jon019

.....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...." :

.....yee-haw and sounds familiar....play with the flow to dial in. M-60 tanks doubled that abort #/tank.... and reduced visits to the O2 shop. though the E's are quite portable and easy to roll around in a cart. used to love me some the smell of a new mask....associated it with the GOOD that was happening...

...you already are....

....so glad ya found us, so glad a place like this exists...we are standing on the shoulders of giants here at CB...and i look forward to the time when we can talk about the "old days" when CH was still a thing.... and now is a usta be....

....good stuff from mit....i got hung up on the Imitrex and forgot the Zomig (5 mg NS)....which became my abort of last resort. i know it works differently, at least less dramatically, because i got NONE of the severe Imi side effects noted by so many, and it lasted longer (18 hrs). with these long term HA's, even an oral might be worth a try....

...was thinking to myself: ya know CHfather, you'll never know how helpful and wise the above post is to so many of us.. ....when it hit me: say it!-so i did thank you

...if there's such a thing as a "standard treatment" for CH...this is it. many a clusterhead has found temporary relief while a prevent like verapamil is ramped up. i did a methylprednisolone IV/taper twice. the first time it stopped a cycle (mid-cycle!) which was incredible but rare...the second time no effect. none further since i didn't want to get on that particular merry-go-round long term.....and verapamil/oxygen/energy drinks/perhaps D3 were effective...... ...certainly worth a second attempt at sufficient dosage....

...been doing this dance for decades and have never seen a more apt description...wow...exactly! are you a writer...your phrasing in your posts is amazing. ....it sounds like cluster within something else. aint no rule says you can only have one HA type. i'd say find a specialist....but i think you need a DIFFERENT one...sheesh.. ...i didn't drink alcohol for YEARS, even out of cycle, because one of the few actual 10's i've had was a post drink hit from the depths of hell...scarred me. that said, Imitrex can be near miraculous and i would actually try again. as with O2, must be used at first hint of a hit otherwise likely to be ineffective. it making a hit worse is a highly unusual cruelty beyond comprehension. i'd hope a coincidence, but understand any reluctance.. ....beta blockers useless for CH...just one more migraine med thrown at us. opiates equally useless with the potential for introducing other problems.. ...as has been said, it is beyond comprehension why a prednisone or methylprednisolone iv/taper has not been tried to give you a break while ramping up verapamil (calcium channel blocker much more successful than beta blocks) verap is sometimes needed at very high doses that PCP's are reluctant to prescribe (i used IR 480 mg/dy in low cycle, 980+ in high)... ...there are clusterheads who have found relief with ketamine. i know nothing about, but is worth looking into, especially with an experienced HA specialist... ....start the whole D3 regimen yesterday...ya got nothin to lose.... ...i would insist on a indomethacin trial to rule out HC, like Jeebs and spiny said... ...you are on a busting website, might be time...there are non-psychoactive options if that's a concern... ...in the place you are at i would be exactly the same, so this total spit balling. some folks believe a trigger must be an immediate effect...while some indeed are, i do NOT believe all are. delayed reaction entirely possible.. probably old news to you, but for suspected (not the knowns like alcohol and msg) i used to do elimination/re-intro diets where i would totally eliminate a type/class then slowly re-introduce....carefully noting hits before/during/after. the only one i found for sure was aspartame, most of the migraine no-nos made no difference (e.g. nitrates, tyramines in cheese and fermented foods, glutamic acid containing like tomatoes and mushrooms ), sorry, this sounds lame but it's all i got for now.... .....asking a clusterhead to "be patient" is medical malpractice. get the damn script, go talk to the O2 shop, offer to pay out of pocket if necessary, or take up welding tomorrow. you need to find out NOW if O2 works for you. read the files on proper use...very important. this could be life changing all on its own... ....no reason not to try the Emgality. no reason to delay a nerve block...do it! it will either work or it won't, there are minimal (if any) negative consequences... ....absolutely keep searching for a diagnosis....undiagnosed ailments get treated with the whatever is handy. HA can be hard to diagnose, avg clusterhead mis/undiagnosed for 3-5 yrs....proper treatment, in the end, relies on diagnosis and the right practitioner...

re the a/c....many a clusterhead same-same. i did that, or head in freezer, or hottest shower on head, some do cold, some alternate. spiny cooks herself like a lobster..