jon019

Totally out of left field but be SURE to mention to your dentist if you are taking Fosamax (alendronate) for osteoporosis/osteopenia....it is RARE but he/she should know because one potential side effect is jaw necrosis...which sounds a whole lot like NICO....may want to discuss discontinuation or different med prior to major dental work....or at least close monitoring.... ...had my wisdom teeth out at 19....CH started at 26...TOOTH pain ONLY for a year....dentist (prince of a man) REFUSED to pull what was, quote, "a perfectly good tooth"...so he researched and HE was the one who diagnosed CH (ahead of 3-4 PCP's)…………..

Which is why we always encourage folks to find a headache specialist (good idea to have a cardio too). Most PCP's are truly freaked by the amount of verapamil some of us need....and won't do it! The best neuro I ever had was amazingly nonchalant about increasing my dosage when necessary and trusting me to titrate on my own depending on cycle strength. I have yet to see an explanation for, or have any idea why many clusterheads can tolerate massive doses that would put a bp patient on the floor. Guessing it's partly confidence in the physician and physiology of a clusterhead vs a bp patient.....dunno……….

for me...about 70% effective preventing or minimizing hits (not consistently tho)....O2 and energy drinks for the other 20-28%...Zomig NS (5 mg) for the 2% breakthroughs.... …..all while episodic....480 mg/dy in low cycle....over 1000mg/dy in high cycle....always IR as the extended release did not work at all...divided doses timed to expected hit times was sorta successful... ...minimal side effects but I always drank lots of water and increased fiber as this med can be quite constipating......also reported ED concerns....and potential heart rhythm problems (which is why an ECG before starting as a baseline....and whenever dosage increased significantly is wise)...these issues transient with discontinuation ….one of the cheapest meds I've ever used...I think about $10/mo in generic form (Calan the brand form)...the tabs sure are BIG though.... ….there has been much discussion over the yrs at ch.com re this med causing extension of cycles or changing episodic to chronic.....have seen NO studies that confirm this anecdotal evidence.....I did become chronic after 23 yrs of episodic and gut feel is that verap was not responsible...but really no idea ...no longer using....

...for me....periodically from 1985 to a few yrs ago... it was Lincare at $10/tank.....eventually $12 then $14. Used to order up tanks when I travelled using their online "travel arrangement"..... worked exceedingly well with no complications....Oklahoma and CA (multiple times)…. Best Jon

Hi Rowdy.... ….no insurance myself for many years....and this is admittedly a few yrs back....but I marched into a Lincare shop...WITH a script for O2...and committed to paying cash DOWN. Over the yrs it was "sometimes" a problem...but all depending on the particular shop MGR. Mostly they were happy to oblige...MONEY talks. Try a personal visit with the Mgr...a sincere face with a cogent narrative for a problem goes a long ways....otherwise CHf just gave ya a good alternative... Best Jon

Haz…. ….I prefer a "chewy" stout myself....the anticipation of such frequently got me through a cycle in anticipation...I get it.... ...fascinating re verap...have never heard of a COMBO of IR/ER....myself, went over 1000 IR (ER didn't work) in high cycle....480 in low....had never considered combining the 2 forms...gonna have to think about that (already thinking your Doc has some "out of the box" that thinking I'm liking...) ….which is why D3 makes a lot of sense....65 pounds sounds high....but I've got Costco where the whole smear is pennies a day... I'd still give 'er a try... ...Medrol is methylprednisolone...supposedly a turbocharged version of prednisone....an IV and taper of same stopped a cycle the same day for me ONCE....nada the next 2 times.....I don't do it anymore...the potential side effects scare me... ...stress, for me, was a prevent...it was the "come down" afterwards that blasted me....completely strange thing about CH...we're all the same...YET, all different...…... ….Zomig nasal spray (5 mg) has been my abort of last resort...for me doesn't pack the "wham" of suma….99% effective, 18 hrs "ch free", and NO rebounds...'bout the same price (here)... ...OXYGEN saved my sanity and perhaps my life...I'd hit that FIRST...might eliminate ALL meds.... found it especially valued at night with wakeups every hour KILLED in minutes... and able to get back to sleep immediately.... Best Jon

