jon019

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......

Ummm...Alan...we all have the type of clusterheadache that relates to the trigeminal nerve...mine is right side. The point being?

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

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

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

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

#4...it was a bitch.......................................

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

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

Think duck..........................

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

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....

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

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

Welcome...we LOVE supporters...the ONLY ones besides clusterheads who understand....and I've always thought had it WORSE than us! I second chfather above....Batch will know and respond. He may be in Alaska right now...so to quote in lieu: "place liquid gel capsule under tongue and let dissolve... for quicker adsorption"....a spray version sounds EXPENSIVE and unnecessary............. Best Jon

sorry green...my apologies.......

thank you....and I'm already seeing a difference

hair hurts?...yeah, been there...so what...it'll go away...REALLY! ............... episodic v chronic...don worry son....both a bitch....you'll learn how to deal with either here... or ch.com... ...it's all in the attitude, planning and the right tools............... Best jon

freak...I like your style.....my version of the 'beer test" was ONE beer...sipped slowly. usually got blasted but it never occurred to me...ya gonna get blasted anyway...might as well get "blasted".....sheesh, 35 yrs of this shit and I'm still learning!

I'm with spiny.....the few (very few) times when I described CH to "civilians" and they sorta "got" it...was when I said: "even my hair hurts" (and I'm as bald as DJ)............... ...folks can relate to that...even if it's just a hangover..............

yo spiny....couple of weeks ago...used the 'contact us" function...there was no reply....I would prefer knowing "who" specifically to contact with technical issues.....have noticed the occasional multiple postings of same post...usually new folks...odd....but a glitch I can live with........my request was to be included on new posts of ANY subject and replies to current topics.........alas, tis sporadic............ ...find myself visiting site to see new posts...and I miss a few. us old retired f***s need the stimulation.... Best jawn

bwAAAAAA....I see MULTIPLE posts of some new topics...THEN see NO responses....OR... I don't even see new topics AT ALL...mighty glitchy..and frustrating!...and NO response to my request ......WTF ?????????.....................................................

Ummmmm...YES!!!!!...there aint no damn rule says we gotta deal with KNOTHEADS...........................................................................

Hi green, we all experience the beast in different ways...but the nerve pathways are quite clear and unilateral...top of head....temple...eye...teeth. mine started in teeth.... and involved all of those eventually. my prince of a dentist not only REFUSED to pull what he described as perfectly good teeth...but researched and DIAGNOSED me with CH when multiple GP's couldn't. you are describing a variation on the theme...the "good" part is that you know what your "signs" are...and therefore can put into effect your well planned countermeasures! like O2, energy drinks, mayhaps verapamil, imitrex or better yet.... Zomig nasal spray, D3 regimen, trigger avoidance, busting, etc.......you'll find it all here....... best jon ps...drop the naproxen...the benefits are negligible...the dangers plenty

Hi Mike...sorry you have to be here...but you'll be glad you are. Sounds like you need a new doc... a HEADACHE specialist...not just any neuro will do. I say this because that' a bad cocktail you're getting. Propanol is basically worthless for CH...it works somewhat for migraine. 80 mg/dy of verapamil is ridiculously low...so also worthless...most find the sweet spot to be 480 mg/dy taken in divided doses (immediate release is better for many vs extended release). Some go even higher...I used to take over 1000 mg/dy when in high cycle. Some have found success with Topomax...but the side effects are life altering and most stop. I couldn't function mentally at only 100 mg/dy...can't even imagine what 200 would be like. Caffeine containing energy drinks (minimum 100 mg caffeine AND 1000 mg taurine) taken at the onset of hit (preferably COLD and fast) is an effective abort for many. Any brand will do...I get mine at discount grocery stores for about $1/can...red Bull is the most famous but has a relatively low amount of caffeine/taurine and you are paying through the nose for their advertising. Eliminate all caffeine during the rest of the day....allows the energy drink to have a bigger punch as the body has not adjusted and therefor damped down the response. We all love us some O2...glad you got that going for you....Zomig NS (5 mg) is my abort of last resort when all else fails...effective 99% of the time for me....damned expensive tho and the insurance bastards make getting enough difficult. Look into the Vitamin D3 regimen (sorry I can't post the link...my wifi is wonky) but I'm sure someone else will post for you. Best Jon