jon019

DUCKS! BoF...best/funnest pets I ever had...they'd follow me around and I'd point out slugs (like they really needed the help...not!)...line 'em up with their beaks and slurp 'em down like spaghetti.... after a while I'd have to bring water to wash off the slime so they could open their mouths...the whole enterprise was hilarious....

..yeah that does sound familiar...but if intractable I would want to at least try before they drill a hole in my head (been there) ...any chronics out there who have?

...so how are folks with chronic CH supposed to even try it.. as there is no apparent end of cycle?...and I certainly wouldn't expect any insurance to approve indefinite usage....nor would that be medically wise anyway....

.....dunno if I'd call it a "lie" spiny...suspect it's more "anecdotal" from the medical profession who think they've noticed fewer 'old" clusterheads (or indeed WERE lying to us to shut us up cuz they couldn't help!). ... ....just theorizing, IF true, it could be for a number of reasons.....it has always been a fervent hope of mine...kinda a "bonus" of aging to look forward to...and I've wondered if it would be related to "hardening of the arteries" or other infirmities/changes of aging that alter the hypothalamus ....and/or the ways our bodies react to potentiators.... ....only a study that no one is going to do (batch's survey may be the closest, but I've never seen him discuss age distribution results) would answer this...in my case, went from crushing episodic for decades to chronic that was much lesser in intensity and easier to manage that was possibly due to aging or, my opinion, verapamil related (another anecdotal based thot ( episodic>chronic) that we've discussed frequently on another forum)....to an even lesser chronic that I attribute to chemo (or, again, maybe aging).... ..I do agree with Moxie...and I think it will be related to D3 and busting in some way(s)......

...hi d-rock...glad ya found what works...this is such an odd affliction that while many have found your same success with vigorous exercise (at least aborting a hit) for some the same is a trigger...go figure! have you tried oxygen?... it's way more convenient... best jonathan

...I share CHf's consternation...been hearing same for decades...which is why you need a HEADACHE SPECIALIST....most neuros are clueless (his O2 comment proving same)...in my experience, a specialist knows exactly what a cluster headache patient is going thru and will FIGHT for you with insurance droids...this includes O2 and triptans. I had to fight 7 health ins companies for one or both... and won every time...it actually helped the battle with the beast in giving me a dragon to slay.... ....and BTW, an Indo trial is not a bad idea IF the diagnosis for CH is only a maybe.....give it a good shot tho....

Welcome ff, ...it's a short needle...I'm skinny and went for the thigh....mostly used insulin hypos and drew 2 mg from vials...switched to Zomig NS 5 mg as it was as effective w/o the ooky side effects and no jab...suggest you ask your pharmacist (they have Doctorates now btw)... best jonathan

....geeez....cut the drama and insults...put.up.or.shut.up...we will listen to anything...

redneck bag.....see Batch's post in this thread... https://clusterbusters.org/forums/topic/6632-demand-valve-o2/?tab=comments#comment-65652

...hmmm...well OK....but I just watched Auburn beat Alabama 48-45....and I could watch 'bama lose every day of the week.....bless me father for I have sinned?

fwiw...if you can get e and/or m-60 tanks (or something like them) the whole world opens up...I worked/travelled for over 30 yrs with CH cuz I had to...tank in the car, tank in the office, tanks at home and a couple of clustermasks from ch.com. once my employer and colleagues understood what they were for it was accepted that Jon would disappear for a while occasionally....no big deal. sorry for any presumptions...and all situations are different...but taking the mystery out of my condition and needs relieved THEIR anxiety....and made my career possible... ... D3 or busting may make this all moot....

hi csa...welcome, ...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro).... ...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapacitated by a hit... ....my idea of beauty is an O2 tank with layers of dust...the peace of mind of availability is priceless (what would you pay to stop something a million times worse than child birth?).... and you already know it works... ....somewhat typical to get worse over time from initial onset...but that is NOT a given... .....CH is only going to increase your anxiety/depression...but also could be unrelated...get that treated regardless of headache diagnosis.. best jonathan

...and once you learn the side effects for a med, if any, you can adjust accordingly. I know one clusterhead who was able to find some success with Topamax (topiramate)...aka dopeymax ....by taking at night before bed...thus avoiding the majority of debilitating side effects most report... ...let us know how Emgality goes for you!....

......actually an excellent question...it CAN be VERY specific and important to the med in use ....best bet to ask your Pharmacist (or any pharm, seems they're in every grocery store). they get doctorates (about 8 yrs of school) these days.... and (unless it's Costco and they can't be bothered) are more capable than most docs providing just how much detail you want/need..... ...if you get your meds mail order, they have pharms on staff specifically for patient consult...besides a good practice...it's the law!

...typed before I saw Pebbles post...don't have the energy to revise...1000% right , as usual...the first thing out of her mouth should have been OXYGEN! (yes?)....headache docs divided on verapamil...many have been helped tremendously but high doses usually required, which can lead to unpleasant and/or dangerous side effects (me, none).... .....don't it feel good to have headache specialist doc?....for CH most regular docs (and most neuros) are only good for the scripts we need (VERY important as it's hard to get into specialists)...that is, if they are willing to LISTEN to what we need... ...methylprednisolone explained to me as prednisone on steroids...did an IV plus a taper twice...miraculously (it seemed) the first time it actually broke a cycle MID cycle...the next time nada....moved on to safer alternatives afterwards... ...Meloxicam a strong NSAID...those help some with shadows, but rarely help for 'regular" hits....perhaps the combo more effective (I'm doubtful)...the makers of Imitrex combined it with naproxen (another NSAID) to make a "new" product.... and delay generic competition for Trex..."lovely" folks, those.....