Hi Haz...clubhouse is open...we kinda wish you weren't here so soon ...didja stop the verapamil after the previous cycle ended? what dosage? what form: IR or ER? ...It's unusual for verap to work by itself quickly (depending on yur definition of quickly) w/o a Prednisone or Medrol taper...but could be. makes me wonder if that cycle was almost over on its own and you got good timing... ...do you have a "typical" cycle length? ...I'd go for the D3...good for ya anyway... ...how about OXYGEN?...it really is the primary and most accepted initial treatment for CH.... Best Jon

Hi Leah....welcome aboard...sorry you need to be here.. ...couple of thoughts: have you tried oxygen? Saved my sanity and perhaps my life. Kept tanks at home, in the car, and in the office. Even when travelling I was able to arrange for tank delivery to my hotel through Lincare….it was an easy online sign up. With the proper mask and technique it became a "normal" thing for me....and even coworkers got used to seeing me 'use"...without calling 911 :). Quick, easy, relatively cheap, NO side effects.....ya got nothing to lose. ...my abort of last resort is Zomig nasal spray (5 mg)….99% effective after O2 (rarely), meds (verapamil), and energy drink failed....with no rebounds and 18 hr window of "safety"...YMMV but might be worth a try... ...the D3 regimen is not as intimidating as it looks....while it's a bunch of different supplements....it is just supplements.....and even if ya didn't have CH it's good for you and very inexpensive. Get yourself a pill caddy and a routine and join the 80% who have found success... ...good luck with your training session....one of my proudest achievements was giving a sales presentation to some VERY important clients while getting hit with a 7-8 CH. I had to keep turning my head so they wouldn't see the tears coming from the hit side eye....and I don't even remember what I said...but we got the contract! And maybe you're one of the "lucky" ones...and stress is a prevent...just watch out for the wind down hit afterwards...those can be a bitch! Best Jon

Hi mandy, ….yup... what CHf has already said...and I am alive and sane because of oxygen....and the D3 regimen sure can't hurt..... ….episodic to chronic occurred for me...after 23 yrs....it wasn't nearly as bad as I anticipated... ….verapamil worked well for me for yrs.....tho I had to increase dosage from 480 mg/dy (reported sweet spot for clusterheads) to over 1000 mg/dy in high cycle...and back to 480 in low cycle. The immediate release worked whereas the sustained release did not. Have seen many reports that reflect Racer1's experience....i.e. they felt that verapamil was instrumental, or at least a contributor, to going chronic from episodic. I was never sure...but could be... ….one other note....I use Zomig nasal spray (5 mg) for my "last resort abort" triptan....99+% effective for me in 5-8 mins, without side effects and rebounds....none of the effects I've seen or heard re sumatriptan (Imitrex)...may be just me...just as expensive but worth a try.... Best Jon

Yeah...you need a BUNCH of e-tanks (and a rolling cart caddy)...or better yet a lesser buncha them... AND a couple M-60...at least twice as much O2 (someone help with volume please)….and serendipitously I was in Safeway today and "Wired" was $0.68/ 16oz can. Not too long ago I woulda filled a shopping cart at THAT price (normal $2-3 ea). Slight correction to caffeine level...it's 344 mg/16 oz (different varieties so read the label)…taurine is indeed 3000 mg...…. Best Jon

My favorites are "Wired"...with something like 320 mg caffeine and 3000 mg taurine per 16 oz can. Half a can was all I needed per hit (drunk SO COLD and FAST it hurt)....and "NOS" because of all the energy drinks it tastes the least objectionable....actually, depending on your frame of mind, pretty good. Really, the brand doesn't matter....as long as you get at least 100 mg caffeine and 1000 mg taurine...the only difference is taste and cost. Get mine at grocery outlet stores for about $1/can....or 5 hr energy type 2 oz for 99 cents. Red Bull (relatively low in the ingredients you need) was the first and advertises heavily and therefore most expensive...you don't need to pay for that...….. They all come with sugar-free versions now...just beware of aspartame...which can be a trigger like glutamates. And, in my case, sometimes I needed the sugar.... as low blood sugar was a trigger..... Best Jon

THAT...is VERY good news. Lots of folks 'happy dancing" out here. A physician who is an advocate and apparently up to date in CH treatment! Would you mind sharing the name and location of this Doctor? ...many folks come here looking for exactly what you have found. Best Jon

