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jon019

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Everything posted by jon019

  1. Hi kendrra..welcome to the family! Over the years MJ has gone from a "oh no never" to lately some folks reporting it helping....in various forms. I thinks it's a combo of the differences between folks who have the same damn thing NOT responding to the same treatment....and the decided lack of studies re cannabis. It just aint all the same stuff. I think the only way you are going to be able to tell is exactly as you described...experiment. And then please let us know......sometimes clusterville is all we got...……. Best Jon
  2. Yeah...I know...the "M" word...but clusterheads have had to tag along behind treatments for that FOREVER anyway....BestJonPS I tried to post in a more friendly form with active links...unable...try FDA.gov (Ajovy) The Division of Drug Information (DDI) - serving the public by providing information on human drug products and drug product regulation by FDA________________________________________ Today, the US Food and Drug Administration (FDA) approved Ajovy (fremanezumab-vfrm) for the preventive treatment of migraine in adults. Ajovy is the second FDA-approved preventive migraine treatment in a new class of drugs that work by blocking the activity of calcitonin gene-related peptide (CGRP), a molecule that is involved in migraine attacks. Aimovig (erenumab-aooe), the first in this class, was approved on May 17, 2018.Patients often describe migraine headache pain as an intense pulsing or throbbing pain in one area of the head. Additional symptoms include nausea and/or vomiting and sensitivity to light and sound. Migraine attacks can cause significant pain or hours to days and can be so severe that the pain is disabling. Warning symptoms known as aura may occur before or with the headache. These can include flashes of light, blind spots, or tingling on one side of your face or in your arm or leg.Ajovy is contraindicated in patients with serious hypersensitivity to fremanezumab-vfrm or to any of the excipients. Hypersensitivity reactions, including rash, pruritis (itching), drug hypersensitivity, and urticaria (hives) were reported with Ajovy in clinical trials. Most reactions were mild to moderate, but some led to discontinuation or required corticosteroid treatment. Most reactions were reported from within hours to one month after administration. The most common adverse reactions were injection site reactions and infections.For more information, please visit: Ajovy (fremanezumab-vfrm) . ________________________________________This is an automated message delivery system. Replying to this message will not reach DDI staff. If you have comments or questions, please contact us at: 1-888-INFO FDA (1-888-463-6332) or (301) 796-3400 from 8:00 am - 4:30 pm ET Monday - Friday. You can also email us at druginfo@fda.hhs.gov.• For additional drug information, please visit the DDI Web page. • For up-to-date drug information, follow the FDA’s Division of Drug Information on Twitter: FDA_Drug_Info. • This service is provided to you at no charge by the U.S. Food & Drug Administration (FDA).________________________________________ U.S. Food and Drug Administration10903 New Hampshire Avenue, Silver Spring, MD 209931-888-INFO-FDA (1-888-463-6332)Privacy Policy | Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Manage Preferences or Unsubscribe from this List | Unsubscribe from all Email Lists
  3. Hi thirdy...welcome.. If your concern is the psychoactive effects ya might want to consider the high CBD low THC form. Some of my senior friends swear by the pain relieving qualities.... Best Jon
  4. jon019

    Taurine! WOW!

