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jon019

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Everything posted by jon019

  1. This is absolutely fascinating and I appreciate the posting. It also seems to match, at least partly, "batch's" D3 routine...which includes a loading dose of B-complex followed by other co-factors. I do have one question...guessing it might be related to translation from Italian to English....as it is quite confusing and does not match the rest of the paper's discussion: comments? "There is no therapy for CH. However, there are some effective treatments for both the acute painful attacks as well as for the prophylactic treatments." ...of course there are therapies....are they saying no SUCCESSFUL therapies for THIS patient? and unless we are talking poly pharm...I don't know what is meant by "some effective treatments for prophylactic treatments"...why would you have to treat the treatments? Best Jon
  2. Mark...careful...you should speak with a pharmacist...some meds are DEFINITELY NOT to be crushed or chewed...................it changes all the absorption characteristics....like too much too soon or wrong area of absorption (intestine v stomach)...................
  3. Mark...that could be described as one diagnostic indicator of CH.....many here can tell stories re getting SLAMMED post stress (I could wax demented on it). One member on another site has advised something like: NEVER sleep...NEVER relax. It is, of course, clusterhead humor.....but funny can be found in truth many a time....see George Carlin..... Best Jon
  4. Mark...are you using Zomig NS? That's my abort of last resort...99% effective...no rebounds...but that's me......
  5. ...yes.....the depression battles for me were ALWAYS when out of cycle...damndest thing....everybody, including my Doc kept asking me if I was depressed...almost hoping so in some odd way....maybe thinking that would confirm I wasn't exaggerating. For me, time was the healer....but it's no shame to seek and get help..... ....and also, i have to tell a potato story: I worked with a number of Japanese fish technicians...one named Yuji had a child born in Japan while he was over here. he showed the picture around and said: "he looks like a potato!" (he DID)...we all thought that was hilarious and from then on, and even now 20 yrs later....we always ask him how "potato" is doing? Best Jon
  6. Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling..... Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... Best Jon
  7. "He said something like, "What, are you going to carry an O2 tank with you everywhere you go?" Maybe!) " That's not a good sign....a competent "headache doc" knows FULL well that O2 is the FIRST therapy choice......comparatively inexpensive, rapid action, minimal, if any, side effects.... I "carried" an e-tank in my car, had an e-tank in my office, and of course a nice little rack of e-tanks (later an M or two) at home. A couple of internet purchased $25 regulators and a clustermask or two and I was GOOD TO GO>>>>>>> Best Jon
  8. jon019

