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jon019

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Everything posted by jon019

  1. jon019

    Struggling

    .....a full but DUSTY O2 tank being among the most beautiful sights ever.. I liked to keep one around.....ya never know...
  2. ....start with this and this...the first is the excellent O2 page from sister site clusterheadaches.com.....the second one of the many CHfather gifts to the family you may have already read.... Clusterheadaches.com NEW Message Board 10. - OXYGEN INFORMATION - ClusterBuster Files - ClusterBusters .....re verapamil...agree with drewbie...don't be changing dosage on your own. my neuro allowed me to titrate up and down, but only in increments after she trusted my judgement, and with appropriate monitoring. tripling your dosage is pretty dramatic... .....for me nothing less than 480 mg/dy worked (double that+ in high cycle) and sustained release instead of immediate release was worthless .....lotsa water and fiber to keep things moving as constipation can become an issue...
  3. .....mit...i've always used the 5 mg zomig ns, but there is a 2.5 mg version......at least as seen online. never used more than one per hit/dy, but they worked nearly every time, and better all ways around than suma. also used very judiciously as i was petrified of rebounds, and the thought of my "last resort abort" causing MORE hits was too much to contemplate... ....interesting your methodology.....i found that a certain tilt back of the head, plug opposite nostril and with just the right amount of inhale (less than a snort) was ideal. not enough and it dripped out, too much and the awful flavor coated my throat.....neither effective.... ....goes to show....we gotta find how our meager tools work for our specific case...it's beyond sad when folks only try one dosage for a med like verap, or poor mask/technique/flow for O2, and give up because "it don't work for me".....when more likely it may just be that that way or that dose doesn't....keep trying..... best jonathan
  4. ...hi DayLight...welcome! ....you've been down the road of standard CH treatment so it seems odd that OXYGEN wasn't already in there. was a game changer for me and many others, and is the primary abortive recognized by the medical field...absolutely life altering. i understand it's different for different countries, but any physician can prescribe O2 in the US...i got my first once i educated my primary, 20 yrs before i ever saw a neuro. if possible find a headache specialist....many neuros are as frightfully ignorant of CH and its treatment as most PCPs.... .....no need to repeat the the priceless info you will find in the CHf file above...just to commend its accuracy. i found my best OXYGEN sucess was in downing a high caffeine/taurine energy drink (2 oz 5-hr energy type, quick, easily downed, portable, no sugar), or EXTRA strength caffeine drink, at the first sign of a hit, while slamming the O2 mask on my face immediately following. had an E tank in the car, several in my office, and M's at home. there are various breathing techniques...most seem to find the best success by hyperventilation with intensive inhale and crunch exhale. i found slowww/deep breaths to be just as effective, with the added benefit of calming me the f down. breathe and hold another style. try 'em all, sometimes a combination of styles is the most effective... ....the D3 regimen is safe and easy and effective for many....good for you whether you are a clusterhead or not....you should start on it yesterday.... .....you are in a great place to learn about busting... best jonathan
  5. jon019

    Struggling

    typo....meant NON-rebreather mask.....the optimask at clusterheadaches.com is a cadillac version....
  6. jon019

    Struggling

    NOPE! .... i was 26 when it started for me (most start around that age)....retired senior now.....life, job, career. it was OXYGEN (mostly), energy drinks, D3, verapamil for a while, zomig nasal spray as abort of last resort....maybe even age and chemo got me through. Busting remains in the tool belt if need be... ...find the right tools (we'll help) and note that they may change, make a plan (scripts, meds, providers), and keep a good attitude (i always thought, screw it, aint gonna kill me, aint gonna quit).............. best jonsthan
  7. jon019

    Struggling

    Brad....not sure your experience with OXYGEN...changed my life...do your best to get and use appropriately: min 15-25 lpm, non- rebreather mask/direct/demand valve, proper technique (hyperventilation most popular, also breath and hold, slow breath, combo)...
  8. jon019

