G'day,  Dave,  and I can promise we're perfectly happy to listen to your rant.  That's why we are here.

I can also promise that many of us have experienced the identical signs, symptoms and absolute hatred of these rotten things though it's still worth pursuing it through proper medical channels to ensure it really is Cluster Headaches rather than something more serious.

A good neurologist should be able to pin it down.

Twenty five years of practice means you've also tried all manner of cures but it's well worth looking at the buttons down the left side of your screen for the one marked  Oxygen Info.  Used properly at the first sign of a hit it's the first port of call for so many ClusterHeads.

While you're strolling around our happy little boards here you'll also see reference to various pharmaceuticals like verapomil, Immitrex and even Prednisone tapers which are all part of the arsenal which can be fired at this monster.  All to be done through your doctor,  of course,  but we'll help all along the way.

Then there's the likes of our famous Vitamin D3 regimen which was developed right here by ClusterHeads for Clusterheads.  Cheap as chips and showing remarkable results.

There's also the matter of those closest to you and assuring them that Clusters are real and you're not simply going mad or seeking attention.  We love our supporters and reckon they are gold.

Any questions just ask because we're all Clusterheads here and perfectly happy to help every inch of the way,

Brian down under.

Hey, Dave,  do you mean up to 6 hits a day?  That's a bit high for CH so it might be worth asking your neuro about the possibility of you having more than just the one headache syndrome.  Quite a few of us do.

The likes of CPH are remarkably similar to CH and certainly hit 6 times a day,  or even more,  but are quite easily controlled with a short course of a common medication.

Just a thought for your consideration,

Brian down under.

I'm certainly no doctor,  Dave,  but happy to help out where I can.

Prednisone in high dosage isn't real good to continue for any length of time and is usually prescribed as a taper with a big start,  then tapering down as another preventive-type medication is building up enough to have a good effect.  Verapomil is often begun with a Prednisone taper as it's a bit slow to get going on its own.

As to other headache types,  there's hundreds,  but a few of them can easily be mistaken for CH and even more easily if you happen to be a ClusterHead to begin with.

CPH,  or chronic paroxysmal hemicrania, is one of a group of headaches which feel just like a cluster hit but happen far more often though with less pain and each hit a shorter duration. 

Happily they're easily treated with a short course of Indomethacin and I've long wondered if those new to Clusters shouldn't be offered a course of Indo as part of their diagnosis.  If it works,  it ain't CH.

These are all personal opinions,  of course,  but perhaps you're neuro might consider the larger picture and at least it opens up more options.

As to a  'cure'  out of nowhere,  have you heard the luck many are having with Red Bull of all thing?  Chugged down at the first hint of a hit,  lots of ClusterHeads are getting quite good results from it.  Sounds awful,  I know,  and it's something to do with the caffiene/taurine mix but you can't knock it if it works!

All the best and keep wrestling this dragon.  Might not help but it sure makes you feel better.

Brian,  sitting in the beer fridge because it's too hot anywhere else.

One thing I forgot to ask about was, have you ever heard of someone coming off high dose Prenisone developing a rash? About 3 weeks after I started tapering off of it I started to get a rash with red bumps on one side of my waist and torso. I asked the neurologist, and 2 different doctors and they all had never heard of prednisone causing a rash.
I did do some research online and found several people with the same rash while on/coming off prednisone.
My regular doctor prescribed a anti fungal pill and cream which is helping a little but its not completely gone away.
Just curious,
Dave

Jon,

Thanks for the info - I will check out some other sites to see if there's anything about it.

I didn't even think about those little small bottles of Energy Drinks - Brilliant Sir! I think I've got a couple around here somewhere.

Much appreciated,
Dave

Don’t give up on the O2, sometimes it’s a struggle for me to get results from O2 but 90+ percent of the time it’s a Godsend.

ABSOLUTELY!...i could have written that.....

Sumatriptan is my go to (at night, only when all else fails).

...consider giving Zomig nasal spray a try.....for me none of the horrendous side effects of suma....5-8 min effectiveness 99% of time....18 hr painfree window. same price as suma tho...and insurance same butthead limits. maybe get a script for both...my specialist neuro knew how to play ins denial game and script both at same time. just be sure to separate use of different triptans by 24 hrs

Good luck Dave and welcome. Definitely consider Batch’s D3 program.

...definitely do the D3...along with dialing in O2, energy drink enhancer and D3 i managed....with Zomig only as last resort abort...

