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jon019

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Everything posted by jon019

  1. ...made me an "odd feeling" groggy...quick sleep....strange dreams...zero effect on CH...…..didn't seem to matter where in episodic cycle I was.... ...definitely worth a try as I 've seen numerous positive reports....perhaps try different doses....10 sounds high (3 mg usual dose for sleep support)….. best jon
  2. ...absolutely....it's kind of classic..."stay stressed....NEVER sleep"!.... messes with hypothalamic activity, multiple hormones, adrenaline, dopamine, serotonin, et al...………………. …..I used to get blasted on a regular basis 20 mins after work (high stress job)....some kind of rebound effect from the high levels....oppositely, for some, stress is a trigger....
  3. ...forgot to add....in my particular experience proper technique for Zomig NS administration was critical (carefully read and follow instructions as best you can)....improperly done and it was useless...
  4. ...ok...you got a full plate there 'missing'....and there aint much that we admire more than supporters...CH or autism, doesn't matter...thank you, and I like how you've analyzed the situation! ...my experience with Zomig: typical 5-8 mins...occasionally 1 min. but it's mighty expensive (for me $15-30 per and that's with insurance) so ya really do wanna know it's actually working. I never used more than 2-3 per week, in high cycle only, possibly why I experienced no rebounds (and ea dose gave me 18 hrs "free" time)…. please excuse I know NOTHING about autism...so these are just thoughts : ….possibly the nasal spray is acting as a distraction or acting in another way besides CH abort. I'd consider a plain saline spray as a trial...maybe it's just the physical act? ….mask "phobia" is a definite thing for anybody...they are damned uncomfortable (hot, slimy feeling, claustrophobia inducing, etc)...I've been using over 30 yrs and I still feel like I'm being stifled.... at the same time I'm breathing! if he's willing you can get mouthpiece breathers...or just breath thru the supply tube....but you would have to somehow shut off nose breathing as you MUST have 100 % O2.... ….does he like energy drinks or other highly caffeinated drinks....unless there's an agitation problem it is quite an effective abort mechanism....anything over 100 mg caffeine and 1000 mg taurine (boosts the caffeine effect)….really cold works best for me... ….consider the vitamin D3 regimen....he's likely deficient (most of us are)...and it's good for far more than just CH... best jon
  5. ...I've always had luck (speed, efficacy, no rebound, no side effects) with Zomig NS 5 MG as my LAST resort abort when OXYGEN, energy drinks, and, at one point, verapamil failed (preferentially to Imex inject)....but that won't help you because many folks react differently. there's only ONE way to find out...ya gotta try..... …..do read the instructions carefully.....and use sparingly...triptans CAN cause rebounds.... Any experience with OXYGEN? Best Jon
  6. Freud...try backing off the caffeine til ONLY when you need it....lookin' for an ice cube down the back effect.....
  7. A professional, competent, PATIENT-oriented oxygen supply service will NOT make a new patient's life even more miserable (just because they used the "wrong" terminology) by throwing out ridiculous comments like a rebreather mask will "kill you". A rebreather simply gives you a mix of O2 and room air....which won't work for CH....but lots of other valid uses for folks WITH a prescription for same. And which, BTW, will not kill THEM either! Sounds like something a person or company in the wrong business would say.....instead of RESEARCHING what CH PATIENT requirements are...then providing THAT....and explaining away any confusion. Seems like you need to educate them...just like many a clusterhead has had to educate their treating Doc. We have to be our own best advocates...…………... Best Jon PS If all ya got is the mask pictured above...tape over the holes so you are not getting any room air (slightly lift mask to exhale)....or just breath directly from the hose sans mask...
