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jon019

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Everything posted by jon019

  1. Hi Ms A...welcome...glad you found us...we'll try to help...…... This will sound glib and frustrating...but is exactly why clusterheads HAVE to find a headache specialist. Even regular neuros get minimal training in headaches....PCPs probably even less. The best I had instructed me to call immediately when I got in trouble....and her staff was instructed that cluster patients had priority. Her clinic partner wrote a flaming letter of medical necessity that got me insurance coverage for oxygen and triptans....the ONLY Doctor, of any kind, who ever advised to "stockpile" meds (triptans) when out of cycle to combat the insurance companies ridiculous/heartless/clueless limits per month.... There is a thread here of clusterhead recommended Docs for various areas of the country: https://clusterbusters.org/?page_id=455 ...hoping one is close enough to you and taking new patients...be SURE to say you are a clusterheadache patient (in cycle if so!) and HURTING bad. Offer to fill in for a cancelled appointment. Bring any records of your diagnosis, any meds or strategies you have employed, a journal of some sort describing attack timing, numbers, pain level, possible triggers, cycle length, age of first incidence, symptoms, etc. Docs of any kind love this kind of detail from a patient...diagnostic jewels!....indicates you are serious, determined, thorough, likely to be treatment compliant. I will never forget the 1985 article I read in a headache newsletter that advised treating physicians that the presentation of such a journal...all by itself....was an indicator of clusterheadache….we seem to be a bit obsessive-compulsive... Best Jon
  2. ...had the same problem with multiple ins companies...it's almost an automatic denial to make you go away...DON'T! 1) appeal...in writing...and phone (save copies, record all dates and names of who you talked to). If they say O2 is not approved for CH...they are WRONG...and practicing medicine w/o a license...call 'em on it....they hate that (be prepared to go to state ins agency regulators). Treat it as a game...play to win...what you learn the first time is REALLY useful and fun the next time (at least 5 times for me). 2) Finding a headache specialist neuro is CRITICAL for a number of reasons....but one really important one is to rely on this person for a "letter of medical necessity" which basically states the reason for this medically accepted treatment for YOU. I had one written for me that was almost too hot to hold...the Doc was pissed and effective...the O2 (and triptans) got approved really fast! 3) If you get your insurance through your employer...get to know the insurance broker who sold the policy to your company. This person is the actual customer of the insurance company ….they really don't want to talk to you except to say "go away"... but they WILL listen to this person. Your HR dept SHOULD be willing and able to facilitate this. Besides the necessity letter this was the most effective strategy for me.... 4) be willing to pay out of pocket....it's that important a treatment...life altering actually. W/o O2 I might have been dead or insane. Got to know the manager of the O2 shop....so you are a person to them not just another name in a file. Picked up tanks myself...saving them delivery costs. I bought my own regulators, mask and tank caddy online...really cheaply too. E-tank cost was $10-14 ea over time. M tanks are about 2 1/2 times bigger...last much longer....so less trips to the oxy shop...might be cheaper per liter...can't remember. You WILL need a prescription or they won't even talk to you...…….. 5) CHfather is absolutely correct...welding O2 just as good and a great option.... and once the logistics are figured out it is likely cheaper. Like he says...there are folks here who can walk you thru.... Best Jon
  3. Oh dang!...forgot to add....allergies can add to the "demon's dance" (and many MIS-diagnosed w/sinus issues (me) e.g.)....many a clusterhead has found help with old school antihistamines like benadryl…."BATCH" has many threads which discuss this...just search his name....you won't be sorrrrrrrry ……….. Best So Late...….Jon
  4. Hiya Fl...oh dear...sadly, no "at least" involved...….THAT was the start.....it wasn't the end...that particular pain has never gone away (in cycle)….it's been, well, years. We here want to make that "old news"...we'll do our best for family...like YOU! Part of the "old news" for me included: Oxygen, verapamil, Zomig, Energy drinks, a calmness version of meditation, and vitamin D3 regimen....YMMV...there's other options right chere on THIS site too. You are in the right place...…………... Best Jon
  5. YEAH! ^^^^^^^^^^^ what the 2 fine folks above said....change only a few words and I would sign my name to either. Best Jon
