jon019

YEAH!!!!...and this is at Yale

...ok Doc J...you just found out why the ER is usually pointless for a clusterhead....what they needed to do was slap an oxygen mask on your face at 15 lpm or higher ....and a shot of Imitrex. one pill of verapamil and send you on your way is criminal.....guessing that intramuscular was indeed imitrex.... ...verapamil usually takes 10-14 days to show effect...immediate release (vs sustained) reportedly more successful....240 mg/dy on the low side but it's wise to start low and go up if necessary. meaning, don't give up on it if the 240 doesn't work...some of us have gone over 1000 mg/dy. can have an effect on the heart rhythm so an ecg before start as a base line...and any time dosage increased is a wise precaution. keep in mind for later reference that when busting you will not want to be over, i think ,320 mg/dy but others can speak to that far better than I. typical treatment with verapamil includes a prednisone or methylprednisolone IV and or taper to tide you over until the verapamil kicks in..... best jonathan

usually in reference to usage of triptans........... ..short answer is experience......we all react differently ...longer is: one of the POTENTIAL side effects of triptan usage is that usage (usually OVER usage) MAY cause REBOUND, an increase in number of headaches or, more reported, decrease in time between h/a's (for that matter, any significant changes in your h/as). We're all different so my experience may be insignificant compared to yours. You can reduce the chance this will happen by limiting the amount/frequency you use (tab, nasal or injection). Oxygen, D3 may result in dusty scripts of same....but you keep a little around 'just in case"....

"My doctor did prescribe me vials of Imitrex but I had a hard time injecting myself with needles. I see there are a couple of companies that now offer 4mg and 3mg triptan auto-injectors but my neuro said they aren't available in my area or through my insurance. I will look into splitting the shots. " That's actually a WAH-HOO moment as most docs are unaware of the existence of vials...and sometimes they are hard to source....BUT it gives you SO MUCH more control over dosage...the smaller amount of Imi used the lesser chance of side effects and rebounds. Also cheaper in the long run as more doses available per script ...the ONLY negative being the actual injection. Get the smallest insulin needles available and you will barely (if at all) feel the injection. Used to have to do B12 injections...huge needles and deep in muscle....once I got past the initial and daunting task it became a breeze...insulin needles thin and short...you will be joyful at the results.... best jonathan

...Flonase never worked for me for multiple allergies and certainly no benefit re CH...what i did find was that any relieving of the typical nasal congestion pain/pressure during a hit sometimes took the level down a notch and made it easier to breath....for which I was exceedingly grateful.... ....accomplished with Tiger Balm vapors, a Vicks inhaler, or similar....being careful not to inhale any solids... best

Hi michq, ...all the good stuff above!... ....fever and headache two of Covid symptoms...so wise to test...assuming you were negative... ...body temp regulated by the hypothalamus, a wonky one thought to be the center of CH issues, but i do not recall anyone reporting fever..... buckets of sweat yes ....has an MRI/CT scan been proposed?....often used to rule out other issues mimicking CH... ....CHf list took me down memory lane.....have had all but one of those symptoms but initially only 1 for the first yr...the diary idea is really great... ...the advice re a headache specialist really important if this continues....the tylenol #3 a red flag UNLESS the doc is using as diagnostic tool (if it works unlikely to be CH)... best jonathan

...i just hafta say...as an x/food scientist....that this is the most appropriately named food extent...it looks, smells, tastes exactly as named... ...back to your regular channel...pardon the crude interruption.....

Hi Doc J...glad ya found us.. ...read this site and others like your life depended on it...CH aint gonna kill you but that's the attitude ya gotta have.... because we are, in many cases, our own best perhaps only advocate... ...don't assume just any neuro 'knows" CH...many don't...best to find a headache specialist... ...if the Zomiltriptan is oral you're gonna be disappointed....too slow....an injectable or nasal form works much quicker with your goal to use the least amount possible since rebounds and side effects can be considerable. Imitrex comes in 4 or 6 mg statdoses....many find they can get by with only 2 mg (greatly limiting the side effects and rebounds) by way of hacking the dose pen...or better yet , by obtaining in vials and injecting with insulin needles only the amount needed. In my case, Zomig NS 5 mg provided near 100% relief as abort of last resort... with no side effects, rebounds and an 18 hr CH free window....YMMV ...OXYGEN OXYGEN OXYGEN.....saved my sanity, perhaps my life...no side effects, relatively inexpensive, easy to use, way more portable than you may hear. You'll need a non-rebreather mask, 15-25 lpm flow (at least to start...adjust with experience)....and a technique that works for you (hyperventilate, breath and hold, variation of the 2, etc). ...caffeine in the form of energy drinks or VERY strong coffee is an absolute essential tool alone or in conjunction with O2....I have found that using only as an abortive (preventive if you know your cycle timing well) and avoiding at all other times makes it far more effective as the body has not developed a tolerance. various forms of energy drinks available ...you are looking for minimum 100 mg caffeine and 1000 mg taurine per dose (be sure to discuss with neuro, some don't like taurine). Incredible amounts of sugar is daunting so sugar free or the 2 oz 5- hr energy shots preferable...tho low blood sugar was a trigger for me. Taken cold and fast worked best....almost like you are attempting a brain freeze (irony here is that brain freeze is one of the few pains non clusterheads can begin to relate to CH).. ...the vitamin D3 regimen has been successful for many clusterheads...definitely worth a try as safe, inexpensive and beneficial beyond CH.... ...you are, of course, on an alternative medicine site that exists because of the limited success of traditional meds...well worth consideration...for many the only thing that ever worked... ...a headache diary is very helpful in dialing in what your triggers are...and there are many...from smells, to foods, to barometric pressure changes, to changes in routine....and i've seen frequent comments on seeming connection with sleep disturbances (so effectively treating that one may help with your CH).... ....if you got the right attitude, the proper tools and a plan.... the beast is manageable.... ...interesting note on MS...I've been checked multiple times, apparently there are some symptoms shared with CH... regards jonathan pardon my repetitiveness....no intent to step on toes....typed before I saw all the replies and i don't have the energy to edit...

...know of a long time professional-patient clusterhead (as in .....we aint docs but we ARE damn professional patients) who had success with topo and minimized side effects by taking prior to bedtime...of course, this makes titrating correct blood serum levels throughout day much more difficult.... ...in my case could not tolerate the "dopiness" so begged the neuro to stop...she apologized for too high a dosage....sorry. i can't remember what it was but would suggest a low start and sloooow increase.....in case my experience not atypical...

...a doc that knows about shadows is somewhat remarkable and a good sign...many physicians have NO clue on CH period... ....not gonna be able to help with your question....we're all different and you will only know through experience...in my case it changed, at one point (ECH) a shadow was an ill omen always predictive of a full hit...later (CCH) just a 'bother" that I got used to (no choice...sometimes constant, not predictive, relatively "mild" and unresponsive to O2 and energy drinks) On occasion naproxen (Aleve) was helpful.... best jonathan

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