New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Daily Chat >> General Posts >> Confused about O2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1252002770 Message started by nate1064 on Sep 3rd, 2009 at 2:32pm |
Title: Confused about O2 Post by nate1064 on Sep 3rd, 2009 at 2:32pm
Well I am solidly in a CH episode. Going on 6 weeks and for the first time the headaches switched from the right side of my head to the left. I have a good Doctor but not sure what to do from here. I am on verapimil ER twice a day(240 MG). I was also on prednisone...6 the first 3 days, 5 the next 3 and so on.
But now they are back and I am getting 6 headaches a night. I got an H tank of O2 and after reading and following the info hereit works. My headache goes away after 6 to 10 minutes. Problem is that it comes back in an hour or two. Now I am out of O2 after a week and the respiratory dude from the oxygen supplier says I dont need a special mask and I don't need to go over 10 lpm. I was nice to him because I want more O2 but why is everyone so clueless about this stuff other than the folks here? I guess because we live the dream! Any suggestions? |
Title: Re: Confused about O2 Post by Batch on Sep 3rd, 2009 at 4:58pm
Nate,
You are not alone in having problems like this. My 10 plus years as an episodic cluster headache sufferer frequently found me having 6 to 8 attacks a night on nearly an exact 2 hour schedule. I dosed on a pred taper as a transitional preventative and found relief while waiting for verapamil to build to therapeutic levels. However, as soon at the taper ended the beast emerged with a vengeance and on the same two-hour schedule. When it became clear verapamil and I were not simpatico, my neurologist put me on dopeycote... That proved equally unsatisfactory... That left me with imitrex tablets as the nose spray and injections were not in the formulary for my provider. The real relief came when I turned chronic in 2005 and started on oxygen therapy. I did not like the side effects of up to 200 mg of imitrex a day and neither did my body... It took a few attacks using oxygen therapy with a non-rebreathing mask, jacking up the flow rate for each successive attack until I found true relief. That turned out to be any flow rate greater than 25 liters/minute and I soon found that the higher the flow rate, the shorter the abort times. Being a Navy pilot with over 3000 hours of pilot time in Navy fighters and all of that flight time breathing 100% oxygen on flights lasting over 2 hours at rates well over 25 liters/minute, I was confident the flow rates I was using to abort my cluster headache attacks were perfectly safe... I'm 65 and in excellent health save for the cluster headaches if that means anything... The key to success for me was using a flow rate that supports hyperventilation. After a few weeks of testing, I found the minimum flow rate that supports hyperventilation and pushes my system into respiratory alkalosis to be any flow rate ≥25 liters/minute. I also found that flow rates higher than 25 liters/minute resulted in even shorter abort times. As a testament to the body clock functions of our disorder, even with these very short abort times, my attacks frequently returned every two hours on schedule, but the total number of attacks a day and the intensity of these attacks began decreasing rapidly after the 3rd week of using this method of oxygen therapy. Today after four years as a chronic cluster headache sufferer using this method of oxygen therapy with either a demand valve or high flow rate constant flow regulator and an O2PTIMASK™, my average abort times are between 3 and 4 minutes... I am very comfortable with that and have a great quality of life... even when the attacks come like clockwork every two hours during a high cycle. If you are interested in more information on this method of oxygen therapy, shoot me a PM with your email address and I'll send you what I've got. Take care, V/R, Batch |
Title: Re: Confused about O2 Post by nate1064 on Sep 3rd, 2009 at 5:44pm
Batch,
Thanks for the reply. Everything you have noted for me has been right on. One question though...this respiratory therapist that I talked to today said NOT to hyperventalate and that I did not need a rebreather mask. That is contrary to everything I have read from you and all the other posts from those using O2 succesfully. Why are they so misinformed? Is the re-breather mask significantly better than this little mask that I got with the O2? Any idea how much it costs to refill a H size O2 tank? |
Title: Re: Confused about O2 Post by Marc on Sep 3rd, 2009 at 6:22pm
Nate,
You provided your own answer: "respiratory therapist." They are accustomed to dealing with L O N G term O2 exposure for people who are not getting enough O2. The key is in what Pete said - you need to hyper ventilate for just a few minutes. For me, it's 3-6 minutes, but 25 lpm is a bit short to keep up with my deep breathing rate. Marc Edited to add: YES, you need 100% O2 with no leakage of room air in order to get the real benefit from this. Get the right mask! Eventually, the medical community will catch up. For now, you have to decide on your own if you want to stop the agony. |
Title: Re: Confused about O2 Post by nate1064 on Sep 3rd, 2009 at 7:05pm
Thanks Marc. I am getting an O2PTIMask tomorrow.