  6. Welcome Flwaters, Yup...totally familiar symptoms for many a clusterhead....that's essentially the same experience I had for the entire first year of CH. Kept going to my dentist and demanding he remove "that" tooth....he wouldn't do it..."nothing wrong with it". Eventually he got frustrated...researched...and diagnosed CH himself...prince of a man...…….. Best Jon
  7. Hi Coryann...double PE's here myself....TWICE...also somewhat miraculous...drove myself to the ER both times. It's a guy thing...and it's so WAY DUMB..I have a hard time believing it myself. Many years of triptan use.... nearly all Zomig nasal spray...0-12/month (depending on cycle)...starting 6+ yrs before the first PE. Have never seen reports, heard members here or CH.com, or been told by a medical professional that there is a connection to blood clots...and 6 yrs would have been a long ramp up. Ask your pharmacist and check with drugs.com for side effects of usage. That said...we're all different...and FWIW all they had was a guess "why" blood clots for me... First thought on blood thinners....I would want a REALLLLLLLLYY good reason to stop after having a PE for UNKNOWN REASONS previously. I continued and STILL got a second occurrence of DVT/PE. Btw...it's Eliquis (dang spendy but coumadin didna work...and has lots of testing requirements and side effects). Secondly...I HAVE heard of coumadin being helpful for CH...but it has been a while since I saw that and I don't know where. Try the search function here and at ch.com. The Eliquis does not seem to have any ch effect for me...but then there's other stuff that has (age, chemo, D3, "?")... Best Jon
  8. I find "Dark Side of the Moon" to be appropriate.... no matter what the situation...…………………………….
  9. Hi Tim...having been on the "stink eye" end of many an IT droid saying :"did you reboot?" (what other technology requires THAT counter-intuitive procedure?)...even when I just fricken said hello....I like your thinking. Now then....what are you proposing? When my heart stops...I expect my clusterheadache worries.... are OVER...……………………… Best Jon
  10. Hi DE....welcome aboard! You might want to nose around a bit and see what interests you in the threads...and feel free to ask questions or share your comments. We wish you didn't have to be here...but it's a good place to be....and we all do what we can to help each other out. As I'm sure you realize...just knowing there's folks out there that UNDERSTAND....is a BIG deal! Have heard of Gabapentin before but not a whole lotta success....but that's me. The reduction you're getting is actually pretty good....but I don't know at what cost (side effects that is, other similar meds can be kinda nasty). Many have found success with a Vitamin D3+ regimen that is cheap and easily obtained in most places....and you REALLY need to explore oxygen therapy as it is an absolute life changer. See this thread in another forum ....no membership required to read: you might have to type in the address...cut and paste doesn't seem to work for me. http://www.clusterheadaches.com/O2/index.html Re verapamil. Typical sweet spot for clusterheads is around 480 mg/dy....divided doses of normal release (it also comes in extended release...which works for some but doesn't seem to be as many). Some go over 1000 mg/y (myself in HIGH cycle). 240 is a good starting point tho typically there would be a steroid IV and/or taper (1-2 weeks) to break a cycle until the verapamil kicks in. Personally I would not use verap AND Gabby at the same time....due to cost, side effects AND not knowing which one is really working (if they even do). With oxygen, D3, and perhaps energy drinks (over 100 mg caffeine and > 1000 mg taurine) drunk cold and fast at the first sign of a hit and script meds might not even be necessary. Others will be along shortly....I always forget something important or my technology IQ fails..... Best Jon
  11. Thank you...got this one...but is inconsistent (1x/dy OR 1x/wk OR never). Sorry to be annoying...I check once per day as a routine...so is not important....jus' a whine...……………………………...
  12. 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
  13. 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
  14. "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
  15. *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
  16. 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?
  17. 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.
  18. 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............
  19. 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.............................
  20. Hiya...welcome!...glad ya found us....and YUP....the key to education is reading....see one A. Lincoln.... Best, Jon
  21. 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 ...
  22. 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..................
  23. 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......
  24. jon019

    LSD

    First post...totally weird...we're clustrerheads...we're NOT dumb.......sheesh!...............................................................
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