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ClusterBusters

jon019

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Everything posted by jon019

  1. jon019

    Getting treatment in Scotland

    ....hi nick...try https://ouchuk.org/......really good folks that know the system in your part of the world....
  2. jon019

    Kings of pain

    ....no mirrors in yur house bro?
  3. ....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.............
  4. jon019

    New to the group - some observations

    ...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!
  5. jon019

    New to the group - some observations

    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
  6. jon019

    Living with episodic CH.

    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
  7. jon019

    New here and super happy to be here

    ...winner winner chicken dinner............... ...welcome aboard... best jonathan
  8. jon019

    New - Looking for Support

    ....your doc needs a haircut......and a clue!!
  9. ....check your journal...you know, the one you keep on when, where, how hard, how long, activities, eats, stress, weather, etc..... soes you (and maybe a good doc) can figure this out (and then stop journaling)....cuz it sounds like maybe there's "something" happening one day but not the next (like weekend headaches from no caffeine)....we call 'em "triggers"... ....another thought......if yur fairly new to CH it could be your "pattern" has not settled in yet...for some it takes a while (1 yr for me)................
  10. jon019

    New - Looking for Support

    ...oh...dang...forgot to mention energy drinks.....minimum 100 mg caffeine/1000 mg taurine at first sign of hit or on the way to O2 tank...great for shadows (small hits) and aborts for some folks...made O2 better for me....
  11. jon019

    New - Looking for Support

    Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it. If your doc hasn't suggested/INSISTED the "standard of care/#1 abortive"...which is O2... time for a new doc....preferably a headache specialist....O2 has saved lives and sanity in clusterville.... It sounds like it gives moderately faster relief, which would be a godsend. .....how's 5-10 mins 90% of the time for me.....without ANY of those nasty side effects you mention...relatively inexpensive.... easy to use...way more portable than non clusterheads will tell you...can be obtainable by self pay if the insurance won't cover....from welding supply shop if not.......... I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. ...a "typical" protocol would be prednisone to break a cycle while the prevent kicks in (10-14 days)...doubling up with two preventives (Verap and Depo) is unusual and I would say lazy...but then I do not know your med history so there could be valid reasons for that (he says doubtfully).... .....what is the verap dose (6 x 80 mg = 480?).....that would be a recognized 'sweet spot" amount...many require much higher (I used over 1000 mg/dy in hi cycle)....if you ever figure a pattern try timing the doses just prior to expected hits... ...if ya gonna use a triptan you'll want injectable or nasal (i use Zomig nasal spray 5 mg) as a last line of defense when all else fails...in my case, the Zomig has few, if any, side effects, no rebounds, and a long half life compared to sumatriptan....pills are worthless as an abortive and require exquisite timing to be at all useful as a prevent.... ...you are in the right place to learn about busting..... ....the D3 regimen could make all of this moot...do it now...it's good for ya anyway.... best jonathan sorry to step on Bof post...typed this before saw that.... totally agree........
  12. jon019

    New - Looking for Support

    Hi Blair, ...where's the OXYGEN!?........... ...that's a lot of rocks being thrown at the beast...careful that when you succeed...and you will...ya won't know which one hit...
  13. jon019

    Cluster location in your head?

    ...follow the trigeminal nerve pathway....folks have pain in all or some areas....it can and does occur on either side. cannot speak to the pain with pulse....mine and most report unilateral steady piercing/pointed/ burning/pressured... but we all be different....
  14. jon019

    Risk / Dangers of Oxygen?

    .....for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now...... au contraire mon frere.....the scariest is "we gotta stop dickin' around with this!"....actual quote to me, and it wasn't about CH. gimme a doc who knows his/her limits any day over some version of "I'm God...lissen up!". Now then, what ya wanna hear next is : 'but we're gonna figure it out".....find ona them..... My immediate goal is to get O2 as fast as I possibly can. More questions will come soon I'm sure... ...and we await a report on the first time an O2 abort drains away the pain like water...and it will.....and you find yourself in tears of gratitude, relief, and God knows what other feelings.....cuz we have been there............ best jonathan (3 decade O2 huffer.....) P.S. welcome to the board!
  15. jon019

    Another score

    ......cool! ...the senior bus I ride has a sign: "We stop for garage sales".....I do Sally's and Will's on my own.....
  16. WOW...exactly!!!....used to almost wish for a cycle when I had to write for work....lots of us get the euphoria....but this I've never seen before... wish it was harnessable w/o the CH.....
  17. jon019

    Migraine vs Cluster headaches?

    Welcome!....try this "cluster quiz" from our sister site first.... http://www.clusterheadaches.com/quiz.html best jonathan
  18. jon019

    Boost Oxygen on Shark Tank

    ...just do the math....one hit at a typical 10-15 LPM for 10-15 min would be 16 cans (plus no mask and <100% O2)....at $15 ea that's ca $240....makes the drive down to the welding shop with a box of donuts for the boys a worthwhile trip...
  19. jon019

    After 3 1/2 years the Deamon is back...arrrgh

    ...hey art...why no O2 in SK?....can you not take up a new welding "hobby"?
  20. jon019

    Well they can now produce psilocybin in large quanity

    ….have always been a fan of bacteria/yeast/mold poop.....beer, wine, cheese, sauerkraut....pepperoni!......
  21. jon019

    Question about oxygen!! South Florida area!

    ..."Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this." ...consider yourself fortunate...a clusterhead NEEDS a diagnosis (for MANY reasons and most wait years) AND an O2 script (many ignorant physicians won't even write)...it don't matter a damn what the script says....it is the "ticket to ride"... "If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? " ...YUP...nobody cares what flow you actually use...regulators go from 0 up... "I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated" ...don't focus too much on using the "right" flow...it's different for different folks.....you'll figure it out...start high and go lower til it don't work...then go back up... ….just generally, for budgeting purposes, an e-tank lasted me 2-3 hits and an m tank 5-6 hits... YMMV... Best Jonathan .
  22. ...sorry if I missed this.... have you tried asking an O2 shop to accept self pay? Did that for many yrs....unknown if they are still willing, I'd try multiple outlets...this is dated but I paid $10/e-tank to start and eventually $14...
  23. jon019

    Shame?

    ...nope...CH is not a choice....guilt/shame is...I got pissed and made a plan and followed through.....sometimes it even worked...and when it didn't...NEW plan....
  24. ...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray. The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.
  25. Yo Ken...for future reference....I regularly travelled while in cycle and either had O2 delivered to hotel or picked up from shop myself...CA, NV, OK...same price same great service as home. I used Lincare…. but noted from website that Apria has same/similar program. They ask for 30 day notice... Best Jonathan
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