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jon019

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Everything posted by jon019

  1. 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
  2. Wow Melissa...we really are sorry you need to be here...but you sure found the right place. Been doing this dance for over 35 yrs and the series of replies you got were as BRILLIANT as I've ever seen...starting with an awesome post from "fella"...................MY OH MY! My salvation was a forum like this (talkin to folks who KNOW...and will not tell you it's all in your head (even tho ironically it IS....sorry ch humor)), OXYGEN OXYGEN OXYGEN, verapamil on occasion, energy drinks, Zomig nasal spray (5 mg) for the breakthroughs)...which probably are contraindicated for a nursing mother...but keep in mind for later.....much less weird side effects (for me) than imitrex, AND the D3 regimen which Batch has developed and is cheap, easy, no script required, beneficial to overall health, and highly successful for a number of folks. Best Jon
  3. "I don't think I'd ever call a CHFather reply unhelpful." I nominate this comment from Racer as STATEMENT of the YEAR!
  4. A) Haven't seen Ben Khan's name mentioned in a long time...tis unfortunate as he is a hero in my eyes as nearly a Father of clustermasks and CH abort with O2. Best to you Ben...I hope you are well and PF. B') Early in my use of O2 as an abort I would sometimes get "rebound" hits 20 minutes after the initial abort...twas frustrating, annoying, scary, and a waste of O2....but it passed. Batch has postulated that it has to do with either failure to: completely abort hit (not on O2 long enough) or lack of "toning" of the blood vessels involved in constriction and therefor relief from a CH hit...ya gotta train 'em to constrict....that's good enough for me. Best Jon
  5. Same to you and yours brother! Best Jon
  6. Hi Michelle...welcome aboard! It's almost criminal that many in the medical profession do not know ANYTHING about O2 for CH. It's IN THE LIT...has been accepted as a PRIMARY treatment in countless neurology journals and papers and studies. I first learned about in 1985 (from National Headache Foundation) and tears of joy does not even come close to describing the feeling, relief and "I got my life back" reality. We LOVE to hear stories like yours!!! Re the O2 supplier....THAT is a screaming deal...give them a hug and a shout out from clusterville...I paid $14 a tank 20 years ago and had to buy my own rig. You might consider sharing the name and general area so other clusterheads can climb on that train. Insurance is all over the board on coverage...I've had at least 7 providers...some didn't cover, some did..AFTER a fight I got good at. The cost to them was ridiculous and my copay higher than yours ($13/tank...woulda paid anything!). I used to stare at the billing summary and feel bad for the insurance company....but THAT passed quickly....the bastards. The ones that get hurt were/are the folks with no coverage...and no compassionate supplier....and is what I worry about happening even more in the future health care mess coming.................. Best Jon
  7. never been...but my brother has....took a pic of a sloth so close you feel like you can reach out and touch...COOL animal....and I bet they don't get CH.....
  8. batch bro...I don't believe you need to claim the dyslexia...BUT...I would advise MORE bourbon (Makers Mark...or Wild Turkey in a pinch)) and LESS rum (yuck)...tho I still look for the rum you rhapsodized (name escapes me now...starts with a B?)...... MERRY CHRISTMAS....and MANY thanks for your tireless service to clan (clusterheads) and country............. Best Jon
  9. Hi...might wanna change the topic title.....antibodies...not antibiotics... btw....I was given rituximab as part of chemotherapy (2 1/2 yrs)....the incidents of ch since are VASTLY reduced...bear in mind tho...there are some side effects and alterations in your 'condition" that they can't predict or are unwilling to disclose...I am experiencing some 2 yrs after treatment....if you go in...do so with eyes WIDE OPEN!
  10. ....I wouldn't trust a damn thing from one of these. BTW...verapamil is a generic that is dirt cheap from most any legit pharmacy....and you need a new doc...
  11. ...that's why there is a special Mobius strip in hell for spammers...endless loops of nowhere that they so richly deserve....... THANK YOU....and Merry Christmas..... jon
  12. THIS was SO quickly and well handled I cannot imagine better...thank you...this family is in good hands. Assholes will be...tis a shame we have to worry 'bout them......
  13. Ummm...Alan...we all have the type of clusterheadache that relates to the trigeminal nerve...mine is right side. The point being?
