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Thanks Spiny! I'm glad the procedure went well for you. I agree that a pre-op talk stressing the importance of the protocol you need can make all the difference in your experience. In terms of anesthesia, if you need it again Propanolol might be worth inquiring about. I have heard more than one buster claim that it had been helpful for them and the Chicago Headache Clinic considers it as "occasionally helpful for preventing Cluster Headache. (there have actually been reports of it preventing clusters since 1972 but for some reason it is never mentioned) If you need anesthesia again it might be a better option than some of the other anesthesia drugs. In regard to nitrous oxide, Quite a while ago I got pretty sick of all my dental work. It is always complete torture. It doesn't matter if it is a cleaning, a cavity or a root canal--they all leave me in excruciating pain regardless of novicaine and then I always leave with either a cluster or a migraine. So I started looking into nitrous oxide and had the same thought that Jon had, that it would probably be a trigger. I was surprised to find that the only info I could find on nitrous and clusters was a report on Erowid by a high school kid that had clusters. Truthfully it gave me a lump in my throat, thinking about high schoolers having to deal with chronic clusters. That is just wrong and eggs me on, we need to change this situation. It is simply unacceptable. So the report I found by this high schooler said that he had chronic clusters and managed them with nitrous oxide. (https://erowid.org/experiences/exp.php?ID=23397) He said that he would bringe a small nitrous "cracker" (device used to open a small nitrous cartridge) and any time he felt a hit coming on he went to the rest room and took some nitrous, claiming it worked every time. After looking into it I realized that his claim was not that weird. Nitrous is in the same class of drugs as another cluster drug, ketamine. Both drugs are NMDA receptor antagonists, both lower nitric oxide levels, both lower TNF levels and both are known to be very effective for pain. Hell, in some countries they give nitrous oxide to women for childbirth. So I was at least convinced that it was not going to trigger an attack for me and I made the appointment with a new dentist. I had 2 or 3 times where I went in and everything worked great. Not long after the shot of novicaine they would put the nitrous mask on and I would experience very little pain and no cluster or migraine afterwords. Then one day the hygenist goes to give me a shot of novicaine (before I get any nitrous) and puts the needle straight into a nerve, I'm guessing she hit my trigeminal. Holy shit instant kip 9 cluster! I pushed the lady off of me and jumped up looking for my bag that had my sumatriptan shots. I found it and was fumbling through it, blurring vision, eye tearing, red hot poker love smashing through my eyeball when the hygenist walked in with the nitrous. I gave up on the sumatriptan, and told them to put me on full blast. Luckily they complied. Truthfully they looked so damn scared and in shock of the situation I think that I think they would have done whatever I asked at that point. Within seconds of the nitrous the pain ramped down. A full minute or two and the pain was 100% gone for the rest of the day. Since then I have made them put the mask on before they do anything to me. They always try to wait on it but I give them the look and state "NO ONE touches me until you put the mask on." Thanks again for sharing Spiny -Ricardo

Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling..... Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... Best Jon

Hey all. I recently had to go in for an upper and power scope at the hospital. I informed the anesthesiologist of my clusters and requested O2 at 15lpm with a non-rebreather mask available when I woke up. They had been informed that if I sat up and held my head do not give me narcotics or force me to lie down. Post procedure, I woke with a hit, sat straight up and saw a lovely tank of O2 not 10 feet away. The nurse was at my side with the mask and told me it was set at 15lpm as requested. About five minutes later I stuck a thumb in the air -my signal to drop to .5lpm. They were awesome. Post scope input was they had to put me completely under as I was thrashing around and they had to use full anesthesia, not sedation. Hmmm. Well, when I returned for surgery, it was a different anesthesiologist. I gave him the run down. He checked the records from the scope and yep, got the picture. I told him that opioids would not help at all. 'I see that!'. O2 was waiting for me. They were smart and attentive!!! So, perhaps this might help someone facing a procedure or surgery. They really don't understand that mega pain meds won't help! A little explanation went a long way for me and might for you. ATB

Actually the way I found out that hallucinogens lower TNF so well is from talking to a Chron's patient that was not getting enough relief from pharmaceuticals. He swore LSD was the thing that worked best for him. My point really though, was that there are substances that may possibly work on both disorders making it so you can take less drugs altogether. I have been on prescription ketamine for clusters for close to 7 years now and have found it to be extremely helpful. It has also shown a lot of promise for fibromyalgia. (Not to mention that I would bet that the stimulant effect that comes with the low doses used for cluster would work very well for narcolepsy.) And I'll take a cannabis habit over most daily pharmaceuticals anytime. Humira in particular comes with some pretty serious warnings in regards to lowering your resistance to fighting infections. -Ricardo

...excellent post spiny...I had a similar procedure and a similarly attentive/responsive/ anesthesiologist (my luck, she had done a neuro internship). Specifically requested NO nitrous oxide as I believe it to be a trigger. Woke up...no hit! ....later....a much more serious operation..... I found the older abrupt anesthesiologist much less willing to consider the issues with a ch patient (if he even knew what it was) and I woke to a MASSIVE 8 hr killer hit....and I think I drained the hospital O2 tank.....to no avail....so BAD luck that time anyway...I hope anyone needing surgery reads your post AND finds a friendly ear.......... Best Jon