Its Been A Bad Week

[Clairefmartin]

Hi everyone,

This is the first time I've been on the computer in a week because I couldn't make it upstairs. It's been a rough week, I went to the ER last Wed because I was having touble breathing, and my whole body fell asleep - including my face and chest! I couldn't lift my head without seeing spots, and laid there for an hour feeling like this, and finally called to go the ER. They gave me fluids, which made me feel better (3 bags later). I was not retaining any fluids, everything I drank went right through me. I thought this was weird, I started Florinef 2 weeks ago, and felt great for the first few days, except for the bloating, but I thought it was suppose to help me retain fluids. I did start my period that day, so that may have contributed, but never has been an issue before. After the first few days of Florinef, I started having more tachy episodes and was really short of breath, and eating causes me to feel bloated to the point were I feel SOB, and my hands and face fall asleep. After the ER, my doctor added a beta blocker called ZeBeta, he said to stay on the current Florinef dose and see how I feel.

So that started my second round of feeling horrible - I was so dizzy after taking it and it made me extremely panicked - I had a continuous panic attack for most of the night. I took the Florinef the next morning as scheduled, and that made things worse again. I then felt so bad that I wasn't up and out of bed except to quickly go to the bathroom or refill my water for the next few days. It stunk. I was so weak and out of breath I could barely move around, and my heart was racing every morning when I woke up. I called my doctor and told them I was not taking zebeta again, so they put me back on a low doese of Toprol, which I started last night. I felt pretty good last night and this morning, even when I took the Florinef. My only complaint is that I feel all this pressure in my head, and have for the last few days....I don't have a headache (yesterday was my first day without one in a week), but I keep having to clear my ears and my head feels very funny like someone is pulling on my scalp. I have sinus problems anyways, so I dont know if its my sinuses or the Florinef. I know I do fine with Toprol (except for it drops my BP), I was on it for two years before.

Should I be concerned with this head feeling?? My nurse and Dr said the tachy feeling and other issues don't normally happen with Florinef, and weren't very open minded about it. I think I will ask to cut the dose down. I can't eat alot or drink alot during the day without getting severely bloated, then at night I don't retain any fluids. I take .1 mg in the mornings - maybe I could take .05 in the AM and PM. Anyways - any imput or thoughts about all this would be appreciated - my doctor is making me nervous. I am going to go see the neuro at UVA who treats POTS specifically to get a second opinion about everything, my parents were nice enough to offer to pay even though insurance won't cover the office visit. I also got asked to come to Vandy, but don't know if I can handle the med trials. The nurse from Vandy gave me more useful advise about Florinef than my doctor has! It made me want to seek a second opinion from someone more knowlegeable.

Anyways......sorry this is so long, it has been a long uncomfortable few weeks and I needed to vent. Thanks!

[mom4cem]

Sorry you have been feeling so badly. Glad you are getting treated and I hope you get out of the potshole soon.

The sob is no fun and the pressure that comes along with it.

[JaneEyre9]

Sorry to hear about your awful week! Do you have a BP cuff at home so you can see how your BP is on the Florinef? That's what a nurse told me to do.

My experience with Florinef was that it caused more side effects than positive effects. I was initially told that my side effects were not due to the Florinef, but when I finally was told to cut back on my dose, I felt better.

Only you know your body! It's possible a lower dose would help you more than a higher dose. I hope you and your doctors can figure out the right balance of meds so you can feel better.

[Laura]

Hi Claire,

I noticed in another post that you were wondering about salt intake. When you are on Florinef you do need to increase your intake of salt in order for the florinef to work. Florinef needs salt to help it to increase your water retention, which increases your fluid volume and increases your BP. If you don't have the salt, the florinef won't do much for you.

I just thought I should post that as it sounded like you might not have been informed of that based on your post under Restarted Florinef. I hope that makes sense! Laura

[Clairefmartin]

Thanks! I did reduce the Florinef to .05 mg twice a day, and am taking Toprol 25 mg and feel much much better! I went out by myself today for the first time in a few weeks and bought some more flowers for my garden, it was great.

Thanks again for letting me vent, hope you are all doing well