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Title: 02 Preventative? Post by Jonny on Apr 30th, 2008, 9:33pm Ok, so im reaching here.....Lots of us meet the beast an hour or so after we fall asleep. What if we pump up for five minutes on the 02 before we go to bed.......kind of saturate the brain with 02 before its needed. Like I said....im reaching.....its been a bad week! Any thoughts....(Batch) |
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Title: Re: 02 Preventative? Post by BMoneeTheMoneeMan on Apr 30th, 2008, 9:37pm I heard a few people say they sleep with the nose cannules in at about 2 to 4 lpm and it seems to help. I havent tried it. |
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Title: Re: 02 Preventative? Post by Brew on Apr 30th, 2008, 9:42pm My thought is this: As soon as you get off the gas, blood oxygen levels begin to drop back to normal. I don't know how long this takes, but I can't imagine it would be more than about 10 minutes. Now, if we could design a CPAP machine that had a pulse/ox monitor built in, also hooked up to an O2 tank so that it would begin to infuse O2 as the pulse/ox level decreased (after falling asleep), we might be on to something. In other words, start getting pure O2 pumped in while we're sleeping, we might be able to avert the nighttime hits. |
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Title: Re: 02 Preventative? Post by Jonny on Apr 30th, 2008, 9:55pm on 04/30/08 at 21:42:45, Brew wrote:
If thats the case why would folks be PF for hours after the first hit , if not the whole night? I guess 02 is like any other abort, eh! |
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Title: Re: 02 Preventative? Post by Brew on Apr 30th, 2008, 10:08pm on 04/30/08 at 21:55:36, Jonny wrote:
Nobody knows how long an aborted hit would have lasted if it hadn't been aborted. I do know that blood oxygen saturation drops as soon as you get off the O2. I'm hoping someone comes along who know more about it than I do, but I get the sense that some kind of biochemical switch is turned on when we start to get hit. The introduction of O2 helps to turn that biochemical tide the other way and eventually flips the switch off. To introduce it before the switch gets flipped on would be kind of pointless. Just my non-medical opinion, and like I said, I would certainly like to hear what others have to say. |
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Title: Re: 02 Preventative? Post by Jonny on Apr 30th, 2008, 10:16pm on 04/30/08 at 22:08:17, Brew wrote:
Thats why I posted this, bro! Im out of prevents, aborts....the only thing I have is 02 and im reaching. |
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Title: Re: 02 Preventative? Post by Brew on Apr 30th, 2008, 10:18pm on 04/30/08 at 22:16:02, Jonny wrote:
Out, as in you don't have any more? Or they're not working anymore? If it's the first one, that's easily fixed. Just say the word. Via PM, obviously. |
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Title: Re: 02 Preventative? Post by DennisM1045 on Apr 30th, 2008, 10:19pm on 04/30/08 at 22:08:17, Brew wrote:
I think you have the right of it Brew. O2 saturation levels have nothing to do with the cause. They help reverse the effects by causing vasoconstriction taking blood away from the vessels in the brain. If the attack was going to be a long one, reattacks are likely. You can only stave off the effects. The underlying cause is still in effect as long as it would have been. I'm on and off the tank several times before a big one passes. The actual duration of the triggering mechanism doesn't seem affected by the O2. Just mitigated. So Jonny, if you were to get up 5 minutes before a hit started and get on, you might never feel the pain. IMO, sucking O2 before going to bed won't do it. It'll cost you little to give it a shot though. Let us know how you make out. PF vibes to you for a PF night. -Dennis- |
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Title: Re: 02 Preventative? Post by stevegeebe on Apr 30th, 2008, 10:53pm Interesting angle. The toggle/switch has to be stopped at a certain point or it becomes a run away train..at least for me. I try to rationalize that if I stay with it a little longer it will go away. Making deals along to way has not worked either. The premise that it might act as a preventative would appear to be built on an assumption that lower O2 levels initiate the onset of an attack. If true, is there more here? Somebody invent a slow release O2 pill. Steve G |
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Title: Re: 02 Preventative? Post by Redd on Apr 30th, 2008, 11:08pm I too mentioned a few years back about enriching a CPAP with additional O2 as a possible preventive. Not so much O2 as to end up gettng "too" concentrated. Maybe enough to increase by 2-4% as a baseline and work up from there. |
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Title: Re: 02 Preventative? Post by Brew on Apr 30th, 2008, 11:17pm The more I think about this, the more I like the idea of a variable flow rate of O2 based on a direct, constant monitor of pulse/ox levels. You know that little clothespin-like thingy they put on your finger to monitor it? You could have one clip on your earlobe, attach it to the CPAP headstrap, and have the O2 regulator increase or decrease based on your levels. All the while you've got a constant flow of pressurized room air blowing up your nose so you don't suffocate. The air that gets pumped up your face simply fluctuates in its O2 concentration based on your need. I know this doesn't help Jonny right now, but I wish it did. Any inventors out there? |
