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jon019

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Everything posted by jon019

  1. Hiya Ong, Sorry I can't be of more help than just to say: I hear you! Was episodic for 23 some yrs...6-8 weeks on/off...all yr long. Tho I battled depression in general ...oddly it was MUCH worse OUT of cycle. When in cycle I could focus and just deal with it...without being all pissed off and sad! I think because I had a plan....dunno. Never ceased to puzzle me. Eventually became chronic....and most of the depression went away.....retired and nearly all the rest went too....no more stress. I highly recommend it.................................... Best Jon
  2. I knew it was a tincture...probably some or all of feverfew, butterbur, gingko biloba, kudzu...et al. Do you know that alcohol is a trigger for many clusterheads? There was a time when "3 drops" would have put me at kip 8 within minutes ...no such thing as a cure....if it works for you...great...I AM doubting it's general potential success...to put it freaking mildly. Do you understand cycle ends, have you considered placebo effect (doubtful for ch, but then......)...how often do you take unknown chemicals from unknown sources based on "I heard"? ...what's your history (episodic, chronic, cycle length and type, diagnosis, dosages of meds, attempts at modifying dosages, combinations, O2 experience (type of mask, flow rate, technique), experience with steroids (IV, taper, both?), caffeine taurine combo (energy drinks), cold and/ hot applications? Vitamin D3 regimen? Attempts on this forum or others to seek advice on these? There are folks here and ch.com will bend over backwards to help....all ya gotta do is sincerely ask. However, your very first post touts a wonder cure...you should have heard the eyerolls and guffaws...I did! Your offer does remind me of a 1975 Starsky and Hutch episode...."out of the good ness of my heart...my friend...the FIRST one is free". What are you charging for the second....hmmmmmmm?? I have no desire to argue with someone who has no credibility...so I won't...PFDAN.
  3. prednisolone bad.......lithium bad.......verapamil bad......O2 worthless.....sumatriptan useless: Soooo...let's try an unknown compound with unknown ingredients from unknown sources......sheesh it's not even noon and a first time poster thinks I'm stooopid....getting too old for that crap...but thanks for the minor amusement. Suggest you move on up the line to snorted cayenne powder...it too is "natural"....and you will see stars!
  4. why don't you save us all the hassle and just tell us what this is?
  5. Hi Steveo sorry for your probs. Advice above good.....Jus b careful u don't throw so much diff stuff all at once you'll never b sure what worked!! Best Jon
  6. yes I have (cayenne powder)...hurts like a bitch... WHILE you still endure the ch hit...but...give it a try...we all the same...AND all different.. ...careful at work...folks see you disappear....and come back with red eyes and the "sniffles"...assumptions are made....
  7. Yo, Caffeine PLUS taurine seems to work better.... Sleep > ch hit is a classic cruelty trigger employed by the beast... Would advise not to mess with your verapamil dosage without your Docs knowledge and approval. It is typical and recommended that you get a ECG when upping dosage as verap can affect heart rhythm... My med of last resort (after O2, energy drink and verap didn't work) is Zomig nasal spray....99% effective in about 8-10 min timeframe.... Best Jon
  8. Thanks (twice!) CHF...I had forgotten the 2 oz "shots"...does that tell you something about my ch status Much easier and faster to use...and easily carried on person! I also used to buy those at the discount store for around a buck. One note to consider...in my case.....a REALLY cold energy drink...gulped impossibly fast was always more effective for me.....and the sugar rush helped (tho there is WAY too much sugar in 'em...read the label). There are sugar free versions...just avoid aspartame (which acts like MSG...for me anyway). My favorite was "Wired" which had 344 mg caffeine and 3000 mg taurine per 16 oz (hence the 2 hits per can line). As you can see...I still haven't figured out the extra spacing issue.......the "delete" didna work... Best Jon
  9. Hi cb...sorry you have to be back... That was a nicely written intro.... which helps us help you... Chdaddy beat me to the punch...he usually does...is a gentleman and a scholar...and I agree with what he said... Couple of thoughts re verapamil: instant release is better than extended release for most (not all) clusterheads.. I needed over 1000 mg/dy when in cycle (480 when out)...minimal side effects but you need to drink a lot of water and up the fiber to prevent constipation.... I would try taking divided doses throughout the day to keep a constant plasma level ....and I had some success timing doses approx. 1 hr before expected hits.... Re energy dinks: Red Bull actually has a relatively low level of caffeine and taurine than other brands and is ridiculously expensive (yur paying for adverts). Try Monster or Wired or any other brand with at least 100 mg caffeine and at least 1000 mg taurine. Grocery outlet stores carry 16 oz (good for 2 hits) for a buck a can Best Jon PS Could somebody lease tell me how to post w/o these extra spaces between lines...I can't find the format settings...
