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Title: O2 question Post by birdman on Jan 17th, 2008, 9:21am 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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Title: Re: O2 question Post by gizmo on Jan 17th, 2008, 9:38am 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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Title: Re: O2 question Post by DennisM1045 on Jan 18th, 2008, 10:10am 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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Title: Re: O2 question Post by nani on Jan 18th, 2008, 12:48pm 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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Title: Re: O2 question Post by thebbz on Jan 18th, 2008, 2:16pm 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. :o all the best thebb |
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Title: Re: O2 question Post by maryo on Jan 18th, 2008, 6:45pm 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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Title: Re: O2 question Post by Jonny on Jan 18th, 2008, 9:12pm on 01/17/08 at 09:38:08, gizmo wrote:
I would love to see a link that says anything close to that! |
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Title: Re: O2 question Post by Crappy on Jan 19th, 2008, 2:46am on 01/18/08 at 21:12:48, Jonny wrote:
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:
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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Title: Re: O2 question Post by wildhaus on Jan 19th, 2008, 3:50am on 01/17/08 at 09:38:08, gizmo wrote:
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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Title: Re: O2 question Post by gizmo on Jan 19th, 2008, 5:49am 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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Title: Re: O2 question Post by BMoneeTheMoneeMan on Jan 19th, 2008, 9:36am on 01/19/08 at 05:49:55, gizmo wrote:
Ding, Ding, Ding!!!! We have a winner!! Ohhhh, Jooooooonnnyyyyyyyyyyyy. U got your boots on? |
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Title: Re: O2 question Post by George_J on Jan 19th, 2008, 9:50am on 01/19/08 at 09:36:02, BMoneeTheMoneeMan wrote:
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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Title: Re: O2 question Post by gizmo on Jan 19th, 2008, 10:43am > 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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Title: Re: O2 question Post by Batch on Jan 19th, 2008, 11:20am 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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Title: Re: O2 question Post by Jonny on Jan 19th, 2008, 2:39pm Thanks Batch, not only for the info, but for your service to this country!! [smiley=bigguns.gif] |
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Title: Re: O2 question Post by wildhaus on Jan 19th, 2008, 3:46pm and to get to a higher flow, on way is - (as I have it set) http://im1.shutterfly.com/procserv/47b8df38b3127cceb45d0e06249600000025100AbMmbFu4YsWNA 2 tanks of 20lt. @ 200bar. http://im1.shutterfly.com/procserv/47b8df38b3127cceb45d0e0c249c00000026100AbMmbFu4YsWNA conected with a T conector and to the mask (I have a flowmeter and from there to the mask) http://im1.shutterfly.com/procserv/47b8df38b3127cceb45d0e08249800000025100AbMmbFu4YsWNA 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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Title: Re: O2 question Post by Crappy on Jan 19th, 2008, 5:56pm 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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Title: Re: O2 question Post by BMoneeTheMoneeMan on Jan 19th, 2008, 7:26pm 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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Title: Re: O2 question Post by Jonny on Jan 20th, 2008, 12:52am on 01/19/08 at 19:26:56, BMoneeTheMoneeMan wrote:
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! ;;D |
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Title: Re: O2 question Post by birdman on Jan 21st, 2008, 11:26am 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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Title: Re: O2 question Post by Batch on Jan 21st, 2008, 10:49pm 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. http://i105.photobucket.com/albums/m236/petebatch/westernreg.jpg 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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Title: Re: O2 question Post by Racer1_NC on Jan 21st, 2008, 11:17pm on 01/20/08 at 00:52:50, Jonny wrote:
It does....can't beat high flow O2! |
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Title: Re: O2 question Post by birdman on Jan 22nd, 2008, 9:29am 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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Title: Re: O2 question Post by maryo on Jan 22nd, 2008, 6:15pm 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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Title: Re: O2 question Post by Akash on Jan 22nd, 2008, 9:05pm 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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Title: Re: O2 question Post by Melissa on Jan 22nd, 2008, 9:57pm 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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Title: Re: O2 question Post by birdman on Jan 23rd, 2008, 8:41am 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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Title: Re: O2 question Post by Melissa on Jan 23rd, 2008, 8:44am 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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Title: Re: O2 question Post by birdman on Jan 23rd, 2008, 6:26pm 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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Title: Re: O2 question Post by Guiseppi on Jan 23rd, 2008, 6:41pm 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. ;;D And yes, Batch is the resident guru of 02! ;;D Guiseppi |
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Title: Re: O2 question Post by outofcommission on Jan 25th, 2008, 3:00am on 01/17/08 at 09:21:42, birdman wrote:
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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Title: Re: O2 question Post by outofcommission on Jan 25th, 2008, 3:21am 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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Title: Re: O2 question Post by Batch on Jan 26th, 2008, 12:49am 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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Title: Re: O2 question Post by Melissa on Jan 26th, 2008, 9:10am on 01/26/08 at 00:49:03, Batch 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. No biggie! |
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Title: Re: O2 question Post by DennisM1045 on Jan 26th, 2008, 2:23pm on 01/26/08 at 09:10:37, Melissa wrote:
It's memory loss Mel ;;D Way to clear the air and shed light into the dark corners of O2 FUD Batch! -Dennis- |
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Title: Re: O2 question Post by otakuhouse on Feb 6th, 2008, 7:24pm 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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Title: Re: O2 question Post by Batch on Feb 6th, 2008, 10:06pm 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 Batch |
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Title: o2 question Post by otakuhouse on Feb 6th, 2008, 11:13pm 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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Title: Re: O2 question Post by Batch on Feb 7th, 2008, 9:50am 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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Title: Re: O2 question Post by Major_Headcase on Feb 22nd, 2008, 11:47am 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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Title: Re: O2 question Post by Major_Headcase on Feb 25th, 2008, 12:49pm 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. 8) 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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