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Title: To my CH Family Post by Ray on Sep 1st, 2007, 2:18pm My RANT: I’ve been working to get a new demand valve oxygen rig since early June. The Doctor was the easy part. It took about 2 weeks to get the override from the insurance company. It took the durable medical goods company about a month to research this and have it signed off through the president of the company. The order was placed over 2 weeks ago, only…. I’ve been calling them every 3 days or so for an update on the order status. Yesterday, I forced the issue, checked with purchasing department and the supplier has NO RECORD of the order. They placed the order again, yesterday. Now, because of the holiday weekend, it is now expected to arrive at the local office on Thursday, September 6th. In the meanwhile, I have about 4 half doses of Imitrex left, I can get another box on Monday, and I am having hits about 4-6 hours apart, 24 hours a day. Can you say exhausted? I know that there are others who are living in their own personal hell right now, and mine is not worse than theirs. Stress and desperation is growing with each CH. I called my neuro on Friday, and his secretary said he would call back. That didn’t happen. I called the durable medical goods company on Friday to have any oxygen delivered, hell I’ll suck it out without having my preferred rig, but the respiratory person did not call me back. By sharing this, I hope you don’t think of me as a whiner, but something to share with my CH family. I appreciate you all and pray that you’re all having a better time than me! Ray [smiley=hammer.gif] |
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Title: Re: To my CH Family Post by DennisM1045 on Sep 1st, 2007, 2:25pm No worries Ray. Rant away. That's what we're here for. To listen, to learn and hopefully to help each other out once in a while. Unfortuantely I don't have much to offer other than ((((((VIBES))))))) and prayers. I hope this all gets sorted out soon. What are you using to abort/prevent now? You've been around the treatment block a lot longer than I but maybe by sharing we can offer some suggestions to help get you throught. Anyway, I hope the beast and the system both give you a break soon. -Dennis- |
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Title: Re: To my CH Family Post by sandie99 on Sep 1st, 2007, 2:26pm Ray, I hear a fellow member of my ch family sharing honestly how his life is right now. [smiley=hug.gif] For me, that is not whining. After all, if you cannot share ch- related things in here, where can you? Vibes for PF time & quick solution are on their way! Hugs, Sanna |
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Title: Re: To my CH Family Post by Ray on Sep 1st, 2007, 3:36pm on 09/01/07 at 14:25:41, DennisM1045 wrote:
Unfortunately, none of the prevents have worked. I have tried so many, alone and in combination. I have not used Topomax, nor Neurontin, but everything else. I am on an antidepressant, Cymbalta that acts as an SSRI (SSNRI), but more as an antidepressant than a prevent. I use coffee and Taurine/Caffeine energy drinks to chase shadows, but they don't work as an abort for a hit. My recent neuro appointment, first in years, to verify that I'm duing all that might help. Just being able to voice the frustration and desperation is theraputic for me. I love you guys, Ray |
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Title: Re: To my CH Family Post by DennisM1045 on Sep 1st, 2007, 3:48pm No O2 or Imitrex to abort? How do you abort an attack now? I went the Neurontin route. I coudn't take the fuzziness and had to stop taking it. Almost killed the wife and kids pulling out into traffic without looking. I'm not saying don't try it. But if you do, please be careful. We don't want you ending up like Chuck ;;D -Dennis- |
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Title: Re: To my CH Family Post by Ray on Sep 1st, 2007, 5:57pm on 09/01/07 at 15:48:21, DennisM1045 wrote:
Dennis: I answered these in my rant, but... O2 is on [incredibly long] order, but not received. Imitrex is the only way I have to abort, and I'm running out prior to my next refill date, of Monday, Labor day. Kids are grouching around me due to house cleaning duties, I'm irritable since I'm getting hit so much, and I don't want anything to seem like I'm grouching at the people who are listening to me and trying to help... Oh Lord, help me through these times, let me rest in the shadow of Your wings, and please bring the peace that passes all understanding. In the name of my messiah, Yeshua (Jesus), AMEN! PF wishes for you all, Ray |
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Title: Re: To my CH Family Post by Rosybabe on Sep 1st, 2007, 6:58pm Ray <<<<<<<<pain free vibes>>>>>>>> |
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Title: Re: To my CH Family Post by LindsayLoo on Sep 1st, 2007, 7:43pm My thoughts and prayers are out to you! *Hugs* Lindsay |
