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Topic: I thought I was free... (Read 4448 times) |
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Kevin_M
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Re: I thought I was free...
« Reply #25 on: Nov 25th, 2007, 9:03am » |
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Danny,
From that experience, you can see how hard it is to understand reading, comprehending, or typing during a hit. I've pretended to open the paper and read the sports section on a break at work but really was just hiding my head. Anyway, they get mind consuming bad.
on Nov 23rd, 2007, 12:05am, dannyandcindy wrote:Cindy's Dad asked if I wanted to try some O2 from his welding rig to see if it would work. What the heck, I had already read the part on the site about using O2 without a mask and we headed out to the shop.
It worked in about four, FOUR,  4 , minutes! |
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Is there anyway your father-in-law could get you a welder's tank of oxygen, you can see the advantage of having one, but when obtaining or refilling, not mentioning it is for clusters. He can maybe advise about refilling, too. Despite space limitations on a truck, it would seem a must to carry because I don't know how seeing a doc will work out for you as quickly.
Quote: Last time I saw a doc about something I ahad a to choose a primary (don't have one now), get a consultation, get tests, go in to ask for a specialist, get appt with a specialist, get tests, go back in for results.
ONly get time off every coulple of weeks, it could take months to do this. anyone know how to get around it? |
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Concerning any triggers, CH doesn't need one to hit you, if you have CH they will simply occur. Something like alcohol will bring one on though, as mentioned.
Hang in
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| « Last Edit: Nov 25th, 2007, 9:08am by Kevin_M » |
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chewy
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Re: I thought I was free...
« Reply #26 on: Nov 25th, 2007, 6:20pm » |
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on Nov 25th, 2007, 7:37am, dannyandcindy wrote:
If I offended anyone by claiming a Kip 8 when this may have been a Kip 7 or less, I apologize. I appreciate that people do not try to outdo each-other here on this site, and that is a valuable culture to have when discussing such a serious issue. I would not want to unintentionally be downplaying someone else's pain by thinking mine is worse than it really is.
But I am new here. I am still learning. What would you say I had that morning, more like a Kip 7 or so?
Danny |
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No offense taken. The only thing I could do with a keyboard at a Kip 8 would be bash myself in the noggin with it or throw it through a window.
I didn't take it as downplaying anyone else pain. Your pain is your pain. Its always worse than anyone elses when your in the throws of it.
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thomas
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Re: I thought I was free...
« Reply #27 on: Nov 27th, 2007, 9:34am » |
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I'll describe my eight for ya, had one last night so it's still pretty fresh. Ramped up fast! Shot the 4way, didn't do much, grabbed the ice pack, that just made it worse, got my wife to heat up the hot bean bag (Thanks Carol), that was too hot, beat myself in the head, couldn't form coherant words, much less sentences. Couldn't walk, stumbled about like a drunken cripple (no offense to drunks or disabled people intended), cried, moaned, thrashed, kicked, wanted to die, was blind, coffee was too hot, couldn't drink it, knocked shit over and about, pretty much had no concern about anything or any one around me. Just wanted it to end, but was helplessly locked in the dance, stood in the shower for a while, trying to rip my head off my shoulders, finally came down to about a 2, sucked on some O2 for a while, got it down to a 1, smoked a cigarette, could finally see again, asked my wife to turn the light out, I guess it finally went away, because at some time after she turned the light out, I went to sleep. That's one of my eights. Trust me at no time could I communicate with anyone, much less type on the puter. I think that's the message folks are trying to get through.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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dannyandcindy
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Re: I thought I was free...
« Reply #28 on: Nov 28th, 2007, 9:55pm » |
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OK, thanks thomas and chewy. What I was doing seemed to fit the description of a Kip 8 more than a Kip 7. I appreciate you cluing me in.
I got ahold of some welder's O2. I felt like I was making a drug deal. (Not that I've ever done that.  ) I got loaded up on the proper terminology and walked into the gas supply shop like I knew what I was doing.
"Can I help you?" the salesman asked suspiciously.