Hi nana...welcome aboard! Tinnitus for many yrs following poor hearing protection in loud environments (I worry about the future for folks with the LOUD earbuds)...but while both (CH and Tinnitus) started at about the same time....they never seemed connected in any way. Now getting much worse with age...and harder to ignore... Best Jon

Long slog from Pasco but may be worth it. I used to be a patient at the Swedish Pain and Headache Center in Seattle. BEST neuros I ever had.....but both I know of are gone. The University of Washington has a clinic (first link below)...and a highly rated specialist Neuro at the Medical Center in the second link.... ...both I suspect with LONG waits. For ANY neuro you call be sure to indicate "clusterheadache" and if you are currently in cycle....and be willing to fill in a cancelled appointment. Some of them understand the urgency for treatment of this condition....and might be willing to work you in sooner.... Spokane closer ...I've never seen any reviews for the headache clinic there.... https://www.uwmedicine.org/locations/headache-uwmc/care-providers https://www.yelp.com/biz/natalia-murinova-md-seattle-2

Hi Bonds...I second CHf....good stuff. Especially agree regards Topomax...limited success (compared to other available) with nasty side effects. Interesting re cigarette smoke....I used to smell ammonia....and I could tell how bad the cycle and the hits were gonna be depending on the strength of the smell. It was weird and my doc had no clue either.. If at all possible find a headache specialist....regular neuros don't necessarily have any more knowledge re CH than any other doc. And, any doc that discusses AND prescribes OXYGEN first....jump up and down and give 'em a hug. THAT'S where to start if ya got CH...….. Best Jon

...well...it's like picking up a turd from the clean end...can't be done, right? But ya been doing it.... ….I think most of us have been there...and AFTER about the first 7 years, where I complained to anybody and everybody... I'm sure it became "avoid THAT whiner". I FINALLY figured out the age old question of "why ME!!??? The answer was : Why NOT!? My favorite epiphany....it has served me well through life's many "dangers, toils, and snares". Went to ch.com and here and started trying to "be the change I wanted to see"..... I am hoping this does not sound glib...it took me 7 frigging years to figure... and laughing on the outside while crying on the inside pretty much describes the WHOLE experience.... Best Jon

Oh, and he said that the triptans CAN'T setup potential "rebound" headaches Ummmm...that would be BALONEY !!!...……..Zomig, FOR ME did not....suma...for many, HAS.....YMMV...either way. Consider them ONLY as a last resort..... ,and that the excedrin CAN . Not buying that...……….aspirin and acetaminophen have been useful for shadows...NOT CH....have NEVER seen reported 'rebounds" from either...and I been doing this dance for 36 yrs...…………………..same for naproxen...……... He said he has many cluster headache patients and will research the MM.. Oh golly I hope he is serious...cuz the site you are on right now is BASED on the EFFECTIVENESS of same...…………...Any thoughts on that? BTW...oxygen as a LAST resort AFTER verap and Imi are ineffective... makes me CRAZY ….I'll repeat ONE>MORE>TIME...then I'll shut up: oxygen is the PRMARY, FIRST, FOREMOST. most medically ACCEPTED and SAFEST treatment for CH that exists.....now, I'm out...…………….. Best Jon PS: D3......D3...D3....D3...D3...D3...D3...what ya got to lose whitewater?

^^^^^^what he said...…..