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Title: Re: 02 Preventative? Post by George_J on Apr 30th, 2008, 11:26pm Dammit. I wish I had something useful to add here. >:( If it's nighttime hits that are running you ragged, bro, have you tried melatonin? It's not 100 percent for me, but it cuts down on the number of them that I get. I don't recall whether you've tried it or not, but I wouldn't be without it. Best wishes, George |
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Title: Re: 02 Preventative? Post by Batch on May 1st, 2008, 2:21am Jonny, Great question and I’m sorry to be so late in weighing in on this thread. I didn't realize you were having problems. The answer is yes, I do think oxygen can be used as a preventative, but not quite the way you proposed it. Hyperoxia from breathing 100% oxygen only lasts a few minutes after you stop the oxygen therapy. Having said that, there are a number of other factors that need to be considered that may be helpful in reducing the incidence of attacks while sleeping. This will get a bit long winded so please bear with me. A good number of us get whacked by the beast an hour or so after we fall asleep. These hits can be among the worst as they get a head start on us before we’re fully awake and able to start oxygen therapy. My thinking on the reason for this phenomena is very basic so shouldn't be too difficult to follow... An hour or so after we fall asleep we should be close to REM (Rapid Eye Movement) sleep or the deepest form of sleep. At that point our respiration rate is also at it's lowest. That means the oxygen level is low and the level of CO2 in the blood stream is at its highest. The physiological terms for this condition are respiratory acidosis (low pH) and hypercapnia (more CO2 than normal and CO2 hydrolyses in the blood stream to carbonic acid so lowers the pH). No matter what you want to call this condition it serves as a vasodilator and that makes us more susceptible to the triggering mechanism that starts a cluster headache attack. Here's my hypothesis... Acidosis is a vasodilator and as such, makes us more susceptible to cluster headache attacks. By raising the arterial bloodstream pH above neutral (pH =7.4) to say 7.6 to 7.8, we will experience a reduction in the frequency and intensity of our cluster headache attacks... And, if we do have an attack with an elevated pH, the attack will be easy to abort with oxygen therapy or imitrex. If my hypothesis is valid, there are a few things you can try to prove it for all of us. 1. Read the section “Test Your Body's Acidity or Alkalinity with pH Strips” in the following link: http://www.a-better-way.com/naturalhealthschool/acid-alkaline.html 2. Acidosis, no matter how it comes about, is measurable. Drugstores have the pH strips discussed in the acid-alkaline link and you can use them to test your saliva and urine (use two strips). An arterial pH reading would provide a more reliable indication of pH, but this is hard to do if you're not in a clinical environment. If your pH is lower than the ranges listed in the link above, you’re in acidosis. Try to take the pH readings before you go to bed and as soon as you can after the beast wakes you up. Try to get a pH reading during the rest of your cluster headache attacks as well. If the pH reading is low while you’re getting hit, you’re starting to prove my hypothesis. 3. Follow the suggested dietary guide in the acid-alkaline balance link above to raise your pH to at least 7.5 or a little higher at bedtime. This will likely take a few days so don’t expect a big change in pH right away. I would also get some magnesium supplement tablets and follow the suggested dosage. Magnesium should help raise your pH levels to a more alkaline level. In a pinch, Centrum Silver multivitamin/multimineral supplement contains magnesium and calcium. 4. While you’re at the drugstore, pick up a bottle of saline nasal spray. I get it at the dispensary over at Navy Bethesda. The spray bottle says 0.65% saline solution. I rinse both sides with several sprays then blow my nose until it feels clear. Residual nasal spray will concentrate as it starts to evaporate and this will help shrink the nasal membranes. I also use the “Breathe Right strips.” These two steps will help you breathe more easily while sleeping and help maintain a higher tidal flow of air into your lungs. This should help keep the oxygen levels a bit higher and the CO2 levels lower. 5. Now for the easy part that involves oxygen… Find a nasal cannula like the one you tossed out years ago. Start the oxygen at 3 to 5 liters/minute with the nasal cannula when you go to bed. You may need to adjust the flow rate up or down for comfort. As always… Take care, V/R, Batch |
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Title: Re: 02 Preventative? Post by AussieBrian on May 1st, 2008, 2:40am I wish I could help more on this but my sole addition is a reminder never to sleep while using a re-breather mask. |
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Title: Re: 02 Preventative? Post by ClusterChuck on May 1st, 2008, 2:55am on 04/30/08 at 21:33:01, Jonny wrote:
