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Showing content with the highest reputation on 10/30/2019 in all areas

  1. 1 point
    Pebblesthecorgi

    Finding the way here

    This is kinda random. I "googled "cluster headaches" from inside the US and went through 6 pages of "hits" without finding clusterbusters or any of the sites that support cluster sufferers. You end up with what I suspect are paid positions and a few articles from the popular press. I think back all those years ago I was desperately seeking assistance and landed here. I'm not sure if I were looking today I'd find this site. Not sure if anything can be done about this. Maybe its better the profile is low given the discussion topics but gee whiz these discussions are truly life saving.
  2. 1 point
    CHfather

    Oxygen usage

    There isn't really a "too long." 20 minutes is fine, and so is longer on occasions when it might be necessary. You want to be sure the attack is fully extinguished, or it will come back. The general advice here is to keep using the O2 for at least 5 minutes after the attack is fully gone. That seems to prevent the kind of recurrence you experienced.
  3. 1 point
    jon019

    New to the group - some observations

    ...yup..be prepared...I got yanked once for having a can of salmon in my bag......let me go when I offered to eat it...maybe you could pop a few D3 for 'em... I think I would classify my GP as passive aggressive, and not very aggressive. When I told him about my challenges, he liked the idea I had about stockpiling. He's a GP, and easier for me to get an appointment with than the Neuro. He's really learning about this as I do. He won't go too far out of his lane, but he'll give me just the amount of support I need, nothing more. yeah...I was thinking of the neuro...if they have CH experience they will know this shit...got one of mine on board and pissed....she wrote a flaming letter I'd dearly love to have now...got me 18 doses of Zomig/mo !! (didn't even need or want that many, alas short lived when ins. changed). her partner (my main) on the first visit looked me in the eye, put her hand on my arm and cooed "now then my dear, you WILL want to STOCKPILE in between cycles"...I was flabbergasted (cuz that's survival mode for cluster heads.... and she got it !).... ...it's called STRESS...for some a real a prevent, for others a trigger....Bob G tag line on another board: "stay stressed. never relax. never sleep. ever" I would add: say goodbye to beer....sheesh, the pain of CH is just ONE part of this nightmare... BTW...thank you for your service!
  4. 1 point
    CHfather

    New to the group - some observations

    signals', you got most everything covered here by two great members. Here's a thread for the advice abut getting two or three jabs from each 6mg Imitrex autoinjector: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I don't think there's much in here you won't know, but just in case . . . . https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ In case you decide to go the welding O2 route, we've got you covered: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Keep in mind that for busting, you can legally and reliably buy and possess a very effective agent, rivea corymbosa (RC) seeds, which cause no trip effects in most people and are as effective as the more hallucinogenic substances. It is unlawful to prepare and drink seeds.
  5. 1 point
    Batch

