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jon019

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Everything posted by jon019

  1. Hi J...might the upgrade also include "fixing" the notifications function. I get about 1 of 10 on new posts...e.g. your first post in this thread but not the second.... J
  2. There's always the welding O2 route. Others here can explain. I ran into the same problem with several insurance companies so I got to know the manager of the O2 shop and we worked out a deal for self pay (GOTTA have the script). A few yrs ago but was $14/e tank....a little more for M's. I bought the regulator, tank caddy, and NON REBREATHER (very important) mask online …. Have you read or tried the Vit D3 regimen...very successful for many.... Energy drinks with at least 100 mg caffeine and 1500 mg taurine at first sign of hit...drank COLD and fast was really helpful... My abort of last resort is Zomig Nasal spray (5 mg)…99% success rate....damn expensive tho...and it's usually a fight with insurance. Best Jon
  3. "units' is EXACTLY the right word.... insurance-ese is like a foreign language...clusterheads gotta learn it... ...and always keep in mind....insurance companies operate in a twilight zone of up is down...black is white...yes is no...no is yes...don't believe what I say on Tuesday because it will change on Thursday. So, NEVER accept the first answer...and NEVER accept NO. It's a GAME...ya need to learn how to play...don't get mad...get busy. They WANT you to quit...DON'T. Use their own tactics on them...persistent refusal doesn't make them right...refuse to lose...sometimes they give up (THAT'S what they hope YOU do!). Sometimes they quote FALSE reasoning...as in: "that is not a medically acceptable/necessary/approved treatment for you". THAT would be known commonly as "bullshit"....because then they would be practicing medicine without a license...without having SEEN you as a patient. Get thee a willing Doc to fight for you....sometimes all you need is a "letter of medical necessity" indicating THIS is what the Doc has decided YOU need. Stuff in writing like that scares the pants off the "green eye shades" in the basement of Screw-You Insurance Company ( that's ALL of them...I don't care what the name on the bldg./website says). Vials vials VIALS...YES!! Twice the bang for the same price.....with no "McGyver-ing" involved. If your Doc...for some unknown reason... won't prescribe...ask the Pharm to sub out the Stat-doses for vials, and get a box of insulin needles. Try multiple pharmacies if necessary. As one Pharm told me...it's the SAME med...SAME price....doesn't matter to us. One way I got past limits: when the requested triptan script called for 12 ( I really needed 18)...the insurance company only approved 6. The Doc said Okayyy...watch this....and wrote another script for a different triptan (smart/savy lady). Approved without question...at a higher total cost to them than just giving me the 12 in the first place. YES...I know NOT to mix triptans...I ALWAYS waited at least 24 hrs between different meds (per Doc). It would be funny if there weren't fellow clusterheads suffering thru this maze w/o the right Doc and/or enough "pissed of and not gonna take this anymore". Best Jon
  4. *blushes* No need Moxie....another delightful post....and thanks to 15 yrs ch for the shout out... We do what we can. Besides, what's the point of going through all this pain if one can't help someone else avoid a little of it. Ummm...like WOW...what's the point indeed?! There's a whole lot more of WE(s) than Me(s)... Likewise though, I wouldn't be here today if it wasn't for this forum and the people here. For "me" it started with National Migraine Foundation (now National Headache Foundation)...who almost always did a section on CH in their newsletters (which info was publically unavailable anywhere else)...and introduced me to O2 in 1985! They really don't get the acknowledgement they deserve. Then a guy named DJ started clusterheadaches.com....which I KNOW has saved lives and sanity!!! (To quote him: "Adversity does not create character...it REVEALS it".) Then, of course, there is this little party bus right here....and ya don't need a ticket to ride! I remain a blessed, lucky....and grateful man. "Seek and ye shall find" Best Jon MG
  5. jon019