   

Jon, thanks for the tip, we’re often away from home for days at a time which can be a scary proposition. Portable O2 tanks only have so many aborts in them and I only use sumatriptan for a good night’s sleep. Having another tool would be awesome. Fortunately, the only side effect I experience from sumatriptan is a sensitivity to hot water, plus the most I ever take is one 100mg tab cut in half before going to sleep. Daytime hits (less common but always a threat) are handled with O2. Can’t tell you how many times I’ve had to pull over and start huffing on my O2.
  Sean

I second the Zomig recommendation, but Lordy is it expensive.  I spent well over $10k on Zomig in 2014 as insurance would cover only 4 doses every 60 days.  Keep at it.  Something will work!

...yeah, all them dang triptans are ridiculously expensive. my employer used to switch insurance carriers every few years...always a new battle to get oxygen and triptans. for others reading this: an advocate doc (HA specialist if you can find) is vital. she wrote a flaming "letter of necessity" that got me 18 units/mo Zomig at one time (didn't need or use that many, but SURE DID stockpile). doctors hate having insurance droids practice medicine w/o a license.....worth a try....and appeal anyway any denial, sometimes those are automatic, and an appeal can work....

Sean - jon - Yeah I have no idea why the O2 stopped working? I've tried for the last 4 years with no luck. Unfortunately my insurance doesn't cover oxygen, and it started getting expensive paying for tank(s) that weren't working. I've tried several different times throughout the past 4 years.

jon -Sumitriptan injections are the best thing for my headaches - Usually get quick relief, about 98% of the time. Sumitriptan tablets work pretty well, as long as I take one in time. Sumitriptan nasal spray is good, although not as fast as the shots. I'm currently taking Onxetra Nasal Powder which works pretty good, but you literally have to blow it into your nose! I wasn't sure about it at first, but you get used to it. And let me tell you it makes an interesting sound when you blow into the device - my wife says it sounds like I'm playing a kazoo whenever I use it - Lol - Zolmitriptan tablets are about the same as the Sumitriptan as far as effectiveness. The very first medicine I tried back in '05 was Cafergot and it was ok. I used that for about 5 years and after I retired from the Army in '08, the pharmacy on Fort Campbell told me they had stopped making it. Fast forward to '18, my Neurologist said it was still available and I've been using that as well. I know not to mix all these medications, its just nice to have several different ones available.
Unfortunately, as everyone probably already knows, my insurance only covers limited numbers of each prescriptions.
Sumitriptan shots: 12 boxes every 3 months
Sumitriptan Tabs: 18 pills every 3 months
Zolmitriptan Tabs: 9 pills every 3 months
Cafergot: 30 pills a month
Onzetra: 1 box of 16 nose pieces every month - the good thing about this is, for a migrane its recommended using 2 nose pieces for every headache, 1 in each nostril - but for CH I've figured out if I only use 1 nose piece in my left nostril (my CH side) I can get 16 CH's worth of medicine. And if 1 doesn't take care of the headache, I can just use the 2nd dose and not worry about over dosing.
My wife just started Qulipta and Ubreverly for her migranes and so far they have helped her. I've tried her Ubreverly twice and it has worked. My PCM tried to prescribe them for me, but my insurance wouldn't approve them without being prescribed by a Neurologist. I go see mine this week so we'll see what happens!
I finally figured out about 5 years ago to stockpile abortive meds even when I'm not in a cycle - Duh! Don't know why it took so long to realize I should do that! Hell, I even have part of my gunsafe stocked with shots, just in case there is a fire. I know my insurance wouldn't replace any meds lost in a fire!

I really appreciate everyone's advice on different techniques/medicines to use for this God awful disease? Condition? Hell, I don't even know what to call it, except that it sucks monkey balls!

Take care!
Dave

Dave,  regarding the Sumatripan shots and the dreadful expense,  there's a couple of tricks around here that will allow you to get two or even three shots for the price of one as it's generally believed a third of a dose is easily as effective as a full dose.

Don't know how to do those link thingummies,  nor even if it's relevant to your situation,  but no doubt someone will give you more information just in case it matters.

We fight on together,

Brian down under.

Dave,  there is a way to get two or even three shots out of those new injectors and I'm chasing it up for you.  Will get back to you soonest,

Brian down under.

Jon - I'll definitely check those out.

Brian - Much appreciated.