulates the whole CH thing for me and I have a massive barrier there. I have time to think of what is happening to meand I can hear my family downstairs going about life and i'm stuck upstairs alone thinking about CH. I know I have to get over it and get a grip, but I can't quite do it just yet. Does anyone else struggle with 02 in this way, it would be really helpful if any of you have and have any suggestions on how to get past it. i really want it to work but feel I need a little encouragement. Thanks in advance x
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