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Everything posted by Rush

  1. It is no wonder these things are so hard to figure out, they vary with time and people.. this is only the third time I have had access to O2, but have yet to get one I could not stop with enough O2. But most of my 40 years with CH's has been ice packs and dancing.
  2. No I Haven't... (on the indomethacin ). But with a CH it is "better" to start at onset, but there have been times (like now) that my CH's are not as intense and sometimes very short, so if it is like a KIP 4, I will try to ride it out, but if it hit's 45 minutes or so, I will throw in the towel, because then I know it might be one of those 3 hour jobs. But I can get on the O2 with a KIP 9, and it will stop it, it's just not as quick if I don't start at first sign. But I am speaking for myself here :).. I imagine it may vary by person. I may be wrong, but it was my impression that Chronic Cluster sufferers even got breaks between CH's, just not real breaks in the cycle... And BOY will I be told if I am off base :).... And if that "is" the case (not sure again), then I would be thinking more on the HC like you said.
  3. Wow, no help from O2... There are not many people with CH that don't at least get "some" relief from it.. I had to look up the HC (whether it is CH HC I, like everyone else, will grasp all straws :\...) I have been in cycle since 12-9-20, so I wanted to look into the HC just to make sure. Beginning to think I am going chronic arghh.. It does sound like you made some head way though. GOOD LUCK!!
  4. I know this thread is about a month old, but just wondering how you made out with the O2?
  5. I will have to remember that.. in the past I didn't even consider busting, but this cycle that (I think is just winding down) was a real test on sanity. The panic attacks I used to get pretty much kept me from even looking into it, but if I have a life preserver (and I do have Xanax for when I do run into anxiety), it would make it way less stressful.. so between now and my next cycle I think I may start "educating" myself in case I decide to take the plunge! Thanks Bejeeber!
  6. I have thought a lot about busting, but it's been so long since I have had a full blown panic attack I am to paranoid to try ... ( have often wondered if my little trips in the seventies caused these damn CH's in the first place lol :].. I can just see me having a panic attack "while" I am having a CH ! .. makes you wonder how much a person can take arghhh.. Wish you luck with it, sounds like on the downside Take Care!!
  7. Sounds very similar to what I am going through.. my cycles are normally 6-8 weeks, I am now on week 11... the first 5 weeks were much milder than normal, then they ramped up in intensity.. mine cycles "used" to start out full throttle. This cycle started on 12-9-2020, so I did a full loading dose of 50 k D3 a day for 8 days, then brought it down to 15k for a month, then back to 10k.. I was wondering if that loading dose was what kept the start of the cycle mild in intensity... also wonder if it prolonged my cycle (terrified of going chronic).. I wish someone would come up with an at home self test kit for the D3 / Calcium, so I would know if I could extent the loading time. Sorry for rambling Chris, was mainly going to ask you how long the cycle ended up lasting???? Please say you are not still in cycle! Randy
  8. You are so right about it having a habit of changing.. I got my first CH when I was 23 (I am now 62), and it has changed and morphed over the years. I just started the vitamin regimen in 2016, had no cycle at all in 2017-2018, had a light cycle of "shadows" in 2019, I am now at "what I hope" is the end of a cycle that started early December 2020... Even though this has felt like a full cycle in frequency, it is much lower on the pain scale, and they are not lasting as long. I really hoped when I went the 2 years PF, I was going to be one of the lucky ones that would never have one again, but I keep telling myself they are not a fraction of the pain level I am used to, and they really shorter, The first thing I do when it starts is look at the clock, have been for years.. and I watch A LOT less of the clock these days Good Luck!!!!!
  9. I do have question about this letter, do you put your name or any other info on it? or just the text only.
  10. Rush

