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Title: Just got back from Doc Post by BaseballCoach on Dec 21st, 2007, 3:19pm 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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Title: Re: Just got back from Doc Post by Linda_Howell on Dec 21st, 2007, 3:25pm 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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Title: Re: Just got back from Doc Post by brewcrew on Dec 21st, 2007, 4:20pm on 12/21/07 at 15:19:52, BaseballCoach 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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Title: Re: Just got back from Doc Post by Linda_Howell on Dec 21st, 2007, 4:29pm 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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Title: Re: Just got back from Doc Post by Gator on Dec 21st, 2007, 5:58pm 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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Title: Re: Just got back from Doc Post by Jonny on Dec 21st, 2007, 6:55pm 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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Title: Re: Just got back from Doc Post by Sean_C on Dec 21st, 2007, 7:04pm on 12/21/07 at 16:20:00, brewcrew wrote:
LMAO offspring does that ;;D ;;D |
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Title: Re: Just got back from Doc Post by vietvet2tours on Dec 21st, 2007, 8:09pm 12-15lpm rocks. We'll get ya there coach. Potter |
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Title: Re: Just got back from Doc Post by Annette on Dec 21st, 2007, 8:54pm 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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Title: Re: Just got back from Doc Post by BaseballCoach on Dec 21st, 2007, 11:35pm 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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Title: Re: Just got back from Doc Post by Linda_Howell on Dec 21st, 2007, 11:47pm Quote:
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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Title: Re: Just got back from Doc Post by Pinkfloyd on Dec 22nd, 2007, 1:08am on 12/21/07 at 15:19:52, BaseballCoach wrote:
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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Title: Re: Just got back from Doc Post by BarbaraD on Dec 22nd, 2007, 7:27am 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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Title: Re: Just got back from Doc Post by BaseballCoach on Dec 28th, 2007, 6:38pm 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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Title: Re: Just got back from Doc Post by vietvet2tours on Dec 28th, 2007, 6:44pm It's the oxygen ace. The beast hates oxygen. Potter |
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Title: Re: Just got back from Doc Post by RichardN on Dec 29th, 2007, 9:36am 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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Title: Re: Just got back from Doc Post by BaseballCoach on Dec 30th, 2007, 6:54pm 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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Title: Re: Just got back from Doc Post by vietvet2tours on Dec 30th, 2007, 9:19pm I freakin tried I really did. Potter |
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Title: Re: Just got back from Doc Post by Kevin_M on Dec 30th, 2007, 10:02pm on 12/30/07 at 18:54:15, BaseballCoach wrote:
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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Title: Re: Just got back from Doc Post by RichardN on Dec 30th, 2007, 10:09pm 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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Title: Re: Just got back from Doc Post by BaseballCoach on Jan 4th, 2008, 6:26pm 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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Title: Re: Just got back from Doc Post by DennisM1045 on Jan 5th, 2008, 7:58am Thanks for the update Coach. Good luck with the Verapamil. -Dennis- |
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Title: Re: Just got back from Doc Post by BaseballCoach on Jan 10th, 2008, 4:08pm 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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Title: Re: Just got back from Doc Post by BarbaraD on Jan 10th, 2008, 7:13pm 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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Title: Re: Just got back from Doc Post by Crappy on Jan 13th, 2008, 5:19am on 01/10/08 at 16:08:41, BaseballCoach wrote:
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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Title: Re: Just got back from Doc Post by DennisM1045 on Jan 13th, 2008, 11:45am Hi Coach, I'm glad to hear your relief continues. I agree with Barbara that this is probably due to the Pred. Unfortunately you have to taper down and can't stay on it forever. It's just not healthy. With luck you'll have enough Verapamil in your system to keep the beast at bay. This is the trick of the dance your are involved in. When do you have enough Verapamil in your system to be of theraputic value? Don't be surprised if you have some breakthrough HAs once you taper down. Let your Dr know so the two of you can work through this transition period. I hope Verapamil is your magic bullet. PFDAN! -Dennis- |
