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BaseballCoach
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Just got back from Doc
« on: Dec 21st, 2007, 3:19pm » |
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Told him I wanted to retry O2....He wrote script...I brought 4 tanks home....I did realize that the first time I took the O2 (a year ago, when I was MUCH DUMBER, if that's possible), the mask was totally wrong. I'm not sure what they are called, but it had no bag and even had slits in it. This time i did get the nonrebreather mask. He wants me to take 10 liters at first sign....Also, BP was fairly normal so I'm upping Verap to 120....after 7 days I'll go up to 160 and hopefully keep going upward.
Asked him about Red Bull and Coffee, he said they could cause rebounds? Anyone agree with that? Said he wouldn't recommend....
Anyway, visit went good. He did say since I was chronic and have been getting them so bad for such a long time, I can stay on presnisone at 20 mg a day....He'll just have to keep a careful watch on me and my body....
I truly want to thank everyone for the advice....Without you I wouldn't have had any idea what i was saying/talking about when I went to him. Alot of times, they are so backed up, they just try to get you in and out and hit and miss. I could tell he was suprised and interested in what I had to say. Again, thanks a Bunch!
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Linda_Howell
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Re: Just got back from Doc
« Reply #1 on: Dec 21st, 2007, 3:25pm » |
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Coach,
that is wonderful news. I am so happy for you. Make certain you get on the 02 at the very first hint that you'll be getting hit. It doesn't work as well, if at all...if you wait til you're in agony. Also UP that regulator to 15 lpm...10 wouldn't work at all for me.
I have never heard of the energy drinks causing rebounds. Ever. Certainly not for me and the many others I've talked to who use it.
Sounds like this Dr. will be your best advocate. GOOD ON HIM!!!!!!!!
Linda
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Brew
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Re: Just got back from Doc
« Reply #2 on: Dec 21st, 2007, 4:20pm » |
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on Dec 21st, 2007, 3:19pm, BaseballCoach wrote:| ...when I was MUCH DUMBER, if that's possible. |
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Don't worry, coach - I say that all the time, except in reverse. I was so much smarter then, I'm dumber than that now. I blame my son - he sucks all the energy and intelligence out of me.
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Always remember that you're unique, just like everyone else.
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Linda_Howell
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Re: Just got back from Doc
« Reply #3 on: Dec 21st, 2007, 4:29pm » |
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Hmmmmm Brew, if that is true, then with 7 children, my I.Q. should be right up there with a carrot. Or George Bush.
Whichever is lower.
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| « Last Edit: Dec 21st, 2007, 4:31pm by Linda_Howell » |
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Gator
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Re: Just got back from Doc
« Reply #4 on: Dec 21st, 2007, 5:58pm » |
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Congrats on getting the O2, coach. My O2 tank is my best friend. I do more heavy breathing with it than with my wife. LOL
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Jonny
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Re: Just got back from Doc
« Reply #5 on: Dec 21st, 2007, 6:55pm » |
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10 liters is crap for most of us, if that reg dont go to 15 ask for one.
If they wont give you one just PM me and I will get one to you at no charge.
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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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Sean_C
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Re: Just got back from Doc
« Reply #6 on: Dec 21st, 2007, 7:04pm » |
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on Dec 21st, 2007, 4:20pm, brewcrew wrote:
Don't worry, coach - I say that all the time, except in reverse. I was so much smarter then, I'm dumber than that now. I blame my son - he sucks all the energy and intelligence out of me. |
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LMAO offspring does that 
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vietvet2tours
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Re: Just got back from Doc
« Reply #7 on: Dec 21st, 2007, 8:09pm » |
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12-15lpm rocks. We'll get ya there coach.
Potter
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Annette
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Re: Just got back from Doc
« Reply #8 on: Dec 21st, 2007, 8:54pm » |
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When my husband was the worst part of his cycle, he was drinking up to 8 cups of strong coffee a day plus maybe 3-4 Red Bull a day for months on end, no rebound problem noted. They worked quite well in killing those shadows. The headaches came at regular hours, 9 am, 3 pm, 8 pm and 4 pm like clock work regardless of how much caffein intake.
