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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> O2 no longer effective http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1325687884 Message started by Jeannie on Jan 4th, 2012 at 9:38am |
Title: O2 no longer effective Post by Jeannie on Jan 4th, 2012 at 9:38am
CH continues to throw new things at me. I used to be able to abort a hit, with oxygen, in five minutes or less. It has become less and less effective lately. I'm exhausted, trying to hyperventilate for sometimes twenty minutes, only to knock the pain back some. I'm relying more and more on Trex which is also sometimes not working very fast. I've been in cycle since March and I'm feeling a bit sorry for myself.
Any help would be appreciated. Thanks, Jeannie |
Title: Re: O2 no longer effective Post by Guiseppi on Jan 4th, 2012 at 9:46am
This happened to me last cycle. I started the "original" Batch regimen, which was just calcium, magnesium, and zinc, washed down with fresh squeezed lemonade, up to 4X a day. I never exceeded 3X a day and within about 30 hours the oxygen was knocking them down in 6-8 minutes again.
Are you on the Batch regimen yet? Might be worth a shot, hang in there Jeannie. [smiley=hug.gif] Joe |
Title: Re: O2 no longer effective Post by Jeannie on Jan 4th, 2012 at 10:46am
Thanks, Joe. :)
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Title: Re: O2 no longer effective Post by Chad on Jan 4th, 2012 at 11:18am
Batch's regimen + busting = possible shorter cycle, less severity, less hits.
I barely even know I'm in cyle at the moment due to these two methods. O2 and Monster is there as my quick abort. |
Title: Re: O2 no longer effective Post by LasVegas on Jan 4th, 2012 at 1:15pm
Hi Jeannie,
Sorry to read you are still in cycle. :( Please forgive me if I offer the following advice, but just to cover the bases I will ask... Have you noticed a difference in your timing of getting on the o2 compared to what was successful in the past? Hyperventilate with complete inhale and complete exhale using 40 lpm? Using NRB Mask? Sitting upright and/or standing position while using o2? Completely slam energy drink before, during or after use of o2? I've experienced with this and have noticed different results based on before, during, or after. Re-read all the o2 info for addtl pieces of info? Patience is tough, but must exist for success with any CH treatment! Hang Tough! ;) -Gregg in Las Vegas |
Title: Re: O2 no longer effective Post by Jeannie on Jan 4th, 2012 at 3:54pm
I've been doing everything the same as always, regarding getting to the 02 and how I breathe while on it, and have started taking the D 3 regimen. ( I could live without burping fish all day )
I believe that my CH has changed and I am now dealing with being chronic. I only had about a 5 week break between my last cycle and this one. I know it is just a matter of finding a way to control it and deal with it. Thanks for the replies. |
Title: Re: O2 no longer effective Post by Barry_T_Coles on Jan 4th, 2012 at 6:35pm
Hi Jeannie
My high cycle early last year turned much the same as you describe; the O2 was taking longer to work than previous & they where coming back quicker, what I ended up doing at night time which are always the worst was by using a cold gel pack on the CH side along with the O2 until the hit had gone & then laid down with a fresh cold pack, it worked first time I tried it & continued to work until the cycle ended. I have never had a high cycle that was the same as the last, it's a matter of being aware that the beast can & does change & we need to be ready for when it does. Give it a go & see what happens. Cheers Barry |
Title: Re: O2 no longer effective Post by LasVegas on Jan 4th, 2012 at 6:44pm Barry_T_Coles wrote on Jan 4th, 2012 at 6:35pm:
That is a fantastic statement! ;) |
Title: Re: O2 no longer effective Post by wimsey1 on Jan 5th, 2012 at 7:43am
Jeannie, I'm truly sorry this is happening to you. I can only tell you that when I went from episodic to chronic, I experienced the same "settling in period" many experience at the beginning of episodic cycles. Hit and miss, on time and intensity. It did get worse before it settled in, and then I could predict hourly what the next hour or two would be like. Once that happened, I found abortives worked again...at higher rates and doses though. So it seems even we chronics have high and low cycles over time. The high cycles require more of everything. The low cycles tend to hover around KIP 2-3 and yield more quickly. I added two Rx abortives to my arsenal, Trex and Migranal. They cannot be taken within 24 hours of each other, but they both work and I alternate use. It doubles what my insurance company allows /month, and I am convinced helps avoid the rebounds. Hang in there. God bless. lance
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Title: Re: O2 no longer effective Post by Jeannie on Jan 6th, 2012 at 9:38am Yesterday was awful. I started getting hit at around 11 pm Wednesday night. It continued every 40 to 60 mins till about 11 yesterday morning. I finally gave myself a Trex injection which stopped the HA but caused me to vomit for two hours. I think that the fish oil is making me sick to my stomach. I have been having trouble tolerating it and Trex has never before made me sick. Randy was truly wonderful through it all. He had taken the day off and helped me immensely with my job. I don't think I would have made it through the day, had he not been here. As much as I hate it, I'll be calling the neuro for a steroid taper. It will likely have to be Decadron as Pred never seems to do the trick for me. You'd think that after 31 years, Id have this all figured out. I'm truly grateful for my husband, family and everyone here. Jeannie |
Title: Re: O2 no longer effective Post by Guiseppi on Jan 6th, 2012 at 6:12pm
Damnit Jeannie I don't like that. [smiley=hug.gif]
Joe |
Title: Re: O2 no longer effective Post by Batch on Jan 6th, 2012 at 6:30pm
Hey Jeannie,
I agree with Joe... a reaction like that is a bummer... Try skipping the Omega 3 Oil completely and cut the calcium citrate dose in half... but keep the vitamin D3 dose at 10,000 IU/day... This should help calm the troubled tummy... and shouldn't affect your use of oxygen therapy. Take care and please keep us posted. V/R, Batch |
Title: Re: O2 no longer effective Post by LasVegas on Jan 9th, 2012 at 11:17pm
How are you doing Jeannie?
-Gregg in Las Vegas |
Title: Re: O2 no longer effective Post by Jeannie on Jan 10th, 2012 at 9:53am
On day five of a 15 day Decadron taper. Haven't had a CH since starting it. I'm not a very nice person to be around though. I feel sorry for my husband.
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Title: Re: O2 no longer effective Post by LasVegas on Jan 10th, 2012 at 10:07am
Hang in there ;)
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Title: Re: O2 no longer effective Post by Batch on Jan 10th, 2012 at 11:52am
Hey Jeannie,
That's wonderful news. The steroid taper tends to work much more effectively when you've elevated your 25(OH)D level with vitamin D3. If you haven't already restarted the anti-inflammatory regimen less the Omega 3 fish oil, you might want to consider talking to your neurologist about doing so before the steroid taper ends... No fun falling back into the grasp of the beast when it really isn't necessary. Take care and please keep us posted. V/R, Batch |
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