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jon019 last won the day on October 2

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About jon019

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  1. jon019

    Newbie seeking advice/ relief

    OXYGEN.....D3....energy drinks ( it's the taurine plus caffeine, minimum 1000 mg and 100 mg respectively, buy by price, the B vits sure don't hurt) and MM/psychs or seeds …...is a good line up if ya wanna avoid the harsh pharma meds. Save yur money on the chiros and acupuncture too….don't do squat for CH. An honest practitioner will tell you that up front.... Best Jon
  2. jon019

    O2 prescription

    ALL the above ^^^^^^^^^^…..and I'm not sure that private insurance "has" to cover it... but they WILL.... provided ya play the game! Of the 8 insurance companies over my career, 7 of them refused initial request for O2 as CH treatment. Totally bizarre when the alternative triptans are so damn expensive (tho ALSO limited by them). Just one more entity that doesn't understand CH and doesn't seem to care either. Sermon over... OXYGEN saved my sanity, if not my life....I seethe when I see refusals and the completely inexplicable federal veto. I got it EVERY one of those 7 times...because I HAD to...…….. If they won't: Appeal immediately by writing and phone...keep copies of ALL communication and persons talked to. Do not accept the bullshit line that "we don't accept oxygen as treatment for CH." It's in the lit as the referenced by CHF and THMH....and that would mean they are practicing medicine without a license (i.e. the droid in the basement with the green eye shade and the mission to deny everything). Call 'em on that one...anything in writing or verbally from an identified rep is golden. Be sure you have a prescription...and send 'em copies of either or both of the lit above. I REALLY hope you have an advocate Doctor....who cares and is willing to fight the insurance company....and hopefully pissed at incompetence. You'll need a "letter of necessity" describing his/her diagnosis and treatment plan (O2 of course)....and woe be the UNLICENSED insurance jockey who disputes that. (one of my fav memories is the blistering letter my neuro sent...it really worked). If you are working.... seek help from the HR person to go to bat for you. Better yet...besides that person, find out who is the broker that sold your company the policy. Request HR put you in contact....THAT person is really considered the insurance company customer...they'd prefer you go away...but they WILL listen to this person. Meet and greet and give 'em all the above..... Game on...don't get mad...get busy. It got to be sorta fun after a while...and a great distraction...stress being a prevent for me...hoping this will save you a little.... Best Jon
  3. SO TRUE....sometimes all we got is clusterville and our supporters....PLUS an o2 mention!!! ...I like my anchovies on pizza.....it's the umami!
  4. jon019

    Aching eyelid and above eye after CH

    Hi Popoid....some other thoughts... ...re D3 sounds like you just need to reload and see what happens... ...as already stated the pill form of sumatriptan is worthless for an expedient abort (some find help as a preventive, especially for sleep)..ya need the injector OR a nasal spray...I had excellent results with Zomig 5 mg NS....99% effective within 10 mins...18 hr 'free" time...no side effects... ...still concerned re your diagnosis.... and what are your Docs qualifications.... ….vomiting is rare for CH...have never heard of the need for anti-emetic...more common with migraine...tho not at all unheard of to have multiple headache conditions at the same time (reason for my previous question re diagnosis). while there are many similar treatments....not all apply to either condition or multiple... ….have used several anti-emetics for other reasons...Ondansetron was worthless....Ativan much more successful...YMMV ….the things I have done to my head during a hit would be classified as "assault" by an onlooker...distractive pain I suppose...you pay later.. ...some find help with the hottest shower (on the head) they can stand...some the coldest (or a bag of peas or ice pack)...some alternate hot/cold.. GET YOURSELF SOME OXYGEN !!!! PROPER MASK AND PROPER TECHNIQUE( we can post links). It has gotta be a prescription from your Doc...and if he/she won't or doesn't know....ya need a NEW Doc. It's the fastest, relativelycheap, easiest, no side effect, PRIMARY medically known and accepted abortive treatment... Best Jon
  5. jon019

    Aching eyelid and above eye after CH

    Hi Popoid...welcome! The quick answer(s) is YES and likely.... YES! A cluster hit can be like a train wreck...not much that isn't affected. My hair used to hurt...and I'm bald!! You may wanna tell us more about yourself or ask anything....we aint Docs but we are professional patients..... Do you have a CH diagnosis? Do you have a headache specialist Doc...VERY important... many PCP's and even some neuros are unfamiliar with the condition and treatment. Any prevents tried (e.g. verapamil, Vitamin D3 regimen, magic mushrooms, psychedelics, seeds)? Aborts like the BEST: OXYGEN! What form of sumatriptan are you using? Tried energy drinks (caffeine/taurine), exercise, or other? Best Jon
  6. ^^^^^^^^ what J said! …..and chanting works...although The Buddha might not have appreciated my version during a bad hit: EVERY foul word I have ever heard...and some I just made up..REPEATED over and over and over again! Out of consideration for the neighbors...I carried a pillow around the room to shout into...it got soggy...……... Best Jon
  7. jon019

    After Cluster Headache - Help Please!