    Struggling

    .....talk it out Brad...we're an understanding audience so ya don't have to explain stuff....but collecting and expressing your thoughts helps to focus the mind and relieve some stress...it's really good medicine....been there. best jonathan
  9. ...mine a bell curve with slow ramp up...plateau...slow ramp down...and one last blaster at the end. considered myself fortunate in that i knew the "pattern" so could make plans for battling or getting on with life. whether this is his pattern or not only experience will tell...tho interrupting that with a preventive (busting, D3, verapamil) certainly worth the effort....
  10. ....ok, starting to make sense...pain killer!....was probably going down the wrong road with vasodilation/constriction speculation. unlike opiates, could be n20 is hitting the right pain pathways irespective of blood vessels situation? perhaps weed similar... .....decades of this shit and "i'm still no bloody good at it" (to quote aussiebrian)...sticking around to learn, i wish more folks did...ya never know when the beast gonna morph and different weapons needed....
  11. .....seems countintuitive ...N20 described as a "potent cerbral vasoldilator" which is just the opposite of what we want. would seem similar to nitroglycerine which can be used diagnostically to precipitate a CH hit.... ...on the other hand....thc is discussed on every CH board i've ever been on.... and while it too is a potent vasodilator, there are folks who swear by its use. though i do not recall as an abortive (yikes, smoking tobacco for me during a hit was damn near suicide)... ....can only wildly speculate that vasodilation throughout body might reduce the pressure on the trigeminal nerve....but this is way beyond my knowing....
  12. ....thank you for this Ricardo....monoclonal antibodies actually saved my life for another condition.....but it was a trade off, with long term consequences not fully revealed/discussed prior. i would (and might have to) do it again....but INFORMED consent this time.....
  13. ...'twarnt no "implication"...they wouldn't give me pants, they don't put pockets in those shorty gowns, and my ass was hanging out... ....sorry if we're scaring you bejeeber, but note that for me, out of hundreds of cycles, a weirdly triggered hit (e.g. epi, zinc welding) has never started a new one...
  14. ...well...that explains why the arrogant prick anesthesiologist blew me off when i PLEADED with him to forgo the epi for my own "head" surgery...he at least coulda told me the above.... .....good news/bad news from this clusterhead if ya can't talk 'em out of it: did NOT trigger a cluster cycle...did wake up to a one-off 6 hr kip 8+ hit ...you know it's bad when you are scaring ICU nurses.....drained the hospital O2 to no avail and they wouldn't give me triptans.... ....if i was yu i'd keister a Zomig....
  15. ...hi Mox ....have always thought there's gotta be some kind of brain chemistry alteration going on...pain hormone driven or actual headaches mediated. post a CH hit the euphoria was welcome but short lived, then the beat with a 2x4 exhaustion. no brain fog, but perhaps the other side of same coin, as cumulatively during a cycle i found that my mind was actually sharper/more focused. used to do a lot of writing for work and i "almost" would hope for a cycle when i had an important project. i look back on some of the things i composed and wonder "who wrote this!?".....cuz it was better than I knew... ...dangdest thing.....and just a guess, but have you considered low blood sugar or other nutritional issues? best jonathan
  16. ...yeah, stress hormones....i think mainly this one since it is slower but longer acting....but adrenaline and norepinephrine too. Cortisol What It Is: A steroid hormone, commonly known as the stress hormone, produced by the adrenal glands. What It Does: It takes a little more time -- minutes, rather than seconds -- for you to feel the effects of cortisol in the face of stress, says Sood, because the release of this hormone takes a multi-step process involving two additional minor hormones. First, the part of the brain called the amygdala has to recognize a threat. It then sends a message to the part of the brain called the hypothalamus, which releases corticotropin-releasing hormone (CRH). CRH then tells the pituitary gland to release adrenocorticotropic hormone (ACTH), which tells the adrenal glands to produce cortisol. Whew! In survival mode, the optimal amounts of cortisol can be life saving. It helps to maintain fluid balance and blood pressure, says Sood, while regulating some body functions that aren't crucial in the moment, like reproductive drive, immunity, digestion and growth. But when you stew on a problem, the body continuously releases cortisol, and chronic elevated levels can lead to serious issues. Too much cortisol can suppress the immune system, increase blood pressure and sugar, decrease libido, produce acne, contribute to obesity and more. "Ducks walk out of a lake, flap their wings and they fly off," says Sood. "When you face something stressful, particularly if it's not likely to repeat or doesn't have a huge long-term impact, you want to be able to shake it off and move on with life."
