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Title: The joke that is health care in America Post by PittsburghJoe on Mar 29th, 2004, 8:47am Just got off the phone with the neuro's office. They can see me April 14th. I told the receptionist that I would probably be insane by then from lack of sleep and anxiety, and that I'll deal with my (useless) PCP to try different meds. I'm sure my PCP is gonna tell me to keep going with the Depakote, which still isn't working after 3 weeks. Maybe he'll also put me on yet another round of prednisone, which also didn't work, just made me bloated. And if I'm REALLY lucky, I'll get to keep my 5 lpm O2 and my imitrex tablets, if he'll get my insurance company to allow me more than 18 tablets in a month. Hopefully I'll actually be able to sleep sometime around mid-May. Sorry all, just had to rant here... Joe |
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Title: Re: The joke that is health care in America Post by Edski_1 on Mar 29th, 2004, 9:03am Can you suggest some other things to your PCP? Maybe some other triptans (BUT DO NOT MIX ANY TRIPTANS!!!!), or topamax? Or add melatonin? I would not mix melatonin and topamax...read that combo can produce some serious shadows. Here's a link I found a while ago that covers several treatment options...pretty good article. http://www.future-drugs.com/Iparticle.asp?publicationid=4&articleid=286 |
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Title: Re: The joke that is health care in America Post by Luke63 on Mar 29th, 2004, 9:40am Mornin Joe...Howz things? Well had 2 PF nites...but last nite had 2...and you? Frickin insurance co's huh...prick bastards sometimes. Hope the best for ya buddy...keep in touch...Luke |
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Title: Re: The joke that is health care in America Post by toader on Mar 29th, 2004, 12:14pm Wow, Edski - you're just kickin the dead horse [anti-Dopeymax] anyway you can now eh? [smiley=laugh.gif] Well Joe - it does suck, no doubt. You can whine about it or you can do something. That "something" is either call the neuro every morning (yes, every single morning) to see if they have a cancellation. Or arm yourself with information from the Internet such as the documentation Edski quoted and get scripts from PCP. For example, go for these basic preventatives in combo: 1) Verapamil 2) Depakote (or Dopeymax) 3) Melatonin (well you can get this OTC - take 9mg nightly) Plus you need the basic abortives: 1) O2 2) Trex Sounds like you got the O2 going now. Don't rely on Trex pills alone. I would add injectables - the 6mg vials plus scripts for needles and syringes. Ahhhh - does the trick. Start with that, see how it goes. Get your nights under control first. Sleep is your first priority. Don't worry about finding the *best* drug combo or shadows or any of that now. Just get on something and get on it fast. Good luck, dude Pullin for you and hopin you find some relief soon!! :) :) |
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Title: Re: The joke that is health care in America Post by Edski_1 on Mar 29th, 2004, 2:15pm What Todaer? Anti El-Dopa???? Me??? Still doing my 100 mg a night... Not liking the personality it gives me, but I do like the PF days and nights! :) |
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Title: Re: The joke that is health care in America Post by toader on Mar 29th, 2004, 3:23pm bastage ;;D hey, JK - I'm so happy you are finally PF!! I'm on Dopey and now Depakote and other gunk ta boot |
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Title: Re: The joke that is health care in America Post by Edski_1 on Mar 29th, 2004, 4:00pm It's close... Getting shadows for a day or so every 10 days or so. Today had a little bit. I expect I'll have some tomorrow, as I have a job interview. Seems that stress now is a trigger for some shadows... :-/ Who woulda thunk that being unemployed for 10 weeks would have been stressful? But shityeah, topmax has been wonderful to me, even if I think it's messed my mind up a bit. So do CH's... >:( |
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Title: Re: The joke that is health care in America Post by t_h_b on Mar 29th, 2004, 5:48pm Jonny and some others swear by verapamil + lithium. Certainly that's worth a try. |
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Title: Re: The joke that is health care in America Post by t_h_b on Mar 29th, 2004, 5:50pm on 03/29/04 at 09:03:35, Edski_1 wrote:
Edski, out of curiosity, do you remember where you read that? Joe, you might print out the article Edski mentioned and take it to your GP. (I've got that one in my "cluster library".) You might also try printing out the recommentations at www.bnf.org. |
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Title: Re: The joke that is health care in America Post by 9erfan on Mar 29th, 2004, 6:07pm Joe, Did I mis-read your post or did you say you're only on 5 lpm of O2?? You need to get that up to a minimum of 10 lpm (I've got mine at the highest setting, 15lpm). If you have to, get a different regulator that goes higher. I don't think you're going to get relief at 5. Just my .02 cents. Good luck, Virginia |
