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ClusterBusters

jon019

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Everything posted by jon019

  1. jon019

    Verapamil Treatment & 'Phantom' Clusters...?

    ….check that they didn't switch your script to ER....usually don't work.... ...and yes, but so rarely it made me laugh when it did....
  2. jon019

    Lidocaine nasal spray

    ...compounding pharmacy (and/or a hospital)...be sure the script is scrupulous cuz they'll laugh ("you are gonna do WHAT!?")....when they figure it out (easy mixing) they'll give you two HUMONGOUS bottles of 4% Lido sol you will NEVER EVER use up...be sure to take the time to educate about CH, they'll be curious....once home be prepared to place oneself in odd and precarious positions in which to insert the lidocaine soaked Q-tip onto JUUUUUUST the right place DEEEEEP inside your nasal passage (felt like my brain)...while also writhing with the beast (must be entertaining to watch)...I amuse myself with the memories…. ...if you are one of the precious few this works for: GOD BLESS you mate!....and, if so, I still got those bottles we talked about... ...but yur only gonna know, if ya give it a shot! OH...and: OXYGEN! Best Jon
  3. jon019

    New Orleans - Help request (oxygen)

    "Anyone know if you can just check O2 tanks into checked baggage? Kind of a pain in the ass, but without other options I could do it." Absolutely not...they will laugh in your face (been there) ...it's a significant safety issue...
  4. jon019

    New Orleans - Help request (oxygen)

    …..perhaps only useful for future reference.....I used Lincare travel program for trips to CA, NV, and OK...delivered E-tanks directly to hotel...same charge as home (WA)….done online...the attached link shows their NO location.... https://www.lincare.com/Location-Map/moduleId/2040/controller/Location/action/LocationList?searchState=LA NEW ORLEANS - LINCARE INC. 1533 SAMS AVENUE SUITE D HARAHAN, LA 70123 Phone:504-733-1702 Fax:504-733-1713 Best Jon
  5. jon019

    How Does End of Cycle Come?

    ...mine were like a bell curve every 6-8 weeks for yrs...slow ramp up...level off...slow ramp down.....I ALWAYS knew when the cycle was over when I got hit at the very end of the ramp down by a HUGE one. it was weird...I used to "pray for the whopper". If I was in a hurry there was always the beer test...a guaranteed yes/no on cycle end for me. I think you've said alcohol is not a trigger...so I guess the best I could say is to attempt what you think MAY be a trigger... ...mental health wise...I think it's just easier not to dwell on it (easy to say when you know your cycle...so keeping a journal helps)….
  6. jon019

    Age? Altitude? Verapamil? Zomig? Exercise?

    ….that's really good to hear!....napping is a big time trigger for many....
  7. jon019

    Age? Altitude? Verapamil? Zomig? Exercise?

    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
  8. jon019

    Humanitarian

    Yup...absolutely...belongs right next to a fella named DJ...………...
  9. jon019

    Guest users. Welcome!

    ...ok...for soma us born in the last century...while I think I know what a bot is... why oh why would a bot (or it's master) give a damn about an alternative medicine site for an ailment practically unknown to the civilized world (or, at least, to 95% of the docs I've ever been to...……………………………)
  10. jon019

    This helped me- hopefully will help others

    ...umm......well...I kinda thought that's what CLUSTERBUSTERS.org was all about...………………...
  11. jon019

    24hrs in

    great...thanks for the update... ...caffeine can be a trigger....for myself if taken outside of normal hit times it caused more frequent hits.....but if eliminated until needed it proved to be an excellent adjunct or abortive....I believe the body adjusts to regular caffeine consumption but lags at a high dose...hence the effect we need (vaso-constriction)….
  12. jon019

    24hrs in

    ...first things....do you have a CH diagnosis? ...do you have a headache SPECIALIST doc? ( this can be CRITICAL)...who prescribed the Imitrex? did he/she discuss Oxygen or preventatives or a prednisone taper to break the cycle? we need some history here to help you better...…... …."getting one" ain't gonna work.... and you'll need a prescription unless you go the welding O2 route....and a combination of highly portable e-tanks and M-60's is good plan...I used 6 and 2 of ea... ...caffeine is a vasoconstrictor...all by itself is helpful for head pains of various kinds and is frequently combined with aspirin for superior effect (see Excedrin...which ain't much use for CH hits beyond a shadow)……,.anyway, the caffeine in HIGH doses taken IMMEDIATELY at first sign of a CH hit can be helpful or even abortive for some folks... ….energy drinks have a high level of caffeine (you want 100+ mg/serving) combined with various other ingredients the most helpful for us being taurine (minimum 1500 mg/serving) which seems to turbo boost the caffeine...sometimes were all I needed...other times made the O2 much more effective. buy by price not brand name, COLD and fast better, there are sugar free versions as the regulars have ridiculous amounts of sugar...beware artificial sweetener aspartame as it is a trigger like MSG for some....
  13. jon019