Another problem I have is once the last CH is gone I think they will be gone for good. The first hour is euphoric and then the anxiety starts creeping in. But the usually go away for a long time. By the way....is there still a theory that you grow out of these retched CHs? |
Title: Re: Confused about O2 Post by barry_sword on Sep 3rd, 2009 at 7:19pm
Batch is our o2 God! I just got a higher flow rate regulator and the new o2ptmask, but have not had to try it yet as I am out of cycle right now.
My problem with the lesser flow rate and a non-rebreather mask was the hits that came after falling asleep, they were already ramping up before I woke up and took too long to knock back down. If I was awake, no problem, two to five minutes, poof, gone with o2! Sleeping, another story. The higher flow rate will work so much faster with the new, bigger bag and better fitting mask. Hyperventilate the o2! It works!!!! :) Barry, if I can help you let me know. PF wishes. I also take 480mg Verapamil daily as my prevent. Works for me so far, hope you also find your "cocktail" as we call it. |
Title: Re: Confused about O2 Post by nate1064 on Sep 3rd, 2009 at 8:07pm
Thanks Barry. Batch definitely sounds like "the Man". But virtually everyone here has positive things to add and I have yet to get bad info. Except from the doctors and medical people not involved here.
I will report back with my new OptiMask...unless I become pain free. Amazing how your fantasies change! |
Title: Re: Confused about O2 Post by Skyhawk5 on Sep 3rd, 2009 at 11:36pm
Yes Batch is the O2 Top Gun. He changed my life for the good.
You will love the O2PTI mask. It is the only thing I know of that is made just for Cluster Headaches. And it works much better than any mask from our suppliers. Get the best O2 you can afford. It has given me some of my life back, some confidence that I have the best tools available. Don |
Title: Re: Confused about O2 Post by Wabi Sabi on Sep 5th, 2009 at 11:20am
I see I can buy O2 tanks online, welding and medical, but empty :D
Would it be easier for me to refill a tank or to go out and try the welders shop method maybe? My Neurologist told me insurance companies have an issue with the whole O2 thing. Not sure yet if he's pulling my leg but I do see my insurance has issues with my Imitrex injections, only allowing me 4 - 4mg auto injectors per month. I will be stock piling through the yr for next yr though. I am just ready to try the whole O2 method, it seems like that is the cheapest and best remedy around here. I just need to know how to get a hold of some. :o I think I may be abloe to get my Neuro to prescribe it to me if thats the only way to get it done. Help me out with some knowledge. |
Title: Re: Confused about O2 Post by Ginger S. on Sep 5th, 2009 at 12:12pm Wabi Sabi wrote on Sep 5th, 2009 at 11:20am:
It's not just the ins. co's that have issues with prescribing O2 it is also Doctors. It boils down to a liability issue both for Dr's and ins. co's. Not the 1st time I've heard of a Doc saying this, my doc said it as well. Edit (Whoops wasn't done yet) My ins is the same way with my Imitrex shots...drives me batty. My Dr and I found a bit of a way around it...Have him also prescribe the Imitrex nasal, if you take it soon enough it will help may take a few minutes longer to do so like about 10-20 in some cases but it's better than nothing if you have no O2 on hand. Make sure you take it at the 1st signs of a hit if you wait too long you may be in for a rough ride. |
Title: Re: Confused about O2 Post by Wabi Sabi on Sep 6th, 2009 at 2:39am
Thank you! I will get on him about the O2.
Where is the liability with the O2s? Flammable? Not sure what they are so worried about. |
Title: Re: Confused about O2 Post by Marc on Sep 6th, 2009 at 12:36pm
Also keep in mind that people often buy welding O2 for:
- Hydroponic vegetable gardening - Aquaculture (fish farming in your pond) - Glass and ceramic projects As a side note, I bought my hose kit from a private pilot who sells them to other pilots - who use welding O2 at altitude. IF you decide to fill your own tanks - DON'T until you read how to do it safely. O2 doesn't burn on its own, but it will make other things burn. Simple little things can burn at high at the pressures found in a tank. Even moisturizing lotion (or natural skin oils) can ignite when exposed to 2000+ PSI. It is safer than filling the gas tank in your car, if you follow the basic common sense rules. The primary rules are: - NO OIL on tanks and fittings - Tight connections on fittings made for use with O2 - No ignition sources - Allow adequate time for the invisible, odorless O2 to "air out." Your clothing can become saturated without you knowing it. Lots and lots of info on the web - read it and you will see what it's safe to handle. Marc |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |