MommytoSJEA

Usually florinef and salt tablets (or increased salt in your diet) are prescribed together - florinef works in the kidneys to increase re-absorption of sodium from the urine. As the sodium is pulled back into the blood water goes with it. The increased water in the blood raises your BP. In order to get the benefit of florinef you need to take enough water and salt. Flop Now my DR did not tell me anything about taking salt tabs. Or even increasing my salt. I figured I had to just from reading it on here, and I have been drinking Poweraide like its going out of style. I don't know how much salt to increase by (which I HATE salt and have never never used it on my food or even to cook with, been told to follow a low salt diet for the past 7 yrs!) or if I take salt tabs I don't know how many to take. I hate all this. In the few days that I have been posting, I have learned more here then my own DR has told me in 7 years. Thanks guys. I appreciate it. ~Kelli

See I was kinda wondering about the same thing. I have all the same orthostatic issues no matter what position I am in. Even if its laying down in bed. Because of this I was starting to wonder if I was diagnosed wrong. Actually kinda in denial and refusing to believe the dx. But the more I read about POTS and all the "wonderful" things that it does to the body, I decided that its all "just the POTS". SOrry I can't be of help. Just that I have the same issues. ~Kelli

I have had them tell me I was having a panic attack at the ER before. It was before I was diagnosed with anything. And it was becasue the only way I could describe what was happening to me was by saying " I feel like you get when you get scared. Like an almost car accident or something. When your heart jumps in your throat and you pulse is racing and you get crazy dizzy" They are like yup...that's an anxiety attack, or thats a panic attack. No its not!!! Not when its happening when I'm sitting on the couch reading or something. Stupid idiots. ~Kelli

1. I have never looked at my pupils or have anyone notice anything.....might be worth checking out. 2. If I lean forward my head pounds and my pulse races 3. I know that in the morning when I wake up my hands are swollen really bad. Lately its so bad that I had to take my wedding rings off. ~Kelli

I was taking .1mg 2xs a day. Thats what the doc started me on. I called yesterday and they lowered my dosage to .05mg 2xs a day. I am checking my BP through out the day and it seems to be all over the place which I told them. They said try the lower dosage and see if that helps. They told me to only take tylenol, and nothing else. Which does nothing for these darn headaches. Thanks everyone for replying back ~Kelli

I'm getting severe headaches with this med. I've been taking it for only 4 days. I need to take something for it. I do remember reading that I shouldn't take ibuprofin. For those that get headaches....what do you take to help relieve the pain? ~Kelli

Svetlana Blitshteyn, MD 835 Hopkins Road Williamsville, NY 14221 716-531-4598 Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended. OMG! This one is about 20 minutes from me! My searches have all turned up all the other ones you posted, but not this one. Thank you. I will be checking this out. ~Kelli

I love it! That is sooo true ~Kelli

Hi everyone! I'm new here and hoping to get as much info as I possibly can. My doc is of NO help whatsoever. I started having all the "symptoms" back when I was about 15, but never went to a doc until I was 20. I was dx with SVT, had an ablasion (12/04). Seemed better for lack of a better word for about a year. At least in that year I did not faint. Docs changed and a new Electro took over for the old one. Saw him, told him the symptoms were coming back. Dizzy, swimming dots in my eyes, racing heart, "fishy flopping" feeling in my chest and terrible chest pain. He says sounds like Atrial Fib, lets ablate again (11/05)! Goes in finds something else to ablate, and it did not help. Enter next game of finding the right meds for you! Yeah, not fun. Beta Blockers, Calcium channel bloackers, BP meds, and anti-arythmics...nothing helped. If anything everything made it worse. The tiredness, nausea...uggg. EP doc says well, I guess its just innapropriate sinus tach. Great IST. I begged for a pacemaker, he said no. Too young. He sends me to Strong Memorial in Rochester (I live in Buffalo, NY) for a consult and they decided to do a sinus node modification. They deemed that a failure, with a shake of thier heads saying I just don't get it. It should have worked. We "burned" your heart 36 (yes, 36) times! Back to Coreg and Diltiezem (sp?). My EP adds midodrine to that mix. My pharmacist says stupid since one if to raise BP and the other to lower, but what do we know. So I take them, and imediately become stupid. Can't hold a conversation, can't stay awake. And the nausea is so bad that I don't know if the next time I open my mouth I'm going to vomit on the person in front of me. Yeah, that was fun. Called EP, he said and I quote "Suck it up for a bit longer" I went back to the office threw a raging fit, and he send me to Dr Feuod (sp?) at the Cleveland Clinic in Ohio. She dx me with POTS. That was this Sept. Told me my EP could monitor me from Buffalo, and have a nice day. I see him 2 wks ago (yeah he let me go almost 4 months from when I went to Cleveland to have a follow-up with him). He asks me "did you ever go to Cleveland" He never got any paperwork nothing. So I tell him what I remeber from the tests. Tilt, Blood volume, and ANS test of some sort. He says well she knows her stuff, so, if thats what she says it is then thats what it is. I don't know what to do for you other then keep playing the meds game. I was sent off to take Florinef for 6 wks to see if this helps. Oh yes, and when I was crying, yet again, because its not fixing the problem, hes says well im sorry, your life is going to be completely miserable, but your not going to die from it I think I need a new doc. Oh, and I know now from all the reading I have done, those 3 ablasions I had...not so good. Ok that was long. I'm sorry. I just have tons of questions seeing as how my doc bites the big one. Im in Buffalo NY, anyone know any docs out this way....besides Cleveland. I dont even know about this Floinef. He did not tell me anything about. I read that im supposed to be uping my intake of water, possibly salt tablets. He told me NOTHING. Wait, no he told me I might bloat around the tiome of the period. Thanks doc. Any help or advice would be much appreciated. If your still reading this far...thank you ~Kelli

It all depends if and when I tell people. Its not that I'm a private person, becasue I'm not...lol (My hubby says I have the least amount of tact then anyone else he knows ) It's just I hate that I have no clue what your talking about look. When asked I kinda just joke it off with I have a bumb ticker which doesnt beat right and it cause me to faint. Most people get that. Not quite true.....but they get it. ~Kelli