jon019

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.............................

Hiya...welcome!...glad ya found us....and YUP....the key to education is reading....see one A. Lincoln.... Best, Jon

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 ...

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..................

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......

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

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

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

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!"....

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

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

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......

...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....

...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

Welcome!!! Glad you found us..... Best Jon

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

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

Mark...careful...you should speak with a pharmacist...some meds are DEFINITELY NOT to be crushed or chewed...................it changes all the absorption characteristics....like too much too soon or wrong area of absorption (intestine v stomach)...................

Mark...that could be described as one diagnostic indicator of CH.....many here can tell stories re getting SLAMMED post stress (I could wax demented on it). One member on another site has advised something like: NEVER sleep...NEVER relax. It is, of course, clusterhead humor.....but funny can be found in truth many a time....see George Carlin..... Best Jon

Mark...are you using Zomig NS? That's my abort of last resort...99% effective...no rebounds...but that's me......

...yes.....the depression battles for me were ALWAYS when out of cycle...damndest thing....everybody, including my Doc kept asking me if I was depressed...almost hoping so in some odd way....maybe thinking that would confirm I wasn't exaggerating. For me, time was the healer....but it's no shame to seek and get help..... ....and also, i have to tell a potato story: I worked with a number of Japanese fish technicians...one named Yuji had a child born in Japan while he was over here. he showed the picture around and said: "he looks like a potato!" (he DID)...we all thought that was hilarious and from then on, and even now 20 yrs later....we always ask him how "potato" is doing? Best Jon

Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling..... Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... Best Jon

"He said something like, "What, are you going to carry an O2 tank with you everywhere you go?" Maybe!) " That's not a good sign....a competent "headache doc" knows FULL well that O2 is the FIRST therapy choice......comparatively inexpensive, rapid action, minimal, if any, side effects.... I "carried" an e-tank in my car, had an e-tank in my office, and of course a nice little rack of e-tanks (later an M or two) at home. A couple of internet purchased $25 regulators and a clustermask or two and I was GOOD TO GO>>>>>>> Best Jon

...excellent post spiny...I had a similar procedure and a similarly attentive/responsive/ anesthesiologist (my luck, she had done a neuro internship). Specifically requested NO nitrous oxide as I believe it to be a trigger. Woke up...no hit! ....later....a much more serious operation..... I found the older abrupt anesthesiologist much less willing to consider the issues with a ch patient (if he even knew what it was) and I woke to a MASSIVE 8 hr killer hit....and I think I drained the hospital O2 tank.....to no avail....so BAD luck that time anyway...I hope anyone needing surgery reads your post AND finds a friendly ear.......... Best Jon

Hey folks!......Bob asked a very valid question...why is this smart-ass the only one to answer?