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jon019

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Everything posted by jon019

  1. ...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
  2. 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?
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. Welcome Javan....folks will be along...me too. You're in the right place! cool pic.....mine a lot less
  9. 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
  10. DD...I think of you OFTEN....and even if we don't hear from you for a while...I STILL WILL! CLASS is so hard to find...it is to be treasured...THANK YOU for your contributions to this community, BROTHER! My best...always... Jon
  11. Hiya Lily...welcome, ….I'd definitely give Botox a try....my past primary neuro was involved with a study (ies) which demonstrated efficacy for migraine (not so much for CH, the sponsors wouldn't let me in the study)………. ….also check out the Vit D3 regimen....and I'm blanking a little, but believe there was a thread here or ch.com which discussed thiamine (vit B1) as being effective for migraine...try the search function...... ….re busting and migraines..... I'm sure others will be along to discuss Best Jon
  12. Welcome Sam...FASCINATING post...that was well written, like a textbook with personality....I too look forward to more..... Best Jon
  13. ….make sure you discuss all supplements with the PCP...ESPECIALLY if blood thinner continued. Vit K for example might have unintended consequences in combination with a thinner...especially coumadin.
  14. Tim.....I will try to tread lightly since I do not know your medical history...don't even play a Doctor...and WASN'T asked....BUT 3 primary preventives...1 secondary and NO O2...screams to some of us that you are overprescribed and under oxygenated. With all those meds the side effects must be.....YIKES! Oxygen literally saved my life (along with ch.com)...is cheap...easy to use... no side effects...quick.... clean...LIFE ALTERING. Of the meds mentioned, verapamil is the most common....with 480 mg/dy (divided doses, usually immediate release form) being the reported sweet spot for clusterheads....and some going up to and beyond 1000 mg (me in high cycle). The D3 regimen is highly successful for a number of family members...basically vitamin supplements and way safer than most script meds....YMMV. Now I'll shutty…………. Best Jon
  15. Hi Ms A...welcome...glad you found us...we'll try to help...…... This will sound glib and frustrating...but is exactly why clusterheads HAVE to find a headache specialist. Even regular neuros get minimal training in headaches....PCPs probably even less. The best I had instructed me to call immediately when I got in trouble....and her staff was instructed that cluster patients had priority. Her clinic partner wrote a flaming letter of medical necessity that got me insurance coverage for oxygen and triptans....the ONLY Doctor, of any kind, who ever advised to "stockpile" meds (triptans) when out of cycle to combat the insurance companies ridiculous/heartless/clueless limits per month.... There is a thread here of clusterhead recommended Docs for various areas of the country: https://clusterbusters.org/?page_id=455 ...hoping one is close enough to you and taking new patients...be SURE to say you are a clusterheadache patient (in cycle if so!) and HURTING bad. Offer to fill in for a cancelled appointment. Bring any records of your diagnosis, any meds or strategies you have employed, a journal of some sort describing attack timing, numbers, pain level, possible triggers, cycle length, age of first incidence, symptoms, etc. Docs of any kind love this kind of detail from a patient...diagnostic jewels!....indicates you are serious, determined, thorough, likely to be treatment compliant. I will never forget the 1985 article I read in a headache newsletter that advised treating physicians that the presentation of such a journal...all by itself....was an indicator of clusterheadache….we seem to be a bit obsessive-compulsive... Best Jon
  16. ...had the same problem with multiple ins companies...it's almost an automatic denial to make you go away...DON'T! 1) appeal...in writing...and phone (save copies, record all dates and names of who you talked to). If they say O2 is not approved for CH...they are WRONG...and practicing medicine w/o a license...call 'em on it....they hate that (be prepared to go to state ins agency regulators). Treat it as a game...play to win...what you learn the first time is REALLY useful and fun the next time (at least 5 times for me). 2) Finding a headache specialist neuro is CRITICAL for a number of reasons....but one really important one is to rely on this person for a "letter of medical necessity" which basically states the reason for this medically accepted treatment for YOU. I had one written for me that was almost too hot to hold...the Doc was pissed and effective...the O2 (and triptans) got approved really fast! 3) If you get your insurance through your employer...get to know the insurance broker who sold the policy to your company. This person is the actual customer of the insurance company ….they really don't want to talk to you except to say "go away"... but they WILL listen to this person. Your HR dept SHOULD be willing and able to facilitate this. Besides the necessity letter this was the most effective strategy for me.... 4) be willing to pay out of pocket....it's that important a treatment...life altering actually. W/o O2 I might have been dead or insane. Got to know the manager of the O2 shop....so you are a person to them not just another name in a file. Picked up tanks myself...saving them delivery costs. I bought my own regulators, mask and tank caddy online...really cheaply too. E-tank cost was $10-14 ea over time. M tanks are about 2 1/2 times bigger...last much longer....so less trips to the oxy shop...might be cheaper per liter...can't remember. You WILL need a prescription or they won't even talk to you...…….. 5) CHfather is absolutely correct...welding O2 just as good and a great option.... and once the logistics are figured out it is likely cheaper. Like he says...there are folks here who can walk you thru.... Best Jon