Also, Jon the Zomig sounds pretty righteous. You use that exclusively now? Does it just "bust" the headache or keep them away for any sort of time Last resort after all else fails....for me effective nearly every time, no noticeable side effects, typically got an 18 hr "free time", no rebounds. DAMNED expensive tho (even with insurance). In my case much better all around than sumatriptan. If you try either BE SURE to research manufacturer coupons and other pharmacy discount options... Real quick - I know that pills can tear your stomach up, but the excedrin tension that ONLY contains acetaminophen and caffeine - that's not as bad for your tummy as the regular excedrin right ? Correct...just be sure not to mix with alcohol or exceed listed dosages....can be hard on the liver. Do a google search.... The O2 sounds interesting and I would be willing to try, I'm just not sure if I can keep that up lifelong as I try to be as active as I can. I guess I could take it with me camping and my long car drives but it seems like a lot. But this condition is a whole lot and I am willing to do anything to seek relief When...not IF you go this route... you WILL curse the delay and regret all the pain that COULD have been avoided. I have trouble finding the words how important this is!!! Without O2 I could not have worked, could not have participated in life, and would have been insane or WORSE. These are called suicide headaches for a damn good reason. There is even one doc who asks patients if they have at least contemplated suicide...and if they say no...then they probably don't have CH..... I kept an e-tank (quite portable with a caddy... but large enough to be useful) in my office, one in the car (strapped down) and a couple of E's or M's at home. When travelling I arranged for E tanks pickup from the local O2 shop (I used Lincare...LOTS of locations)….yup...even on the way to a 7000' mountain cabin. The only problem I ever had when travelling was explaining the O2 regulator to TSA. They would make me explain EXACTLY what it was and how it was used. I was happy to comply. Oddly, they never even looked at the Zomig nasal sprays...which look a lot like a bullet! Also a friend of mine did give me a few topamax pills and a sumatriptran injection box, and I havent taken any of them. His wife has MS and said it helps with her headaches heavily. Thing is, I've read about the effects and seems they can be pretty severe. Obviously I'm the kind of guy that would rather smoke a joint, flap my arms and pray the pain goes away but...perhaps I'll shoot one in my forehead tonight ! Joking of course Topomax (an anti-epileptic supposedly useful for migraine and sometimes CH) is known by many a clusterhead as "dopeymax"….as the side effects include making you STOOOPID....worst side effects of any med I ever tried. Kind of a med of last resort when nothing else works IMHO. IF it's gonna work it will take a while...so a one off pop is worthless. Wait for a doc to give an ok before using suma...it can be harsh and can be counter indicated depending on your overall health situation.... Also a doctor friend of mine had said this when I was texting him today - "Sounds like your symptoms fall into a diagnostic group of diseases called Trigeminal Autonomic Cephalalgias (TACs).The five diagnoses in the group are: 1. Cluster 2. Paroxysmal hemicrania 3. SUNCT 4. SUNA 5. Hemicrania continua Well...ok...those are all nasty...which is why you need a headache specialist...... Even if the symptoms are textbook and diagnosis (usually by a neurologist) is made, treatment can be difficult to get “right” Yeah...soes a Class IV or V difficult....ya gonna sit on the bank and watch the 81 yr old guy flip you off on the way by...or get in the game? Another diagnosis in the group is called hemicrania continua and responds to a drug called indonethacin (basically ibuprofen) - also prescription If ya got HC...indomethacin is reportedly quite effective...usually doesn't do squat for CH but it's one way to eliminate HC in diagnosing... Well if we’re going with CH - which I think is right - it seems that the best place to start is a triptan" Yeah....as an emergency abort....it's not something to rely on (expensive, limited allowed usage, potential rebounds, side effects). I'd try the D3 regimen in the meantime....AND some smartass fuzzface has a lot of nice things to say about O2 (relatively cheap, easy, quick, NO SIDE EFFECTS) ...just sayin'.... BTW: Can I get an AMEN on O2 Brothers and Sisters???? Best Jon

Thanks Jon much appreciated. Looking at the bottle they say "Verapamil 240MG ER Tab GLEN - Generic for CALAN SR. So that ER probably does mean they are extended release, yeah? Should I break them in half or crush them up? Not recomennding to do anything silly with them, but perhaps if I chewed it instead of swallow, would it hit me quicker? Yup...those be "extended release". And NO NO NO...a THOUSAND times NO! Do NOT screw with medicine instructions....I am a professional patient...but I aint no damn Doc. These work for some...and if they don't...a higher dose of immediate release is damn skippy worth a try. Get thee an "headache specialist" ...they will know FAR more than I... And thanks for the heads up as far as not expecting anything immediate. I have 30 of these bad boys so we'll see if I notice anything.. Not sure if I'll be going in for a ECG beforehand, but I'll keep mind of my heart over the next few, for sure. I hear if that goes, I go too! There aint a clusterhead alive who doesn't want this shit to STOP NOW! We get it! But...this could be a long slog...hope for the best...prepare for the worst (and we can help with that ) ps. We oughta meet up at the cabin one day! I also believe that paddling is the best form of non-motor travel! Have you ever done any whitewater?  Pete...my brother (and me)...would like that...but I'm kinda limited these days. No whitewater...it was a dream. Best memories with a paddle: once passed a group of kayakers on the beach...about 30!...we circled around until we figured: a celebration of life for a friend passed. Didn't know who...but I almost cried...great send off for a friend!! ...another time...middle of a lake....it started to rain...only the drops were 10' apart....PLOP......PLOP.....PLOP.....PLOP. It was hilarious. I'm from Seattle...the rain is like a mist...you DON'T hear individual drops....bwaaaaaaaaaaaaaaaaaaaaa Best Jon