  14. Welcome Alan...this is a great place to be for a clusterhead.............. Total guess..... perhaps you are altering your body/blood ph to a more ch resistant state.....Batch should be along to comment on that.... ...also...I have found that energy drinks work better (for me) with carbonation (faster absorption). Is this plain seltzer you use? Best Jon
  15. Hi Brian.....welcome...we're sorry you have to be here...but it's a good neighborhood!..... The range of "normal" or common for folks like us.... who are neither normal nor common.... is remarkably diverse. Even when you figure out what your typical cycle is...it up and changes...just to piss you off a little more. When episodic my "normal" was 6-8 weeks on/off for 20+ yrs....but within those years I had several cycles where the hits were less often...WAY more intense (each a 10) but lasting only 1 minute each. I contemplated a "deal with the devil" and thought..."I could live with this". Alas..."normal" returned...... Your pattern sounds a little different than most I've seen....but it is what it is..... Ask away......someone smarter than me will usually reply shortly....... Best Jon
  16. Welcome Steve.... Nothing I can add to the info from the ever-cogent, concise and rapidly responding Batch....he has got clusterville's 6... Will add in support that MANY clusterheads...me included... have concluded long ago that there was some connection between ch and allergies. Batch provides insight and research backed info on how to "handle" that connection. Many years ago ch was called histamine headaches...so somebody thought something. There was even an accepted treatment called "histamine desensitization". Over the years I have heard of very few, if any, cases where it was more than minimally/moderately successful. I suspect it may have been used as a standalone and therefore missing the other components of the D3/O2 regimen...or just not a powerful enough therapy to overcome the willful beast. Except for the drowsiness part.... I have had more success with Benadryl than Claritin....but danged if I would complain about something that WORKS! Best Jon
  17. Verapamil was effective for me at about 70% decline in hits. In high cycle went up to 1020 mg/dy...DIVIDED doses and a pre med ekg and another when dosage increased significantly. The side effects can be bad...but are considered reversible with discontinuation. In low cycle I used 480 mg/dy...and conversation on ch.com indicates this is the "sweet spot' for many clusterheads. 40 mg/dy is useless unless he/she is concerned about BP issues or other concerns....seems doubtful... The immediate release worked better for me...the delayed release not at all. Timing the dosage to expected hit times was somewhat effective..... I avoided side effect of constipation with lots of water and fiber....sexual dysfunction has been reported but was not an issue for me. Typical therapy is to do a prednisone or methylpredinsone taper (IV and/or tablets) to "break" a cycle until the verapamil became effective...typically 10-14 days.... If I read you right I couldn't disagree with your Doc MORE. Unsupervised dosage change of a medication...... especially with minimal instruction is: nucking FUTS! Best Jon
  18. #4...it was a bitch.......................................
  19. Tis a question of adaptation...eventually got to the point where I could drink a caffeine beverage right before bed and fall asleep no problem....but didn't need to. We are all different so maybe keep a journal and look for a pattern.... It's rarely spoken about now but I remember in the 80's reading an article in National Headache Foundation newsletter advising Doctors that "clusterheadache patients tend to present with a journal/diary of their headache experience"...it was a diagnostic tool...imagine that. We tend to be detail oriented/obsessive/compulsive perhaps? Now the info in the journal is considered more important...... And re "riding the devil"...with O2... the ride is OVER much quicker
  20. Awicher...hiya and welcome...you're in the right place....and aint no such thing as a "rant" in clusterville...we all been there 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
  21. Think duck..........................
  22. No, NO, a thousand times NOOOOOO on this bozo. One quote says it ALL...."said he'd have to read up on verapamil" THAT is standard treatment.... for YEARS!!!....any competent headaches specialist (and many neuros or even GP's) would be all over that script. Sheesh...this pisses me off..........follow the money
  23. Nancy...I get it...sounds like you do tooooo...we are rooting fer ya..... I remember well that simply chewing gum was a trigger...and damn...it pissed me off....
  24. Hi Nancy....WELCOME! I have my doubts re botox being beneficial for CH...tho some have reported success. This seems a perfect case for pain relief whether CH related or not.....and $10!!!...for something that can cost thousands. I'd be camping at the clinic door...twere it me......... Best Jon
  25. Yup...smells can at least trigger a hit...not sure about cycle. Some folks where I worked thought I was NUTS because if I caught a whiff of welding on galvanized metal (zinc) I would bolt from the room like a crazed rabbit (with no explanation)...it was a sure hit odor for me. Re your work situation...wow...it sounds like the causal attitude is...yeah, there's this pit....and,oh, some sewage gas.....If they won't respond to your plight the only thing I can think of is you gotta organize your fellow workers (are you in a union?) and descend on HR for relief. That's the kind of thing that can be fixed....no one except Ed Norton should have to deal with that. Never mind the headaches...it's a quality of life deal and the definition of a "toxic" or "hostile" work environment............... Best Jon
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