jon019

....naw, that's the other forum... .....nope, and i got proof: "jon's a smart-ass" ...yup! ....."we don't know a millionth of one percent about anything" T. Edison but if ya wanna talk about mooshies, yur in the right place ...used to volunteer for Lifelong....among other things they feed folks shunned by society. their motto: "food is medicine"...i like that, i believe that... MERRY CHRISTMAS ! Juss

Decades-Long Delays in Cluster Headache Diagnosis Common (medscape.com)

....before i knew a single thing about CH...including the long delayed diagnosis... it was my belief that there was (and is) a connection between these damn headaches and my decidedly compromised immune system. these included multiple autoimmune ailments along with constantly evolving food and environmental allergies/intolerances.. .... and though formerly known as "histamine headache", i think CH it has got to be far beyond just histamine etiology...this proven to me in my own treatment over the years where the most powerful antihistamines (script and otc) had virtually zero effect on my CH. seems there is far more going on than a direct relationship between the two. that said, diphenhydramine has been most helpful for a number of clusterheads....but then, it has effects beyond antihistamine including sleep and probably anti inflammatory, et al... ....measures like the D3 regimen, that have a direct effect on the immune system as a whole, are helpful for many.... .... the keto diet and probiotics may be helpful in similar ways. i do not know enough about either, other than anecdotal reports of benefits...

....yeah, it's one of those annoying electives you blow off...like "Headache 101"....

Hi UR...welcome... ...it is by far weird the relationship between smoking and CH. .. ...trigger for some, relief (tho very unusually reported) for others. i could smoke w/o effect on CH before or after a hit ....during a hit a cig would massively ramp it UP. most unaborted hits were survived with little more than desperation and the reward i knew i was gonna get of having a smoke AFTERWARDS. ....in cycle second hand smoke was a frequent trigger....both when an active smoker and not... ....many many reports of quitting having no effect on CH (same here)....but it's such a nasty, harmful habit that quitting should be a priority w/o regard CH anyway.... best j

.....APAP, as the saying goes "don't do squat" for me much to the consternation of my back doc....careful of the NSAIDs if you are on blood thinners. Naproxen was the only thing that helped me with shadows (nothing for a full hit), when not even O2 or triptans worked for what i called "ha bruises"....

.....i remember the first Texas Instrument handheld calculator i saw in the university bookstore....musta been 5 - $600 and weighed as much as a brick. figured some day i might be able to afford one (now they're givin them away like business cards). until this completely hypothetical "rig" came along i felt the same way about demand valves........thank you B, a fun and practical "build a model" project...

.....Hi DMELS....welcome... ....we got us a wonky hypothalamus, which also controls sleep, so abnormalities there not unexpected. mine the opposite, and uncontrolled when young could/would easily sleep 20 hrs straight. might wanna consult a sleep specialist for your issue and/or sleep apnea, which seems prevalent in clusterville. many have been helped with cpap machines (much less intrusive models now available)... ....not surprised re the Amytriptyline...many yrs ago prescibed that for CH, for which it proved worthless, but, i note that the side effect was a deep sleep and getting up in the morning was like climbing out of quicksand with lead weights on (amused me i considered it an accomplishment to just get out of bed).. ....Benadryl is an old line antihistamine which tends to make folks sleepy...which is what we are looking for, Flonase does not..hope it works for your allergies which can make CH worse... ....ps i like the handle too....and my eye DOES look small...seems permanent but eye docs just shrug... best jonathan

...ok, i get it...but that's only part way to a "normal" life. sounds like you have something like an m-60 tank (my home stash) which is way more portable than most welding O2 tanks, but still pretty cumbersome. i went to work every day for over 30 yrs with an e-tank on wheels for the office and one in the car for ANYWHERE else. i know you may not have ready access to one and the refilling... but you really should look into getting one or more... or similar. is life changing!

....now that's a good "problem" to have! similar success here with O2, which made the decision about when to use the last resort triptan harder. in my case had to use a combo of factors to know when. kinda depends on your cycles...mine 5-8 weeks on/off for yrs so knew just about where i was in most cycles (much harder when turned chronic, but cycles within that too). the worst hits (except for very last) were midcycle, always on high alert then. i knew only O2 needed for start and end of cycle hits. other factors: the faster a hit came on the more alert to a last resort screamer i had to be....and last but totally unexplainable, sometimes i could just tell...there was a certain "exquisiteness" of pain that was missing from most other hits. got pretty good at it and rarely missed....but always rueful since it meant being an "experienced" clusterhead.....which noone aspires to. may you continue to rapidly abort and not have to worry about "how bad" this one is gonna be ...thank you for your reports....somebody somewhere is sure to be helped reading your experiences....

....my opinion based on personal experience matches this. only eventually used Zomig NS (Sumatriptan too many nasty side effects) for absolute last resort. rode out more than a few hits for fear of rebounds with overuse (btw, noone knows what "overuse" is as we all are different). 99% effective, never any sign of a rebound HA, some mental support knowing i had it available if absolutely necessary. knowing now what i didn't know then i would have used more frequently....but, insurance provided damn few, and i may be talking about rebounds from hell instead. ...point being....and true of many meds....find the least amount that gives the required effect. you are never gonna know what that amount is for you w/o self evaluation. some are more risk averse (like me) than others. your choice.....

