jon019

....good point by Bejeeber on the nasal spray option....multiple trips here...aways with several Zomig NS on my person. TSA never even paused when looking at them, even tho they look a little like bullets.....

...it IS a remarkable feeling....nothing else matches it my experience. mine was mood altering for several weeks, probably chemical but perhaps partly as reaction to simple relief from the ominous/dread during a cycle. almost wished for a cycle when i had an important writing assignment for work, as there WAS a "clarity" of thought, and a skill in writing beyond my actual ability....

....Lincare had a great travel O2 program that made O2 (delivery or self pu) available at multiple locations. never an issue and became a reliable travel anxiety relief. bet most major O2 shops have same. good idea to call ahead (public or private) wherever you are staying so a tank delivery not rejected....

...i wonder what the % is in non CH.....would seem most folks have had some kind of head trauma... tho there may well be a threshold level for expression. i was run over by a car at 4 yrs old...direct hit middle of forehead....CH start at 26. seems too far apart but dunno......

...as an avid smoker i would have fully embraced that abort method....only for me, smoking during a hit was guaranteed to turn a shadow into a hit and a hit into a screamer. the help i derived from smoking was looking forward to the "reward" of a post hit smoke.... always the best of the day. i do wonder if the vasoconstriction during the day reduces frequency of hits for some. i tested the hell out of that by altering/quitting numerous occasions....but in my case, a cycle was a cycle with the same damn number of hits at the same damn time... every day.

...to me a backward question....rather than "does smoking cause/contibute to/have an effect on CH".....it seems more likely that having CH, or the genetics/predilection/predisposition to CH, leads to a higher incidence of smokers in that population. IOW: smoking doesn't cause CH > CH causes smoking. ...i have no supporting documentation, research or texts on the subject....just totally unscientific observations and reading over the years that clusterheads, as a group, tend to be more impulsive, OCD, with addictive personality traits (smoking, alcohol abuse, etc). possible contributing factors include dopamine, serotonin, hypothalamic or other neurological anomalies, pain, anxiety or ?. ....no offense intended, this is complete and total speculation on my part and may just be a repeat of old theory from an old guy...you may return to your regular programming now....

...no truer words!... .....made my living as a "professional observer". one of my heroes is Yogi Berra: "you can observe a lot by watching". nuance and complexity, a twinkle or a frown, are all lost with only pixels on a screen...

...so was i and your narrative is incorrect. started/maintained in the 90's by DJ, a guy with clusters and NO resources to know what the f'k it was and how to deal with it. the archives there are chock full of incredible information that was unavailable ANYWHERE else. he and it literally saved lives and is the farthest thing from a "pharmaceutical front" imaginable. meds were talked about, OXYGEN and later D3 regimen emphasized, tough love on occasion....and always family......

....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...