    Demand Valve O2

    Hey Trent, I'm impressed... A life time ban from E-bay... Wow! Welcome to the club... I received a life time band from Facebook for suggesting 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors was an effective preventative for migraine headache. Given you've invested in more than sufficient numbers of M-Size and E-Size oxygen cylinders, I'd suggest a very cost effective alternative to an oxygen demand valve and regulator with DISS fittings. It's called the Redneck Oxygen Reservoir Bag. I made the first one from a new kitchen trash bag, a plastic soda bottle with the bottom cut off (keep the cap), oxygen tubing cut off of a disposable NRB oxygen mask at the mask end, some Duck Tape and electrician's tape. I cut the corners off the closed end of the trash bag as illustrated above, insert the oxygen tubing in one corner and the soda body through the other corner from inside the trash bag and seal both with electrician's tape for a gas tight seal then close the open end of the trash bag with a few strips of Duck tape you'll have a very effective oxygen delivery system that only needs a 7 to 9 liter/minute oxygen regulator if you fill ahead of time and turn off the oxygen at the supply valve. If you've taped the seams properly, the Redneck reservoir bag should stay inflated for at least 24 hours unused. The soda bottle becomes your handle and mouthpiece for inhaling 100% oxygen. I've found a fully inflated kitchen trash bag is good for three aborts using the following procedure and breathing technique. The procedure I suggest involves hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by inhaling a lungful of oxygen from the Redneck reservoir bag and holding it for 30 seconds. You continue repeating this sequence in rapid succession until the pain is gone. That usually takes an average of seven complete cycles or 7 minutes. You remove the bottle cap inhale the lungful of oxygen then replace the bottle cap. The purpose of intentionally hyperventilating at forced vital capacity tidal volumes is to pump CO2 from the blood stream faster than the body generates it from normal metabolism. This lowers the CO2 content of the arterial blood shifting the pH to the alkaline side of neutral (7.35 to 7.45) to a pH around 7.5 to 7.6 resulting in a temporary condition called respiratory alkalosis. This does two things that help abort CH much faster. A low arterial CO2 level and elevated arterial pH triggers a rapid vasoconstriction in and around the trigeminovascular complex. The elevated pH also increases blood hemoglobin's affinity for oxygen enabling it to carry 15% more oxygen sending hyperoxygenated arterial blood to the brain. Oxygen triggers vasoconstriction in the trigeminovascular complex. Hyperoxygenated arterial blood triggers vasoconstriction in an around the trigeminovascular complex even faster. The net result is very rapid and very effective CH aborts like 99% effective in an average of 7 minutes across pain levels 3 though 9 on the 10-Point headache pain scale. Hyperventilating at forced vital capacity tidal volumes involves exhaling forcibly and rapidly until if feels like your lungs are empty... they're not. At that point without delay, do an abdominal crunch like doing sit ups and hold the crunch for one second or until your exhaled breath makes a wheezing sound then inhale a lungful of room air and repeat the above sequence. You should be doing around 10 of these cycles in 30 seconds. On the 10th exhalation, hold the crunch/squeeze for 3 seconds. This will squeeze out an additional half to full liter of exhaled breath highest in CO2 As the guy who patented the oxygen demand valve method of rapid CH aborts in 2010, I've found the Redneck reservoir bag and the above procedures just as effective and fast as the far more expensive oxygen demand valve system and I bought the Cadillac of oxygen demand valves, the Carmét along with a Flowtec Inc, 0-60 lpm, InGage regulator with DISS fitting plus an M60 aluminum cylinder as my roadie along with a pigtail filler nfor a total cost of ~ $2100 USD in 2008. In 2008, I conducted a pilot study of the oxygen demand valve method of aborting CH using the same breathing technique above with seven CHers (1 ECHer and 7 CCHers). They each aborted their CH with this method of procedure for 8 weeks collecting pain level and abort times for each abort. All total, they collected this data on 366 aborts. Their average abort time was 7 minutes and over 99% of the aborts came in at ≤ 20 minutes. The following chart illustrates these results. As you can see, the oxygen demand valve method of procedure produced aborts 3 to 4 times faster than traditional oxygen therapy at a flow rate of 15 liters/minute. Now here's the payoff... The Redneck Reservoir bag method of aborting CH is just as effective in aborting CH as the oxygen demand valve method. If you'll look at the photo of my oxygen kit you'll see a sticker on the oxygen cylinder with check marks indicating 30 aborts, the average number of aborts I obtained with an M-Size Oxygen or Welder's cylinder with the oxygen demand valve. As the copay for each M-Size oxygen cylinder was $30 USD, that works out to $1/CH abort. I got nearly 300 aborts from an M-Size welder's cylinder using the Redneck Reservoir bag method so that makes the cost per abort roughly 10 cents USD. All that said, I developed the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3, Omega-3 Fish Oil and the vitamin D3 cofactors, magnesium, zinc, boron and vitamin A (retinol) in October of 2010. I was CH pain free following the second dose of this regimen. I've been CH pain free ever since. You can find the anti-inflammatory regimen CH preventative treatment protocol at the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch
  6. 1 point
    Batch

    New to the group - some observations

    Hey Signals, Welcome to Clusterbusters. We know what you've been going through so you've come to the right place. Regarding travel and taking the vitamin D3 regimen, I pack a ziplock bag with enough vitamin D3 and cofactors to last the duration of my travels plus enough for a few more days in case of delays and keep it in my carry on bag. In the 8 + years since I developed this regimen, I've never had any problems with TSA or customs during international travel. I switched to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules. They make the loading schedule a snap at one capsule a day. I've been taking one D3-50 a week as my maintenance dose and this has been adequate to kept me CH pain free. At one D3-50 a week the daily cost is ~3 cents/day where the oil-based liquid softgels cost 6 cents per 5000 IU or 12 cents/day. Check your PM InBox, I've sent some additional info. Take care and please keep us posted. V/R, Batch
  7. 1 point
    jon019