    24hrs in

    ...not if used with proper technique (can be different for individuals...but easily learned what works for YOU)....enough flow (15-25+ LPM)...and the correct mask (NON- rebreather)..….saved my sanity, perhaps my life...………….. ...WAY cheaper than triptans...fast, easy, NO side effects...portable with planning ………..
  14. jon019

    24hrs in

    OXYGEN!!!!???? ...............w/an energy drink back...…………..
  15. jon019

    printed hand out

    ...having witnessed a cluster attack where every fiber of my being wanted to call 911 despite what I know....and having been witnessed having a cluster attack where I had to BEG them not to call 911 because of exactly what you say (plus no insurance)....I don't think it's practical to expect perhaps a complete stranger to witness what a cluster attack looks like ….and believe a piece of paper that says basically "nevermind"..... ...that said, I do believe it would be a good idea to carry some kind of "medic alert" type indicator for when they DO haul you to an ER...………...
  16. jon019

    Simple Technique to Abort Headaches Right at Onset!

    Holy f'ing shit.....how could I have been so stupid to miss this for 38 years??????!!!!
  17. jon019

    The 'driven' gene?

    ...something more basic....."survival".....
  18. jon019

    I need help from the veteran survivors of CH

    ^^^^^^^everything CHf said!...so I'll repeat for emphasis... ….that is a weird and potent mix yur on....if the Indo works it changes your diagnosis and you can drop 2 of those right away....be aware of potential stomach issues and talk to your Doc about remediation measures...problem now being you won't know which of the 3 is effective. normal practice is to try the Indo first and alone to RULE OUT hemicania continua.... ...if truly CH....GET OXYGEN (the BEST abortive)….it has changed/saved many a clusterhead's life and sanity (decades ago for me)...add an energy drink (minimum 100 mg caffeine/1000 mg taurine) at the first sign of a hit improves efficacy for me and many... NOTHING to lose with the D3 regimen (except possibly ALL other measures )...and its good for ya CH or not.... ...totally understand the fear of 'chronic'...I was same..... but having been both, the difference was just attitude...once ya got a plan and the tools it's just different forms of the same beast to manage...was episodic for 23 yrs, it helped me to think of episodic as just being "chronically periodic"....perhaps just a semantics game, but "it's all in yur head" anyway, right? Best Jon
  19. jon019

    Injections

    ...since I no longer use I don't pursue local access.....internet searches show these below...which I do NOT endorse or know if valid...only link... ...the number of people who report difficulty finding, if at all, tells me it may be a fruitless search....which is really too bad....and puzzling ..if I was a conspiracy theorist I might think the drug companies would rather sell the DAMN expensive statdoses over the more efficient vials... https://mms.mckesson.com/product/467246/Glaxo-Smith-Kline-00173044902 https://www.healthwarehouse.com/sumatriptan-succinate-6mg-0-5ml-vial-5-pack.html https://www.txvendordrug.com/formulary/search/drugs/imitrex-6-mg05-ml-vial
  20. jon019

    Injections

    Voc...have you looked into getting suma in vials (6 x 0.5 mg)? No tear downs required and you can inject exactly what you need with diabetes needles. Used to cost me the same ridiculous price as the statdoses…. but with MANY more aborts. avoided the HAMMER of a full dose (which I believe is side effect heavy and contributes to rebounds)... …..eventually found my way to Zomig 5 mg NS....all the benefits with nuna the side effects for me....added bene of 18 hr 'free " time...…..
  21. jon019

    Chlorpromazine/Thorazine for CH?

    Hi Stuart…..with a reference that old and minimal, if any, reported efficacy (saw discussed years ago) this sounds like "let's throw a really powerful drug at a problem we don't know what else to do with".....I'd do oxygen, energy drinks, D3, busting and/or perhaps a prednisolone taper and verapamil before I even thought about this stuff.... ….side note...I know a old pharmacist who worked in a mental hospital...he and his colleagues used to joke that the only folks who could handle thorazine were the ones crazy enough to need it...…………...
  22. jon019

    Just diagnosed

    YUP!
  23. ...nothing to add to that...…………...
  24. jon019

    Emgality Shot for Episodic Clusters

    ….Henry Ford used to say " whether you think you can...or you think you can't...you're right"....always a good idea to solicit opinion...but there is only ONE way to truly know....every med and every strategy I ever tried I went in believing "THIS is the one"....that way I knew if it didn't work it wasn't because I didn't give it a FAIR shot....
  25. jon019

    New need info

    OXYGEN....………………………….
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