brs82 Posted July 4, 2014 Share Posted July 4, 2014 So just a brief description , had CH s for a number of years now. Around 5 years ago they went to a new level, more freq and more painful. Then around 2 yrs ago I went chronic. Other than what few breaks ive got from prednisone, had attacks daily for about a year. Oxygen has stopped working as well, immitrex dosent always work either. In saying all this im sick and tired of being sick and tired. Ive done my homework, went out and collected a large supply of cubensis. Ready to give this a shot , busted with seeds before no success. Currently tapering off prednisone now , no immitrex now for 10 days , and no other meds at all. Only problem is im feeling really strong shadows already still on pred. Im worried ill never get 5 good days of detox without getting hammered. I can get 5 days detox on everything but the pred. Should I go ahead and try to bust anyway if I cant quiet make it to 5 days. Im stocked up on oxygen and willing to suck it all up , its just lately ive had no luck with oxygen. Anyways im sitting on go with big dose of vit M , just looking for some advice. Thanx again and all is appreciated Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted July 4, 2014 Share Posted July 4, 2014 brs82, It sounds like you've done your homework and ready to "do this thing". Detox is paramount to your success. Do you "Huff" the O2? At the first sign of the pending attack? Myself and others have found it's pretty useless if we start the O2 after the attack starts, but.... If I hit the O2 as soon as I feel the shadow I can abort 99% of my attacks within 10 to 15 minutes of their actual start, and with a significantly reduced pain level as well. Also try an energy drink. I find slamming half a monster (blue can, low carb) right as I'm about to start the O2 works wonders. Best Pain Free Wishes, J Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted July 4, 2014 Share Posted July 4, 2014 Hi brs82, Welcome, sorry you have to be here. What ThatHurtsMyHead said. I know people have gotten successful results from only a 4 day gap between busting, which I assume would be the same as a 4 day detox. It might be worth considering, and I'd love it of others confirmed or corrected this statement, but perhaps a 4 day detox, then bust every 4 days for a couple of times, then, when you're able, push it out to 5 days. The 5 day rule is a hard and fast rule, in a world with no hard and fast rules. 5 days, I think, is actually a pretty good, proven guideline, but some (I believe) have been successful with slightly less. The worst case, the bust doesn't help and you have to wait another 5 days to bust again. So do you gamble with the 1 day up front in hopes that it'll work, or do you wait that extra day to be sure it'll work? From what I understand, and with my limited experience, if you bust and don't get any tripping effects, then you busted too soon and it isn't going to be effective on the clusters. I know we promote taking as small of a dose as possible to be effective on the clusters with minimal trip, but I also understand that some trip is important and a good indicator something is working. Again, would love it if the more experienced here would jump in and correct me if needed. MG Quote Link to comment Share on other sites More sharing options...
alleyoop Posted July 4, 2014 Share Posted July 4, 2014 brs82, This is strictly my advice, but I have worked with a number of people in the same boat you find yourself in. Both J and MG know their stuff and offer sound advice. Believe me when I say that the pred is your worst enemy, and you want to put it behind you at all costs. BUT, you do have to taper off of it safely. You risk all kinds of things including anaphylactic shock if you try to taper too quickly. As to the 5 day rule: It is ideal for the reasons stated above. But in some cases, and I think, this being one of them, you may have to try to bust after 4 days or even 3. That's about all I have for now, but feel free to PM me if you want. All the best, alley Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 4, 2014 Share Posted July 4, 2014 In addition to the great advice you have already received from fabulous folks, I urge you to check out the ClusterBusters Oxygen Page, under the black and white MENU tab on the left side of the page. Lots and lots of people have found the effectiveness of oxygen fading over time, and have brought it back to full (or even better) effectiveness with some or all of the strategies mentioned there: higher-flow regulator, better mask, and different breathing strategies. (Look at the "Addendum," starting on page 22.) The energy drink that THMH mentioned will also probably help (you can use an energy shot, too, such as 5-Hour Energy or 6-Hour Power, and for some people even a strong cup of coffee helps). Have you tried the vitamin D3 regimen? Worth a shot, I believe. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 4, 2014 Share Posted July 4, 2014 The kind headbanger folk who have replied here have said everything I woulda or shoulda. 8-) I'll just emphasize the importance of tapering off the pred as prescribed, and the optimization of your O2 rig and strategies. You sound like one well researched CH'er who won't be deterred from blowing this beast away, so apologies if these details are the sort of which you've already been well aware. Quote Link to comment Share on other sites More sharing options...
brs82 Posted July 4, 2014 Author Share Posted July 4, 2014 Thanx to all of you for the much needed advice. I forgot to mention ive been on d3 regimen for a little over a year now. I also use a non re breather mask at a 25 lpm rate, but in saying that I could stand to be a bit more strict with breathing strategy . As with energy drinks their was a time when they helped a lot but slowly faded away. Also my doc has performed 2 occipital nerve blocks on me . One of which seemed to work for around 10 days . Jus thinking outside the box could this be a harmful strategy to get my 5 days detox? That is provided the O2 dosent help. But ive really gotten lazy on my breathing srtatagy lately and just lost confidence in it. I hope this is all that im doin wrong it just helps to hear it from someone else to bring it to light. But alright folks im loaded up with a big arsenal of info , O2, caffeine , and oh yeah golden caps so im ready for battle! Once again you guys have been a big help thanx to all. And feel free to keep the advice coming believe me I could use it. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 4, 2014 Share Posted July 4, 2014 Personally I had to take it above 25 LPM (more like 45 LPM ) after a couple decades into my episodic CH experience. It was at the point where in high cycle I probably wouldn't have even bothered with 25 LPM. Some others have gotten to this point too, and that, of course, is where I got the idea. A demand valve system would come in so handy at these times, but if keeping initial outlay expenses down is a top priority, just a higher flow regulator could be something to consider. Also, Dan/Hipshot has found that when regular old occipital nerve blocks weren't working, a "facet" version of them would. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 4, 2014 Share Posted July 4, 2014 Have you considered the "ClusterO2 Kit," formerly known as the O2ptimask? A lot of people say that this mask makes a considerable difference. http://www.clusterheadaches.com/ccp8/ Also, just wondering (looking for anything that might help) -- Have you have your vitamin D level checked? I think Batch has found that even many people doing 10,000 IU/day still aren't getting their levels up to where they need to be. He did publish an updated version of the regimen within the last year (since you started it) -- maybe worth taking a look? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Quote Link to comment Share on other sites More sharing options...
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