    Hey Billy, Multiple headache forms is uncommon but certainly not unknown...as we have folks here who well know. To have a neuro(s) who recognizes that is frankly surprising.... because it can be difficult to find one who even recognizes CH...or at least knows how to treat. So that's is a good thing. Are these headache specialists? Need more detail on "none of the traditional ch treatments have worked". Have you tried prevents like verapamil, topomax, other...what dosages....abortive triptans....what form...others...what? In my case Zomig NS (5 mg) gives me about an 18 hr "free window"...but I would think Imitrex injection might be effective...have you tried? Maybe....and I've never used myself since they take too long for standard CH hits....oral triptans (Maxalt, Amerge, Relpax, et al) would help with your rapid cycling.... which, btw, is an unusual form. NOT to say eliminative of a CH diagnosis. Personally I've had several cycles where the hits were 0-10-0 within 1-2 minutes...that is some scary spit! Also...when in deep cycle... hourly hits while sleeping...for which an oxygen strategy was absolutely effective and critical to my ability to function...... So then...OXYGEN. Whadda ya got to lose!? Relatively cheap, HIGHLY effective, easy to use, NO side effects (short or long term). Proper usage extremely important....minimum 15 lpm to start (less might work, which you would find by trial and error) a NON rebreather mask or direct inhale from a mouthpiece, immediate start at first hint of a hit. Again, I don't know if effective for HC...I DO know effective for CH. See these links: https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ http://www.clusterheadaches.com/O2/index.html MANY have found relief with the Vitamin D3 regimen.... https://clusterbusters.org/forums/topic/1308-d3-regimen/ Then, of course, energy drinks as discussed in previous posts this thread... Best Jon
  5. jon019

    Taurine! WOW!

    Hi Billy...welcome! Gonna need sumore info. Have you been diagnosed with clusterheadache? Indo is used for HC...and I understand quite successfully...but I am unfamiliar with oxygen having any beneficial effect for that condition. Best Jon
  6. This....from the magazine "Brain and Life"...formerly "Neurology Now" https://www.brainandlife.org/the-magazine/article/app/14/4/17/tuning-out-pain-chronic-pain-doesnt-go-away-but-treatingWhile clusterheads are not in "chronic" pain...we ARE in our own form of "intermittant chronic pain"....and this article resonated with me in several areas. It took many years but I finally figured out that HOW I perceived AND reacted to the pain of CH...and my general attitude to life...and life with CH.... made nearly as much difference to me as O2 and all the multitude of meds. See especially the last section "Turning off Negative Thoughts". Best Jon
  7. I've always been wary of multiple prevents at the same time.... increases the chances for disruptive side effects....and IF it works, you are never quite sure if it's one, or the other, or the combo....and even then, different dosages may have completely different results..... ….no experience with Depakote....have heard of its use but not a whole lot of reported success....or negative side effects. Supposing it is similar to Topamax...which I took once in conjunction with verapamil. worst side effects I ever experienced and I begged the neuro to discontinue...she apologized for, as she put it, "using too big a hammer" (Verap plus Topamax)...I treat CH VERY aggressively!". Damn skippy she did...besides the prevent she was ALL in on OXYGEN, w/Zomig for breakthroughs...ordered ECG's and testosterone tests...and actually LISTENED to me...…………. Best Jon
  8. jon019

    Botox

    Hi nana, Reported to be successful for some for migraine...much less so for CH. Quite expensive so check your insurance coverage. If covered I'd give it a shot...if not you'll need to decide if the gamble is worth it to you. Had a former neuro who was a researcher and doing a study on botox for migraine...which later showed very positive results. I applied for inclusion in study but was turned down...either her or study sponsor would not consider it for CH. Has your neuro had success with other CH patients? Keep in mind it is not a one time deal...you'd have to repeat it probably several times per yr..... Best Jon PS ONB never worked for me either...but I've seen reports of success...it was certainly worth a shot (pun intended)........................
  9. jon019

    Newbie

    I was always flayed and splayed...and hungry for a while.........
  10. Hey Mum....CHf is right...most got a different story. Mine were like a bell curve when episodic...slow ramp up...high intensity period...then slow ramp down. I knew cycle was over (6-8 week typical) when I got blasted with the worst one of the bunch...I used to crave those slammers. Early in CH career all the hits were 7 or above...had no idea what a stinkin' shadow was... I would encourage OXYGEN use...without it I would not be writing this...................... Best Jon
  11. 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)…………..
  12. 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……….
  13. 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....
  14. ...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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. jon019

    Taurine! WOW!

    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
  21. jon019

    Taurine! WOW!

    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
  22. 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
  23. 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
  24. 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
  25. 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
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