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Title: Is cycle ending this time? Post by marlinsfan on Jul 11th, 2005, 8:47pm I posted a thread a few weeks ago asking if my cycle was ending, and it wasn't. Here I am again with the same question. I guess I'm hopeful! Last 8 nights have been pain free, only with occasional kip 1 and 2 shadows. Here's what I've tracked: Back surgery on April 21, Took Vicadin on 4/21 thru 4/24 Travel to Phoenix on 4/25 return 4/26 First cluster on April 26 pm, nighly clusters (2 to 3 per night) untl 6/18 Saw Dr. Schou (the doc that operated my back) on 5/18 Took Topamax 5/18 to 5/20, made clusters worse, stopped on 5/20 Found website on 5/28, registered 5/30, changed diet on 5/29 Saw Dr. Maniar (neuro) on 5/31, dx Cluster Started Prednisone taper on 6/1 for 7 days, Started O2 on 6/6 Started Melatonin on 6/12 PF nights on 6/18-6/20 Pain on 6/21-6/22 PF nights 6/23-6/24 Pain on 6/25 PF nights on 6/26, 6/27 Pain on 6/28 PF nights on 6/29, 6/30 Pain on 7/1, 7/2 PF nights 7/3, 7/4, 7/5, 7/6, 7/7, 7/8, 7/9, 7/10 (kip 1 and 2 shadows only). Note: all days with PAIN next to them have been while sleeping. Since started melatonin, I've only had 1 HA per night on those nights, only 2 or 3 nights I had 2. I'm in Phoenix again this week, been here since saturday, going home on Friday. Got O2 delivered to my hotel, but haven't used it. Is there a pattern? Is my cycle ending? I know it's not over because of the shadows. Can anyone make anything of this?? Thanks and PF wishes to all!! Jose |
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Title: Re: Is cycle ending this time? Post by unsolved1 on Jul 11th, 2005, 9:12pm glad to hear you're getting some PF time. If there's one thing the beast is good at, it's being unpredictable. He'll come when HE wants to! Unsolved Hopefully this is the end of your cycle! ;) |
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Title: Re: Is cycle ending this time? Post by burnt-toast on Jul 11th, 2005, 10:16pm Good luck - hope you're getting a long term break. Tom |
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Title: Re: Is cycle ending this time? Post by Sunil Gururaj on Jul 12th, 2005, 5:11am One week of PF sounds good.. But as unsolved1 says, Quote:
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Title: Re: Is cycle ending this time? Post by Chillrmn1 on Jul 12th, 2005, 6:18am The "Beast" is a frustrating monster. Looks like it might be letting up for you but you never know for sure until it's gone. Hope you're starting to go into remission and wishing you the best. |
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Title: Re: Is cycle ending this time? Post by Topical on Jul 12th, 2005, 6:52am I use verapamil not melatonin. Here is what I do... No headaches/shadows for two full weeks while at full medication. Ramp down medication to 1/2. Still no headaches/shadows for two full weeks. Ramp down to no medication. Keep getting your sleep, taking the meds and don't drink alcohol. The smart thing would be to let your doctor know before you do any changes to your medications. The reason why I wait two weeks at 1/2 dosage is that I can get a return of the headaches and it will let me up the dosage rapidly. It's like walking on thin ice. |
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Title: Re: Is cycle ending this time? Post by don on Jul 12th, 2005, 7:24am You need to be taking a preventative along with the pred. |
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Title: Re: Is cycle ending this time? Post by lionsound on Jul 12th, 2005, 8:09am Jose..that fantastic!!! :) there's no way to know for sure ...... I hope it is ending for you and even more PF time comes your way! Enjoy! be well, lionsound |
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Title: Re: Is cycle ending this time? Post by marlinsfan on Jul 12th, 2005, 9:49am Thanks everyone for posting. I'm not taking a preventative because the neuro thought I was ending my cycle and would not need it. I never asked him for it because I started to take the melatonin and it did cut down on the number of attacks per night, so I believed too that it was ending.... I'm adding 7/11 to the PF nights. Jose |
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Title: Re: Is cycle ending this time? Post by marlinsfan on Jul 13th, 2005, 8:39pm I will NEVER post this subject/question again. :-/ I should've learned the first time, but I am a newbie. Old sufferer, but newbie in terms of knowledge. The beast was indeede VERY unpredictable. Although I had another PF night last night (99% of my hits come while sleeping), the beast hit me HARD at 2 pm today. I'm in Phoenix, in a conference at a hotel. We're having record breaking heat here, and my room is a 10 minute walk from the conference room. Luckily as I stumbled out of the center, a staff member was there with a housekeeping golf cart, and she brought me quickly to my room. My best friend Mr. O2 was waiting for me and beat the beast out of my head. I'm pretty sure the trigger was the parmesan cheese in my Ceasar salad that I had for lunch, but maybe some of it was due to the intense heat. My own fault. I appreciate the people who wished my cycle ended, and I really appreciate the majority of people who refrained from telling me that I was just being optimistic. I can't read minds, but I feel like I know you all enough to know that is what you were thinking. Enjoy Dallas. I wish I could be there. I'm actually flying through Dallas on Friday on my way back to Ft Lauderdale, but I can't change the connection. Anything over a 4 hour layover is considered a stop, and it's WAY TOO MUCH MONEY! PF Wishes to ALL!! Jose |
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Title: Re: Is cycle ending this time? Post by burnt-toast on Jul 13th, 2005, 8:53pm Don't feel too alone - each year I pray that the short break I sometimes get this time of year will finally materialize. 2 years have now turned into into three and it doesn't look hopeful going into a forth year. A couple of weeks back I posted that I thought I was going to get a break because the attacks has slowed - so-far my mistake. Got an appointment with my neuro tomorrow - let's see if he's got any new ideas. I just want a break - no-need a break. I guess we all do. Hang in there-still hoping ya' get a break from this nightmare. Tom |
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