    D3 Experience

    I go this advice from Batch last year when I started getting shadows.. (everyone is different) but it worked for me.. knocked my shadows right out.
  11. Thanks for the input Batch, I am writing it at this moment and logged on to see if I could get any pointers.
  12. HOT DAMN!!!... Boy I am glad to hear somebody is able to hit the lottery :).... I used to have a monster tank that was setup in my house like that (oddly enough 15 years ago I didn't have a problem getting it), then my Insurance AND doctor changed because of my employer, then I hit a brick wall. Hallelujah!
  13. The fact that your Doctor "gets it" is definitely a plus.. I have brought in literature and such, and mine has next to no clue what a CH REALLY is.. the only place I had luck with several years ago, was a "sleep deprivation" (spelling?) institute that took my Rx with no problems at all, they went out of business and I have had no luck trying to get the medical o2... thats when I went through these message boards to look into the welding setup which a lot of people use. GOOD LUCK !!!
  14. I went to the Orlando Medical Rentals website, and it looked familiar, but that's all I can remember from 2+ years ago when I had the Rx.. I got so frustrated after a couple months that I gave up to go with the welding setup.. My wife is so irritated that I did not follow through when I decided to go with the welding tank, because my cycle ended and have been pain free for 2+ years. The 125 tank sounds good, I found a place about an hour from here that didn't seem overly interested in what I needed it for so I am going to go that route. Still only having shadows for now, but my last cycle was hitting me HARD 2-4 times every night so I was curious about the tank size. Kinda strange, I have been getting these since my early twenties (I am 61 now).. and they mostly were all during the day, but last 2 cycles were 95% during the night.. odd The neurologist I saw to get the Rx I only saw once, or I would give it one last shot with the Place you found.. to scared to wait now :\ Thanks for info Chris!!
  15. Good luck !! I have given up trying, I had an Rx from my doctor, but could not get anyone in Orlando to fill it.. It would be nice if we could pass a few of our CH's on to these people so they would understand in a BIG WAY
  16. I have had no CH cycle since I started the vitamin regimen, been about 2 years :).. now out of the blue I have been getting shadows the last couple of nights and am HELL BENT on getting my welding setup.. 2 years ago I spent countless hours trying to get medical oxygen and it is enough to frustrate ANYBODY! I was looking at the 125 tank, has that worked good for you Chris?.. I am also going to order the non re breather mask, and have to look into the best regulator to use. I don't care about having to haul a heavy tank, I would rather have enough to last longer when I have a bout.. thanks
  17. Well I know I remember my first one... riding down the road standing in the bed of a roofing truck in 1979, it was not an odd place but boy do I remember it..
  18. I actually started magnesium quite some time ago (pharmacist told me about it)... and it did help.. but either the Calcium or the D3 combined with the magnesium worked much better than the magnesium by itself (I have a feeling it might be the calcium).. RLS can be REALLY annoying, but kinda petty when compared to CH's
  19. Just the part about "less" O2 is a major plus in itself (especially after seeing your calculations on the 125cf tank)
  20. Yes sir, some of his posts (Batch) I can't even understand .. smart cookie.. I will definitely read that info. I have done it wrong, so I want to try doing it right for a change.
  21. I like that idea, I could strap it right to the hand truck.. very good idea.. Once I get this first setup right, I will add a 60 to it.. Thanks guys, I only had a regular mask with holes in it last year.. gonna do it right this time, will take a look at the CH mask. Take Care!!!!
  22. WOW... I thought it be a little better than that... the tank I rented last year (now out of business) was at least 4 ft high (or more) but I don't recall the cf of it.. mesquit thickets damn, all up hill I am sure yes, I know the rules about the welding tanks (read enough here to pick that up), I did boiler work for alot of years, so hopefully I got enough knowledge to squeeze by. I am 58 years old, but I will gladly drag it through any thickets.. I have had cycles with and without O2, I don't care how heavy it is lol
  23. When I started the D3/Mag/Calcium last year, my restless leg syndrome has all but vanished while I have been off cycle... I am convinced the D3 regime is what has helped it.. Nothing worse than 3 CH's a night with restless leg syndrome it between arghhhh..
  24. MIND READER!!!.. I was just researching regulators and masks, I have a regulator but it is old and leaks when I adjust the flow knob. I never got a re breather mask like everyone said to use, so I am going to get one for this setup. Even got the place picked for the tank, but it's about 60 miles away so I am going to have to pick a day to run over there. I hope the 125 cf tank I am looking at is big enough.. Thank you sir!!
  25. I went through it for months last year.. saw the neurologist and got an Rx, but spent forever trying to fill it to no avail, small tanks are not a problem, but won't cut it for CH.. I really did want to stay with the med O2, but they just make it impossible. Thanks guys!
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