Jump to content

jon019

Advanced Members
  • Posts

    1,325
  • Joined

  • Days Won

    169

Everything posted by jon019

  1. .....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....
  2. ....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.....
  3. ...'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...
  4. ...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....
  5. ...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
  6. ...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."
  7. ......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....
  8. ...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
  9. .....what's yur dosage? ....timing of doses....just the one? ...immediate release or extended?
  10. ....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.....
  11. ...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
  12. .....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.....
  13. .....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!
  14. 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
  15. ...wow...cool....quite specific instructs.....comes up in the treatment option section but not on a forums search....
  16. ...hi Timothy...sounds like you got a winner neuro...that's a good get as they are hard to find... ...agreeing with CHf re lidocaine...typical is 4% solution from a compounding pharmacy. definitely worth a try but a very awkward procedure, especially so in the midst of a hit. delighted she referred you to CB but not sure why she thinks there are instructions for use...never seen such here... ...get the O2 yesterday....tis a life changer... best jonathan
  17. ...if you can work out the O2 supply and a regulator (Amazon, Alibaba, Flipcart?) it may make your triptan pursuit moot.... ....imitrex statdose pens are quite easy to use....you don't even see the needle...remove the safety, press the button...look for a version of less than 6 mg... ....using vials of imitrex you can inject only what you need (2-3 mg for many) with insulin needles....they are small and virtually painless. one abort and you will not be worried about injecting being a problem anymore... .....the nasals work best with proper technique...plug opposite nostril, tilt head back slightly, inhale GENTLY as you press plunger. if it drips out you need to inhale more, if it goes down your throat and tastes awful, inhale less. this too will become rote with enough use (hopefully minimal because O2, energy drinks, busting, and/or D3 regimen render triptans a fading memory).... best j
  18. ...absolutely no reason to just ride out hits if your prevents are not working.... or you are having breakthroughs. just be cautious on overuse...not heart healthy and can cause rebounds. sorry if i missed, is O2 not working? .... as others have said, orals are useless as abortives....however, some folks who know their cycle and hit pattern well are able to use as sort of a prevent to get some sleep or for pf time for an event.... ...re nasal sprays...i don't think it's a waste to find if something works...or doesn't....is equally valuable info either way. Zomig NS (5 mg) was my go to as abort of last resort...no side effects and a long pf window. also easily and unobtrusively used... ...the reports i've seen indicate that many folks can successfully abort with less than 6 mg...which is a big HAMMER. 2-3 mg worked great for me and many others with fewer, if any, side effects, less chance of rebounds, cheaper, more aborts per script. hack the stat pens or better yet, vials and insulin needles.... best jonathan
  19. @FunTimes....that sounds like "rebooting" the hypothalamus.....i never thought to try. i'm wondering if a visit to a sleep therapist might be in order for some of us. perhaps light therapy as another form of reboot...
  20. .....got pretty good at knowing when it was "safe" (no shadows, no symptoms of a hit w/o pain, gut feel).... but the few times i missed, O2/energy drink didn't work and i had to go to my abort of last resort: Zomig NS, which worked 99% of the time no matter the causation. no recollection of any one-off trigger kick starting a cycle.....
  21. @elSchreib...OXYGEN OXYGEN OXYGEN....from a tank, not a concentrator, with a non rebreather mask/mouthpiece/demand valve at minimum 15-25+ liters per minute. an energy drink/strong caffeine downed at the first sign of a hit increases effectiveness for many. stay on for 5-10 mins post hit. decades of success for me that saved sanity (perhaps life) with NO side effects, NO rebounds, mostly quick aborts, cheaper than Imitrex, way more portable than one would think..... ....have no experience with Wim Hof breathing...certainly worth a try. some aspects kinda what i did (personally I'd combine with O2.) .... this cluster journey changed DRAMATICALLY for me when I discovered (by painful experience doing it WRONG) that using the O2 with slow, DEEP, meditative breathing, reduced my anger, agitation, angst, overheating, and excess adrenaline. all contributing to successful hit aborting. many find that a hyperventilation technique is the most successful, others breath and hold......sometimes i would combine all 3. try 'em all...point is: there is no "right way".... ...check out the D3 regimen....it's good fer ya whether you are a clusterhead or not... regards jonathan
  22. Location map (lincare.com) UTAH shops ...although mixed reviews for Lincare in the CH community ... they are ubiquitous and it all depends on the shop mgr you encounter anyway, no matter the supplier....overall they served me well (especially the techs and drivers)... .....even if you don't have insurance or ins balks....with a prescription in hand, from a headache specialist doc (or a PCP who is willing to learn/listen),..... sit down with the O2 shop manager with an offer to self pay. in some cases this is even cheaper than insurance. cheaper yet, a fallback plan of welding O2....just don't tell 'em ya gonna breath it.... ...if you will be travelling, Lincare has a "travel program" where you can arrange O2 at your destination...i successfully used this for OK, CA, NV, WA... ...dunno your history, but don't let anyone push a concentrator on you.... best j
  23. .....i am of the firm belief that one should go with "gut feel", you know you best. even if things turn out unwanted or not as expected, the mental anguish "savings", in my experience, are worth it.... ....whether to bust or not with viral illness going on is a very good question that i don't recall seeing discussed here. there has been much discussion over the years, in various places, that illness/inflammation/allergies/trauma are fodder for the beast....so having covid is likely to make matters worse. hoping others can share actual experience...
×
×
  • Create New...