Tate Posted March 31, 2005 Report Share Posted March 31, 2005 Hello!My name is Tate, I was recently diagnosed with POTS/Neurally Mediated Syncope. I have been suffering from this since I was 8 years old and have been looking for a diagnosis since then, it only took 19 years!I am lucky that I live in Bham, AL and have access to the Kirkland Clinic and Dr. Coughlin. I am trying Pinidol (a week in) as my beta blocker and Fludrocortisone. I have read many differing side-effects that might come with these medications. I was wondering if anyone had experienced sleeplessness with either medication or weight gain? The sleeplessness I am experiencing immediately, the weight gain has not occured yet but seems to be a reoccuring theme in the texts I am reading. Also can an anyone reccomend a good diet plan/nutrition guide for people with this condition? Since I am on Fludrocortisone should I avoid salt in my food? I happy to finally have a diagnosis but scared as well. I am longing to get to a point where I have the ability to exercise without having an episode ..I just need help getting there! I am so relieved to find this forum!!! Thanks for any advice anyone can share! Also, thought it best if I share a tidbit I have found to work. Even before my diagnosis I knew dehydration was an issue, last year I found SMARTWATER by Glaceau is Great! It is electrolyte enhanced water but without the sugar in Gatorade. You can buy it online or at Target...drinking it has been helpful! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 31, 2005 Report Share Posted March 31, 2005 Welcome Tate.I haven't experienced sleeplessness from florinef--but maybe others here have? We'll have to see if they reply.A generally good well rounded diet is always a good idea. Some here have tried other things including usiing the glycemic index, doing an organized diet system like Weight Watchers (that includes me), gluten free (me also), sugar free, allergy emimination, etc. I don't think there is a universal answer for your question. Like everything else with this complicated set of disorders the answer is often: It depends. One person's miracle may be another person's poison. The only way to know is to try.Weight gain: I gained 5 lbs with florinef--it's not like other major steroids, such as cortizone or kenalog, which can really make people blow up. I gained about 20 lbs on lexapro. Been tough to stick to, but I'm still staying with Weight Watchers.Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 31, 2005 Report Share Posted March 31, 2005 I was told that it is safe to take salt with Florinef. Do you have your potassium checked once in a while?Ernie Quote Link to comment Share on other sites More sharing options...
Laura Posted April 1, 2005 Report Share Posted April 1, 2005 Hi Tate! I was on florinef (Fludrocortisone) for a while, and for the first few weeks I had alot of trouble sleeping and felt kind of wired all of the time. Then it seemed to shift the other way and I became extra tired. You need to maintain a high salt diet for the florinef to work. There is no salt in the pill. What it does is act on the kidneys, causing them to increase the ammount of salt retained in your body, which causes an increase to blood volume (basically, water retention) in your body. The increased blood volume should increase your blood pressure. If you don't keep your salt intake up, the florinef won't be effective. (With the water retention, you might notice a bit of weight gain.) Florinef also has some effect on blood vessel constriction which can improve blood pressure. That smartwater sounds great, I'll have to look for it! Thanks! Laura! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 1, 2005 Report Share Posted April 1, 2005 Welcome Tate! I need the kt but can't have the sodium or sugar. Welcome to the site, hope you find it helpful, if not helpful, then entertaining. There's always lots of advice on here, so no lack of that. Hope you enjoy your stay.... Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 1, 2005 Report Share Posted April 1, 2005 Welcome TateI'm glad that you've found such a great place here.I take florinef and it has helped with my blood pressure. Florinef is not a Beta Blocker. Florinef is used to help balance out your electrolytes. I take several medications and I've put on a lot of weight. I can't tell you which one, maybe a combination of all. But the doctors wanted me to gain weight too. However, this much weight is uncomfortable on my back as I'm a small frame individual. I was alright putting on a little weight because it scared me too be so sick and every month during my menstrual cycle my weight fluxed about 5-8 lbs. Then on top of a POTS episode I could lose more, which could easily put me at about 100-105 lbs. Everyone is different with medications, you need to try what your doctor thinks you need. That way if it doesn't work out, you can say you made an honest effort at their recommendations.Good lucksteph Quote Link to comment Share on other sites More sharing options...
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