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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> More O2 advice please.... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1295724510 Message started by Matt1993 on Jan 22nd, 2011 at 2:28pm |
Title: More O2 advice please.... Post by Matt1993 on Jan 22nd, 2011 at 2:28pm
Hello everyone. I'm a newbie that just registered last night. I found a lot of great advice on this site, but I'm running into some new problems that maybe some of you have had before. My Dr. has started me on a new therapy that includes O2, prednesone and verapamil. I aborted a CH last night using 15LPM and a non-re breather and I thought I had found a miracle. Well, for me the O2 has just made me have more CHs. They are far better on the KIP scale but I feel handcuffed to the house now. I used to use the nasal Imitrex when the beast came and I would wander the neighborhood till it kicked in. My Dr. says no more Imitrex, says they cause rebound headaches and it raises my blood pressure to dangerous levels. Problem is it works. I would use one and I wouldn't have another one till the next night. Now that I use the O2. It aborts the CH but I wake up 1-2 hours later with another. I went thru two "E" tanks in the last 15 hours and am having CH #4. It is bearable maybe a 4 on the KIP scale, but I'm not sure what is worse. 4 mild ones or 1 big one. I felt like I could go places as long as I had an Imitrex w/me. I keep one in each car, one at the office and the rest at home.
I want the O2 to work, but like everything else in life these days the quick fix seems more desirable. Do I look into getting the higher flow regulator and an on-demand mask or what? I don't know how much more my family can take. Two weeks ago I was laid up with the flu for a week and now I'm in the living room sucking on O2 every two hours! Anyone experienced this? Thanks for any input. |
Title: Re: More O2 advice please.... Post by vietvet2tours on Jan 22nd, 2011 at 3:27pm
Neither oxygen nor imtrex are prevents they are abortives.
Potter |
Title: Re: More O2 advice please.... Post by Mike NZ on Jan 22nd, 2011 at 4:21pm
Hi Matt
With your prednisione is this a short term (about 2 weeks) dose that starts high (about 60mg) and tapers off? This is normally done to act as a preventive until your verapamil builds up in your system which can take about two weeks. Long term use of prednisione can cause problems so it is normally just used for a few weeks. With the verapamil what dose are you on? Many people typically get relief at 360-480mg per day but some go much higher than that, even as high as 1000mg. Dosage changes take about 10 days to become effective and work with your doctor when changing dosage. For your oxygen use, do read the instructions on the link on the left which gives very detailed infomation about how to use it effectively. What seems to work for people who get the rebound CHs is to stay on the oxygen for a few minutes after the pain has gone (some up to 10 minutes). For others drinking an energy drink like Red Bull (anything with taurine and caffeine) works too. I've got two regulators, one does 15lpm and the other 25lpm. I can abort with both, but my average time at 15lpm is 12 minutes and at 25lpm it's 6 (so you can imagine which is my favourite regulator). When going out I've a small oxygen cylinder that fits in a backpack. This means I can have it with me so I'm never far from it. |
Title: Re: More O2 advice please.... Post by Guiseppi on Jan 22nd, 2011 at 9:31pm
I have a similar problem to you, mine would come back within 10-20 minutes of shutting off the 02. I used to use oral cafergot as a 1-2 punch, 02 would knock it down, cafergot would buy me up to 12 hours. Now I chug an energy drink, I prefer sugar free red bull, with my 02. Buys me several hours.
Ask your doc about verapamil as a prevent. A prevent is a med you take daily to reduce the number and intensity of your attacks. I use lithium blocks 60-70% of my attacks, verapamil is the typical first round prevent try. The good news is it also lowers your blood pressure, might be an added benefit for you. Joe |
Title: Re: More O2 advice please.... Post by Val_ on Jan 22nd, 2011 at 11:59pm
Hi Matt,
I find that the 25LPM regulator works Much better than the 15. My O2 provider gives me a regulator that goes up to 15 - I found one online that goes higher. Another thing - Melatonin is something you may consider taking before you go to bed... it keeps the night hits to a minimum for some. People take between 3-18mg (start low, see what they need) per night - I found this helped a lot! It is over-the-counter in the US. Talk to your doctor about it? I was also one of those people who needed upwards of 720mg of Verapamil to help (at docs ordering to try, with time at each increment to see if it helped, and regular monitoring EKGs), and it lowered my blood pressure too! The BP seemed to skyrocket before, especially with multiple headaches. It took me a while to figure out the preventative/ abortive combo that seemed to work best. Hang in there!! Val |
Title: Re: More O2 advice please.... Post by Guiseppi on Jan 23rd, 2011 at 9:13am
Matt, Batch's posts are long and technical, read them! ;D He is the resident guru on oxygen and has done much to push oxygen therapy to where it is today, was hoping he'd chime in on these threads!
Joe |
Title: Re: More O2 advice please.... Post by Matt1993 on Jan 23rd, 2011 at 1:15pm
Wow, thanks Batch. I'm so glad all of you have chimed in. I actually slept through the night last night. I haven't had an uninterrupted nights sleep in over a week. Mike NZ you are right I was given 60mg of Prednisone and maybe that is kicking in as well. The sun is shinning and I think I will jump on the bike and go for a ride. What a difference one good night of sleep can make. Thanks all and maybe another PF night is in my future! :)
|
Title: Re: More O2 advice please.... Post by wimsey1 on Jan 24th, 2011 at 8:35am Quote:
That's the truth. May you have many, many more! lance |
Title: Re: More O2 advice please.... Post by thebbz on Feb 1st, 2011 at 2:23pm Quote:
Holy crap, I would surely die!!!!!! j/k all the best good advice above the bb |
Title: Re: More O2 advice please.... Post by Brew on Feb 1st, 2011 at 3:02pm
Just proves that eating is a fatal disease.
|
Title: Re: More O2 advice please.... Post by Guiseppi on Feb 1st, 2011 at 6:28pm Brew wrote on Feb 1st, 2011 at 3:02pm:
More specifically Brew: Life....is a sexually transmitted disease.....that is 100% fatal! Get past that and everything else is a walk in the park! ;D joe |
Title: Re: More O2 advice please.... Post by Brew on Feb 1st, 2011 at 6:38pm
Got it.
Eating, then, is a symptom of a sexually transmitted disease that is 100% fatal. |
Title: Re: More O2 advice please.... Post by Guiseppi on Feb 1st, 2011 at 7:01pm Brew wrote on Feb 1st, 2011 at 6:38pm:
The mere fact that this totally makes sense...deeply bothers me! ;D Joe |
Title: Re: More O2 advice please.... Post by Brew on Feb 1st, 2011 at 7:10pm Guiseppi wrote on Feb 1st, 2011 at 7:01pm:
You're not alone. |
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