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Title: 6 nights PF !!! :) Post by jcmquix on Jul 18th, 2005, 6:51am Hi all.. Well I a happay to announce that I have been PF for 6 nights now. Its a brake that I needed. I am still doing the same meds: Depakote ER 1000mg (a day) Melatonion 12mg Benedryol 50mg Hott Shower about 9pm I am going in for blood work again this Friday, to make sure that the levels of the Depakot ER in my systems is still safe. I go back to the Nero Dr on 8/1, so I will find out how long to keep taking the Depakote ER. I am just amazised, usually my cycle last until the end of August, but I am thankful for either the end or even a brake in this cycle. PFDAN to ALL !!! |
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Title: Re: 6 nights PF !!! :) Post by burnt-toast on Jul 18th, 2005, 7:22am That's great news! Glad to see yer' getting the blood work done as well. Keep up the good work - may your remission last indefinately. Tom |
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Title: Re: 6 nights PF !!! :) Post by Topical on Jul 19th, 2005, 4:09am Good to hear! I second that hoping this is it for you....permanently! I got hit after 4 days PF by a HA in the middle of my sleep. I woke up and was sort of confused not realizing it was still ramping up. It took me about a minute to realize what was happening. I must have been in some DEEP REM. Five minutes on the O2 and then back to sleep. PF is beautiful. Enjoy! |
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Title: Re: 6 nights PF !!! :) Post by E-Double on Jul 19th, 2005, 11:11am ;;D |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 19th, 2005, 12:55pm Well I did enjoy the last 6 days PF, I am sad to admit that the BEAST showed his ugly head last night at 1am, but it was not to bad. I just rode it out and fell back to sleep, but I woke this am with a heavy head. I can attribute it to several things: #1 It was late last night when I got to bed, so I did not take the Melatonin 12mg & Benadryl 50mg. #2 Me & the Wife are trying to get a deal done so that I can get a new 2005 F-150 P-up. Dealing with these people is enough stress all by its self. #3 Lots of things going on with Family & Friends, we just have alot of stress, I am just glad I have a STRONG Wife & Marriage. (A good woman who puts up with me :) ) So I am going to start the Melatonin & Benadryl again tonight, Still taking the Depakote ER 1000mg a day. I do not know how simple it is to forget meds when they are working for you, but when the BEAST shows his face, you remember really fast what you forgot. I am glad to see that all had a good time at the convention & safe trips back home, I really want to go to the next one. Thanks for all the support !!!! PFDAN's to ALL !!! |
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Title: Re: 6 nights PF !!! :) Post by Kiwiinoz58 on Jul 19th, 2005, 6:05pm Geeze mate sorry to hear it came back. I guess when we do get a few PF days we live in hope that the sods have gone for good. I had 9 Pf's till last Friday and lived in hope too. They are worse than ever now and I'm still trying to get the O2. Glad to hear you have a great wife, my partner is terrific too, but remember the meds, the meds, the meds!! :D Cheers, Jacqs |
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Title: Re: 6 nights PF !!! :) Post by E-Double on Jul 19th, 2005, 6:26pm stay consistent! |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 25th, 2005, 8:24am Hi All ... Sorry I have been away for a few days, had a family ordeal to deal with, had no puter. I am still doing pretty good with being PF, I still get a few shadows about 2-3 times a day, but nothing like the CH HA's that I was getting before. I have stayed on these meds: Depakote ER 1000mg (a day) Melatonion 9-12mg (If I can sleep in I do 12mg) Benedryol 50mg Hott Shower about 9pm I did my blood work on 7/22, to check the Depakota levels in my body, all is well.. so far.. I am just going to use this PF time to stock up on the meds, history has always taught me that the BEAST will find his way back at the usual times every year... someday, maybe he will lose his blackbook and forget to visit everyone.. Well kicking his A** at the moment... Fight the Good Fight PFDAN's to All !!! |
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Title: Re: 6 nights PF !!! :) Post by E-Double on Jul 25th, 2005, 8:28am Happy for ya Charlie!!!!!!!! Stay consistent and enjoy :) |
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Title: Re: 6 nights PF !!! :) Post by BobG on Jul 25th, 2005, 6:14pm on 07/25/05 at 08:24:35, jcmquix wrote:
Happy to hear the good news. Sorry about the family stuff. But, have to ask........ Did ya get the truck? :D |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 26th, 2005, 5:52am on 07/25/05 at 18:14:34, BobG wrote:
