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Title: newbie getting started Post by unclejake127 on Sep 10th, 2005, 11:01pm i just found this site two days and 4 ch ago what a way to start telling about myself i'm from florida the state with luckily only 2 seasons it all started about 30 years ago not bad at first but the last 10 yrs i've had 3 sinus operation by 3 different doctors and none of them knew anything the doc i'm seeing now got me on prednisone started 40mg now 80mg aday am topamax started 25mg now100mg aday pm for the pain i started with the pill form of imitrex that didnt work then the nasal spray that takes to long and now the injection that seems to work pretty good i started this new doc 30 aug 05 and had 16 ch i don't know if the meds are working he's doubled the meds since i started with him before the meds i only had 1ch aday now i'm having 2 or somrtimes 3 i see him again on the 15 sept 05 any advice will help jim |
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Title: Re: newbie getting started Post by jcmquix on Sep 10th, 2005, 11:31pm Hi Jim... Welcome to the site, sorry you had to find us this way, but its nice to meet you... Well #1 if you are using the TREX inj, try the tip to the left, alot of the user's of TREX inj here find that they get the same results from a small amout of the TREX inj also with the tip to the left, you will not exceed the 12mg a day.... Also check out the tip to the left on the O2, I got it in the middle of this cycle and the O2 cut my TREX use alot, I got to where I was only using the TREX once a day, at my 1am hit... The O2 usually works in about 10 minutes for me.. just got to push your Dr really hard for it... even print out the information and take it to him. If you are getting the night time hit, you may want to ask your Dr about trying the Melatonin.... I started that also in the middle of this cycle at the advice of a few of the Veterans here.. it cut my hits to almost nothing at night.... Its available OTC... you can get it in the Health Food Section of any Major Store... Get the 3mg pills... I take the Melatonin (9mg) 3 pills about 30 minutes before bed time and I can usually sleep through the entire night, if I do get a hit, its usuall pretty light.... It take about 3 or 4 days to get into you system and start working, I'd say if your getting the night time hits, give it a try... its cheep... Other than that I am sure someone who is good with the Meds will be along soon to ask a few questions... I suggest that you Read, Read and Read more. This site has the collection of many of Hundereds of years of experience of dealing with CH.... The Support System here is Great, if you need to Rant, Rave or just need someone to talk to.. the lights are always on here 24/7/365.... Pain Free Days to YOU !!! God Bless Charlie |
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Title: Re: newbie getting started Post by unsolved1 on Sep 11th, 2005, 6:59pm Hi Jim ! Welcome to the message board. Read, read, read !! Ask questions !! Someone's here 24/7 ! UNsolved |
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Title: Re: newbie getting started Post by marlinsfan on Sep 12th, 2005, 7:31am Hi Jim, I too am in Florida (Hollywood). Print this document and take it to your doctor: http://www.brightok.net/~mnjday/chtherapy.pdf Also, make sure you listen to jcmquix and get on that O2. It's the best abortive from my perspective. I too take melatonin at night. I started with 6 mg, but that didn't do much, so I switched to 9 and I had great results. Where in FLA are you? If you want to try a good neuro in HLW, PM me and I'll send you my doc's info. He's knowledgeable about CH. |
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Title: Re: newbie getting started Post by unclejake127 on Sep 13th, 2005, 3:24pm hey marlinsfan i'm from the cocoa area a little north of u i've started the O2 i'm not sure if it works when the beast starts only imitrex or the cycle stops it the doc i'm seeing is from port orange i'm also doing the water during the day holy shit i havn't pissed so much in my life lol got to go talk to u later jim |
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Title: Re: newbie getting started Post by Margi on Sep 13th, 2005, 3:35pm Hi Jim, Sorry to hear you're having a rough time. You're on 80 mgs of pred AND 10 mgs of topomax?? Wow. So are you feeling pretty frustrated, angry and stupid all at the same time (respective side effects of both meds, unfortunately). I'm not sure I've ever heard of combining the two. Are you going to start tapering off the prednisone soon? Nasty stuff. Just a word of caution if you are following the water treatment. Please talk to your doctor about this, ok? The water treatment works best if you are med free. With the water treatment, you have to drink a LOT of water - so much so that you might be diluting any good that the pred or topomax are doing for you. Please do talk to doc, ok? Keep us posted, Jim, and keep trying the oxygen. Sometimes you need to experiment to find the right flow rate (you ARE using a non-rebreather mask, right?). |
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Title: Re: newbie getting started Post by Kris_in_SJ on Sep 13th, 2005, 7:44pm Hi, and welcome to the family. Please follow marlinsfan's link - it saved my life last cycle. On another note ... could you maybe use some punctuation in your posts? I'm a communications person and probably more than a little anal when it comes to writing, but I find it hard to follow your text. No periods or commas or anything. Totally off the subject, but want to help ... Kris |
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