The 4 am hits were eventually stopped after 2 weeks on Melatonin at 12 mg before bed so if you get hit at night its worth a try.
With Neurontin and Verapamil as preventive, the day time hits became less, some days 2 hits instead of 3 and the intensity was less but they still came. However, oxygen aborted most of the hits within 5-10 mins and trex or zyprexa took care of those that broke through.
Try Redbull or Coffee for your next shadow, you may be pleasantly surprised as to how well it clears up.
Good luck and painfree wishes to you.
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BaseballCoach
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Re: Just got back from Doc
« Reply #9 on: Dec 21st, 2007, 11:35pm » |
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Thanks guys for all the replies....I really cannot say in words how glad i am that i found this site....it's all i've talked and thought about for the past week, lol.
The bad news is I had to go out of town for the holidays for 3 days (Also to a New Orleans Saints game).....so I'm going to rely on the trex while I'm gone....I'll have 2 weeks off of school to experiment and "play" with the O2 when i get back....I'll try the 10 and use the 12 or 15...I didn't check to see how high it went Johnny, but the lady did tell me not to turn it up too high so I'm assuming it will go higher.....
Again, thanks for everything....Will keep you all informed...Pain free wishes to all of you and have a Merry Christmas.
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Linda_Howell
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Re: Just got back from Doc
« Reply #10 on: Dec 21st, 2007, 11:47pm » |
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Quote:| ...I didn't check to see how high it went |
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Sorry. Not making fun at your expense, but when I got my very first regulator? THAT was the very *FIRST* thing I checked for. lmao....
Pain-free wishes for the rest of the year for you Coach.
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Pinkfloyd
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Re: Just got back from Doc
« Reply #11 on: Dec 22nd, 2007, 1:08am » |
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on Dec 21st, 2007, 3:19pm, BaseballCoach wrote:Asked him about Red Bull and Coffee, he said they could cause rebounds? Anyone agree with that? Said he wouldn't recommend....
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Hey Coach,
He has probably seen a lot of people come into his office complaining about "weekend headaches" which often appear in people that drink a lot of coffee or soft drinks every morning to get going for work. Then they skip the morning "fix" on Saturday morning, and come down with withdrawl/rebound headaches. It's a very common thing, especially in today's, hit the door running, world.
The difference here, with treating your clusters with caffeine and/or caffeine & taurine is that you are actually treating a symptom, and you are also not doing so on a regularly scheduled cycle.
If you downed two Red Bulls every morning for a month, at 8:00am to treat clusters, there is a possibility that somewhere down the road you could get a withdrawl "headache" when you stopped the caffeine fix. But, the odds of it triggering a cluster, is remote IMHO.
The other thing to remember here, is that by using the caffeine to "treat" a symptom, the caffeine is actually being used by the body for a purpose, other than for the high, so even the odds of withdrawl problems is greatly lessened.
This same scenario is played out with treating pain with opiods vs. using them for the high. People treating their pain with opiods have approximately a 2% chance of becoming addicted. People using them for the high fall into addiction very quickly, similar to the coffee drinkers (of which I confess to drinking pots of the stuff).
Although caffeine withdrawl headaches aren't fun, they certainly don't compare to clusters. I myself, would be very happy to trade being able to treat a lot of clusters and cluster shadows with caffeine, for the slight possiblility of getting a caffeine withdrawl headache somewhere down the line.
Sort of like having your number 9 hitter lay down a bunt to get a runner into scoring position. Sometimes, the sacrifice is well worth it, besides, he just might beat it out.
Bobw
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BarbaraD
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Re: Just got back from Doc
« Reply #12 on: Dec 22nd, 2007, 7:27am » |
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Coach - you have a great holiday and get on that O2 as soon as possible. Hope it works for you as well as most of us.
