-
Posts
1,315 -
Joined
-
Days Won
165
Everything posted by jon019
-
Anecdotal: I've had multiple autoimmune disorders...CH was the first....MS was suspected by several neuros....lymphoma and numerous environmental/food allergies followed. Antihistamines were helpful during my early ch career. I can't prove or attest to a damn provable thing...sometimes ya just "know"...I await the studies to affirm...... Best Jon
-
I would just like to add...to the always pertinent, consistent, and delightful support from CHf. O2 should be the first resort provided to ANY clusterhead...from ANY physician....and I don't care what their "training". The literature is OVERWHELMED by the evidence for its efficacy!!! Myself....I would estimate over 5000 hits aborted by OXYGEN (that may be a low estimate). My sanity...maybe my LIFE....owed to a few green headed tanks..... a proper non-rebreather mask...well defined technique....and folks like you will find here and at ch.com....................................... Best Jon
-
I got mixed feelings on "stopping" what seems to be working. Batch...our resident jet jockey does this on occasion...and I can't explain why...spits and giggles?...dunno...maybe he'll share...... While it is always interesting to evaluate whether...through trial and error...something seems to work....there are clusterheads in ditches all over the world who found something that worked...then it STOPPED WORKING...with no rhyme or reason....I'm much too much a wussie to challenge the beast to "bring it on!"....
-
Shadows are weird...at one point a shadow...for me...was just the prelim for a hit. But as, spiny says...they don't always presage one. Mostly now, it's what I live with....sometimes all day (can I say a fella can get used to them (considering the alternative) without pissing you good folks off?) Fortunately...you will eventually learn the difference...which I really can't explain.....you just know this aint gonna progress. Odd in other ways, shadows are really hard to "kill" for me....very resistant to O2, energy drinks...and I don't waste a Zomig on one anymore...gotta save them pricey/insurance restricted bullets..........and usually a single point of pain rather than the trigeminal pathway..... BTW...guess I haven't been paying attn...don't recall hearing about ginger ...and I eat crystallized ginger and drink ginger beer regularly. Probably cuz I'm just too dumb to recognize "hey that worked!"............... Best Jon
- 32 replies
-
- 1
-
-
What a GREAT idea dm!! I always "hid" the ch as much as I could after years of blow offs and eye rolls. That's quite a friend ya got there! Best Jon
-
Similar here....had a great neuro...now at Stanford. We did a methylprednisolone (described by her as souped up prednisone) IV and then taper. Completely stopped the cycle (was ECH at the time) without need for verapamil. Damned miraculous I thought...but think again jonboy. The next two times same protocol had NO effect and I refused any further attempts out of 'pred fear". DID do the verapamil for many yrs...sometimes going over 1000 mg/dy....lucky to not have any consequential side effects and it was 70% effective in stopping or lessening hits....with O2 taking care of the rest and Zomig nasal spray (5 mg) for the occasional breakthrough......
-
anyone know how to disassemble for multiple shots?
jon019 replied to JamesF's topic in General Board
...and oh...I should have said don't give up if one pharmacy says no....ask around. And as one of our brothers here said(sorry, can't remember who)....if they don't stock it, ask them to order...they make good bucks on this type of drug....so they would have ample motivation.... -
anyone know how to disassemble for multiple shots?
jon019 replied to JamesF's topic in General Board
...if the doc won't prescribe vials (the only reason I can think of would be excess caution re possible overuse).....ask the pharmacy to sub the vials for the statdose. As one told me one time...."same med...same price"...just need a box of skinny needle syringes. ... ...price has come down since I Iast used suma...was $600.... ...might want to consider Zomig nasal spray (5 mg)....pricey but 99% effective/rapid for me w/o the "ooky" side effects...and no rebounds Best Jon -
Welcome!!! Glad you found us..... Best Jon
-
I believe it's inflammation of the trigeminal nerve (the source, at least partly, of our pain) with branches exactly as you report (it's huge). When hit hard even my hair hurt.....which is hard because I'm bald. Actually, it was one of the few things I could say to "civilians" that they actually got: "gee, it must be bad if even your hair hurts!" Try some ice or a bag of frozen peas or a cold shower.... Have you had an MRI or CT scan to rule out "other" issues? I don't know the details but you can be tested for MS.....I had some other neurological issues (unrelated to CH) that mimicked MS .... and went through a series of tests. Do you have a Neuro? Best Jon
-
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
-
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)...................
-
Gonna Get A Lot Of Flames, But I Think I Found The Cure
jon019 replied to Elliott's topic in General Board
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 -
Mark...are you using Zomig NS? That's my abort of last resort...99% effective...no rebounds...but that's me......
-
...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
-
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
-
"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
-
...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
-
Hey folks!......Bob asked a very valid question...why is this smart-ass the only one to answer?
-
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
-
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
-
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!
-
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
-
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......................
-
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