Well the FORD boys SCREWED me around and tried to pull this 15% on the interest... So I went to a used Truck lot near the house and got this beauty for $16,500. 2003 RAM 1500, 4.7L Magnam V-8, Fully Loaded, 30,000 miles... Like New, Drives like a Dream... I am a Happy Camper.. http://storage.msn.com/x1pxOYwqu4SjF5iohZHoAAhedPNC-fbvhopgMimcugLv05MqMlfdF-CXd3B0GkO13PUGQKpxSdRKDVC76o7q6TGDV-x1dVgnsLZYBM_RUgK3YsYSxpWGJgmgRgaOnND_t3RLg1mTdPjVelxkEI553uRMQ Thanks for Asking... :) Besides it looks good in the drive-way next to the DURANGO.. :) (My wife's Baby) http://storage.msn.com/x1pxOYwqu4SjF5iohZHoAAhedPNC-fbvhopgMimcugLv05AYfd4cDFn0o3ieWaZ6iAq9UtWVTrn84oNbWAfiee2VS3uGbXSqRt1AwPNkPTyvLS7gTh_8V2S2MGMmVn8V9K5b6ZCqlvHBxDAYTQBznmE0A Hmmm ... Guess I'm a MOPAR guy now... :) PFDAN's to ALL !!! |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 26th, 2005, 4:14pm Hi All... Finally got a few minutes alone, with no one in my office. Well I got the Usual visits from that Damn BEAST last night, They were at the usual times 1am & 3am. Had sorta a rough day on monday dealing with the Ins Comp, the Dr & the Pharmacy. (over the TREX inj). I used a shot at 1am (TREX inj 2mg) it was a bad one for some reason.. I do not know why (STRESS), took the usual meds and got to bed at a good time.. Then the Beast showed his head again about 3am, this time I was detimined to use the O2 and I had good luck. I could just tell that the hit was not going to be too hard, so I turned on the O2 and kinda dosed off for about 15 min, and the HA was gone... Still feeling like I have a LEAD WEIGHT on my head today, but its going away a little... I'm gonna hit the O2 when I get home from work & relax. I see the Dr again on monday, so I'll see what she has to say. I just do not want to go up on the Depakota ER, starting to kinda feel like a Mental Roller Coaster, hard to explain, I just look at things differently... ??? .... ???? ::) :P ::) :P PFDAN's to ALL !!! |
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Title: Re: 6 nights PF !!! :) Post by E-Double on Jul 26th, 2005, 5:22pm Getting that spacey feeling???? mmmm good old depakote. Ya know if you "feel" like it is working great........if not there are other meds that probably would not make ya feel dopey. Good luck and keep staying positive. Inspiring dude!!! |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 27th, 2005, 8:13am Hi All.. Well I am sad to announce that I think I have my nightly visitor back.. I got hit again last night at 1am & 3am, I really do not know if I am doing anything wrong, or if the BEAST is just changing up and getting used to the meds I am taking. I know its SUCKS to be losing the sleep again and the HEAVY HEAD the next day. I am just glad that I go back to the Dr on Monday. I thought that I had the problem solved for the TREX inj vials, but I now find out that its another long story. I called GSK yesterday, they are going to assign me a case manager and see what they can work out for me to get more TREX inj, through the Ins Comp, The Dr & The Pharmacy. The lady there told me that they understand that CH suffer's need more TREX and usually they can get an increase through My DR & Ins Comp. I'll post the outcome. I am starting to believe in the relaxing thing, brings on the BEAST (to a point). Just seems that on some better days, I get really bad night time attacks. I dunno.... just BUMMED to have this BEAST back again KICKING in my head in the AM hours... :( Fight the Good Fight !!! PFDAN's to ALL!!! |
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Title: Re: 6 nights PF !!! :) Post by wip5150 on Jul 27th, 2005, 10:10am Sorry to hear our "friend" is back. Keep your spirits up my friend!! |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 29th, 2005, 7:25am Hi all ... Just wanted to say Thanks again for the warm Welcome for my wife (Sassy_Lady - Jolene). I know this is extreamly hard for her to still understand the BEAST, as well as me. But with the help of everyone here I think she is starting to understand: We do not have to give into this BEAST and that I do have GOOD DAYS. As for the hits, its been like a Roller Coaster ride, this is the most different cycle that I have ever had. I have 2 or 3 GOOD days, then 2 or 3 BAD days. On the BAD days I get Shadows all over the Kip scale during the day, then I get hard hits at 1am & 3am. I don't know weather its the meds or just this cycle. I think this is the hardest part on my whole family, but we will get through. I am just going to stick with the meds I am curremtly taking: Depakota 1000mg a day Melatonin 9-12mg 30 min before bed (12mg when I can sleep in) Benadryl 50mg 30 before bed O2 to Abort the light hits TREX inj to about the FAST & HARD hits Atleast till I see the Dr on Monday. I am still holding hope that this cycle will end about the end of August. Fightin the Good Fight PFDAN's to ALL !!!! |
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Title: Re: 6 nights PF !!! :) Post by nani on Jul 29th, 2005, 8:52am Hang in there, Charlie. [smiley=hug.gif] pf wishes, nani |