    New to the group - some observations

    Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest. Hiya Signal...glad ya found us!...post away, sometimes just saying this stuff is better than any med...and we REALLY get it... .....I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition......Maybe I'm wrong, but it always felt like it was worth looking into. ...I think it's a valid concern....and not just for CH....we are all exposed to all kinds (and ever increasing) forms of electronic "waves"... and someday they may look back on us with derision and amusement at our cavalier ignorance...like we do for the Roman's drinking out of lead wine glasses. Worked for a company that used a 50k watt microwave to thaw fish blocks for processing...BEAUTIFUL stainless machine...30' long and very efficient. The company rep used to regale us with stories of microwave history....like that the favored watch duty onboard navy ships was next to the new gizmo (microwave) because "it's warmer!"...can you say cooked liver? He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. ...some folks can use the pills as a prevent if they know their cycle well and get the timing figured out....but they indeed be worthless to most as an abortive. A standard treatment would be a prednisone (or methylprednisolone IV) and/or pill taper to break a cycle while ramping up verapamil dosage (10-14 days). Sweet spot reported to be 480 mg/dy of immediate release type (lesser, but not zero, reported success with sustained release). Some go much higher...I was over 1000 mg/dy in high cycle. Heart issue side effects potential MUST be monitored. Know not the ramifications of mixing atenolol (Tenormin) and verap. One of the first meds I was ever prescribed for CH was atenolol...didn't do squat. Don't waste your time on Inderal (propranolol)..some success with migraine but not CH.... ...many find that the 6 mg suma injections are too big a hammer and 'hack" the injectors to get 2-3 mg injects instead... which works just fine with fewer side effects and a lesser chance of rebounds. vials of the drug are sometimes available (ask your pharmacist) where you can use exactly the amount that works (using insulin needles)... ...my abort of last resort is Zomig nasal spray (5 mg)....for me no side effects, no rebounds, and an 18 hr hit free window....added bonus of insurance would approve suma and Zomig scripts at same time (tho not enough of either)....caution to NEVER mix triptans within less than 24 hrs.... I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent. ...same hard earned aha moment for me....when I stopped screaming, cursing, thrashing, hitting myself and anything close, and working myself into a frenzy I was able to cope much better. pain was the same...my reaction to it made a HUGE difference...adrenaline at the WRONG time is not your friend..... I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. do whatever you need to do to try the D3 regimen...it may make everything else unnecessary! haven't heard of TSA concern with the necessary pills...but I used to carry all my scripts.... and photo copy of the vitamin bottles with pills shown would be a good idea.... I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. well...your doc sounds like he/she knows what they are doing so I am surprised they didn't INSIST on OXYGEN....tis the accepted standard of care first line abortive. O2 has saved many a clusterheads sanity, maybe life. not sure what you experienced at the O2 shop... but you do need a script...and if your insurance doesn't cover...you can offer to self pay. if that doesn't work welding oxygen (same as medical) is your next option... ....I used to travel in cycle...using Lincare travel service I was able to arrange for oxygen tanks at my hotel...same service, same price. you probably already know that the airlines won't allow you to board O2 tanks.... I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day. ...see previous comments re hacks and vials (i could get 15 injects out of the 5 vials)...it IS a powerful med not to be trifled with...especially as you age.... Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail. ...if your doc has an advocates heart (and a healthy disdain for insurance droids) have them write a 'letter of medical necessity" describing your "intractable' cluster headaches and the need for "X" number of vials/dose packs....denying you the scripts your doctor has prescribed without seeing and evaluating you is called practicing without a license....most docs I know are a little more than touchy about being questioned on diagnosis or treatment... So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. Stockpiling!!!..... best jonathan
  8. 1 point
    Venting frustration is welcome. Sharing your story is also always welcomed.
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