    Vimovo

    My previous neuro formerly ran the Swedish Pain and Headache Clinic in Seattle....now at Stanford University Med Center....and a well regarded researcher. Best neuro I've ever met...or at least tied with the guy who did my brain surgery last year. She advised to steer WAY clear of Naproxen for anything more than occasional use (perhaps shadows?) as it has far more negative side effect potential than benefits...she called it a "nasty med"... Re the verapamil...she was quite the fan....and depending on point of cycle I was using 960-1040 mg/dy (immediate release...not extended). Doses beneficially timed prior to usual hit times. Many reports of 480 mg/dy being the sweet spot for clusterheads (that's what I used in low cycle). 360 sounds low but your particular situation depends on many factors. Discuss with your Doc maybe upping the dose. O2 not working? How about the D3?
  6. This is just delightful news....seems I've been waiting 30+ yrs to hear something like this!!! Sorry if I missed this.....any idea when available? Any idea of cost? What is expected of the insurance companies re coverage? Anecdotal...I was treated with another monoclonal antibody (Rituximab) for a completely different condition. It's been 2+ yrs now... and while I still get the occasional hit...and frequent shadows....it is completely different (and LESSER) than the previous years experiences (which may be equally anecdotally tied to 'aging out of CH"...which I relied on in times of desperation.) Just seemed remarkably "coincidental".... Best Jon Edit to add: I ask about cost because the Rituximab cost over $10,000 per infusion....18 times.
  7. CHf....I thought the EXACT same thing...it's like offering a free car...with only 3 wheels!.....You can drive it....but it aint gonna get you very far............
  8. Hey BCJ...sorry to see this given to a CH patient without qualification for THAT condition. NOT uncommon for O2 suppliers to be ignorant of clusterhead needs(btw...DIFFERENT than venal or uncaring, since 'ignorant" is fixable). I have been a Lincare patient since 1985 (tho not lately) and found the most important part of the relationship was with the store manager. Some are perfect for the position (care, concern, compassion, flexibility)...some are just droids. I suspect Lincare corporate has tightened down on options available to individual managers...and I suspect it's a) corporate paranoia (read that lawyers got involved...SHEESH, that always come out well) and b.) the increasingly complex, confusing, and voluminous requirements that health insurance companies have visited on EVERY aspect of the health care "industry". I've had several doctors quit because of it..... and some other types of providers decline patients with particularly troublesome insurance. So....your first step should be developing a relationship with the manager (give 'em a copy of this: http://www.clusterheadaches.com/O2/index.html)...can't hurt....second would be to get a script with HIGHER lpm listed....AND the medical necessity letter you described (this can be PRICELESS in MANY circumstances beyond just O2). My script said 8 lpm...I used 5-15 without any concern over being monitored for usage. Actually, I talked them into stocking M tanks...since E tanks are much smaller and lasted only a few hits for me. Kept 2 M's for home...and 3-4 E's for 'travel' and work (one in car, one at work, two in reserve.) Regulators off the internet...don't buy or...God forbid... lease them from the supplier. I got 2 25 lpm name brand regs for $25 ea!! And a non rebreather mask from CH.com store (a PRIZED possession). Lot of folks out there go with welding O2...NONE of the problems described above....probably cheaper...just less convenient depending on your health level and living situation (e.g. 3rd floor apt....no elevator...YIKES!). Still, If you travel out of state...Lincare has an excellent program for continuance of service in many far flung locations. I used it in Oklahoma, Nevada and California multiple times. Kinda tough to drag a welding tank around....................... Best Jon PS Sorry for any redundancy...I failed to re read the whole thread.............................
  9. Hiya...welcome!...glad ya found us....and YUP....the key to education is reading....see one A. Lincoln.... Best, Jon
  10. Hi big j...I am hoping you will hear from someone with WAY more knowledge on Vit D than I EVER will have... ...meanwhile...trust your instincts...clusterheads tend to have a much more refined "feeling" about their body and its functions than most others... ...different forms of the exact same med or supplement can have TOTALLY different efficacy.....perhaps due to differing blood serum levels...or how/how much absorbed.. ...different forms are absorbed differently by the body...some directly to bloodstream (like sub-lingual or IV)... some through stomach or small or large intestine....some directly affected by the surrounding ingestions (e.g oil soluble vitamins are absorbed better when accompanied by oil containing foods) .....seniors and alcohol abusers tend to have deficient levels of B12 (my belief this deficiency rivals the near universal VitD deficiency)....it may not be absorbed well by the gut...sublingual/injectable frequently work betta than tablets.... ....in my case...extended release verapamil was totally worthless.... while immediate release proved about 70% effective ...this is a large subject...alas...I can only touch the surface.... Best Jon PS....to add...NEVER crush or chew a med or supplement without specific instruction from a knowledgeable professional...it changes intended absorption characteristics...as described above ...
  11. EXCELLENT post Craig.....I JUMPED up at that last sentence too! EXACTLY.....life's a journey...an interesting one.....CH is just another car in the train.................and they're all connected..................
  12. Welcome Dima....glad you found us...some good folks will be by shortly to reply...in the meantime.. It's strange.....for some...like myself...stress is protective...relief FROM stress is a trigger......
  13. jon019