And I agree with everyone about the Red Bull and coffee. Been on it for years and my neuro prescribes it to his patients.
We're glad you found us and don't go anywhere. Once you find us - the rule around here is you STAY - once we have you under control - you stick around and help someone else.
Now you have a Merry Christmas and go help those Saints win and get your rear back here and let us know how you're doing....
Hugs BD
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BaseballCoach
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Re: Just got back from Doc
« Reply #13 on: Dec 28th, 2007, 6:38pm » |
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Well, Thank GOODNESS I haven't been able to test my O2 yet.....Knock on wood, I've gone a whole week without a CH.....That's the longest I've gone in probably 6 months....I'm not sure if it's the meds I'm finally taking *like i'm supposed to* or God watching down on me, or a combo of both. I'm up to 160 mg of Verap now at night and by next week will be up to 200......This relief (even though it's only been a week) feels great....I'm even saving a few trex shots that...who knows maybe I'll get ahead on them a little bit.
Thanks for all the prayers and well wishes...I know the beast will be back....I'll let you know how all it comes and acts when it does!
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vietvet2tours
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Re: Just got back from Doc
« Reply #14 on: Dec 28th, 2007, 6:44pm » |
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It's the oxygen ace. The beast hates oxygen.
Potter
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RichardN
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Re: Just got back from Doc
« Reply #15 on: Dec 29th, 2007, 9:36am » |
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Hi Coach
A note about the Verapamil. As you up the dosage, don't be surprised if you have some constipation . . . many do (I did), and some don't. If so, easily remedied with diet or stool softenners.
Hope you remain totally PF, but if/when you get hit again, use the 02 FIRST! Take it to school with you and keep in your office or the teachers lounge (anywhere you can get to it quickly). Rather than being embarrassed by my tank ("oh, you poor thing" , I use it anywhere/everywhere I might get hit. . . . and in-between huffing . . . explain that I am aborting a cluster headache . . . and after "he" leaves, explain what's happening to my face/head and why the 02 works. This has helped me to identify several clusterheads over the past five years, . . . "my brother has had headaches like that since he was a teenager", "my friend of 30 yrs in Oregon has headaches like that", "Our son suffers from CH, but don't know if he's heard of 02 therapy" . . . all of which prompts me to insist on having them come here, call me, I'll call them . . . whatever. There are still so many out there who feel alone or suffer needlessly . . . . I've made it my quest to find as many as I can.
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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BaseballCoach
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Re: Just got back from Doc
« Reply #16 on: Dec 30th, 2007, 6:54pm » |
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Thanks Richard....I have decided if I'm going to take the O2 to school yet....Still have a week to think about how to store it....Not alot of storage space in my class...our coaching office is clear across campus and the main office is a good walk....The real problem is getting other teachers to step in and watch my class if I had to leave for 5-10 minutes......
I do have one question...Would it be so bad to use the trex while only at school? What would most people say is the main reason for NOT using the trex if it works for me? The eventual health effects or the worry of running out from month to month? I get 16 injections per month....usually use all of them plus 3-5 samples from Doc sometimes....I figure if i mix O2 with some and trex with some, I'll be fine....
Just curious, would the O2 at home, trex at work, be a bad plan?
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vietvet2tours
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Re: Just got back from Doc
« Reply #17 on: Dec 30th, 2007, 9:19pm » |
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I freakin tried I really did.
Potter
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Kevin_M
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Re: Just got back from Doc
« Reply #18 on: Dec 30th, 2007, 10:02pm » |
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on Dec 30th, 2007, 6:54pm, BaseballCoach wrote:| Just curious, would the O2 at home, trex at work, be a bad plan? |
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That's what I do. Always keep a trex or two at work, oxygen at home. They both work for me.
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| « Last Edit: Dec 30th, 2007, 10:06pm by Kevin_M » |
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RichardN
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Re: Just got back from Doc
« Reply #19 on: Dec 30th, 2007, 10:09pm » |
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OK . . . a little bit of a rant here . . . please don't take offense.
