ljoeb Posted April 4, 2008 Report Share Posted April 4, 2008 Well I started Florinef a week ago Monday and started the 2000mg/meal sodium plan my doctor suggested (I have a great document that lists high sodium foods with their sodium content if anyone is interested--just let me know). After "reading up" on the medication on this site, I called and asked my doctor if I could start at .05mg instead of .1mg he had initially prescribed. Well the first couple of days I felt really weird but by Thursday, it was like the sun came out after a year and a half of overcast and stormy skies! My eyebrows became "unknit," and I actually had some expression and life in my face (this was the first thing my wife noticed) instead of the usual "dazed, confussed and pained" look I normally walked around with. Amazingly, other than a massive pre-syncopal spell upon standing up at the end of a church service on Sunday (www.lifechurch.tv for anyone interested), I have had one week of clear headed, non-fatiqued, snap in my step living. But I am always in a "waiting" mode for the roof to cave in again!!! The doctor wanted me to increase to .1mg after a week at .05 and I tried, but after two days of 150/100 blood pressure, I dropped back to .05mg for now. I see him next week, and I am going to see if he'll just let me stay at this level as long as I'm feeling good... knock on wood!!! Quote Link to comment Share on other sites More sharing options...
mrsdavidson8605 Posted April 5, 2008 Report Share Posted April 5, 2008 Well I started Florinef a week ago Monday and started the 2000mg/meal sodium plan my doctor suggested (I have a great document that lists high sodium foods with their sodium content if anyone is interested--just let me know). After "reading up" on the medication on this site, I called and asked my doctor if I could start at .05mg instead of .1mg he had initially prescribed. Well the first couple of days I felt really weird but by Thursday, it was like the sun came out after a year and a half of overcast and stormy skies! My eyebrows became "unknit," and I actually had some expression and life in my face (this was the first thing my wife noticed) instead of the usual "dazed, confussed and pained" look I normally walked around with. Amazingly, other than a massive pre-syncopal spell upon standing up at the end of a church service on Sunday (www.lifechurch.tv for anyone interested), I have had one week of clear headed, non-fatiqued, snap in my step living. But I am always in a "waiting" mode for the roof to cave in again!!! The doctor wanted me to increase to .1mg after a week at .05 and I tried, but after two days of 150/100 blood pressure, I dropped back to .05mg for now. I see him next week, and I am going to see if he'll just let me stay at this level as long as I'm feeling good... knock on wood!!!I'm so glad Florinef works for you. It doesn't work for a lot of us.. me included. I was just too "revved up" on it and I gained like 20 lbs. It's such a hit and miss game with POTS. Glad to hear you have some relief!!!!! Quote Link to comment Share on other sites More sharing options...
pat57 Posted April 5, 2008 Report Share Posted April 5, 2008 that's great news. Quote Link to comment Share on other sites More sharing options...
Megan Posted April 7, 2008 Report Share Posted April 7, 2008 yay! Quote Link to comment Share on other sites More sharing options...
grace Posted April 8, 2008 Report Share Posted April 8, 2008 Well I started Florinef a week ago Monday and started the 2000mg/meal sodium plan my doctor suggested (I have a great document that lists high sodium foods with their sodium content if anyone is interested--just let me know). After "reading up" on the medication on this site, I called and asked my doctor if I could start at .05mg instead of .1mg he had initially prescribed. Well the first couple of days I felt really weird but by Thursday, it was like the sun came out after a year and a half of overcast and stormy skies! My eyebrows became "unknit," and I actually had some expression and life in my face (this was the first thing my wife noticed) instead of the usual "dazed, confussed and pained" look I normally walked around with. Amazingly, other than a massive pre-syncopal spell upon standing up at the end of a church service on Sunday (www.lifechurch.tv for anyone interested), I have had one week of clear headed, non-fatiqued, snap in my step living. But I am always in a "waiting" mode for the roof to cave in again!!! The doctor wanted me to increase to .1mg after a week at .05 and I tried, but after two days of 150/100 blood pressure, I dropped back to .05mg for now. I see him next week, and I am going to see if he'll just let me stay at this level as long as I'm feeling good... knock on wood!!!That would be great to get that website on high sodium foods?grace Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 13, 2008 Report Share Posted April 13, 2008 Hey Joe B.,Congratulations!!!! I'm so glad that florinef is offering you relief. Many here maintain on even lower doses of florinef, some even every other day with good results. My son also gets great relief from florinef and salt and has for years. From hanging around here, I've observed that it seems harder for us women to get good sustained treatment for dysautonomia symptoms, maybe it's the fluctuating hormones. My son, like you, found his treatment plan and was able to resume (at a slightly slower speed) his previous life. I am genuinely happy for you and am knocking on wood as I write! I have every reason to believe you will continue to improve. Julie Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 13, 2008 Report Share Posted April 13, 2008 Typically, doctors prefer you to be on the lowest effective dose of a med, so if you do so much better at .05, I wouldn't think he'd have a problem with you staying there. I'm glad you are feeling Better!!!! morgan Quote Link to comment Share on other sites More sharing options...
UnicornLuvr Posted April 14, 2008 Report Share Posted April 14, 2008 hooray! that's great! Quote Link to comment Share on other sites More sharing options...
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