  17. ......never made any difference either way....would quit during cycle, between cycles...sometimes for months. the only direct effect i could ever discern was smoking during a hit was nucking futs....would raise a hit level exponentially. counter intuitive as far as i was concerned. as nicotine is a vasoconstrictor and shoulda helped. of course, there are 999 other nasty components that must be considered....
  18. ...missing one dose and having breakthroughs sounds like you've found the bottom of the effective dose for you....called titration. is GOOD to know... ....240 is on the low end.....most reported effectiveness is 320-480 mg/dy in DIVIDED doses (through out day). for me, anything below 480 was useless and i went up over 1000 in high cycle. not recommending that high, just reporting experience and observation of these forums... .....verap is a very dose dependent med for CH control...clusterheads can tolerate doses that are way above that needed for blood pressure control. scares docs who are unfamiliar. hoping yours is not reluctant to up your dosage...just one more notch (80 mg tabs) to start would seem prudent... ...depending on your cycle you may be able to ramp back down in between.... ....there are those who feel stop/start results in ineffectiveness in the long run....this should be discussed with an experienced hedache physician. my cycles too close together to determine personally..... ....since it can cause heart rhythym problems is always a good idea for a baseline ecg and any time dosage increased. .....extended release is reported by many clusterheads to be less effective than immediate release...xr never worked for me but that could well have been that blood levels not high enough due to slow release. even if you and your doc decide not to increase dosage, you should try the immediate release verision... .....if you know your cycle hit times you can time doses to several hrs before anticipated hit. it's definitely a crap shoot, but on occasion i'm sure it helped...not really possible with xr... .....feel free to pm if you want to talk about off line... best jonathan
  19. .....what's yur dosage? ....timing of doses....just the one? ...immediate release or extended?
  20. ....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....
  21. ...hi mr w, ...stress or coming OFF of stress are CH triggers for many. during an ECH cycle, coming off any significant stressful situation was almost a guaranteed hit for me....staying stressed was (tho less so) preventive. my speculation that it's changes in hormonal (cortisol?) or other physiological systems. CH hits or cycle never seemed connected to my pscyhological well being..... no matter what that was.... .....CH changes...it just does...not necessarily indicative of any significant health changes. one thing it is NOT is a psychological illness....ya can't think it away...have never seen any reports or literature reporting so. just "well meaning" folks who tell us "it's all in your head".... .....i stopped years ago trying to explain my CH to anyone beyond: "REALLY bad, disabling headaches"....anything more and eyes glazed over. how to describe the indescribable is above my pay grade.... best jonathan
  22. .....ummm....welll.....if you bust every 2 months you might just get that year....and more.... .....i used the triptan zomig nasal spray (5mg) as abort of last resort (carried on person at all times).....no fumbling with needles or injectors....a simple press and inhale. worked better for me than imitrex.....
  23. .....yup, ya gotta learn to play mind games.....during a hit i used to focus on the cigarette i was gonna have after.....it was always the best smoke and one of the better distractions to get me through. quit smoking 8 yrs, 5 days, 4 hrs and 12 mins ago......but i don't miss it.....REALLY!
  24. hi Eli, ...i assume this is referring to mushrooms or some other busting substance? ....postponing a cycle would have had me doing the happy dance every day til the next cycle...and i used to have one every 6-8 weeks...even avoiding ONE hit was cause for celebration... ...busting is not a one off deal....folks who bust determine dosage and frequency based on personal experience. if you get 2 months "free" for each bust then your periodicity of busting is evident... ...sorry if i'm missing something...just really puzzled why you would not pursue this further....you are on the right site for insight... best jonathan
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