  8. Hope I'm not misunderstanding. Sounds like they are sending you an O2 concentrator: "I don't have a need for E tanks". NOOOOOOOOO!...won't work...you NEED tanks...at LEAST e's...better yet, M60's...or the welding tanks discussed before...………. Best Jon
  9. I am amused and delighted with the O2 stories...if there was a 1000% like button I would use it. My experience very close to what is described....seems the lower down you get in the O2 shop organization chain... the more likely you get what you need (provided you are in the good graces of the guard dog (shop mgr). Usually picked up my own tanks...by happenstance one day got to know the back room tech..."Norm". Knew about CH, knew the requirements, instrumental in getting M60 tanks in house (previously only e-tanks), offered to link tanks to get the 25 LPM I asked for, GAVE me a $250 M tank regulator "use as long as you need". If there is a clusterheadache hall of fame...Norm belongs! Having had experienced many of the horror stories re obtaining O2 you see reported here and elsewhere... you may understand why I almost bust out crying in the middle of a business office. EVERY visit after I bypassed the front desk and steamrolled to Norm in the back room.... Wise advice to get on the good side of delivery driver...they are usually people persons and can and will do stuff for you that corporate or "office" can't or WON'T. I'd throw a tip at 'em.... Also always found remarkable the apparent disinterest in "tank accounting". They made damn sure I paid on the way out.. but NEVER asked for or accounted for the tanks afterwards.... Best Jon
  10. Hi... ….CHf way ahead of me as usual....and I echo his outrage! Sorry, but you're 0 for 2......with their first ignorance being about the MOST IMPORTANT abort available: OXYGEN. All the other sh** should come AFTER that and ONLY if the oxygen doesn't work. Second, amitriptyline is an OLD line med (Was prescribed over 25 yrs ago...for ME...no benefit...bad side effects). Tis normally used as an anti-depressant and it or related meds have had some benefit for migraine...have never heard of anyone with CH benefitting. A) you GOTTA find a headache specialist or a pain and headache clinic. Are there any college teaching hospitals close by? B )find some way to get oxygen...welding or medical.... it doesn't matter (depending on health ins you may want to find even a general MD who is willing to prescribe). C) start the D3 regimen now....even if you didn't have CH it's good for ya Best Jon
  11. Moxie...so sorry for your loss. Whether you celebrate the season or not.... just know you got family out here who care and are thinking of you! Best Jon
  12. Hiya MG...maybe the water based (vs oil based) version would work better... ...and EXCELLENT point re meds...SO TRUE. For example... I have GI issues with Mg Oxide that are non existent with Mg Citrate...go figure... Best Jon
  13. ...yup…..everything spiny said!!! ….just wanted to add for folks new to O2.... from personal experience...usually the hard way. there IS more than one way to properly use oxygen...and I worry that folks try an "accepted" particular way, it doesn't work....so they think and we see the most dreaded phrase: "oxygen doesn't work for me".....or worse yet, just go away sadder than they arrived.... … OXYGEN inhalation is the near miraculous salvation system for clusterheads....owe my sanity and perhaps my life to it....as do MANY others...it's FAR too important and proficient/efficient/sufficient to NOT try every possible way to make it work!! ...personally I use spiny's method of breath and hold...others find hyperventilation on O2 works or works better....plain air hyperventilation is my measure of last resort when caught out on a mountain trail with no canned O2....sometimes it even works! (don't forget the 5-Hr energy bottle in yur pocket...ALWAYS)…. ….early on I used < 8 LPM quite successfully (no money no insurance)….later 12-15 LPM....no idea if 15-25+ would work better because I can't breath that fast...but I'd sure try it if lower lpm's don't work for ya...…. ….you CAN expect that different cycles will react differently to O2....at times staying on for a few minutes after hit abort helped prevent getting re-hit soon...other times it was a waste of O2.....only experience will tell ya... ….all the above assuming ya already got the proper gear: canned O2 (no concentrator), non-rebreather mask or direct mouthpiece or some type of demand valve.....use the wrong gear and it probably won't work and sadly you'll get the wrong impression (btw....aint NOTHING wrong with a garbage bag full of O2 )…. Best Jon
  14. Hiya TCB...welcome aboard! Siegfried is absolutely right....great points. One of the frustrating things for clusterheads: we have the same thing.....yet we're all different! Find yourself a headache specialist to sort it out... and don't dismiss the possibility of multiple headache conditions. Different treatments work for different types...so ya collect the ones that work. I'm shocked (dismayed) you apparently have not been prescribed OXYGEN !?. LONG time first line primary CH abortive, well discussed, researched, and approved by the medical community...the right flow (at least 15 LPM), the right mask (non rebreather), and the right technique....and lives have been changed and saved. Look into Vitamin D3 regimen also...…. Best Jon
  15. It's not funny...it's f*****g HILARIOUS! Thank you! I saw that spam and couldn't quite figure out what they were selling...not THAT'S stupid...…………….
  16. Dan, ...only a little to bit to add to the most excellent post from CHChris (and I'm likin' the double "ch" too)... ….you are already well ahead of the game with your O2 procurement. Many of us have had to pay out of pocket... and it seems more and more these days O2 shops are not as willing to accommodate that like they used to. As Chris noted....many also charge the same rental for different sized tanks....which means a larger tank (even if costing more) will be more cost effective in the long run.... ...are you sure about extra cost for delivery? I used to pick up my own but there was no cost difference if I had delivered (self pay or insured). Sounds like you've already looked at that... but just in case... ...in the long long run I'd do the welding oxygen dance if I were you....scores of other clusterheads do... ...here is the link for the clustermask….it remains one of my FAVORITE possessions: http://www.clusterheadaches.com/ccp8/ ….you might want to poke around that forum too
  17. Hey Stev....now THAT'S a winner/enlightened Doc (or practice)! Very happy to see this. Would you mind posting the Doc's name and general area...might help a fellow clusterhead in the area. Best Jon
  18. Dan.....anything smaller than an E tank is a waste of time and effort. See chart at this link: https://www.bing.com/images/search?q=o2+tank+sizes+chart&amp;qpvt=o2+tank+sizes+chart&amp;FORM=IGRE Don't they deliver? That's usually how O2 shops operate.....I got get 6 e's and/or 2 M60's at a time (picked up myself but was convenient)...