"Yea, need a tank of oxygen," I said with as much nonchalance as I could muster. He looked at me out of the corner of his eye.
"Do you have a tank to turn in?"
"Umm, no. I, uh, need to get a new one." I was desperately hoping he did not ask me about brazing or cutting tips or something like that.
"What size?" he asked. I had a flash of inspiration.
"I need something portable, can you show me what sizes you have on hand?"
He showed me and I bought one. I think he got suspicious again when I asked him what flavors the oxygen came in. 
The tank and refill was about $150 US, a cheap cutting torch from Harbor Freight Tools was $100 US. Turns out I could have gotten away with just getting a replacement oxygen regulator and some inexpensive air line.
Considering I would pay $1000 (or more) to stop the pain while I am having a HA, I'll consider it a bargain.
Now I have a great weapon to hold me over while I work my way through the insurance maze.
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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dannyandcindy
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Re: I thought I was free...
« Reply #29 on: Nov 28th, 2007, 10:03pm » |
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I also started taking the taurine supplements.
The past three days I have taken 500mg of taurine twice a day.
I am optimistic, even though it has only been a short time. My HA seem less severe when they do come, are shorter in duration, and I have had fewer than anytime since I started my HA diary.
Wouldn't HA journal be more masculine?
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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Rosybabe
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Re: I thought I was free...
« Reply #30 on: Nov 29th, 2007, 12:29pm » |
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 don't complain Danny consider yourself lucky there is a journal . Glad you got the O2.
pain free wishes!!
Rosy.
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 Believing is just the beginning!
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dannyandcindy
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Re: I thought I was free...
« Reply #31 on: Nov 30th, 2007, 8:24pm » |
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I read a lot about the clustermasx and on-demand oxygen regulator but have not seen any links on where to buy one.
Do I email info@clustermasx.com ? I got this from the website with the picture of the clustermasx, but there were no instructions on how to buy one. I would prefer to support anyone who is supporting this community, and will do so if I can figure out how. That being said, would an anaesthesiologist mask do the same thing?
Thanks for your help.
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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E-Double
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Re: I thought I was free...
« Reply #32 on: Nov 30th, 2007, 9:55pm » |
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keep truckin', livin' and learnin'
You seem to be already gaining a wealth of knowledge.
Stay positive and enjoy the ride my friend
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Kevin_M
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Re: I thought I was free...
« Reply #33 on: Nov 30th, 2007, 10:19pm » |
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on Nov 30th, 2007, 8:24pm, dannyandcindy wrote:| would an anaesthesiologist mask do the same thing? |
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Danny,
I'm not sure what (wow, you can spell that!) mask that is, and presently the Clustermasx has been unavailable, but a non-rebreather of this type is pre-Clustermasx recommended and can be ordered here:
www1.mooremedical.com/index.cfm?PG=CTL&CS=hom&FN=ProductDetail&a mp;PID=4269
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| « Last Edit: Nov 30th, 2007, 10:22pm by Kevin_M » |
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dannyandcindy
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Re: I thought I was free...
« Reply #34 on: Dec 1st, 2007, 11:23pm » |
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Thanks Kevin!
Cindy told me how to spell anas, anaes, annasht, a... Ah what the heck, she is sleeping now. I married my spellchecker.
The mooremedical link you gave now refers back the chs.com website splash page. 
Thanks for letting me know the clustermasx is not available at this time. My sister is a respiratory therapist, maybe she can hook me up. I have not told her I am getting CH again, but I guess I will now.
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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Kevin_M
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Re: I thought I was free...
« Reply #35 on: Dec 2nd, 2007, 5:39am » |
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Can't figure how that link did that but I messed up; here is that same link and a picture so you know what it would look like. Don't use the elastic band, cut it off for safety, best to tape the side holes shut and apply over mouth to inhale, remove to exhale, repeatedly.
http://www1.mooremedical.com/index.cfm?PG=CTL&%20CS=hom&FN=Produ ctDetail&PID=4269
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| « Last Edit: Dec 2nd, 2007, 8:40am by Kevin_M » |
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dannyandcindy
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Re: I thought I was free...