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Title: Re: To my CH Family Post by Charlie on Sep 1st, 2007, 9:44pm You're a clusterhead and whine we do not. Rant away. It's out thing. Meanwhile work on this again: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments. I have had about a 75% success rate at least shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Good luck Ray. |
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Title: Re: To my CH Family Post by cash5542 on Sep 1st, 2007, 10:03pm So sorry to hear about your o2 problems and frequent hits. My favorite phrase is "and this too shall pass" Hugs and prayers to you and your family! Everyone is in this together! Charlotte |
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Title: Re: To my CH Family Post by Ray on Sep 1st, 2007, 10:43pm Thank you everyone! Charlie, I was taught this method while being treated by Dr. Seymour Diamond in Chicago. I was very good at it. The idea being if you dialate the blood vessels in your hands and feet, there is less blood volume in the cranial vessels. Although this helps some cluster heads, it seems to be a better technique for migraineurs, and does not seem to help me. I learned both to raise the temperature of my fingers and galvanic skin response via biofeedback. It was a worthy suggestion and I am glad that it helps you. Again, I love my cluster family! Ray |
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Title: Re: To my CH Family Post by ClusterChuck on Sep 2nd, 2007, 1:23am Ray, as I said on the phone, I am SO sorry you are going through this. NONE of us need this sort of crap, on top of the hits, themselves! BUT, remember, you are a clusterhead! Clusterheads are tough SOB's! NEVER ever let the beast get the best of you! All of us have gone "commando" at one point or other in our battle with the beast. It is NOT fun, but all of us have survived it. You will too. Until you get the weapons you need, I am sending out my prayers to you. Hang in there, my friend. Remember, you have my phone number. Don't be afraid to use it, any time. Chuck |
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Title: Re: To my CH Family Post by Ray on Sep 2nd, 2007, 4:59am Chuck, Thank you for your kind words. I'm up again with a hit and using my trex to abort. I've left a message with the oxygen supplier's answering service. They're gonna call me around 12 noon today. I will get O2 from them come hell or high water this afternoon. If that doesn't work, I will be stopping by the local fire station and stating my case. Not that you're coming in second, but I talked with Tony and he's given me some excellent suggestions. I have both of your numbers and I'm not too proud to use them. I'm getting up in 2 1/2 hours to get ready for church. Got 2 extra teenage girls sleeping over who want to go -- One comes from an athiest household. It is kinda my christian duty to bring her to church. I believe it will be her first regular service. I've been bringing her to "youth group" for a few months now. For the chance to be a part of her "salvation", I guess this discomfort will be worth it. I really love my cluster family, you guys are the best! Ray |
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Title: Re: To my CH Family Post by DennisM1045 on Sep 2nd, 2007, 10:49am I hope they come through for you Ray. Good luck with church and the family this morning. Hang tough. -Dennis- |
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Title: Re: To my CH Family Post by Ray on Sep 2nd, 2007, 12:59pm Thank you again! I brought the kids to church, one of whom is an athiest. Perhaps seeds were sewn. I spoke to the on call person at the O2 company. I am awaiting a call back once it is [hopefully] approved by higher ups. More to follow when I know it... Ray |
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Title: Re: To my CH Family Post by Ray on Sep 2nd, 2007, 3:45pm First, the GOOD news - I have 2 full "M" tanks to tide me over using one of those cheezey non rebreather masks. The bad news is that the doctor's office never called in my refill of Imitrex, so I've called the answering service and waiting for the ON-CALL to call me back and ask that they refill the RX for injectable Imitrex. If all else fails, I got the O2 and I'm still happy! You guys are great! Ray |
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Title: Re: To my CH Family Post by LeLimey on Sep 2nd, 2007, 5:27pm Oh Ray (((HUG))) Im so pleased for you! O2 rocks! lots and lots of love Helen xxx |
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Title: Re: To my CH Family Post by ShariRae on Sep 2nd, 2007, 11:39pm I am so glad to hear that you got your O2...I am sure that you will be back to feeling better in no time..in the mean time..just know we are here and open 24hrs a day! You are in my thoughts and prayers. Much Love Shari |
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