....hi nick...try https://ouchuk.org/......really good folks that know the system in your part of the world....

....no mirrors in yur house bro?

....personally, I'd crawl thru hell in a gasoline suit to get O2...saved my sanity, perhaps my life...and got me as close to a "regular" life as a clusterhead can get.....NOTHING to lose but pain.............

...yup..be prepared...I got yanked once for having a can of salmon in my bag......let me go when I offered to eat it...maybe you could pop a few D3 for 'em... I think I would classify my GP as passive aggressive, and not very aggressive. When I told him about my challenges, he liked the idea I had about stockpiling. He's a GP, and easier for me to get an appointment with than the Neuro. He's really learning about this as I do. He won't go too far out of his lane, but he'll give me just the amount of support I need, nothing more. yeah...I was thinking of the neuro...if they have CH experience they will know this shit...got one of mine on board and pissed....she wrote a flaming letter I'd dearly love to have now...got me 18 doses of Zomig/mo !! (didn't even need or want that many, alas short lived when ins. changed). her partner (my main) on the first visit looked me in the eye, put her hand on my arm and cooed "now then my dear, you WILL want to STOCKPILE in between cycles"...I was flabbergasted (cuz that's survival mode for cluster heads.... and she got it !).... ...it's called STRESS...for some a real a prevent, for others a trigger....Bob G tag line on another board: "stay stressed. never relax. never sleep. ever" I would add: say goodbye to beer....sheesh, the pain of CH is just ONE part of this nightmare... BTW...thank you for your service!

Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest. Hiya Signal...glad ya found us!...post away, sometimes just saying this stuff is better than any med...and we REALLY get it... .....I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition......Maybe I'm wrong, but it always felt like it was worth looking into. ...I think it's a valid concern....and not just for CH....we are all exposed to all kinds (and ever increasing) forms of electronic "waves"... and someday they may look back on us with derision and amusement at our cavalier ignorance...like we do for the Roman's drinking out of lead wine glasses. Worked for a company that used a 50k watt microwave to thaw fish blocks for processing...BEAUTIFUL stainless machine...30' long and very efficient. The company rep used to regale us with stories of microwave history....like that the favored watch duty onboard navy ships was next to the new gizmo (microwave) because "it's warmer!"...can you say cooked liver? He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. ...some folks can use the pills as a prevent if they know their cycle well and get the timing figured out....but they indeed be worthless to most as an abortive. A standard treatment would be a prednisone (or methylprednisolone IV) and/or pill taper to break a cycle while ramping up verapamil dosage (10-14 days). Sweet spot reported to be 480 mg/dy of immediate release type (lesser, but not zero, reported success with sustained release). Some go much higher...I was over 1000 mg/dy in high cycle. Heart issue side effects potential MUST be monitored. Know not the ramifications of mixing atenolol (Tenormin) and verap. One of the first meds I was ever prescribed for CH was atenolol...didn't do squat. Don't waste your time on Inderal (propranolol)..some success with migraine but not CH.... ...many find that the 6 mg suma injections are too big a hammer and 'hack" the injectors to get 2-3 mg injects instead... which works just fine with fewer side effects and a lesser chance of rebounds. vials of the drug are sometimes available (ask your pharmacist) where you can use exactly the amount that works (using insulin needles)... ...my abort of last resort is Zomig nasal spray (5 mg)....for me no side effects, no rebounds, and an 18 hr hit free window....added bonus of insurance would approve suma and Zomig scripts at same time (tho not enough of either)....caution to NEVER mix triptans within less than 24 hrs.... I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent. ...same hard earned aha moment for me....when I stopped screaming, cursing, thrashing, hitting myself and anything close, and working myself into a frenzy I was able to cope much better. pain was the same...my reaction to it made a HUGE difference...adrenaline at the WRONG time is not your friend..... I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. do whatever you need to do to try the D3 regimen...it may make everything else unnecessary! haven't heard of TSA concern with the necessary pills...but I used to carry all my scripts.... and photo copy of the vitamin bottles with pills shown would be a good idea.... I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. well...your doc sounds like he/she knows what they are doing so I am surprised they didn't INSIST on OXYGEN....tis the accepted standard of care first line abortive. O2 has saved many a clusterheads sanity, maybe life. not sure what you experienced at the O2 shop... but you do need a script...and if your insurance doesn't cover...you can offer to self pay. if that doesn't work welding oxygen (same as medical) is your next option... ....I used to travel in cycle...using Lincare travel service I was able to arrange for oxygen tanks at my hotel...same service, same price. you probably already know that the airlines won't allow you to board O2 tanks.... I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day. ...see previous comments re hacks and vials (i could get 15 injects out of the 5 vials)...it IS a powerful med not to be trifled with...especially as you age.... Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail. ...if your doc has an advocates heart (and a healthy disdain for insurance droids) have them write a 'letter of medical necessity" describing your "intractable' cluster headaches and the need for "X" number of vials/dose packs....denying you the scripts your doctor has prescribed without seeing and evaluating you is called practicing without a license....most docs I know are a little more than touchy about being questioned on diagnosis or treatment... So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. Stockpiling!!!..... best jonathan

Hi Desty...welcome...that's quite a ride you describe...since there are no questions, did you want us to comment or are you just reporting? best jonathan

...winner winner chicken dinner............... ...welcome aboard... best jonathan

....your doc needs a haircut......and a clue!!