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Title: Re: 6 nights PF !!! :) Post by lionsound on Jul 29th, 2005, 11:00am on 07/29/05 at 07:25:57, jcmquix wrote:
Yes, you sure are! :) -lionsound |
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Title: Re: 6 nights PF !!! :) Post by sassy_lady on Jul 29th, 2005, 6:08pm we went to walmart today & we walked into the garden area, the smells of all the stuff they had in there got to Charlie instintly, we had to walk right back out, he turned white, his one eye turned red instintly nose started running, & I got scared. but as soon as we got out of there, it took a couple of mins. but then he was fine, thought I was going to have to pick him up off the floor!! even he said that he felt he was going to hit the floor, little things do set his CH;S off, din't realize until today how bad the can be trigger. think about having him ask his Dr. for a small 02 for him to carry with him, after today think I will have him do that!!! jolene |
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Title: Re: 6 nights PF !!! :) Post by E-Double on Jul 29th, 2005, 8:49pm Be his voice! My wife advocated for me when I was in the stage of just accepting whatever a doctor said I should do. I wouldn't fight hard enough. Go you!!!! "D" tanks can fit in a backpack so he can bring it around to work or keep in car......I have several of them. I call them my girlfriends ;;D Though my wife doesn't seem to mind ;) |
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Title: Re: 6 nights PF !!! :) Post by jcmquix on Jul 30th, 2005, 9:40am Hi All.. Thanks E for the tip. I will look into it. I have just decided to purchase my home set-up, so once I get that one paid-off I will ask the lady at the O2 store, they have it all and she said I can pick what ever I want with the script I have.. (Thank God). I am going to ask the Dr about the different things that are Triggering my hits also, as I told you (Eric) I have been really sensitive to alot of things... Don't think I am flipping out but here they are: When its really quit in the house, I swear I can almost hear the cat's walking across the floor (Hearing) I can smell smells that I never noticed before (Smell) At certain times light just seems to BLAST my eyes (Sight) My sense of touch, things feel colder & hotter, expecially water & the Sun light, I have to be careful in the shower, the water gets hott fast. (Touch) I do not know if its the TREX or the Depakota ER, I am starting to lean toward the TREX, cause its been 2 days since I had to use any TREX and I am feeling SOLID again. I don't really know I have to discuss this one with the Dr. As for the HA's, well I took the usual meds last night, but I stepped the Melatonin up to 12mg last night, I got 2 hits, but they were light (I think I was groggy from the Melatonin). They still came at 1am & 3am, but I just sat up and rubbed my neck & head and just dosed back to sleep sitting up... But the most important thing I got the sleep that I needed, when I get sleep I can Fight the Good Fight all day long.. :) PFDAN's to ALL !!! LOVE you Guys.. Charlie |
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Title: Re: 6 nights PF !!! :) Post by E-Double on Jul 30th, 2005, 9:50am Hoping you find that perfect cocktail...if there is such a thing ;) Good luck my friend! |
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Title: Re: 6 nights PF !!! :) Post by headstrong on Jul 30th, 2005, 5:00pm I have always noticed the sensitivity to my eyes, not so much the hearing or smell. I am in the middle of a bout right now and have noticed in the past couple of weeks that I can hardley stand to take a shower because the water hurts- always to hot or to cold. Never noticed before or related it until now. Hu! I am not on meds so must just be a CH symptom. |
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Title: Re: 6 nights PF !!! :) Post by kayarr on Sep 7th, 2005, 10:47am on 07/26/05 at 16:14:09, jcmquix wrote:
My guy has said that there is a hangover type heaviness to Imitrex. That was the reason he didn't want to use it all of the time. It fogged up the PF parts of his day. |
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Title: Re: 6 nights PF !!! :) Post by rextangle on Sep 7th, 2005, 1:30pm Hey Charlie, hang in there... may the PF days come back soon. We're on the same schedule it seems like. Odd numbers??? 1am, 3 am, etc... My first CH can start at nine and the last can be as late/early as 7am.... but the 3am is always the big mofo!! Hope you regain control soon. Cheers, Rex |
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Title: Re: 6 nights PF !!! :) Post by kayarr on Sep 8th, 2005, 12:07am on 07/29/05 at 18:08:18, sassy_lady wrote:
Oxygen......never leave home without it:) (even for a trip to the store:( |
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