  19. Yo Stev….an MRI/CT is advisable for diagnosing because there ARE conditions that mimic CH...and may be considerably more dangerous. Did the original Doc order one? Re previous question. I don't bust but if I did I would tell my Doc....YMMV. HOWEVER...you REALLY need a headache specialist... cuz a Doc who "isn't clear on what CH is" is a scary situation.....unless he/she is willing and EAGER to "look it up" and then DO something. Some are...some aren't. Best to have one that already knows. Many a clusterhead has been misdiagnosed with "sinusitis" cuz the Doc may not have ever seen a clusterheadache patient. I had a life threatening ailment "dicked around with" (quote by the Doc himself) cuz they thought sinusitis (old med proverb: if ya hear hoofbeats think horses...NOT zebras).>>>>>bingo-bango you got sinusitis! That said....I have no idea what your Doc is looking at and what your health situation is. You COULD have sinusitis (also)...don't dismiss out of hand cuz of some old cranky clusterhead.... Best Jon
  20. ...un piccolo mala testa (small bad head)...I would suspect every clusterhead has a slightly different definition...mine would be a hit (yes, it's STILL a hit) less than 2 on a scale of 10...am totally functional but know it's there and MAY lead to somethin' worse. what some clusterheads call a "shadow" would be called a bad headache by civilians....but then we are jaded....
  21. Hiya Stev….welcome aboard! I'd list everything you take for the doc.. and ask if there are any questions or concerns (kinda backwards, I know, but...... I LOVE that story DD! The only time a medical professional ever showed interest learning about CH from me was a Pharm in a hospital (Doc had prescribed intranasal lidocaine...yikes!). Coming off a hit so I only gave her a rambling 20 mins...when I thought about it later I despaired at the opportunity lost...coulda talked for hours...and maybe saved another clusterhead some grief...……….. Best Jon
  22. Hi Dan, Also have not heard of or experienced O2 making things worse...suspect it's your cycle ramping up. You are doing exactly the right thing by staying on for a few mins after the hit subsides. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 5-8)...but back again in an hour. What I did was (guessing here) learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breath-breath-breath-breath. Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life. Hoping someone with far more expertise in O2 checks in here...it's a good question others may benefit from.... What size O2 tank are you using? An e-tank would last me 1-3 days... so I BADGERED the local Lincare supplier to stock M60 tanks (needs a different regulator). About 3 times the volume so 3 times the lasting power. Heavier but not enough to dissuade... as they have a really neat handle that makes sclepping easier than an e without a cart! No idea if the tapering off Dopeymax has any effect either way...it never made any difference for me.... beyond the worst side effects of any med I ever took. Look forward to the brain fog lifting and best wishes on the busting...you're in the right place for that. Best Jon
  23. ...I resemble that remark (in more ways than one)...hottest shower on the head I can stand....know of another who alternates hottest/coldest (he likes a frozen bag o' peas...…..)
  24. ...same as Fun Times here...it's our wonky hypothalamus (body temp regulator amongst MANY other functions )...source of the beast in the first place. a wise diagnostician would take this into account in a differential diagnosis
  25. Hi Maria...you and your MOST EXCELLENT hubby/supporter(we LOVE us some of those) have a whole bunch of folks here who genuinely feel your pain and desperately want to help. I would caution you and US not to throw EVERYTHING you hear and read about this at the beast at the same time. One of 'em is gonna work...we KNOW that...but the danger becomes when it does.... WHICH ONE!? Systematic trials of known treatments (e.g steroid taper (10-14 days), verapamil commencement (480 mg/dy of immediate release version is reported sweet spot for ch), and O2 is one….with triptans (Imitrex, Zomig, et al) for breakthroughs. Busting is another with O2 standby. Oxygen plus energy drinks another. D3 regimen can be taken pretty much no matter what else as it's good for a body regardless of ch or not. Like CHf said about Indomethicin...may take a couple weeks to be effective. I'd also read the O2 file for proper usage as many have given up on this life saver too soon due to inadequate flow or mask or technique. Is the "a" preventive amitriptyline? That's another...lower on the success list than others...but I'm not your doc. Hoping for a ch cognizant neuro for your appt...and just delighted that your system allowed for an emergency queue jump. Best Jon
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