Hmmm, Jonny, sorry you are getting nailed again! Hang in there bro, as I know you will! As to your theory, I am not sure it would hold much water. I usually do not go to bed, until I get my late evening hit. I suck on that O2 till the hit is gone, and then a few minutes more, and then go to bed. I still wake up, to fulfill my dance card commitment, within 45 minutes to an hour later. on 04/30/08 at 23:17:05, Brew wrote:
The only problem with this idea, according to what I have heard, your blood/oxygen levels have nothing to do with getting hit. It is the dilation (expanding) of the veins that press on the hypothalamus that cause the pain, as it travels to the nerves. The oxygen constricts (shrinks) the veins down to get the pressure off the hypothalymagigy ... So monitoring the blood/oxygen levels would not help at all. At least to my understanding of it. I could be wrong. I was wrong once before: I thought I was wrong, but I wasn't, so I was wrong, in my thought. I guess I could be wrong a second time ... Chuck |
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Title: Re: 02 Preventative? Post by LeeS on May 1st, 2008, 7:17am Hey Jonny I have tried O2 a as preventative for my first REM night time hits and it has worked for me (I think, you can never be sure), but not always. I stay on the O2 for 15-20 minutes before sleep though; but careful you don't nod off without switching it off – irrespective of the safety issue, it's an annoying waste of medication. However, I've only tried it when I'm pretty certain I'm going to get hit; if I've been shadowing before bedtime for instance. As I said, it seems to work for about 50% of occasions, but you never know if you were going to get hit anyway. My theory was that O2 may stave off the release of calcitonin gene related peptide (CGRP), which is thought to be part of the central mechanism involved in triggering an attack. Interestingly, CGRP levels are brought back to normal following the acute treatment of both O2 therapy and with triptans, and I know of some sufferers who have used Frovatriptan or Imitrex before bed with similar short-term prophylactic results. Whether or not O2 and the triptans hold back the release of CGRP I've no idea. Goadsby started a clinical trial on this (O2 as a preventative) a couple of years ago, involving a 20 minute burst of O2 prior to a triggered hit with GTN; but unfortunately I believe it has been shelved and no results have been released. All the best with it if you give it a go and I hope you get a break. -Lee |
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Title: Re: 02 Preventative? Post by BarbaraD on May 1st, 2008, 8:09am on 04/30/08 at 22:18:18, Brew wrote:
You didn't answer the question kiddo --- Let Mom know something (PM or otherwise) |
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Title: Re: 02 Preventative? Post by swimchica623 on May 1st, 2008, 10:17am I've used O2 as a prevent before, using Batch's advice for sleeping with a few liters. It seemed to prevent about 1/2 to 2/3 of night hits (although I can't say why). I was pleased with the results at night so I decided to use it when the afternoon got especially bad for a few hours, and I had similar results. One night I decided to see if it did not work and I was tired of sleeping with it, and got hit every hour again. I only use it as a prevent when things get really miserable because you can go through O2 fast that way. Might want to make sure you have the O2 humidified if you do this too, it can make your nose really uncomfortable. Lisa |
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Title: Re: 02 Preventative? Post by Batch on May 1st, 2008, 11:33am Jonny There you go... Lisa hit the nail on the head with with a very well worded response on the use of oxygen as a preventative. It's hard to argue with the voice of experience. Well done Lisa. I still think the acid-alkaline balance factor needs to be addressed. Michael and I will have more on this shortly. Take Care, V/R, Batch |
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Title: Re: 02 Preventative? Post by Rosybabe on May 1st, 2008, 12:15pm Jonny I don't know what to say :(...just huge pain free vibes for you.... |
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Title: Re: 02 Preventative? Post by Jonny on May 1st, 2008, 7:50pm I want to thank you all for your input! Well, my thought on 02 as a preventative was bust. Sucked on it for ten minutes and still was hit an hour in. Four times in all last night.....After a week of this I walked out the door this morning like a zombie. By one PM I had had enough and came home (Perk of owning the company) to sleep three glorious hours (Was even afraid to try that). Seeing that I didnt need to take Lithium when I became episodic (It does nothing without Verap) I have a years supply (Stockpile) ....and I was able to score a couple weeks of Verap, I will be sucking those down until my neuro appt. Thank you all for the PM's of offers to help and support! Oh, and Batch......This quote of yours below gave me the first belly laugh this week....Thanks! ;;D on 05/01/08 at 02:21:02, Batch wrote:
You all are the best!!!! [smiley=bow.gif] |
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Title: Re: 02 Preventative? Post by barry_sword on May 1st, 2008, 8:18pm Sorry Bro! :'( |
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Title: Re: 02 Preventative? Post by Jonny on May 1st, 2008, 9:22pm on 05/01/08 at 20:18:23, barry_sword wrote:
