TERRI13452

Welcome to the world of the terminally dizzy. I am fairly new here but have found a wealth of info posted. terri

Hello: I have been on Florinef for approximately two years. .5 a day until the last week when my PAF kicked in big time so --- "take the Potassium" and .8 of florinef. Still dizzy but less so. I have had a dull headache for about a month but I can not specifically say it is florinef related. I can't imagine I could maintain an upright position without the silly stuff. Hope this helps some. Terri

Hi amanda: I also am on Florinef, .5mg a day which is soon to be upped because of my dizziness and blood pressure. I have not gained weight either. I don't have POTS but some POTS like symptoms. I have been diagnosed with pure autonomic failure and we are trying to regulate the pressure. It is quite difficult to work as a nurse in the hospital when you want to fall over all the time but I do because I have to. Terri

certainly didn't mean to imply POTS isn't chronic, perhaps degenerative was more the word I am looking for. Sorry if I offended in any way. Terri

I think the difference is the chronicity of the illness. I am still researching information. It seems to me that I have many of the same symptoms as POTS and that is what they thought it was initially. However, I didn't fit the "mold" for the perfect diagnosis and then the endocrinologist decided it was PAF. I don't know if that is helpful but that is the extent of my knowledge at this point. All I know is that I really get tired (as I am sure you do) of feeling crappy. Take good care of yourself. Terri

Hi There: Thanks for your reply. I have tried midodrine (about killed me - both financially and physically) sooo-we stopped with that. They have mentioned clonidine and perhaps erythropoetin. I am their conundrum here in rural upstate NY. I am grateful though that it now has a name and the surgeons and medical docs can stop looking at me as though I am nuts (even though I may be ever so slightly nuts lol). It has become increasingly frustrating in that the varying docs have varying opinions of what is going on. ARRGH!! I have a bit of angst over increasing the Florinef, but--if it keeps me upright, I guess it is a plus (especially in light of the fact that I am a nurse who works nights!!) Thank you so much for your support and help. I just love this site. Terri

when i was discharged from the hospital after they diagnosed my situation, I was told by every pharmacy I went to in my area that they no longer make salt tablets. I thought that was a little bizzare so I just upped my salt intake. Maybe it is just in NYS????? Terri

Well folks, I thought I was doing better, however, took a trip to the doctor and found I had lost another eight pounds (s/p my gastric bypass and being told I had to ugggh gain weight). dizzy episodes are more pronounced than ever, lytes are off and they want to up the florinef to .6. Yikes!!!! some days it just doesn't pay to get out of bed (even if you can). Take care all. Any other PAFers out there???Terri

Good luck, you are in my prayers. Terri

Clear is a great color. I really never looked at this disorder as an "invisible" illness but it makes so much more sense. So glad to have this forum for info and discussion. It's embarrasing to think I have been dealing with this for two years and haven't run across any helpful info (at least from the docs - they just gave the dx and I guess I am on my own to research). Thanks. Terri

Wow! It is amazing that you can find people here who have the same wierd things you do. I had a great deal of difficulty sleeping today, woke up with sensations I can't explain other than sort of pain, tingly, weak in my arms, legs. I tried elevating, lowering, walking, etc and nothing helped. Finally popped a sleeping pill and slept through it. Still feeling weak and tingly in the arms tonight. What an amazing disorder this is!!! Thanks. Terri

Thank you all for your wonderful replies. I am a saltaholic so that isn't a problem, also I drink a lot. Unfortunately with the gastric bypass, some things are taboo although I am just not normal in any case. (can't eat much but cheese and crackers and junk that isn't good for me (hmmmmm I had this surgery why???). I see the PMD on Thursday and hopefully we can figure something out with this. It is becoming more and more frustrating to feel like crap most of the time and have people tell you "how good you look". Anyway----enough pity party. Have a great night/day. Terri

Can anyone tell me what the highest dose of Florinef is that they give to support the blood pressure? I am on .5 as I said before but am still symptomatic (less so than before but symptomatic none the less). They mentioned adding Clonidine to the mix but I was just wondering what your experiences are. I know everyone is different but am just curious. Thanks for the great welcome and support. Terri

good luck mighty mouse!!! Thanks for my bracelet. Got it yesterday. Terri

Thank you very much Corina. You would think being a nurse that it wouldn't bother me so much but tonight for example, I have spent quite some time folded over, or sitting on the floor and/or trying not to pass out on my patients. One of the new things I have experienced is overwhelming fatigue, more than I have had in the past. Is this part and parcel of dysautonomia? Thanks Terri

thank you very much. It gets so absolutely frustrating to be dizzy all of the time and to know that if you stop taking the drug that has so many side effects, you will fall down!! Ah well - what doesn't kill us makes us stronger right?

Hello: my name is Terri. I had gastric bypass surgery two years ago and (oh joy) developed what the doctors have now decided is pure autonomic failure. 10 days in the hospital, surgeons treating me like I was a lunatic and finally my beloved PMD who ordered the tilt table which I promply failed, and the head of the bariatric program who decided on the diagnosis. Hurray! at least I know I am not nuts. I am living on a fairly large dose of Florinef, .5 a day. Still have symptoms (just love the world of the terminally dizzy). Any others out there with similar experience? I ordered and received my bracelet, love it. Have used the cards a couple of times and they are a termendous help. I find when I utilize the tube feeding they instituted I feel a bit better but with the recent birth of my grandchild, I have been a bit lax with that. I appreciate a forum to ask questions about this situation. Thanks. Terri