« Reply #36 on: Dec 3rd, 2007, 7:20pm » |
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Thnx Kevin, ordered some masks.
O2 demand valve is a bit pricey, $246. Maybe I can find a used one on Craig's List or something.
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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Kevin_M
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Re: I thought I was free...
« Reply #37 on: Dec 3rd, 2007, 9:05pm » |
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on Dec 3rd, 2007, 7:20pm, dannyandcindy wrote:| O2 demand valve is a bit pricey, $246. |
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Danny, you mean maybe a regulator?
There are two kinds, depends on the tank you have, but usually not THAT expensive, much less. I'll see if I can get someone's attention about this for you.
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| « Last Edit: Dec 3rd, 2007, 10:54pm by Kevin_M » |
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RichardN
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Re: I thought I was free...
« Reply #38 on: Dec 3rd, 2007, 11:56pm » |
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Hi again Danny
I am assuming the "demand regulator" you're talking about is the type firefighters may use? Similar I believe to a scuba regulator which is a demand regulator . . . . you really don't need to spend that kind of $$. The type regulators shown on the oxygen info link will work fine . . . . they deliver a constant flow which you adjust to keep the bag filling so you always get 100% 02.
Kevin is right about cutting off the strap . . . . because if you should fall asleep with the mask strapped on, you will wake strangling when the tank runs out . . . many of us have had that experience. With that in mind . . . in your case and in your profession (unless you drive an automatic), I'd probably keep the strap for use while driving . . . .remembering NEVER to strap it on in the sleeper.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Kevin_M
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Re: I thought I was free...
« Reply #39 on: Dec 4th, 2007, 11:00am » |
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Danny,
For now, all I can recall I think until someone corrects me is that there is an 870 model regulator for something like an "E" tank and 540 model for larger tanks. Both at least 0 - 15Lpm.
They can be checked for online or deals at e-bay sometimes. 
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dannyandcindy
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Re: I thought I was free...
« Reply #40 on: Dec 5th, 2007, 10:51pm » |
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Great, thank for all your help!
I had seen something about the demand valve on the O2 link, I think. I assume it is something like a scuba regulator, allowing the O2 to pass at demand level. A scuba regulator might work, even. 
What I am doing now is turning on the tank pressure to the welding regulator, then turning the flow side of the valve on as little as possible. When the flow is something that won't knock my head off, I put the tube in my mouth and can further adjust the flow using the valve at the end of the tube. I breath in through my mouth, not allowing any outside air through.
It took me awhile to figure out the best way to exhale using this method. My mouth kept filling up with air while I exhaled through my nose. I finally got the knack of opening my throat while I push out the air. I am pushing some of the fresh O2 out at the same time, I imagine, but it is the most comfortable thing I have tried.
I am so excited about the O2, thank you all so much!
 The longest it has taken (the longest!) to kill a HA was five minutes!! What an answer to prayer.
I don't know what I can do to pay this community back for all you have done for me. I have encountered two other clusterheads that I have referred to the site, and have passed knowledge along to the friend-of-a-friend. I can only pray that God will put more of us in my path so I can share my story. The idea of fighting through these alone is scary to me now.
Thanks again, and may the God of light abundantly bless you all.
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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RichardN
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Re: I thought I was free...
« Reply #41 on: Dec 6th, 2007, 12:44am » |
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http://cgi.ebay.com/CHEMETRON-Medical-Oxygen-Regulator-15-LPM-CGA540-NEW _W0QQitemZ350003078650QQihZ022QQcategoryZ75080QQssPageNameZWDVWQQrdZ1QQcmdZViewItem
Danny . . . I think this will work for you with the mask Kevin posted above. Check with Jonny to make sure, but I believe the fitting shown will work. If not, Jonny can tell you what you need and where to get it.
I have (out of necessity) used the . . . adjust the pressure so you're blowing slightly more 02 at your mouth than you can inhale . . . turn away, exhale, then inhale again . . . big waste of 02
Keep it simple. All you need is an adjustable (to at least 15 lpm) constant flow regulator and the cheap non-rebreather mask.
