gegibsonjr

As a suggestion, you may also want to look at these mask https://www.clusterheadaches.com/ccp8/ This was a game changer for me as you get 100% of O2 whereas with the other mask, there is potential for leakage of outside air. The setup on the link also has a mouth piece that can be used instead of the mask which I prefer.

Thank you @xxx, regarding the One Elevated Methyl Folate +, I did contact them last week and this was the response... "There have been a couple of logistical obstacles with Amazon, which we are on. We are hoping to have our Methyl folate available within the next month." Maybe it'll be back soon - but in the mean time, appreciate the suggested substitutes.

@AlyssaaaaI have had 6 of the occipital nerve blocks as you have mentioned. Unfortunately I saw minimal to no relief with any of these - anything past 1-2 days. Like a lot of treatments with CH, your mileage may vary and I always hope for the best.

Been offline for a little bit, but again, I appreciate everything before the surgery. Recovery is going better than expected. Getting the staples out on Wednesday and leaving Thursday for the conference. Looking forward to hopefully meeting some of the online people here.

I know this is an old thread, but if anyone in the Houston are is looking for a neurologist in the Houston area, I would strongly recommend Dr Blake and her PA-C, Jill Flury. There are no subjects that are off limits regarding treatment, including what many of us here are doing. Dr Pamela Blake MD, FAHS Director, Headache Center of River Oaks Jill Flury, PA-C

@CHfather Great suggestion on the coffee and taurine pills, is definitely more healthy. I appreciate the good words, will be going into surgery in about an hour.

@CHfather I haven't had dosage of 60 mg, so that very well could be right. I was on Prednisone for my back issue for 4 months at 40 mg per day though. I agree with the dosage issue as I ran into that with Verapamil as you reference. I definitely appreciate all of your input and your information on this site.

@Rod H I've been prescribed prednisone for other issues and unfortunately it hasn't had any affect on the attacks.

Thank you all for the input. @Shaun brearleyI stopped taking triptans several years ago as they became very ineffective, i would definitely try them again if i had them now. @Bejeeber I have heard of using DMT, although I need to look into this further. Thank you for the references to those that have been in similar situations. @CHfather thank you for the link to your site up, excellent information! The hot shower is definitely a go to, unfortunately no help this time (cold is a trigger for me). On the O2 coming off anesthesia, I agree 100% as I've been full blown 3x after procedures. Unfortunately, even instructions from my neuro didn't help facilitate the high flow usage The last time, i was given a rebreather mask at 4 lpm. Fortunately my wife was there and turned up the regulator. I'll be attempting again next Wednesday with the instructions from my neuro and how did the best. As always, all input is greatly appreciated.

First a little background, hopefully it's not too convoluted. I am a chronic cluster survivor since 2003 that was formally diagnosed in 2009 with CCH and paroxysmal hemicrania/ hemicrania continua (depending on the neuro). Indomethacin has done wonders for the hemicrania but like most, no meds have worked reliably for the CCH. O2 has been the most consistent but only about half the time. I have also been on both the vitamin D3 and the antihistamine regimen. This past Wednesday I was informed that I will need back surgery next Thursday so I have to stop taking the Indomethacin along with the majority on the vitamin D3/ antihistamine regimen component. I also did my second dose for busting Thursday evening. Friday (yesterday) came with a vengeance. A combination of coming off of the Indomethacin and the typical slapback headache, I've been in constant pain for the last 24 hours. My current abortives are O2, heat on the head, and red bull. Does anyone have other suggestions for other methods to abort... this is going to be a very long 5 days with no relief until after surgery. Thank you in advance!

@eileenbunny Thank you!! Looking forward to this.

Everything that @CHfather said... I have had my CCH switch primary sides on several occasions with the first being after sinus surgery. I wouldn't say it's a good thing, just a change. Currently I am primarily right sided but there have been events that include the left side. I wish you all the best for finding PF days and nights.

Is there a rough agenda regarding timing? I thought I had seen one previously - starting Thursday evening and finishing Sunday at noon. I am working on travel arrangements for this conference and trying be be a cost conscientious. Thank you!