    Yo AZ Yes, my CH is diagnosed/confirmed. My doctor prescribed me Diclofenac Sodium / Misoprostol along with Zolmitriptan when there is full CH attack, took both at once. It worked a little but i had no other options. Now i take Diclofenac Sodium / Misoprostol for headaches apart from CH. Well...that's GOOD...ya know what you are dealing with. Why no OXYGEN is a puzzlement tho! At least a try. If Doc says no...or DOESN'T know...get another Doc. It is the first line, first choice, most medically accepted (for decades now) abortive that works near miracles for many. Easy to use, relatively cheap, fast, NO SIDE EFFECTS. Without O2 I would have feared for my sanity and perhaps my life. The first time you use and feel the hit drain away like water you will know... and regret any delay... See these links: http://www.clusterheadaches.com/O2/index.html https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ Re Zolmitriptin. Is it a tablet or the nasal spray? I had wonderful abortive results with the spray (5 mg)....5-8 min effectiveness....18 hr "free period"..99% effective for break throughs after O2, energy drinks, sometimes verapamil failed. Very expensive...just like Sumatriptan. I mighta paid ANYTHING at times tho...……… Me too mostly depressed. As i felt positive to SSRIs, took them for a few months 2 years back. Seems a clinically-depressed case But a physician Doc not a psychiatrist prescribed me SSRIs. SSRIs are good to certain point after that no! their side effects i didn’t like. Now thinking to take Magic Mushrooms to fix my mood and to stop Shadows. Interesting enough there are several antidepressants that have been used for preventive CH treatment. Not much success from what I gather. Amitriptyline was the one I tried...totally ineffective and life altering side effects (getting out of bed was my major accomplishment for the day) YMMV...…. Re MM...you are in EXACTLY the right place...check out the "Files" section. I have no personal experience with that method..... I was introduced to Verapamil after my last CH pain, however, i took them as a try and a preventive med. But very bad constipation problem and leave them. So, i didn’t know much about Verapamil effects What dosage? Did you do a prednisone or methylprednisolone taper first (to break the cycle while the verapamil kicks in...10-14 days). The reported "sweet spot' for clusterheads is 480 mg/dy in divided doses. I used (depending on cycle) 480-1040 mg dy of the immediate release type (the extended release version works for some but fewer than immediate release). Also known as "concrete dust" it definitely can cause constipation. I always made sure to drink LOTS of water and increase fiber intake (Metamucil works too) and did not have any problems...but we're all different... On Verapamil packet it is written Calcium-Channel blocker and Beef contains high amount of Calcium, it can be any connection between CH and Calcium?? Beef is actually relatively low in calcium (tho high in protein) compared to many foods like dairy, some leafy green veggies, soy products, nuts, seeds, beans, canned bone in fish, fortified cereals and juices, et al….see: https://www.healthline.com/nutrition/15-calcium-rich-foods Verapamil does not play well with calcium….should separate intake by several hours… No i have not tested myself for Lyme disease. Might want to think about that if you have other symptoms besides CH trigger after beef intake…or even just that as inflammation from an allergic reaction is DEFINITELY a Ch trigger… Diclofenac Sodium / Misoprostol narrows nerves. In my expirence blood thinner things like Garlic make me down: mood and body. Taking blood thinner myself for another purpose….have noticed no effect on CH or mood….would be interested in others experience. There have been reports of Coumadin being effective for CH for some…so go figure Want to know more from you good-people The D3 info from Batch above is PRICELESS….I’d go for it…. Boring life i am living. With CH…aint nothing boring… Best Jon
  8. jon019

    Forest gump and leutenant dan

    Good on ya lp3!! Life is funny...ya just gotta find it. Once in a while I used to look in the mirror in the middle of a bad hit....hair everywhere, snot, drool, droopy face, tears...a makeup artist could NOT have done better...unrecognizably funny. That's when I learned you CAN laugh and cry at the same time! I love that movie...my fav line is Lt Dan telling Bubba..."son, you better tuck that lip in!" Best Jon
  9. jon019

    After Cluster Headache - Help Please!

    Hi A-Z..welcome! THMY is spot on...does sound like shadows...and there are all kinds of gradations... from annoyance to just below major hit level. Personally, I could deal with most levels below major hit and proceed with normal life if I knew, from experience, it wasn't going to proceed higher. Naproxen, energy drink, even aspirin sometimes worked for these....oddly OXYGEN, which I swear by, did not. I am unfamiliar/puzzled with Diclofenac Sodium / Misoprostol (even after googling)....but the Rizatriptan is kinda perfect....way too low and slow for a major hit but ideal for a shadow as long as you don't exceed dosage limits. More than a few folks have reported instances of CH without pain...another form where you get some or all of the symptoms....except without pain! It would be a strange sensation which I have not experienced.... I have battled depression most of my CH career...mostly in the past now....but always in between cluster episodes (was episodic for years). Seemed during cycle I was too busy dealing with it to get depressed. OUT of cycle there's lots of time to reflect and dread and anticipate "what's coming"....which is why>>> Do you have a headache specialist Doc? VERY important as most PCP's and even neuros have limited experience and knowledge of CH and other headache conditions. All things proceed from a diagnosis...have you been?...with what? Bear in mind, multiple headache types are completely possible. Are you familiar with Oxygen treatment? Saved my sanity if not my life! Have you considered the D3 regimen? Any prevent meds like verapamil? Abortives like Sumatriptan injections and Zomig nasal spray? Have heard of beef being a trigger for some...tho it is unusual. If you are in an area....or have travelled to where ticks are.... you should be checked for Lyme disease as it can create an allergy to red meat. Best Jon
  10. Batch...there's this curve....and you are so far ahead of it that they can't even see your dust...…. ….thanks for posting this...a piece of science we can wave in front of the droids we encounter in the medical community...who sadly sometimes don't even believe it then....see O2 deniers for CH...……………… Best Jon
  11. jon019

    Cannabis as an abortive- strain specific

    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
  12. 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
  13. jon019

    CH, Marijuana and Me

    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
  14. 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