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Rush

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Posts posted by Rush

  1. 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.

     

  2. 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!!

  3. 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!

     

    • Like 3
  4. 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!!

    • Like 1
  5. 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

  6. 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!!!!!

    • Like 3
  7. On 8/19/2020 at 12:47 PM, xxx said:

    Bryan,

    I would try loading vitamin D3 at 50,000 IU/day for a week just to build your 25(OH)D3 reserves higher and in the process,

    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.

     

    • Like 1
    • Thanks 1
  8. 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!

     

    • Like 1
  9. 47 minutes ago, rdallasc said:

    i am thinking im going to have the same problem.  we asked my nurse pratictioner, and old highschool buddy to perscribe o2 for my clusters. ive never been" medically dignosed" but all the research,pain, cluster season periods, i know that i have them. always have been self pay, no insurance. when they started 9ish yrs ago, i was misaerble every night,around 7 to 8 at night for 3 months then gone.

     

    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 !!!

  10. 1 hour ago, CHChris said:

    @Rush

    I think the 125 cu ft tank is the perfect balance between size and portability.  The tanks are fairly large, but I can carry them around without issue.  I fill my E tanks off of them and also have them set up for home use.  The rough conversion is that a 125 cu ft tank has almost 3500 L of O2 (close to the volume of 6 E tanks), and that can usually last me a couple weeks.  If I have a really bad hit (or get hit at night), an E tank is not quite large enough to kill it.  Having the extra capacity in the house and ready to go is of great comfort when you're getting hit a lot.

    Also, I had a good experience getting an O2 Rx while traveling to Orlando a few months ago.  I had absolutely no trouble getting E tanks delivered to my hotel room, and only had to fax them the Rx. The company is called Orlando Medical Rentals.  They appear to be setup for serving vacationers paying out-of-pocket, so it might not be cost effective for someone who lives in the area.  But I thought I would pass along probably the only good experience I have had getting service from an oxygen supplier.

    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!!

  11. On 1/15/2020 at 1:00 PM, signals61 said:

    You know, I don't want to sound like I'm wealthy or anything, but cost really isn't the issue for me. I'll gladly pay out of pocket. My problem right now is everyone seems to be saying that they won't sell it to me, even with the prescription and the cash. Bearing in mind, I'm trying to go the "medical" route, using medical grade tanks. 
    I found a source on Amazon that will sell a filled industrial grade tank. I know that many have said over and over that the safety is not an issue, I just really wanted a clean tank, rather than one that's been sitting in an auto shop for the last 6 months, traded in and refilled. 

    Latest update is that Apria said they'd do it, at my expense, if the doctor sent some additional paperwork in addition to the prescription. So what exactly is a prescription for again? Anyway, still playing phone tag with the doctor. Hopefully today I get something resolved. 

    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 :)

     

    • Like 1
  12. On 1/15/2020 at 1:22 AM, CHChris said:

    Once I went to strictly welding O2 I thought I was set.  But there are still problems sometimes.  I usually have to prove ownership of the tank by carrying around the purchase receipts when I have them filled.  I often have to exchange my tanks, which I hate but tolerate.   I also still carry a print out of my O2 Rx with my portable tank, regulator and mask.  But I NEVER mention medical oxygen or Rxs with the welding store.  They get really weird about selling welding o2 when you do that.

    I have two 125 cu ft tanks (M tank) and I fill them with welding o2 for $20 each. I also own 2 E tanks that I fill with a transfill rig I bought off Amazon.  These days my O2 bill is down to about $40-60 per month.

    However, there were some steep up front costs.  Each 125 cu ft tank was about $250, and the E tanks were about $50 each.  The transfill rig was about $80 off Amazon. 

     

     

    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

  13. 14 hours ago, rivensoul said:

    Magnesium is actually what should help with restless leg syndrome.

    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 :)

     

  14. 11 hours ago, spiny said:

    Get a hand truck. Leave it on the truck!!! Easier to haul by a long shot,I usually have a 90 and a 60. But, on occasion they have not had one and I wind up with a 120 or 125. Heavy sucker!!!

    Whatever size you get, be sure to have two!! One to use while getting a re-fill on the other.

    The CH mask is the BEST!!

    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!!!!

  15. 22 hours ago, CHfather said:

    Remember that it's a non-rebreather mask. There is such a thing as a rebreather mask, and it's not what you want.

    At 15 lpm, you'd get about 4 hours of O2 from a 125 cf tank.  (125 cf = 3540 liters, divided by 15 = 236 minutes)  A tank that big is very heavy and unwieldy.   If you can handle it, of course it's a good idea.  Being an old guy, I prefer managing two 60 cf tanks -- but Dallas Denny, who's nearly as old as me, has a great big tank, which he had to drag through five miles of mesquite thickets to get to his house (something like that).  Maybe at least get a rolling stand for it.

    You know the rules about getting welding O2, right?  DO NOT say it's for a medical use, and do not request a tank using medical designations (M tank; H tank, etc.).  If you feel uncomfortable about questions they might ask (though they probably won't ask any), have a story ready, such as you're just picking it up for a friend. 

     

     

    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

    • Like 1
  16. 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..

    • Like 2
  17. 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!!

  18. 3 hours ago, CHfather said:

    We've heard a lot about how crazy it is to get O2 in Florida.  I've sent you a PM about that.  Welding is an okay way to go, for sure, but if you can get a decent medical supplier you don't have to schlep to the welding place to get tanks refilled (replaced) while you are in cycle.

    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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