….those slammers out of the blue are truly frustrating. Have you gone over your list of triggers….any new meds…new foods….old foods you thought safe now….change in routine (especially sleep/naps)….weather fronts…new odors in house…allergies (my Fall allergies bad right now)…cold/flu/inflammation/infection?

...oh that is golden!!! there is a definite technique that can make a huge difference. my best result was a gentle inhale (short of a snort)....if it drips out the inhale not enough, if a nasty taste and need to swallow then too much and the effectiveness very poor. a liitle blech being normal...... tis a bitch to learn this thru experience

...consider a Zomig NS trial....have never experienced any of the nasty side effects that are so common with Suma. and while not typically a prevent...an oral triptan prior to a WAY uphill/downhill jaunt might be worth a try...

.....oh it's so random sometimes...rapid barometric pressure changes were sure triggers for me...so plane travel was initially petrifying. but, must have flown a dozen times in cycle w/o ever getting hit...carried a Zomig NS and later several 2oz 5-hr energy type energy drinks (TSA ok) just in case. likely the stress of travel protective as stress was a "prevent" for me.. .....utilized Lincare's travel program with great success to OK, NV, CA and WA...either e-tanks delivered to hotel or self pick-up at the O2 store....DON'T FORGET the regulator and your best mask....did that once (and ONLY once) and my brother had to MacGyver both (pre the redneck O2 reservoir bag knowledge).. ....traveling to altitude most of those times (7-10,000 ft Ebbetts Pass/Bear Valley area)...the O2 vital as would get hit while there... but not the trip up and down...

@Acanderson34....make sure the sugar substitute isn't Aspartame....a trigger similar to MSG for some...

....same....bigger jolt/better effect if body not used to constant levels...

...thanks for the caffeine content link @CHfather.....read your labels for any food...but especially for those we use as "medicine"....and Google is great.... ...early in my CH career...even before the Bull that is Red (that's how old i am)....2-3 tablespoons of coffee grounds in an 8 oz cup of water, boiled 2 mins in microwave...allowed to sit for grounds to (mostly) settle....1 min to reheat....and strain the hot mix thru teeth was fairly effective. when energy drinks came out i figured i was as lucky as any clusterhead could be..no more of THAT noise. premade didn't work since it HAD TO be hot/hotter/hottest. with energy drinks, the colder/faster downed the better....

....that's the point...most of us have limited time/resources/opportunities/$ so it behooves to prioritize attempts based on likelihood of any measure helping. years ago i had a neuro who was involved in an ultimately successful botox trial for migraine (early one maybe), who refused my participation in the trial because "it doesn't work for CH". free woulda worked but, i followed out of interest anyway....as other clusterheads have tried and occasionally continue to. the sucess rate for CH, per mostly anecdotal in my experience (and i suspect research-wise), is very poor. made my choice easy...no telling what level of desperation would get me there....but never did..... ....sure, share the price, inquiring minds would love to know....

...here's lookin at you kid!

.....workmates used to think of me as a cat....he jumps up and runs out of a room suddenly and seemingly w/o reason. had to, if i didn't hit the O2 as soon as a hit felt an abort was much less likely to work..... and the longer the delay the worse the chances. golly, i hope it doesn't ramp up that quickly to 8+ for you...anything that high defied abort with anything but a triptan for me, and even then.... ....an energy drink on the way improved effectiveness/speed dramatically. "Wired" WAS my drink of choice....16 oz. with 344 mg caffeine and 3200 taurine, used half a can (8 oz) at a time, the equivalent of a full can other brands. i still cannot understand the success of energy drinks....as far as i'm concerned, along with cranberries, is testament to the marketing abilities of the food industry. w/o CH i would never touch these disgusting drinks....and all that sugar to cover up the gaaaaaack... ....was with delight i discovered the 2 oz 5-hr energy types. no sugar (note if you are sucralose sensitive, i had to avoid aspartame), minimal taste, way portable, easily downed, equivalent components. brand name quality found at grocery outlet stores for $1 or less ea... ...never more than 1 can Wired or 2 2 oz for me in a day out of an abundance of caution. my neuro did not approve of taurine..."too neurologically active and we don't know enough about"...it worked so i did anyway...

Brian...pisses me off you are still getting slammed. i was amazed/impressed that the infusion center person sounded real familiar with CH and prepared. dunno, maybe you were especially detailed on intake and they listened. they only do infusion and not the ns scripts?

...hi @Lizzie Hall, have heard very little on the sites i visit re psilo and migraine. could you share type, dosage, frequency, etc. would be valuable info for newbies on a strategy that worked....

@Shaun brearley....here's hoping you don't "have the blues so bad this time it put your face in a permanent frown"....and the NEXT bust means "you feelin' so much better you can...." :