  10. Hi Kyle...welcome...sorry you have to be here... It's a good question but while we are all in the same boat we are all different too.... In my case...when episodic...a cycle would ramp up slow...last 6-8 weeks at high intensity...ramp down sloooooooow...then end with the worst hit of the cycle. I used to pray for that massive hit because I knew it meant the end... Best Jon
  11. Personally I can't watch these....about 20 yrs ago i saw one of ClusterChuck and it still haunts me. Can see the benefit of showing to the "doubters"......... Best jon
  12. ...thank you brother..... ...what I find most interesting...besides your post...is that another clusterhead and I have posted on ch.com that before/during/or after a hit... we craved a DARK room...just sitting and thinking....a cigarette was a reward I used "surviving". The smoking part may be inconsequential...and an oncologist made sure it was former...the "light" part... .hmmmmmmm ......... Best Jon
  13. ...I did not mean to sound so cold hearted about your friend....information like this could be of benefit to her AND others...and thank you for the post. I wish I had considered light effects sooner in my own ch career.... Best Jon
  14. ...not sure I follow....but ch pain is the worst I have ever experienced....and while I have prayed to pass out countless times...have never had the relief that would provide......and even then....it would probably prove temporary....
  15. hmmm...wow.....light affects circadian rhythm...circadian rhythm is hypothalamus driven...ch is hypothalamus caused/related/connected.....perhaps this person is more light sensitive than others...in which case...COOL...a possible mitigater for others.......... Best Jon
  16. ...very interesting question...I've heard of folks getting hit "harder" in different locations than home...or the opposite...but that might just be disruption in schedule...which was always a trigger for me.... ...I doubt there is a "best" place...and even if there was...I like where I am...I just coped...most clusterheads do Best Jon
  17. ...there is NOTHING...in my experience (broken bones, falls, cuts)... that compares in ANY way to a bad cluster hit....THAT pain is truly indescribable. Sure other stuff hurts...but if I think about it.. I could tell ya exactly what a broken hip hurts like, or a kidney stone, or or or...NOT ch.....
  18. ...personaly I would record the pain level as perceived at the time...related to previous hits ...there are remarkable stories of clusterheads reporting on pain OTHER than CH... which to "normal" folks would be excruciating....but to a clusterhead is "meh"...see women and childbirth... ...which is to say we have an altered impression and a pain tolerance uncomprehended in the medical profession...one of the few benefits(?) of CH.... Best Jon
  19. Hi John See this............... https://clusterbusters.org/forums/topic/4568-triggers/
  20. Hi Gabby...welcome.... "Typical" is...prednisone taper while starting a verapamil preventive. Not at all uncommon for hits to return after the end of pred taper (I had luck once with prednisolone IV then taper (stronger version of pred). BUT...further pred dosing unwise due to potential AWFUL side effects with extended use.... I'd go for an upping of the verapamil dosing.....as 480 mg/dy is the sweet spot for many clusterheads.....and some go even higher... (I used 960-1040/dy when in high cycle). Wise to do an ECG before and during upping of dosage to check for potential heart rhythm anomalies. Check on the version you are taking... SR Verapamil is sustained release...many...not all report immediate release better. Try to time dosages to just prior to expected hit times.... Never heard of onzetra...perhaps others can comment. I had EXCELLENT results from 5 mg Zomig nasal spray...99% effective for breakthrough hits if oxygen and energy drinks did not abort... Best Jon
  21. Hi....I would love to see these....and would truly appreciate an option other than FB. Whether it's age, tech disability, impatience, obstinance, knuckleheadness, knotheadness, or WHATEVER....dunno...I cannot fathom/handle/operate/navigate/understand/embrace/FB...it.just.doesn't.work.for.me.... one size does NOT fit all.....