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Title: Re: The joke that is health care in America Post by Lizzie2 on Mar 29th, 2004, 6:32pm You have E tanks right Joe? If you do a little searching around, I bet you can find a decently priced regulator that goes high enough if your insurance or doc won't let you get one. I got my 2nd regulator for free by checking into some things. I needed one for the system at home and one for the system here at school. The one I got for free is better than the one the insurance provided, so I now have them both at school! hehe Like Ginny (9erfan), I always have mine set at 15lpm, too. Hang in there!! Lizzie |
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Title: Re: The joke that is health care in America Post by brewcrew on Mar 29th, 2004, 7:54pm Edski - The notion that mixing triptans should never be done is a myth - and one that is subscribed to by a lot of doctors. It should be done judiciously, but it can be done. I take Amerge and Maxalt together quite often, with the blessing of my neuro (who is brilliant). Bill |
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Title: Re: The joke that is health care in America Post by PittsburghJoe on Mar 29th, 2004, 7:56pm Gin & Liz, Yeah, I have an O2 concentrator that goes to 5 liters, and an e-tank (now nearly empty) with a regulator up to 8 liters, both with cannulas. I can't find a nonrebreather mask here in Pittsburgh to save my life, though I do have one place I can check out tomorrow for both a regulator and a mask. Frickin' PCP never did call me back today, so I'm kinda pissed about that. He's probably tired of me calling him daily and acting like I know more about clusters than he does (which I do). I want injections, dammit! I have a job interview tomorrow morning (hoping for a PF night, or at least maybe only one small attack), but afterward I may shop around for a new neuro too. There are a couple listed in town on the OUCH website, so I can check them out and see if maybe I can get in this week. Thanks for the good advice and kind words from everyone... Joe |
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Title: Re: The joke that is health care in America Post by t_h_b on Mar 29th, 2004, 8:04pm Gotta have 12 to 15 liters per minute. 10 at least. |
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Title: Re: The joke that is health care in America Post by Not4Hire on Mar 29th, 2004, 9:22pm Hey joe (where ya goin' with that 'trex in your hand?) I'm hoping you have pushed the o2 button at LEFT side of Board? ... it specifically says the nose thingie SUX...... it also says that to be effective, ya need at LEAST 8 LPM and preferably 10-12-15 to be effective----and with a NONREBREATHER mask. Which can be ordered ONLINE fer CHEAP. And if ya wanna wait fer INfuckingSURANCE to make ya feel better, maybe ya should re-think how bad it HURTS. Is the Pittsburgh you refer to .....in possibly Idon'tunnerstan, or BFEgypt....or just Pennsylvania (where MrHappy lives and pollutes the GenePool?).....heh Quote:
Thanks for the plug for OUCH (you ARE a member, Right?) and please take this in the spirit it is given.... ya HURT.. yer not ALONE.... and I hope ya find relief SOON.... best....Steve(N4H) |
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Title: Re: The joke that is health care in America Post by Superpain on Mar 29th, 2004, 10:44pm My doc today told me that the mask is not necessary. He said it doesn't matter how you do it as long as you are able to take big deep breaths quickly. The hose works just fine, but it is nice to be able to pull it through your nose. I'm just too damn stingy with the O2... I don't like the thought of it escaping the mask! I just turn the valve on and off each hit to conserve as much as possible. I've ran out a couple times now and that fucking sux! |
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Title: Re: The joke that is health care in America Post by PittsburghJoe on Mar 29th, 2004, 10:52pm Oh, I know all about nonrebreathers and flow rates, hell I'm certified to administer emergency oxygen. The problem was that my O2 prescription states 4 LPM via cannula, even though I told the doc specifically that I needed at least 10 LPM and a nonrebreather mask. I'm thinking it may be time to find a new doc, though I'd rather take the time to educate this one. I'm just treading the fine line between informed patient and pain in his ass. ;;D So anyway, I'm gonna have to get my own regulator and mask. That way I'll be prepared for this and future bouts. Now I just have to order a refill on my e-tank. Joe |
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Title: Re: The joke that is health care in America Post by FZfan on Mar 29th, 2004, 10:55pm Geez, Joe, even out here in little ol' middle america I've got two med supply stores within 3 miles that I can grab a $5 non-rebreather mask at. Now the high flow reg, those are mucho more expensive at places like that. I paid $120 for mine, but then, I'm no bargain hunter. |
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