jon019

...try the search function here and ch.com for emgality et al...mixed bag but worth a try ...especially if covered by ins or coupons... ...there are whole sections on mooshies...check the new members banner above and member only forums... ....the "price" I paid sclepping O2 to work (e tank/cart) for 25 yrs, when in cycle, was the best investment I ever made...saved sanity, perhaps life, and enabled a job and career. When traveling arranged for delivery at destination multiple states/locations. Fortunate that it worked 70-95 percent of time greatly aided by caffeine/energy drinks ....100 percent with Zomig NS as abort of last resort. .... extremely important to have proper non rebreather mask, enuff flow (15-25 lpm recommended.... but really individual) and proper technique (also highly individual dependent and based on trial and error) ...have you considered the D3 regimen? Best Jonathan

...for consideration...article Medscape...I make no claims or conclusions...personally usually use the speaker...or my Bluetooth ear piece (problems of its own?), if I can find it. I don't think we know near enough about biological effects of the various electromagnetic waves in everyday use everywhere.... Do Smartphones Cause Headaches? https://www.medscape.org/viewarticle/929422?src=wnl_tpal_200502_mscpedu&uac=358749DX&impID=2367758

...absolutely the above....denying O2 prescribed by your physician is practicing w/o a license.....tell 'em you know they are doing that...get your Doc (hopefully a headache specialist) good and pissed and writing a letter on your behalf (same for triptans BTW)...involve your company HR if you are working, and the insurance broker who sold the policy....they have more pull than you...be professional but persistent from these multiple angles. went thru this at least 7 times with ins companies...always got what I needed in the end.....they COUNT on folks giving up...don't be one of those..... edited to add: worth asking your physician to include the word "intractable" in the cluster headache diagnosis discussion...according to one broker...this is a key word. also important that the correct diagnosis codes included in any communication with insurance....am hoping someone can post these as I cannot find at the moment....

...any allergies Luis?....spring time is a bitch for clusterheads....maybe some (Benadryl) diphenhydramine in order ....

REMARKABLE Tony... thank you for being part of that enlightened attitude toward health care....most clusterheads spend years just trying to find someone who understands...and it can get pretty lonesome. Many never find a health care professional who does...so this is just awesome.... Does your system provide any type of training for communicating your experiences most effectively? Do you collaborate with a colleague(s) who have taken different approaches to treatment (meds, mooshies, diet, etc) for the most effectiveness with each patient? regards jonathan

...been hearing this for 10+ yrs now...and some day it may be true...maybe now....but I can still find it offered online.... and optumrx says in stock (but NOT covered by my medicare plan...this has ALWAYS been an issue with MANY insurance plans...but get the right pharmacy and they will substitute for you)...I'd ask a pharmacist (s) to look up if still available before I gave up on what was and incredibly better option (2 mg per) for me at one time ....compared to the HAMMER of a full statdose of 4-6 mg.... best jonathan

Hiya Siefried, Topamax does indeed have a bad rep...and I've been guilty of adding to the noise...but when dealing with multiple types like you are I'd sure as hell give it a try! ...and definitely a serious one. By that I mean an extended period (at least 3- 6 mos) and various doses. I fear that many folks start taking a med and immediately make a decision based on initial side effects or lack of success...when it is common, in many cases, for full benefit to take weeks or longer to show and side effects to reduce or disappear after a period of time....and different dosages to have COMPLETELY different results (e.g. verapamil useless for me at < 480-1040 mg/dy). I fully understand and appreciate the reports present here and other forums about experience with this and other meds...and I would definitely take that into consideration....but there is only ONE way to know for yourself...and that is to try! A person I knew had good success (don't recall the dose) with it, and was able to mitigate the side effects by taking at night before bed. My issue (the dopeymax effect) was an inability think, write, or speak at a level required for my job....and concentration lapses that made driving a dangerous prospect. I powered thru for 6 mos because nobody knows desperation like a clusterhead....and finally quit because it just didn't work. Depending on your work/life situation those issues may not be debilitating...and may even resolve. best jonathan edit to revise suggested attempt timing....upon further thought, 6 mos seems too long for a heavy effect med like this...more like 3-6. i'm up over 20 tried....most I gave at least 6 mos...but reality and life and a clusterheads knowledge of their own body should be considered...

...got a link?

