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Back with another update. The 2nd prednisone taper (or just coincidence on timing) ended the last one in October of 2017. Enjoyed a 21 month PF remission, until it ended last Friday. Had attacks at 11pm, 4:45am, and 8am. Unusual, as my cycles have always started gradually with one attack every other day, and ramping up to 2-5ish attacks / day within about a week of the start. I've never had 3 within a 9 hour window like that right at the beginning of a cycle. But, one thing we all know is that CHs have a way of changing up on you just when you think you figure them out. Started my Prednisone taper Saturday at noon. 60mg x 2 days, 50mg x 3 days, 40mg x 3 days, 30mg x 2 days, 20mg x 2 days, 10mg x 1 day. Day 6 of the taper today, so, started up on the Verapamil - 80mg x 3 / day (pretty low dose). So far, no attacks since starting Prednisone on Saturday. I do also have my home o2 delivered already, and ready to go. And, I bought a regulator that goes up to 25L/min. So, will be able to use a higher flow rate vs. the 15L/min that I had previously. I have my Zomig ready to go as well; but, am going to try to only use that if out, and without access to o2. Pretty confident that I started getting overuse headaches due to the zomig on one of my more recent cycles. So, I'm proceding with caution on that one. Works great, and I've used triptans to abort for years. But, if I am able to successfully abort with o2, then that will definitely be my preference (still new to o2). I have an appointment booked with my neurologist on Tuesday of next week; just to see if he wants to make tweaks to anything. Or if there are any new advances that he suggests trying. I suspect he will stick with the same, to try to figure out exactly what does / doesn't work for me. If he does change anything, my guess is that he will up the Verap dose. Especially knowing that he likes to do things systematically. Not sure what to expect with this taper, as Pred did completely abort a cycle for me once before, then didn't work the second time, then the 3rd time, it was a 2nd taper on the same (unsuccessful) cycle; towards the end of the cycle. So, I'm not sure whether it was timing or the Pred that ended it that time. Last time that I went to see my neuro (2017), I asked about the D3 regimen, as well as busting. He suggested holding off on those approaches until we see if the current treatment works / doesn't work. He wasn't suggesting that either were a bad idea. He fully agrees that there are a lot of people finding benefits with them. But, I know he likes to take things one step at a time, so that we know what it is that's working, or what's not working. I'm not a fan of being on all sorts of meds (pred, verap, etc.). But, like all of us, I also would do anything to avoid the pain of these stupid things. I'm ordering RC now, just so that I have that option available to me. In case the taper doesn't work, and perhaps as a maintenance dose between cycles. And will ask him again on Tuesday about D3, and if he can order the blood tests to get it setup. Will try to update again, as things progress. Whenever I'm in a cycle, I lurk the board like crazy; reading everything. And then when my cycles end, I tend to try to completely block things from memory, and don't find myself visiting the forum. But I realize that it's equally important to share my experiences, as we all benefit from knowing how things go for others. Not just treatment wise, but, also just to know that others are suffering the same way. 17 years for me now. Happy my remission periods seem to be getting longer. But, have found with longer remission periods, the cycles tend to be a lot worse (more and stronger attacks). Will see how things go.

Hey Andy! Glad that you found us. Falling barometric pressure is a main trigger for me. And, I live on a little mountain! So, going down the mountain after the Fall Equinox is problematic. Going down is fine - coming back home can be a bear. I attribute it to less pressure out = more pressure in. Very stupid simple idea. but how I look at it. It can work differently for others from my reading. Your doctor is correct about O2 being difficult to get through insurance. But, there are ways to push for it. I suspect that someone will post the piece on how to go about it here soon. I am very glad that she is pushing for the scan first! Rule out other conditions first. If you come up blank there, you can set up a welding rig and bypass insurance. Set up costs a bit, but the monthly outlay is cheaper than Medical. So, if you have to foot the bill, that is an option too look into. You should look at the D3 Regimen. It is well documented and has worked wonders for a large percentage of CHers'. It consists of a list of vitamins you take daily with the aim being to raise your D3 levels and reduce inflammation. It has helped many go pain free and others with a reduction in severity of hits and a slower come up so you can treat it faster and more effectively. Or get home before you can't! I would suggest getting your D3 level checked out as well as the scan.Many of us have low D3 levels in our blood and returning that to an acceptable range has been pretty magical for lot of us. Batch is the member who has done all the work, with the involvement of physicians along the way. Minimal cost and no insurance in the middle. Aging out has long been a statement among doctors. I believe that the oldest known Clusterhead is around 90+. We have several members who are in their 70's and still have active CH. I had a great remission that lasted ten years. I started visiting the mountains and surprise - the beast is back! I cope by taking some caffeine at the start of the return trip. If there is no falling pressure due to weather, I can get through fine with that for most trips. A two lane mountain road is no place to have a hit. ATB and keep asking questions!

