Leaderboard

holy crap! I just used oxygen for the first time (correctly) to abort an attack. At 20 lpm, for about 6 min, 10 lpm to follow slowly. Wow. Now, my tank only goes up to 5 lpm unfortunately, so I can probably not get many aborts per tank. I am having serious anxiety about this. I’m hoping my supplier Can give me more than one tank at a time. I’m calling tomorrow to ask. Just wanted to share some positivity. Kat

Kat if your oxygen is being delivered to you you will want to be good friends with the delivery person. Most likely they do not know how many tanks you are supposed to have so when you place your order for 3 tanks and only leave 2 tanks out for the exchange 9 times out of 10 they will just take the 2 tanks and leave you 3. You can build your stash like this over time so you do not worry about running out over a long holiday weekend or anything. Just stay on top or your refills and build up your stock pile of tanks slowly. you will get the hang of how much O2 you will need per hit and be able to keep your supply well stocked for when things take a turn for the worst. A few extra tanks and regulators will save your ass one weekend and you will be so happy you were prepared. Your other option would to be just ask the supplier for more tanks but I have ever know that to work out very well. I am glad to hear you had success...

A few people were interested in my comments on sleep and psilocybin. I first began looking at it because it linked in with PTSD/REM-behavior disorder and the hypothalmus, both of which are elements of the rare sleep disorders my son and I experience, and of course for many CH patients their attacks seem to have a relationship with REM sleep, let alone also originating in the same area of the brain. For your interest, here's a brief commentary from a neurology researcher on cluster and sleep

The Beast is back. Have had 5 clusters in a week now, and they have been proper strong ones too, not my normal KIP 2-3. These have been in the 5-6 range, and lasting much longer than normal, e.g. 15 minutes instead of 1-5 minutes, but still! Was woken up in the middle of the night this past week, and that's extremely rare for me, even when in the full depths of Hell. So, just tracking things for now. Trying to get clear enough away from triptans so I can power up a fresh busting routine. Think I have enough meds on hand for 6-7 busts, at least. Time to dig my farming gloves out. Stay safe everyone. Mox

Hi Spiny, If your perception is that you dream 'early' in your sleep cycle and if you have any other symptoms suggesting dysregulated sleep or sleep deprivation, it may be worth getting sleep study. Rapid onset REM-stage sleep is a classic feature of Narcolepsy, or if you feel like you 'dream all night' it could a result of repeated arousals during REM sleep (like me, I have severe REM-stage sleep apnea). To be clear though, if you're getting restorative sleep and not having any other sleep-related issues, it's unlikely there's any significant problem. I'm new on cluster science but I've become quite expert on sleep disorders over the past 20 years. Several are mediated in the same area of the brain, involving the same signaling pathways, as are described for cluster patients. I'm not surprised at all that there is overlap and I think as the science progresses we'll find sleep disorder comorbidity is more common among CH patients than not. Julie

kat', sooooo happy to read this. You want an M tank or an H tank (plus you want to keep your smaller tank for portability). Those are the big ones. The big tanks are heavy, so you might also want a stand, or particularly a rolling stand if you have to move them. Now that you know more about O2 working for you, you can consider using welding O2, too, if your supplier is not cooperative. Since they make more money when they provide you a larger tank (or tanks), and have less hassle from having to constantly replace the smaller tanks, you'd think they'd be interested. If you get a bigger tank, or any kind of welding tank, you'll need a different type of regulator. An O2 supplier will know this, but you'll need to know it if you go the welding route or if you decide to buy a higher-lpm regulator than the one the O2 supplier would give you. Keep us informed.

...fixed it for ya...............

Nice video! I have wondered about the REM part for a long time, as my Nocturnal hits begin within ten minutes of falling asleep. Which seems pretty early if attached to REM. However, I also have dreams that begin that soon too. I really want to be around when they figure CH out and have the answers we so desperately want!