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jon019

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jon019 last won the day on December 10

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About jon019

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  1. jon019

    14year Episodic CH'er with Breakthrough

    ...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
  2. jon019

    Sumatriptan Injection Site (Low BF%)

    ...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....
  3. jon019

    Sumatriptan Injection Site (Low BF%)

    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
  4. jon019

    What if there WAS a CURE?

    ....geeez....cut the drama and insults...put.up.or.shut.up...we will listen to anything...
  5. redneck bag.....see Batch's post in this thread... https://clusterbusters.org/forums/topic/6632-demand-valve-o2/?tab=comments#comment-65652
  6. jon019

    Non prescription Abortives

    ....when caught w/o O2, hyperventilation alone has helped me on occasion....definitely been helped by energy drinks, either alone or in conjunction with O2....but be careful not to overuse as caffeine can cause rebounds and, in my case, ineffective unless I restricted use to only as an abortive for hits, or timed to expected hits...
  7. jon019

    Kings of pain

    ...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?
  8. 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....
  9. jon019

    Trying to understand my experience

    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
  10. jon019

    Emgality Shot for Episodic Clusters

    ...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!....
  11. jon019

    Emgality Shot for Episodic Clusters

    ......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!
  12. jon019

    New cocktail

    ...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.....
  13. jon019

    Getting treatment in Scotland

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