Thanks, Barry......I dont think im cut out for this episodic shit! Was so much easier being chronic beleive it or not. I think I might have to buy a mountain bike to keep me sane! ;) |
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Title: Re: 02 Preventative? Post by barry_sword on May 1st, 2008, 9:39pm Jonny, I wish I could help in some way right now. This hurts. Damn this thing!!!!!! >:( Your friend Barry ;) |
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Title: Re: 02 Preventative? Post by jon019 on May 1st, 2008, 10:10pm Jonny, Nice effort bro'. Thanks for posting. Reminds me of a Luis Tiant changeup. Might just work and definitely worth the try. Thinking of you, cursing the beast.... Regards, Jon |
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Title: Re: 02 Preventative? Post by Kevin_M on May 1st, 2008, 10:47pm on 05/01/08 at 19:50:58, Jonny wrote:
Life in the unprevented lane, a very tough route. Keep that seat belt on 'til you get to the appointment. You remind me of that soldier that left the patrol boat to pick mangos in "Apocalyse Now". He comes face to face with a tiger then gets back to the boat muttering, never leave the boat, never leave the boat. Never run out of verap, buddy. Best to ya, hang in. |
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Title: Re: 02 Preventative? Post by Annette on May 3rd, 2008, 7:33pm on 05/01/08 at 02:21:02, Batch wrote:
Hi Pete, Thank you for posting your hypothesis which is very interesting. However, I have a few questions to ask of you though. 1- Arterial pH of 7.6 or more is considered dangerous to health, at that level the person can be delirious, having muscular jerks or even seizures as well as increased risk of angina and possible coronary infarction. In hospital, patients with arterial pH of 7.6 or more are treated urgently with haemofiltration or haemodialysis. http://www.merck.com/mmpe/sec12/ch157/ch157d.html 2- Metabolic alkalosis with pH more than 7.44 can only be maintained long term ( more than 6 hours ) when the kidneys have been compromised, with impairment of HCO3 excretion, otherwise the body antidiuretic system will kick in and compensation will occur. On top of that, respiratory rate will automatically slow down to induce respiratory acidosis to neutralise the pH. You cant maintain a very high arterial pH naturally in a healthy body. http://en.wikipedia.org/wiki/Metabolic_alkalosis 3- In vivo and in vitro, experiment on rats and rabbits cerebral blood flow indicate that metabolic alkalosis needs to be at least at pH 7.5 to have any vasoconstricting effect. In fact, pH needs to be as high as 7.8 to achieve vasoconstriction of all the smooth muscle cells in the arterial wall. However, at this level the person would be severely ill. pH 8 or higher can cause death. http://ajpheart.physiology.org/cgi/content/full/283/6/H2169 4- Testing arterial pH level through saliva and urine test strips are not very accurate. Their accuracy level is between 0.2 and 0.5. Testing the urine will give you the urine pH, not arterial pH and therefore is often a lot more acidic. Testing saliva will give you the saliva pH, not arterial pH either. It is used only as an indication, there isnt a formula that you can use to convert these numbers to an arterial reading. To get accurate arterial pH level one has to do blood gas ie take blood from your artery and send it to the lab. There are many factors that can affect the pH levels of urine or saliva, including renal function, physical activities, food, drinks and even food stuck in between your teeth and skin contamination. You have to read the value by looking at the colour change and depending on your eyesight and whether or not you may have colour blindness this can greatly affect what number you come up with. http://www.indigo.com/test-strips/gph-test-strips/ph-paper-5.5-8.html Therefore I am not quite sure how we can implement/test your theory in practice? I would be grateful if you can help with further information. Thanks and all the best wishes. |
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Title: Re: 02 Preventative? Post by BMoneeTheMoneeMan on May 4th, 2008, 12:21am on 05/01/08 at 21:22:38, Jonny wrote:
[smiley=laugh.gif] |
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Title: Re: 02 Preventative? Post by Barry_T_Coles on May 5th, 2008, 3:30am Sorry to hear your hurtin & I agree being chronic is much easier to handle. Something that may be worth a try; on my last high cycle I found that if I took an Imigran tablet 50 mg (sumatriptan as succinate)while aborting the current hit with o2 I could get 6 -8 hours before I would get the next hit & would actually be able to get some sleep in between. Anything is worth a try. Cheers Barry |
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Title: Re: 02 Preventative? Post by Sandy_C on May 5th, 2008, 2:21pm Damn, Jonny! I'm so sorry you are going thru this again. You were chronic for a lifetime, then had blessed months of pain free time. My heart hurts for you. I don't know what I can do to help you, but God as my witness, I will be looking. Sandy |
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Title: Re: 02 Preventative? Post by andrewjb on May 5th, 2008, 6:05pm hope it passes soon. breath deep, stay hydrated and eat fish. andrew. |
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