So very glad the 02 works for you. It's my only abortive and I go nowhere without it. Depending on how hard your cycles hit, it may not kill them all . . . but you now have a tool to keep the bad ones to a minimum. Remember to use as soon as you feel him coming.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Jonny
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Re: I thought I was free...
« Reply #42 on: Dec 6th, 2007, 7:21pm » |
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on Dec 6th, 2007, 12:44am, RichardN wrote:| Check with Jonny to make sure |
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Richard,
That reg will fit a welding tank, it has the CGA-540 connector on it.
Anyone that needs one would be a fool to pass on a $25 reg of that kind, I own a welding shop and my gas guy charges me $50 to build one of those.
...................................Jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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dannyandcindy
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Re: I thought I was free...
« Reply #43 on: Dec 8th, 2007, 11:52am » |
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Great link Richard!
Thanks for the info, Jonny. I will order one of these regulators next week.
Nettiquette question: the stated purpose of the "Getting to know ya" forum is to introduce ourselves and get basic answers. It seems I am about to that point, doesn't it?
Would it be best to stop this topic/thread and continue the dialog on the seperate topics?
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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E-Double
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Re: I thought I was free...
« Reply #44 on: Dec 8th, 2007, 12:21pm » |
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you are doing just fine
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Sandy_C
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Re: I thought I was free...
« Reply #45 on: Dec 8th, 2007, 1:10pm » |
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Hi Danny and Cindy.
I'm sorry I'm so late in coming in to this thread. Don't know how I missed it, but welcome to the family.
You have gotten awesome advise, and I can see that you are already reaping some of the benefits from it. That's great!
I use welders O2, with the Clustermask and a 540 regulator that can crank up to at least 15 lpm. It has worked every single time in 5 minutes or less. I rented my tank from a welding supply company for $56.00 per YEAR, and my refills are around $16.00. I don't know what size my tank is other than it stands about 3' tall and is a lovely accent to my living room decor
I would recommend laying off the aspirin though. When I first began getting these Godawful headaches, I downed at least 3 extra strength Excedrin tablet with every hit. The helped, but not much. It didn't take long though before I was getting hit after hit after hit. The Excedrin was actually helping to cause rebound headaches, which just compounded the problem. Rely on your 02, ice water, ice packs, energy drinks with Taurine, try the Kudzu, Melatonin at night. These are all tried and true weapons for your arsenal.
Again, I'm happy to hear you are getting a good handle on this affliction.
Wishing you and Cindy Happy Trails. We're here to help you all we can.
Sandy
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Lean on me when you're not strong
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dannyandcindy
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Re: I thought I was free...
« Reply #46 on: Dec 12th, 2007, 2:39am » |
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Thanks Sandy. Rosy had mentioned Kudzu also. I have not found any yet. I have tried a vitamin shop and a couple of Whole Foods Grocery stores. November and December are our busiest times of the year and I have not had much time to search diligently. Getting the O2 up and running seemed a better investment of my available time.
I am continuing with the taurine, 1000mg/day. I have only had one bad day (5 HA, three that needed O2) since starting the taurine. I wonder if maybe I should wait on using the Kudzu if the taurine has been such a help? Reading through the site I notice that many treatments seem to give diminishing returns as time goes by. The Kudzu could replace the taurine if it stops helping. Maybe.
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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Kevin_M
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Re: I thought I was free...
« Reply #47 on: Dec 12th, 2007, 8:06pm » |
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on Dec 12th, 2007, 2:39am, dannyandcindy wrote:Thanks Sandy. Rosy had mentioned Kudzu also. I have not found any yet. I have tried a vitamin shop and a couple of Whole Foods Grocery stores.
The Kudzu could replace the taurine if it stops helping. Maybe. |
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Hey Danny. If ya need, just start a new thread inquiring about how people acquire kudzu. Answers come out of the woodwork here. Ice, taurine, kudzu, or melatonin for when you sleep can all be an aid at times. Some taken on a regular basis though. Ask away about anything, new threads will get attention.
Glad you're staying on the road and busy!
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