  22. Also , If I could instantly lower BP , shouldn't the attack go away as well? ...the mechanism of pain is not related to BP....not in any anecdotal or scientific report I have ever seen....... If we assume that you get CH and then instantly your blood pressure rises. When pain goes down , so does the blood pressure but not as quickly maybe with 5-10min delay compering with onset. ...an argument against your theory....ch first?... Is there some trick that anybody is using so get the BP down quickly? Nope.....there's a whole med/pharm industry based on lowering bp...they haven't figured out "quick" yet... I assume that 100% O2 gets it down , also drinking a lot of water and possibly your feet in hot water. ALL excellent options...with many reports of success... I can usually abort it with O2, drinking a lot of water, E-drinks and feet of hot water. Many times it just comes back hours later, where im not as successful to get my BP down. It's called cluster headache for a reason...it's gonna come back regardless. I had good success for 12-18 hr relief with Zomig nasal spray (5 mg).... Is there maybe some other trick to instantly lower BP. I'd like to try it , before I go on verapamil or D3 regiment. thanks Twere I you...I'd give the D3 a really good run before I resorted to verapamil...which is "relatively benign" for many...but major side effects for more than a few...you won't get that with D3. Don't look for "tricks"... ​folks been trying that for years.....and anyone who tells you there IS one.....is a source of amusement...... Not arguing John...I will not annoy further......... Best Jon
  23. ....if that's the case.... you'd be the first I've heard of in 30+ yrs...BUT....one of the primary prevents in the ch battle is verapamil. tis a BP med which relaxes blood vessel walls and lowers bp....coincidentally and fortuitously reduces or eliminates ch for many. the sweet spot as reported by clusterheads is 480 mg/dy in divided doses. some...including myself... need go higher...like 960-1040/dy. might be your solution. find a good headache specialist to work out best dosages for YOU. best to try regular release vs extended. don't let 'em try Inderal...another bp med with some benefit for migraine but poor results for ch........................... best jon ps I will repeat myself at the risk of being annoying....careful with otc pain relievers...it's a risky cost:benefit ratio
  24. Hi John, Pain, fear, adrenaline, "dancing", heavy breathing, et al all increase BP and pulse. I too used to measure my BP during or after hits. Eventually I stopped because it was informing me of nothing more than something else to worry about. There is nothing you can do about it EXCEPT prevent/abort the hit in the first place...... And oh....I'd lose the Excedrin for anything more than a shadow...it'll tear up your stomach for minimal benefit. Best Jon
  25. Welcome Nordberg..... coupla questions... Have you tried a full pill before bed as a prevent? Many have...it apparently doesn't work....but wondering? Never having used the pill or researched is there the possibility of crushing the pill for oral admin...and/or perhaps sub lingually (probably tastes like used Redbull)...but just wondering? That pre-bed snort is curious.....since there is no need for fast acting at that time...and the half life of suma is short... I would expect this is somewhat wasted...of course...depending on experience with q#1. Snorting has been discussed on another forum....but from my recollection... the subject broached by folk who sent up alarm bells that made one immediately skeptical. Your reasoned post does not....I just need to point out that using a med in a way not offered, studied, condoned by the manufacturer(like maybe crushing like I said above )...while not necessarily/automatically "wrong"...is not something I would undertake lightly....and I urge folks new to clusterheadache to be extremely cautious in going "off instruction" with ANY med. I'd talk to a pharmacist...... And a couple other comments...night time hits...for me...were most amenable to O2...I didn't even have to fully wake up....which is actually an excellent strategy since one can get a bit of sleep between the multiples (I used to get) at night. I'd try again....minimum 15 lpm with non rebreather and hyperventilating...it's cheap and side effect free....just sayin'.... Good thought on water...tho it never made a dang bit of difference for my ch...many report it does...and it prevents lots of other issues.... which I unfortunately learned the hard way.... Best Jon
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