...very valid question...and I wouldn't limit it to physiological...there are probably elements of emotional, mental and spiritual involved also... ....I was the caregiver for my Mother in the last 3 1/2 months of her life...it occurred right in the MIDDLE of a regular/reoccurring cycle....and I remember saying "Lord, please...I can't handle BOTH of these at the same time!"....then making plans for TRYING to do exactly that.... ...whether attributable to spiritual faith, emotional self preservation, stress hormones (def a preventive but minimally sustainable) or something else didn't matter then, but has intrigued me ever since. The cycle stopped IMMEDIATELY... and failed to reappear the expected and "normal" 2 or 3 more times for the next 6+ mos.... until I was finished with her estate. slap me for stupid, but after 20 yrs I thought they were gone forever...nope....but what a remarkable and timely window I am forever grateful for... ...there is way more to dealing with this ailment than just treating a wonky hypothalamus...we haven't even begun to tap the potential of the human mind......and I continue to believe that much of the battle simply involves the "attitude" we approach with... best jonathan

....I figured the bc/bs.....but what is fep? ....thank you...this is most excellent reporting...and a good reminder NOT to give up with insurance...they COUNT on folks walking away...I did battle with 7 different companies re coverage for O2 and/or Triptans...always won, because I NEVER gave up....but they made it as hard as possible...

...I like spiny's pro-active educational approach.....I didn't have the energy to do that with 4 of the 6 I've seen (neuros seem to be higher on the arrogance spectrum in my experience)….one of other 2 recognized that I knew more about CH than her and just gave me what I wanted (O2 and triptans)….and the one headache specialist I found (at a closed now HA clinic) made me cry (in a good way) when she physically flinched at my telling of history and said "I treat CH very aggressively"...she was and is a HA researcher at Stanford (some of which CHfather has posted here)... ...long way to say ya GOTTA find a HA specialist.... ...interesting re the pupil constriction...no one has ever commented on my permanent hit side constriction...other than to shrug with indifference (eye docs). Seems to me would be one piece of the diagnostic puzzle pieces....

FWIW….CCH here (have never had a migraine)….rare hits but near daily shadows with no other symptoms (for years now post ECH)...non distinct does not mean unique....just a more difficult diagnosis...

welcome spaceman...glad ya found us...sorry ya gotta be here, ….in my case low blood sugar a trigger...so got additional benefit from the combo of caffeine and taurine and sugar....but there is a ridiculous amount of sugar in most (have always thought to cover the disgusting taste of most of these) so eventually shifted to the sugar free, which worked fine....just be aware of what type of sweetener is used as aspartame acted same as msg and was major trigger for me..... best jonathan edit to add: just looked at a 5 hr energy bottle...2 oz, 4 cal, no aspartame, easy carry and drink (my go to on a plane)

Why?

.....fixed it for you..........................

Yes...proceed with caution...had an ENT (accomplished surgeon) STRONGLY advise me (and only slightly facetiously) to "NEVER trust a surgeon... we think we can fix EVERYTHING by cutting".....

FT...thank you...very interesting! Not quite understanding usage procedure...one patch per hit?....or constant admin at low dosage as a prophylactic?...or ability to selectively admin for a hit?...dosage? Why do you think it would be a cheaper option? I paid basically the same amt for Imi and Zomig NS (after insurance)...with Medicare Adv now $125 copay per script.... Best J

hey timmy….please tell us a little about yourself, your organization, your education/experience.....it's nice to know who we we are talking to... best jonathan

FT...totally get your reluctance with a physician unknown to you...if you can find one you know/trust I'd give it a shot. Didn't work for me but any side effects are transitory.....and the potential is enticing....

Welcome aboard! Jonathan

...remarkable post Chris!

...if it is....it's an odd form..but we are an odd bunch..... everyone the same yet different... .... typically the need to move is nearly uncontrollable..moving doesn't make a hit directly worse....or better (except for distraction....)... ....sleep!!!???.... can't see how...many a clusterhead has prayed to just pass out from the pain w/o success... .... what sounds like many hrs long is unusual (for me only with a very rare 10....)....not at all unusual to wake up with a new hit tho (and some experience what could be described as wax/wane of same unresolved hit).... ....if yur Doc knows about Oxygen it should have been #1 priority ...with Imitrex back as last resort abortive....NOT meant to be a preventative.... Best Jonathan

....very interesting, thank you.... ....I never fully comprehended subjectivity until my sister-in-law eschewed ketchup on her fries as " too SPICY!!!!".... .... remarkably (to me) I've experienced 8 of the 20....the only one that even approached CH was gout.....and I mean DAYUM!!!! ... surprised not to see burns on the list....most of us know how bad even a small one is......

Tim.... that's sobering...no migraines here....but I've seen 'em...and want no part of THAT! Sorry you've had to be a double warrior....one down, right?....let us know when you get this one... Best, Jonathan

....hi Edgar....how long have you had clusters? I ask because maybe the long remission has "reset" your perceptions...meaning what you didn't notice before you now do... .....in my case, when episodic, a hard or long cycle would result in what you describe...sometimes right up to the next cycle... ....as a now low level chronic... while still cycling at small amplitudes...if I think about it's still there in the background....I've adapted to ignore it...same way I deal with tinnitus.... ... another thot is that having the shit aggravated out of a huge nerve like he Trigem....maybe it just stays aggravated (or, ok, more properly, inflamed...) ....when it becomes annoying I've found success with Naproxen and/or caffeine....oddly, O2 ineffective.... Best Jonathan