This one first.....I have to collect my thoughts for the previous.... Sounds good...typical starting verapamil dosage is 120-240 mg....with a slow ramp up to find the 'effective" dose if necessary (as previous...480 the reported 'sweet spot"....but everyone different.) Is it immediate release or "extended release? Both have been reported to work...with more finding the immediate version more efficacious. Also typical to do an ECG to start and any time dosage increased substantially as verap can affect heart rhythm. If a problem...which is NOT typical...reducing or eliminating reverses the problem. Do NOT expect immediate relief...at best it will be 10-14 days for benefit...and then a dosage increase if not...………..BEFORE giving up!!! Always good idea to check for TMJ....not reported to be related to CH...but bad stuff especially with teeth grinding. I've used a bite-guard every night for 30 years since I grind my teeth (they're ALL flat). This preceded CH by many years....and it has never seemed related to CH for me... Best Jon

Forgot to add...for break through hits when O2, caffeine, and meds failed (no meds now used)...I use Zomig nasal spray (5 mg). Criminally expensive (even WITH insurance) but FAST and 99% effective for me...w/o the reported side effects from another triptan: sumatriptan injections (which are also fast but believed by some to promote rebound headaches). You may be offered tablets of same...which are generally useless for aborts because they take far too long..... Best Jon

Good stuff from spiny and CHf...I'll try not to be redundant…………..apologies for same First things first.....get a diagnosis....there are conditions that can mimic CH...they need to be ruled out....and then: YUP!...Oxygen oxygen, oxygen.....not only changed my life...probably saved it. Meets all the criteria for safety, effectiveness, relative cost, ease of use and lack of side effects....the FIRST time you feel that hit drain like water, only faster than ever before.....there WILL be tears...and not the kind you are used to. Any physician who is reluctant or refusing to prescribe the most well known and medically accepted therapy for CH is the WRONG physician. You have GOT to find a headache specialist...and not just a neuro.....because even they get minimal training in headache. It is critical for support, updated treatment knowledge, advocacy with insurance and work, and peace of mind that at least ya got a chance to manage the beast. Short version of a long story: I too got hit at night (1per hr for 8 hrs). Set up an O2 tank right next to bed, hit it at 15-25 liters per minute the second I woke up...remained calm, lights out, eyes closed, no thrashing or cursing or angst, no other thoughts than "breath"....never fully awake. Usually worked within 5-10 minutes...then back to sleep. Would get 4-6 hrs of sleep per night and be grateful for that...……. Caffeine can be quite effective.....but many find that in the form of energy drinks is best (minimum 100 mg caffeine/serving and 1500 mg taurine). The taurine boosts the effectiveness....you might say like a turbocharger. Really COLD and really FAST at the first sign of a hit was best for me. I buy at Dollar and discount grocery stores ($1 or less per can) whatever is the cheapest version with the requisite contents. 2 oz "5 hour energy" types are oh-so-portable and easy to use. There are sugar free versions (cuz, dayum, most got WAY too much sugar)...just be careful it's NOT sweetened with aspartame...which is a vaso-dilator trigger similar to MSG. And keep in mind that for some...like me...low blood sugar is a trigger (I carry hard candies). I'd try various forms. My experience was that caffeine/energy drink OUTSIDE of a hit was actually a trigger for hit(s) later down the line. I only used to abort a hit or attempt to forestall an expected hit...and avoided at all other times. The body is a remarkable 'stasis' machine...if will get used to whatever caffeine level you typically ingest and mediate the effects. What you want is an unexpected "caffeine bomb" to get the desired vaso-constriction effects. I totally get your taking caffeine before going to bed...I could do that too and still sleep...it amused me. Melatonin (or Benadryl) are effective for lots of us in getting through the night..... not sure what your concerns are there. Divided opinions on