    Anesthesia

    ...excellent post spiny...I had a similar procedure and a similarly attentive/responsive/ anesthesiologist (my luck, she had done a neuro internship). Specifically requested NO nitrous oxide as I believe it to be a trigger. Woke up...no hit! ....later....a much more serious operation..... I found the older abrupt anesthesiologist much less willing to consider the issues with a ch patient (if he even knew what it was) and I woke to a MASSIVE 8 hr killer hit....and I think I drained the hospital O2 tank.....to no avail....so BAD luck that time anyway...I hope anyone needing surgery reads your post AND finds a friendly ear.......... Best Jon
  9. Hey folks!......Bob asked a very valid question...why is this smart-ass the only one to answer?
  10. Well...gee-golly Bob...that's phrased more like a command than a request...but I'll play...YOU have my highest regard.......... 1) I look for a doc who is precise, concise, and UNEQUIVACOL...none of the "maybe this or that" bullshit.......... 2) I leave docs who are deficient in continuing education...."didn't know it then...don't wanna know it now"...bye-bye dumb-ass There is NO substitute for a headache SPECIALIST........all the rest are guessing...... PS....when I was a kid our family dentist used to give lollipops as a 'reward" for good visit behavior. Even at 10 I knew this was WRONG... Best Jon
  11. fifty....re chronic...a repost of previous.... "My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable." You can ALWAYS come here.....BIG ears!.....some are under a cowboy hat................................ Best Jon
  12. Hi fifty...welcome to the party over here....these folks are remarkable! ....ch.com saved my life 20 yrs ago....much quieter there now...seems many folks have moved on or to facebook....made me sad.... ...when episodic it was 6-8 weeks on/off for 23 yrs...very few variations....but I've seen others report same as you. When turned to chronic there became no rhyme or reason for high or low cycles within....is a trick of "the beast" to keep you guessing.... ...if busting worked before...no reason suspect it won't now...I've heard you have to wean off triptans first...I'm sure someone with WAY more knowledge on this than me will be along.... ....just recently I've seen a report or questions re Imitrex trigging cycles (maybe it was you on ch.com). I've never seen it reported before as triggering...but frequently reported as a rebound causer. personally i find Zomig nasal spray (5 mg) to just as effective...minimal side effects...and no rebounds...costs the same...sheesh is it pricy.... ...condolences on your Dad.....I was caregiver for my Mom in her last few months and tho I was in mid cycle...I never got hit once. When she was gone...BLAM. I attributed it to stress as that was always a "protective"....so grief post stress could very well be a trigger....dunno... Best Jon GO EAGLES!
  13. Yup...lissen to spiny....I use the generic version (loperamide hydrochloride) for the "problem"....inexpensive and life changing! Takes a bit of effort to dial in proper dosage and timing....but you WON'T be sittin" and sorry.................................. Best Jon
  14. I agree wit CHf....what's the point????...pun intended. I've had 1 minute hits and 8 hr hits (yes I know...both outliers on the ch "typical" spectrum)....and it never occurred to me (36 yrs now) to "point score" duration. Intensity yes.....it can tell a clusterhead where on the bell curve of a cycle he/she is......................
  15. Hi BCJ...welcome....OXYGEN OXYGEN OXYGEN....you won't be sorry.......... Re nasal spray and congestion...me too...so I'd use the opposite nostril (rare that BOTH blocked)...worked just fine..99+% of the time. Zomig 5 mg....give it a try...my abort of last resort...damned expensive.....didn't quite care at the time..... Best Jon
  16. Hiya sleepless (we KNOW that feeling)....welcome aboard...we got yur 6.. Prednisone..or methylprednisolone (IV and/or taper)...are used to BREAK a cycle...maybe 10-14 days worth. After that...whatever preventive you at using is SUPPOSED to kick in. Continued use of steroids beyond a "break cycle" taper is decidedly NOT wise. That amount won't have any long term effects...but it is NOT a med to be used long term............ Best Jon
  17. ...neither high nor low pressure seemed to make a difference for me....what did was RAPID change in either direction. I live in the rainy NW...noticed that it was always sunny on the way to the O2 shop after a rainy spell...low to high...blam!
  18. ...the southest I ever been was mid-California....still got hit like a nail under a hammer.....Holly the dog was most compassionate. Old song: "if ya can't be with the one you love...love the one you're with". CH or not...I live where I Iove....aint movin'...nope......
  19. Hi and welcome! Sorry you need to be here...glad you found us..... To add to spiny's excellent comments: generally reported sweet spot for verapamil dosage is 480 mg/dy...divided doses...try timing doses just prior to expected hit times. Some folks...like me.... had to go to over 1000 mg/dy....a regular MD will freak at that number...an EXPERIENCED headache specialist will NOT. Typically a prednisone or methylprednisolone IV or tablet taper is undertaken when starting verapamil...frequently (but not always) will break a cycle and give the verapamil time to kick in (10 dys to 2 weeks typically). Clusterheads tend to call Topamax: Dopey Max ....as the side effects are life altering and unpleasant...... Look for the cheapest energy drinks that contain at least 100 mg caffeine and 1000 mg taurine...they are synergistic. Red Bull is the most famous but is WAY expensive and lower in these components than you need. Drink as cold and as fast as possible as soon as a hit seems imminent...carbonated versions seem to work better as absorption time is decreased..... Tell us about how you intend to use O2...the proper way will leave you in tears of joy and disbelief! Best Jon
  20. Double ditto...sometimes it was the only thing that got me through.......
  21. Thank you for posting this CHf....the willful ignorance and blithe dismissal of evidence is beyond my ken,,,,.and most surprising.... it's NOT about the money. I don't get it...never have......................
  22. ...and you've been diagnosed with ch.... right? Old book...old news....
  23. Many yrs ago I was prescribed amitriptyline...made getting out of bed in the morning the days major accomplishment....and not a dang thing for CH. It would help to know your Doc's reasoning (like maybe its for more than the CH)...but I would be worried he/she ran to their meds book and picked out one of the OLD migraine meds. I went through 10 or so..... Best Jon
  24. Macad...thank you...that is excellent observational detective work. I used to smoke....I still miss it 5 yrs later...but I figured trading one nasty habit for another that is marketed as "safer" was fooling only ONE person...me. Small thread hijack but related: FOOD labels.....which I used to write. Read 'em like your life depended on it....your CH health certainly might. MSG is a trigger for many...it comes in many forms and can sneak up on you...there are lists on the internet but several include autolyzed yeast, hydrolyzed vegetable protein. Many foods contain naturally occurring glutamic acid (e.g. mushrooms, tomatoes) ...a precursor to glutamate. Diet drinks containing aspartame are a trigger for me and I suspect others...aspartame acts similar to MSG as a vasodilator. Those "uncured" meat products....where they scream no nitrates/nitrites (mostly a migraine trigger...but I suspect some clusterheads too) are BULLSPIT. Note the "exception" in tiny writing: "except for those naturally occurring in the added celery juice". HEY...nitrates is nitrates...many vegetables contain "natural" nitrates....like celery! Again, check the internet for lists....those hits out of nowhere you get...might be from your food. Best Jon
  25. Hi littlecush...welcome...sorry you gotta be here...but tis the RIGHT place! For many years I was DESPERATE to "explain" to non clusterheads what it was like. Even best of friends, coworkers and family members would roll their eyes and "yup" me. There is even a marvelous letter penned by Simon explaining what the ailment is...quite thorough and touching...and I even gave up giving that to folks....it just didn't register. The ONLY person...other than other clusterheads and ONE neurologist..... who ever got it..... was a coworker who had a friend with CH he used to drive to the ER. Anymore I just don't give a damn....got more important things to concentrate on....nobody hears nothing but positive from me. Getting hit is a bitch....in between hits? life is wonderful. Mind game I guess............ Re work...I get it...used to worry obsessively about how I "appeared". This kind of depends on the type of work and the kind of folks you work with and their regard...or not.... for you...beyond your "ailment" ... YMMV. I just worked my ass off in between hits or inability to function: accepted extra work, extra hrs, extra responsibility, extra anything. I know this sounds glib....and it is the hardest thing to do and NOT always possible....but I figured I had no choice. Additionally, the stress of work was a preventative...until I got home...THEN got BLASTED..... What made the above...and life in general POSSIBLE was OXYGEN!!!!!! I carried an e-tank with me everywhere I went...with a clustermask purchased at ch.com (my favorite possession). I hit that baby with an energy drink appetizer at first sign of hit.....and back to work. I sure hope you got access to O2 ...and with proper technique you will be transformed.................................... Night time hits are particularly cruel...pain, sleeploss, aggravation, etc..... am quoting myself from another post below: When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep. Ya gotta work the mental aspect too. YMMV...this is what worked for me: Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out. Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat.... Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................ Best Jon
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