Welcome Andy...sorry ya had to find us...…. I was diagnosed with CH this month. I kept thinking I had sinus problems because of the stuffy nose and pain behind my eye. Looking back over the years, I now realize that I may have been experiencing CH for years, but now, at age 62 it is much worse! They started when I got home from hiking to the top of Mt Kilimanjaro (19300 ft). DANG....for most of us the fervent wish/dream/fantasy(?) is to age OUT of CH...it's rare to age in.....tho I think you are probably right that you've been a clusterhead for a while now. Your activity level or some other action may have been protective. Elevation change and/or barometric pressure changes are well known/common triggers... My neurologist has prescribed low dose of Verapamil and Zomig nasal spray (which I can't take until my MRI has been read). She said getting Oxygen in nearly impossible. Low dose (which is?) verapamil is generally worthless...the sweet spot reported as 480 mg/dy immediate release in divided doses....some go much higher (I was over 1000/dy in high cycle). Can have cardiac effects which MUST be monitored... and may negatively effect your mountain climbing. Was quite effective for me til I dialed in the O2 use and possibly helped by D3 regimen.... That is a REALLY dumb thing for your doc to say about O2... as it is medically accepted as THE best first line abortive. Relatively inexpensive, easy to use, NO side effects like verapamil, portable (E tanks). Find yourself a headache specialist...many (most?) neuros are clueless when it comes to CH. I had an eminent brain surgeon ask me about using Inderal for Ch....said "yeah doc, 30 yrs ago and it didn't work then"...……... Zomig NS (5 mg) is my abort of last resort...expensive but 99% effective w/o (for me) the nasty side effects of Sumatriptan.... An energy drink or REALLY strong coffee at first sign of a hit is effective for many....helped O2 work better/faster for me... The only thing I have found that stops the CH is 16 minutes running on the treadmill. Even when I wake up at 1:00 am, it works immediately (forget about sleep for awhile). Vigorous activity is definitely an effective strategy for many clusterheads....but it does become a convenience issue....some really unlucky folks get triggered by exercise... Get yourself some OXYGEN...even if you have to get it from the welding supply...start the D3 regimen (good for ya even w/o CH....) Best Jon

Welcome to the community Andy....sorry you had the need to join us though! Looks like just about anything I'd have to say has been addressed by others.....as far as age goes.....I'm one of the 70 somethings here and my last cluster activity was early Spring of last year shortly before my 71st birthday.....a doc once told me I'd outgrow them in my late 50's so I'm now wondering what part of my late 50's he was referring to! I will reiterate others O2 comments though, screw the docs and the oxygen suppliers if you can't get satisfaction......as Spiny stated, many of us have used welding oxygen longterm with no ill effects....costs between 3 and 4 hundred bucks to get set up with a large tank, reg, and the Clustero2kit mask then 20 to 25 bucks for refills/exchanges.......O2 is a clusterheads best friend!! Dallas Denny

andy', you've received great advice from several of the best advisors here, and I see from other posts that you're following up on it. DO NOT be deterred from getting O2. Your doctor has started you on the right path, except for surrendering much too easily regarding oxygen. I tried to put the various things I know into one document, and you might look through it for other info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ That post also includes the info that is in the "New Users...Read Here First" link at the top of every page. You might or might not be ready to consider busting now, but it will be good for you to know about it.

I appreciate your comments! after I posted I went to bed, slept 90 min and back to the treadmill. Breathing fine now, no pain.

Hey Andy, You're not alone here. I experience relief when I go running, but if I don't run long enough, it will continue build... 30 minutes is generally my sweet spot. If you have an oxygen tank, you can inhale enough oxygen to abort the attack within minutes and you won't even have to turn on the treadmill. Pain Free Wishes!

O2 doesn't need a flame to spontaneously combust with hydrocarbons. I know lots of people do this, so I'm not knocking it. Just wanting people to be aware they should be very careful. Example: Say a mechanic comes in with oily hands and is getting hit.. He goes for the bag and bang... He's on fire in a second. Hydro carbons are all around us. Again I know lots of people do this without issue, but just wanting there to be warnings also. Cheers, J

I'm booked... See you there. This should be a hoot! V/R, Batch