MJ....for many yrs the "community" generally discouraged use...based I think on the "but it's a vasoldilator" reasoning. More recently I've seen increasing reports of benefit for CH.....so seems very much an individual thing. Perhaps try different strains and various THC and CBD levels. Heck, even if the effectiveness is because of anxiety relief vs physiological effect...who cares!? Be REAL CAREFUL with the Excedrin...it can tear your stomach up....and is dangerous long term. Many find that it is beneficial (on occasion) for shadows (mini hits or undeveloped hits)……... How you are able to smoke only 7-8 cigs/day is mind boggling to me.....I had to cold turkey...and all it would take for me to be hooked again would be ONE....Never could see any difference in CH whether I smoked or not (quit many times)... As spiny said...prednisone (or methyl prednisolone) is an effective bridge med until the preventive kicks in (1-2 weeks). Beyond that the side effects are NASTY. For many yrs I used verapamil...of the 20+ meds tried over the yrs this was the most effective (70%) with the least side effects. 480 mg/dy in divided doses of immediate release version seems to be the reported sweet spot. In high cycle I went over 1000 mg/dy...….. Cycles are a strange thing....for 23 yrs my cycle was 6-8 weeks on and 6-8 weeks off....with a pattern of hits like a photocopy. Then turned chronic ...which is not near as bad as I had anticipated. No one can answer your question on what to expect with your cycle...it's gonna be what its gonna be...which why you are here so you can be prepared for whichever pitch the beast bitch throws...... Re D3...I'd dive in the deep end on that one. Supplements that are cheap, easy, safe, and good for you whether you have CH or not. MANY success stories!!! Best Jon PS: My brother's kayak...he's a country mouse...with a mountain cabin...Ima city mouse ….but a tall one.... so he bought a loooooong one for me (and his dog) to use ...cuz he loves us! I think kayaking is the best non motor boat method of movement...you can quietly go really fast with a minimum of effort....or real slow and take in the sights

Welcome Javan....folks will be along...me too. You're in the right place! cool pic.....mine a lot less

Just wondering if any of you have ever tried Sinus Buster as an abortive? Cayenne pepper powder up the nose.....for 6 months (years ago)...."sorta" worked for a while...then I realized my co-workers might be wondering why Jon runs out of the room, returns with red eyes... and "the sniffles".....hmmmmm? Eventually.... trying to treat one pain with another became illogical....besides not working. Personally, if I was a diagnostician and a patient told me he/she was doing this.....I'd take the underlying reason REAL SERIOUS...cuz DAYUM...that bespeaks desperation. This topic has been discussed on clusterheadaches.com for maybe 20 years....a source of angst and humor....and VERY little, if any, success. Type sinus buster, capsaicin, cayenne powder or similar in the search function....grab a coffee and settle down for a LOOOOOOONG read.... If so, does it work?? Nope, not for me...but there aint no-one alive who could have talked me out of at least trying it...…..the potential is enticing. You pays yur money and takes yur chances. I see little harm in the effort...……………. What helps with the stuffiness my husband gets when he does have an attack..... I used to use Tiger Balm, Vicks Vapo Rub, or other aromatic menthol related products which actually sometimes "helped" with congestion. Problem being it DIDN'T help with the CH hit....which just pissed me off...so I just rode it out without snorting...…….(BTW, don't place IN the nostril...you DON'T want that stuff in your lungs)…. Last time I was on a few years back, I was finishing my School Building Leadership Certificate....well, I finally got my job!!!!!!!! I am happy to announce I am a Student Programs Supervisor....or Supervisor for Special Education.....soo excited...... Very good news...CONGRATS! My Mom was a 1st grade, remedial reading, and special ed teacher. She loved them ALL...but the Special Ed kids were her favorite. Tough duty...she'd come home in tears...having spent days, weeks, months finally getting a concept across...and the next day it would be gone. I don't know how you folks do it...so God Bless and thank you! Best Jon