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I look back often to the first day I felt the pain from CH. I had no clue as to what was going on. I remember the severe pain pulsating in my rt temple shocking me over and over again, going pale and sweating because of the new level of pain I had never experienced before. I remember the phone calls to the ER, the doctors, the shite show in its entirety. I'm still scared but nothing like what I was. I've turned or have tried to turn my experience with this mess into something to grow from (not sure I've grown a darn bit) but I know I move through each day a bit better than the one prior. The anxt not as bad, the fear not as bitter the continuation of remembering " I can't stop this but it will stop" has been so important to my mental health. Being lost without a clue is so hard. Having folks familiar with your own experience priceless! I suppose to wrap this rant up I should say that I don't believe any one medication or supplement regimen will work forever it is more of what @jon019 mentioned in the way that CH is ever evolving and we must evolve with it in new methods to fight this battle.. rant over..

Amen!

...if not you should be....eliminates lotsa "regular" meds, no side effects, fast, easy, portable with some effort. cheap compared to triptans. of course, busting may just eliminate it all....and strong consideration of vitamin D3 regimen wise... ....that cyproheptidine (Periactin) mention was certainly a blast from the past....second med i ever tried way back in the 80's (no help). anti-histamine+ used when CH still referred to by some as "histamine headache". i suppose it might work for some few (some anti-histamines help some clusterheads) but none of the traction in the community one would expect if it worked for more than the few. still using? hope your current neuro is reading more recent lit.....and is therefore willing to script OXYGEN...life changing for many a clusterhead!

I can't tell you about the cost, which varies greatly not only by region but also depending on what you get (how many tanks of what size). Insurance should cover most or all of it. Some people have a hard time getting their insurance to cover it; others don't. I don't think anyone would disagree that whatever the cost, it's worth it. Yes, you start it right away as a hit is coming, and you continue for some minutes after the attack has been aborted. The sooner you start, the quicker/easier the abort is going to be. >>>Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well)<<< Plenty! If by "docs" in your post, you mean "doctors," no way. Won't help you at all. You get O2 based on a doctor's prescription from a medical supply company. Maybe that company will have someone to give you advice, but probably not. It's not complicated in its essence, but there are lots of things you can do to get aborts faster (related to, for example, getting some caffeine into you as you start on the O2; using an effective breathing strategy; having the right flow rate; and having the right mask and other equipment). When you're ready, it can be discussed more. Many documents here that you can read (e.g., https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/ and https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ and the "Oxygen" section here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) and lots of youtube videos you can see by searching [oxygen cluster headaches]. In those videos, Bill MIngus is particularly helpful, but you might find others you like more.

edit to add: posted before responses seen Read these: Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic) ...no real typical cost, vast differences in coverage. had various ins over the yrs, if no coverage i met and made agreement with O2 shop Mgr and self paid. $10-14/e-tank. if covered they billed $42/e-tank and my co-pay was $14 (you can pay me now or you can pay me later). i forget what the M-60, my favored tank, cost. supply chain stressed or broken right now due to Covid, call around for $ and availability. i picked up and returned my own tanks which helped my relationship with shop. if delivered, get to know your driver and treat them like the valued partner they are. frequently can and will do things for you the shop won't. a welding setup if med unavailable will cost you a few hundred to start and whatever the refill charge. MANY clusterheads go this route and save lots of $ and hassle. is the same O2 from same spigot so is safe.... When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?) ....you gotta hit the O2 fast and hard at the very first sign of a hit, any delay will slow the abort....too long and the abort will fail. i powered down a 2 oz 5-hr energy drink on way to tank. increased effectiveness dramatically. staying on 5-10 mins after abort to ensure hit aborted... Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) ....many docs don't have a clue and a disheartening number will not prescribe.....if you get one of those find a new one...preferably a headache specialist or one willing to learn what you need... ...i kept e-tanks at work and in car...allowed me to be out and about like a "normal" person. m-60 tanks at home because they lasted about 2-3 times longer. if welding tanks used, a compliment of small and large advised.. ...gotta be a non-rebreather mask..the best and a treasured possession of mine available here: ClusterO2 Kit - Clusterheadaches.com - Online Store and is a steal at $25. ...many will advise a hyperventilation breathing technique. definitely the favored and most successful but be aware other techniques also work...like slow breathing or breath and hold... or a combo. you need to try them all to find your bliss.. ...i'm sure to have forgotten something.... someone else will be along to add

Charles so your not on the o2 know then ?

There has been some study of CH symptoms developing after head trauma. One study said "CH patients seem to incur more frequent traumatic head injuries during their lifetimes when compared to migraine controls and the general population." (I can only see the abstract of this one, and it's not clear whether the authors think that these more frequent injuries directly cause the CH.)(https://link.springer.com/article/10.1007/s11916-012-0248-0) This one -- https://jnnp.bmj.com/content/91/6/572 -- is more thorough, and it seems like CH directly following a traumatic head injury can vary somewhat from "classical" CH. I have no idea how you might fit in this picture, and I think you want to treat what you have as "regular" CH would be treated, but I figure it's worth knowing that this study exists.

For CH, I think that this is the best place to be for support and help and new news!!! I might be a little prejudiced though! Hang out. Learn and contribute. We all benefit!

Apria, Apria, Apria.... call the local office make an account and rent a car and pick up oxygen... they are a national company....

Shaun n cast iron - everyone's body is different. And all of us r working towards maintaining homeostasis. So - u have to look at a whole body picture, and not view 1 little thing as good or bad. The nails curving down on sides wld mean ur bodies r running a bit hyperthyroid - which isn't problematic? Unless u have severe *weight-loss* that worries u, or heart problems (rapid or irregular heartbeats for instance). Its part of the whole picture u'd want ur doc to look at. Just keep an eye on ur nails. That can change to straight actoss in a few days.... if ur thyroid changes. If so? Talk it over w ur doc.... (n let me kno What in looking for, w u guys? R changes in the nail tips associated w chas cycles. Cast iron? As far as callouses? Do u have eczema? Do u wear holes in ur socks? R the callouses yellowish in color? And u kno? A lot of us have callouses and it just means our feet bear the weight of our bodies. Some of us just get more callouses than others... because callouses r protective. Simple, u kno? But the answers to those ??s wld help..

I share the same view / prejudice as Spiny.

Hey Spiny, When I logged back in, I was overwhelmed with the response!! The amount of support and information that has been provided is tremendous and I'm grateful to have found this community! I'm looking forward to sharing information and, hopefully, becoming a contributing member to this topic. Charles

Hey xBoss I never kept a journal, but after reading this post, I believe I will start! It would be nice to have something to refer to when asked my doctors and the such.

Hey everyone! Sorry for the late response to all that has been said in the last week! I can't begin to thank you all enough for the support and information that has been provided. I also can't believe how much attention this post has gotten as well. I will attempt to respond to all the messages in time. Thank you again!

Well said Jon.