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Bosco, my MRI's come back with that damage too. So when I get forgetful, I blame it!!!

Shit damage to the brain . I wont tell the missus . She already thinks im mad . That will just confirm it

Saturday I got a filled, 40 cu ft. tank from Home Depot. They keep them in the outdoor cage outside of any store that has a "Pro Desk", and they are serviced by Thoroughbred industrial gas. They also had 80 and 125 cylinders. Thoroughbred appears to be the default standard around these parts, and it looks like I can get an exchange refill from HD, Tractor Supply and several other places. It costs a lot to take home the first tank, but refills are $34.99. I'm about to order a regulator so I can test this thing out. Also, good news...the beast is down to a low roar after the 4th busting dose. Some low-grade attacks at night, but nothing compared to 2 weeks ago. Felt good enough to take the motorcycle out yesterday for the first time in a long time.

Agreed! It does affect memory in my experience. So I wind up taking those pills for old folks to help with memory. They seem to help or the placebo effect is working!!! I'm old, so either way is just fine. Help is help!

@Icantdance So sorry to hear this, and the way CH has affected you and your life. What an accomplishment that you kept working at a job that I am sure is very demanding and even stressful for so long (probably you were in other education jobs before your current one -- they're all demanding and stressful, from what I've seen)!! May busting and/or D3 be an answer for you, as they have been for so many. (You don't have to answer this. I'm just wondering whether any of your doctors ever tried octreotide, which is described in several places as a useful possible abortive for folks who don't tolerate triptans. Not as good as triptans, but seemingly more effective than nothing to help abort attacks. I have no idea whether octreotide would block busting. It's a completely different thing from triptans.) I hope you'll stay here and get help from the folks with experience. I would like to suggest that you start a new thread in the "Theory and Implementation" section, since we generally refrain from posting about busting in this part of the board.

Memory loss? ?? oh crap, I forgot what I was gonna say. Im with ya on that one

Sure seems plausible that it would cause some sort of damage... I know when I had my last MRI it said something about a T2 something or another and when I asked my neurologist he mentioned it being a small white mass that was basically scar tissue he said it wasent of concern unless I had more show up down the road and that it was common in both CHRs and migrainers.... So to me that seems like damage idk...

Greatnews@KmanTexas DD

And you’re using a regulator that goes to 25LPM? My CHs can be resistant to O2 or rebound when I come off but it still helps sometimes. But not less than 25LPM and if I’m in the last quarter of an M tank it doesn’t work as well.

As ive said in a previous post on a different subject when im at home my attacks are regular every 3 hours but im relaxed at home . When im at work im highly stressed and that seems to keep the beast away . So I'd say that changes the times of my attacks for some reason . I have stayed awake all night to try to reduce my attacks as that when i get hit with my worst attacks but it didn't wirk for me 0135 every morning the beast would hit me with aa 3 hour kipp 10 kicking me round my bedroom . Got to the stage where I'd set my arlarm for midnight so i could go down stairs so didnt wake the rest of family up

Thanks for the encouragement. I am on my third neuro. I have tried nasal ketamine and am on Batch’s vit D protocol. Doc said Emgality is the only thing left besides vagus nerve stimulation. I have not tried busting for fear of legal repercussions with my job. Mm seems easier to obtain or produce myself, and I am looking at all the info here about that and plan to move forward. Thanks again. Now to get growing and starting my online store.

Buddy really look at busting . It works for so many people on here . Mm or LSD. LsD is the best if you can get hold of it

Nah it’s more like you have the courage to fight and aren’t selfish to do that to your family! Please try and find a doc for oral and nasal ketamine. Have you tried busting or the vitamin D protocol. It works for most people!

This topic is relevant to me at the moment as well. 21st year as a cluster head. The only treatment that has ever worked for me was high doses of prednisone, but does not work anymore and caused me to become diabetic. I am episodic amid get hit the same time every year with 3 years being mild and manageable and the fourth being a battle on every level. I am two months in to a bad cycle 7-9 hits a day with 2-3 total hours of sleep. I just took emgality with no effect, in fact, I think a couple hits are more intense since the injections and I had a mild allergic reaction. I work as a high school assistant principal and athletic director. Have not worked since the start of the cycle. FMLA gives me 12 more weeks before I lose my job and insurance. Hoping the cycle ends before then, but if the pattern holds, it won’t end until May/June. I obviously am not safe to perform my duties and can’t do them from home. So, the added stress of potential income and insurance loss sure does not help my efforts to battle these things. Looking for options at the moment, but it is going to have to be a home business that I manage as no one else is going to hire me at my age (53). Was thinking about disability, disability retirement and the like, but it is so difficult to get. Actually, it is easier if you have migraine, tension headache or anxiety. I have 2 of the three with cluster cycles, but still too difficult to get. Unfortunately, I too have had negative thoughts. I thought about getting a little better life insurance policy and having an accident so my family would be taken care of. Honestly, I think about that at least two times a day/night during kip 9-10 attacks. I do not have the courage to follow through. There are so many things I want to see/experience and I know what it is like to have a parent commit suicide as my father did when I was 4 yo. Anyway, maybe all us clusterheads should band together and start our own business of some type…lol Sorry to ramble, thanks for listening. It is 2:30am and I am between hits. Have a good night y’all.

@KmanTexas Harbor freight has one for around $80 https://www.harborfreight.com/oxygen-regulator-63788.html

I thought I read somewhere that CH can cause some memory loss over the years. I feel like my memory has some holes in it after the last few cycles.

...yeah...it was a worry, but after a number of real bad hits early on....and even w/o a diagnosis...there didn't seem to be residual physical damage so i started worrying/concentrating on the mental health aspects. hard work...nothing physical to grab on to...i constantly wonder how folks maintain in the face of CH. my admiration for the perseverance of clusterheads is endlessly deep... ....what became near incomprehensible for me was "how is it even possible to SURVIVE a pain so incredible it defies description?". there were 10's (thankfully very rare) where it hurt so bad i actually forgot to breathe......yet here i am....

Not that I rationally think it’s anything other than the worst pain in medicine that is not a sign of something more serious. But at times like these (up spike in severity) I can’t help but wonder. It feels like my head is going to explode and you just want to die.