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Title: Re: Just got back from Doc Post by BaseballCoach on Jan 15th, 2008, 2:02pm Thanks Dennis.... I'm now on Verap 240....Doc said that's what I'll level off at for now. I'm on Pred 10 mg and will start on 7.5 in 2 days. After 7 days of that, I will go to 5 mg of pred and he said we will come up with a plan after that. Crappy, The longest I had previously gone is probably 7-10 days.....Today is my 25th day. I haven't went that long since my HAs have gotten really bad which has been the last 3 or 4 years..... I'm think it probably is the pred every day that helped....and it kept me up at night and puffed me up....but coming down to 10 mg I can already tell I'm losing some weight by eating right and I feel normal again....Hopefully, notice I said hopefully, the 5 mg will hardly have an effects on me and I can then get off of them or taken them rarely.... For Everyones INfo, My mixture consist of, Morning- 10 mg Pred 75 mg Topomax 500 mg Depakote Night 240 mg Verapamil 75 mg Topomax 500 mg Depakote Only thing that will change now is the Pred. |
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Title: Re: Just got back from Doc Post by Crappy on Jan 15th, 2008, 2:28pm Coach, You sound alot like me. About 2-3 years really bad, longest PF I can remember was about 3 days when I had a really bad head cold (I loved having that cold!). My mixture is similar: Morning: 100mg Topomax 200mg B2 80mg Verapamil Afternoon 80mg Verapamil Night 100mg Topomax 200mg B2 80mg Verapamil Interesting that your Verapamil is all at night. With this mixture my daytime hits have reduced significantly - they come every 2-3 hours like clockwork, but they're not bad, below kip 5, and I can beat them down with thermal biofeedback breathing techniques, red bulls, or O2. Night time is my killer. 7 PM to 11 PM is purgatory, 11 PM to 2 AM is hell, and O2, triptans, ice, etc. don't do nothin' yet. |
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Title: Re: Just got back from Doc Post by BaseballCoach on Jan 15th, 2008, 10:00pm Well I will say in that one aspect we are quite different....the WORST mine have been have been when I've had a cold, lol. I thought it was because it cut off my O2 to my brain even more....probably the 2-3 worst Cluster Attacks I've had were when I was also sick with a cold. I think the reason the doc prescribed all the verap at night was because he was worried that my bp would be too low??? I know he told to be careful getting out of bed in the am. It stays pretty normal though and I don't feel too bad. Maybe I could try some in the morning if this doesn't work. So far so good though. |
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Title: Re: Just got back from Doc Post by Crappy on Jan 15th, 2008, 10:42pm Yeah, colds and flue are usually the worst for me, too. There was just this one 3-4 day period where I had no symptoms but a nose that ran non-stop, constant sinus pressure, and nothing would make it stop. A few hoirs before it hit, my shadows stopped completely, and no ha until the day I woke up without the runny nose. It was odd, and I wish I could bottle that bug and find out why it stoppedmy ch dead, because nothing else does. |
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Title: Re: Just got back from Doc Post by Kevin_M on Jan 16th, 2008, 4:49am on 01/13/08 at 11:45:16, DennisM1045 wrote:
I definitely work closely with the doc. For instance, verapamil at 480mg will suffice for me but there are fluxuating times we go to 600 or 720 for periods to get through tougher times, and decreasing gradually after things get under control for awhile, sometimes eventually tapering back to 360mg for a couple months. Back when being an episodic, tapering up to 360 was fine in the beginning. The middle cycle worse, requiring a step up and then gradually tapering to 360 again until it was safe to slowly taper off at the end. If verapamil is effective for you, the level that works can change as the cycle does. It works for me but is effective at different levels as the CH affects me differently. No constant level carries me throughout the year, tapering back when possible after difficult times. I've not tried topomax but it perhaps might need to be similarly regulated, stay close with your doctor to get results. Regulating a combination of drugs can be more complex to see which is working or what combination works for you. |
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Title: Re: Just got back from Doc Post by BarbaraD on Jan 16th, 2008, 8:57am I've taken the topamax since 99 and have found that if you take the WHOLE dose at night before bedtime, you can eliminate most of the side effects (dopey feeling, memory lapses, etc) pretty well. I've seen no difference in the effects it has on daytime hits by taking it this way. I agree with Kevin on the regulating of the dose of meds. As an old warrior of this disease, (chronic) there are times during the year when I take MORE topamax than at other times. But over the years I've got my meds down to topamax, trazadone and O2 for the most part. I keep cafergot for the occasional breakthru that Red Bull or coffee won't abort, but don't take a lot of that. Melatonin at night is a must. Everyone has to find his/her magic cocktail and then hope it continues to work. Hugs BD |
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Title: Re: Just got back from Doc Post by BaseballCoach on Jan 17th, 2008, 8:07pm One other thing that I didn't mention is that I have changed my eating habits during this "miracle period". I have really cut down on the greasy foods. Actually my gf put me on a diet, lol, and refuses to cook anything unhealthy for me. I eat alot of whole wheat stuff, baked foods, and drink alot of water, no carbonated beverages.....Don't know if any of this correlates, but I know it makes me feel alot better. |
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