First, I'm VERY glad the meds have been working for you and you've been enjoying some PF time . . . and I REALLY hope your cycle has ended, but if you get multiple daytime hits, you're going to go through your script of trex in a hurry . . . . even using the "imitrex tip" (link on left) . . . . I can't use it so I'll leave it to others to advise on how harsh trex is on your system.
Second, you haven't proven to yourself that 02 is going to be effective for you. It does take proper instruction and some practice to abort in minutes (fast as/or faster than trex if used at the first sign of attack). Most here use the 02 first to abort the majority of attacks and save the trex for the occasional hits the 02 won't reach (usually because you waited too long to get to your 02).
Copy the "Letter to Employers and Colleagues" (2nd thread down on the "Getting to know you" board, and let your co-workers/principal know what's going on in your head. It's three pages that's important for them (and you) to know. Ask them about the advisability of informing your students should you need to use your 02 in class.
You spoke about the problem of getting another teacher to take over for 10-15min while you went to use your 02. What effect do you think it would have if seen having a 45 min Kip 10?
Storage? . . . . You're a coach . . .gotta be gearbags large enough for an "E" tank . . . or duffel bag. If that's still cumbersome, put a couple of "B" tanks in a backpack (a little over a foot long). As a coach, you've been trained to recognize various injuries, traumas of different types, and I'm sure you train your team managers in different techniques to handle specific injuries. Well . . . . guess what . . . one of the best (and fastest) fixes for YOUR trauma is that green-topped wonder OXYGEN!
PLEASE don't be embarassed (as many are) by your 02 tank . . . believe me that will pass as soon as you find out how effective it can be.
OK . . . done with my rant. Please know that it's written with only the best intentions.
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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BaseballCoach
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Re: Just got back from Doc
« Reply #20 on: Jan 4th, 2008, 6:26pm » |
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Been 14 days....still no headaches....longest I've been in about 2 years....Doc think it's the pred and not the verap though  . I've been on 20 mg of pred and now up to 200 mg of Verap...He's dropping me to 15 pred and will eventually be on 240 Verap....said we will find out soon enough if its the pred or the Verap....The pred is not making me feel bad....I'm just quite puffy and I don't really like that, lol....Sure as hell is better than CHs though!
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DennisM1045
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Re: Just got back from Doc
« Reply #21 on: Jan 5th, 2008, 7:58am » |
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Thanks for the update Coach. Good luck with the Verapamil.
-Dennis-
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BaseballCoach
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Re: Just got back from Doc
« Reply #22 on: Jan 10th, 2008, 4:08pm » |
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20 Days and still no CH!!! It's been so long since I've went this long....
Tell me what you folks think....I'm not too exited, neither was doctor either, but the relief does feel good...am starting to hold out a little hope....
Here is meds I took
7days
Pred 20 mg Verap 160
7 days
Pred 15 mg Verap 200
About to start Pred 10 mg Verap 240
Doc says he thinks its Pred, what ya'll think?
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BarbaraD
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Re: Just got back from Doc
« Reply #23 on: Jan 10th, 2008, 7:13pm » |
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Methinks the pred is letting the verap get into your system and now you're getting off the pred -- it's time to start tapering.....
Glad to hear you're pf tho -- that's ALWAYS good news... now stay that way!!!
Hugs BD
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Crappy
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Re: Just got back from Doc
« Reply #24 on: Jan 13th, 2008, 5:19am » |
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on Jan 10th, 2008, 4:08pm, BaseballCoach wrote:20 Days and still no CH!!! It's been so long since I've went this long....
Tell me what you folks think....I'm not too exited, neither was doctor either
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Have you ever gone this long before? I'd be thrilled, since I haven't gone more than 3 days in 3 years! I haven't tried Prednasone, and already taking 240 Verapamil. I always thought prednasone was just for episodics to take while waiting for their preventatives to kick in. Maybe I'll suggest that to my neuro next week. Please keep us updated.
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The plural of "anecdote" is not "evidence."
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