  17. Oh dang!...forgot to add....allergies can add to the "demon's dance" (and many MIS-diagnosed w/sinus issues (me) e.g.)....many a clusterhead has found help with old school antihistamines like benadryl…."BATCH" has many threads which discuss this...just search his name....you won't be sorrrrrrrry ……….. Best So Late...….Jon
  18. Hiya Fl...oh dear...sadly, no "at least" involved...….THAT was the start.....it wasn't the end...that particular pain has never gone away (in cycle)….it's been, well, years. We here want to make that "old news"...we'll do our best for family...like YOU! Part of the "old news" for me included: Oxygen, verapamil, Zomig, Energy drinks, a calmness version of meditation, and vitamin D3 regimen....YMMV...there's other options right chere on THIS site too. You are in the right place...…………... Best Jon
  19. YEAH! ^^^^^^^^^^^ what the 2 fine folks above said....change only a few words and I would sign my name to either. Best Jon
  20. Welcome Flwaters, Yup...totally familiar symptoms for many a clusterhead....that's essentially the same experience I had for the entire first year of CH. Kept going to my dentist and demanding he remove "that" tooth....he wouldn't do it..."nothing wrong with it". Eventually he got frustrated...researched...and diagnosed CH himself...prince of a man...…….. Best Jon
  21. Hi Coryann...double PE's here myself....TWICE...also somewhat miraculous...drove myself to the ER both times. It's a guy thing...and it's so WAY DUMB..I have a hard time believing it myself. Many years of triptan use.... nearly all Zomig nasal spray...0-12/month (depending on cycle)...starting 6+ yrs before the first PE. Have never seen reports, heard members here or CH.com, or been told by a medical professional that there is a connection to blood clots...and 6 yrs would have been a long ramp up. Ask your pharmacist and check with drugs.com for side effects of usage. That said...we're all different...and FWIW all they had was a guess "why" blood clots for me... First thought on blood thinners....I would want a REALLLLLLLLYY good reason to stop after having a PE for UNKNOWN REASONS previously. I continued and STILL got a second occurrence of DVT/PE. Btw...it's Eliquis (dang spendy but coumadin didna work...and has lots of testing requirements and side effects). Secondly...I HAVE heard of coumadin being helpful for CH...but it has been a while since I saw that and I don't know where. Try the search function here and at ch.com. The Eliquis does not seem to have any ch effect for me...but then there's other stuff that has (age, chemo, D3, "?")... Best Jon
  22. I find "Dark Side of the Moon" to be appropriate.... no matter what the situation...…………………………….
  23. Hi Tim...having been on the "stink eye" end of many an IT droid saying :"did you reboot?" (what other technology requires THAT counter-intuitive procedure?)...even when I just fricken said hello....I like your thinking. Now then....what are you proposing? When my heart stops...I expect my clusterheadache worries.... are OVER...……………………… Best Jon
  24. Hi DE....welcome aboard! You might want to nose around a bit and see what interests you in the threads...and feel free to ask questions or share your comments. We wish you didn't have to be here...but it's a good place to be....and we all do what we can to help each other out. As I'm sure you realize...just knowing there's folks out there that UNDERSTAND....is a BIG deal! Have heard of Gabapentin before but not a whole lotta success....but that's me. The reduction you're getting is actually pretty good....but I don't know at what cost (side effects that is, other similar meds can be kinda nasty). Many have found success with a Vitamin D3+ regimen that is cheap and easily obtained in most places....and you REALLY need to explore oxygen therapy as it is an absolute life changer. See this thread in another forum ....no membership required to read: you might have to type in the address...cut and paste doesn't seem to work for me. http://www.clusterheadaches.com/O2/index.html Re verapamil. Typical sweet spot for clusterheads is around 480 mg/dy....divided doses of normal release (it also comes in extended release...which works for some but doesn't seem to be as many). Some go over 1000 mg/y (myself in HIGH cycle). 240 is a good starting point tho typically there would be a steroid IV and/or taper (1-2 weeks) to break a cycle until the verapamil kicks in. Personally I would not use verap AND Gabby at the same time....due to cost, side effects AND not knowing which one is really working (if they even do). With oxygen, D3, and perhaps energy drinks (over 100 mg caffeine and > 1000 mg taurine) drunk cold and fast at the first sign of a hit and script meds might not even be necessary. Others will be along shortly....I always forget something important or my technology IQ fails..... Best Jon
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