    LSD

    First post...totally weird...we're clustrerheads...we're NOT dumb.......sheesh!...............................................................
  14. Anecdotal: I've had multiple autoimmune disorders...CH was the first....MS was suspected by several neuros....lymphoma and numerous environmental/food allergies followed. Antihistamines were helpful during my early ch career. I can't prove or attest to a damn provable thing...sometimes ya just "know"...I await the studies to affirm...... Best Jon
  15. I would just like to add...to the always pertinent, consistent, and delightful support from CHf. O2 should be the first resort provided to ANY clusterhead...from ANY physician....and I don't care what their "training". The literature is OVERWHELMED by the evidence for its efficacy!!! Myself....I would estimate over 5000 hits aborted by OXYGEN (that may be a low estimate). My sanity...maybe my LIFE....owed to a few green headed tanks..... a proper non-rebreather mask...well defined technique....and folks like you will find here and at ch.com....................................... Best Jon
  16. I got mixed feelings on "stopping" what seems to be working. Batch...our resident jet jockey does this on occasion...and I can't explain why...spits and giggles?...dunno...maybe he'll share...... While it is always interesting to evaluate whether...through trial and error...something seems to work....there are clusterheads in ditches all over the world who found something that worked...then it STOPPED WORKING...with no rhyme or reason....I'm much too much a wussie to challenge the beast to "bring it on!"....
  17. Shadows are weird...at one point a shadow...for me...was just the prelim for a hit. But as, spiny says...they don't always presage one. Mostly now, it's what I live with....sometimes all day (can I say a fella can get used to them (considering the alternative) without pissing you good folks off?) Fortunately...you will eventually learn the difference...which I really can't explain.....you just know this aint gonna progress. Odd in other ways, shadows are really hard to "kill" for me....very resistant to O2, energy drinks...and I don't waste a Zomig on one anymore...gotta save them pricey/insurance restricted bullets..........and usually a single point of pain rather than the trigeminal pathway..... BTW...guess I haven't been paying attn...don't recall hearing about ginger ...and I eat crystallized ginger and drink ginger beer regularly. Probably cuz I'm just too dumb to recognize "hey that worked!"............... Best Jon
  18. What a GREAT idea dm!! I always "hid" the ch as much as I could after years of blow offs and eye rolls. That's quite a friend ya got there! Best Jon
  19. Similar here....had a great neuro...now at Stanford. We did a methylprednisolone (described by her as souped up prednisone) IV and then taper. Completely stopped the cycle (was ECH at the time) without need for verapamil. Damned miraculous I thought...but think again jonboy. The next two times same protocol had NO effect and I refused any further attempts out of 'pred fear". DID do the verapamil for many yrs...sometimes going over 1000 mg/dy....lucky to not have any consequential side effects and it was 70% effective in stopping or lessening hits....with O2 taking care of the rest and Zomig nasal spray (5 mg) for the occasional breakthrough......
  20. ...and oh...I should have said don't give up if one pharmacy says no....ask around. And as one of our brothers here said(sorry, can't remember who)....if they don't stock it, ask them to order...they make good bucks on this type of drug....so they would have ample motivation....
  21. ...if the doc won't prescribe vials (the only reason I can think of would be excess caution re possible overuse).....ask the pharmacy to sub the vials for the statdose. As one told me one time...."same med...same price"...just need a box of skinny needle syringes. ... ...price has come down since I Iast used suma...was $600.... ...might want to consider Zomig nasal spray (5 mg)....pricey but 99% effective/rapid for me w/o the "ooky" side effects...and no rebounds Best Jon
  22. Welcome!!! Glad you found us..... Best Jon
  23. I believe it's inflammation of the trigeminal nerve (the source, at least partly, of our pain) with branches exactly as you report (it's huge). When hit hard even my hair hurt.....which is hard because I'm bald. Actually, it was one of the few things I could say to "civilians" that they actually got: "gee, it must be bad if even your hair hurts!" Try some ice or a bag of frozen peas or a cold shower.... Have you had an MRI or CT scan to rule out "other" issues? I don't know the details but you can be tested for MS.....I had some other neurological issues (unrelated to CH) that mimicked MS .... and went through a series of tests. Do you have a Neuro? Best Jon
  24. This is absolutely fascinating and I appreciate the posting. It also seems to match, at least partly, "batch's" D3 routine...which includes a loading dose of B-complex followed by other co-factors. I do have one question...guessing it might be related to translation from Italian to English....as it is quite confusing and does not match the rest of the paper's discussion: comments? "There is no therapy for CH. However, there are some effective treatments for both the acute painful attacks as well as for the prophylactic treatments." ...of course there are therapies....are they saying no SUCCESSFUL therapies for THIS patient? and unless we are talking poly pharm...I don't know what is meant by "some effective treatments for prophylactic treatments"...why would you have to treat the treatments? Best Jon
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