TERRI13452 Posted November 8, 2005 Report Share Posted November 8, 2005 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 Quote Link to comment Share on other sites More sharing options...
Evie Posted November 8, 2005 Report Share Posted November 8, 2005 I am unsure of that a PAFer is so i cannot comment if i am one or not hehe. Good luck with upping the florinef, i hope it helps Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 8, 2005 Report Share Posted November 8, 2005 hi terri-i ?may? be a PAFer (oh yeah, evie...PAF is pure autonomic failure). i just received the clinic notes from my new neuro, who is the head of the autonomic lab at cleveland clinic, and it's written over & over that i have a clear progression of autonomic failure. when i was a research patient at vandy in the spring though i was deemed "not quite" PAF but the other long list of goodies listed in my signature. so there seems to be some debate over me amongst the docs. but regardless the treatment won't likely be different so i'm not losing sleep over it...i'm sorry you're having such a rough time & see your med list but am wondering if you have tried any of the other meds (midodrine, mestinon, etc). various docs i've seen over the years have told me that many of their autonomic patients do better on combinations of meds in smaller doses rather than a lot of one med so just thought i'd through that out there. obviously i don't know all of your individual medical issues that play into medication issues but am not at all surprised that your electrolytes are off with so much florinef. i had major potassium issues on only .2mg. are you taking supplements? i know none of what i've mentioned is "the" answer...unfortunately there isn't one....but am just thinking out loud.hang in there, melissa Quote Link to comment Share on other sites More sharing options...
persephone Posted November 8, 2005 Report Share Posted November 8, 2005 What is the difference between POTS and PAF? If you have PAf it's degenerative, isn't it...I'm worried because I seem to be getting worse not better physically as time goes on... Quote Link to comment Share on other sites More sharing options...
TERRI13452 Posted November 9, 2005 Author Report Share Posted November 9, 2005 hi terri-i ?may? be a PAFer (oh yeah, evie...PAF is pure autonomic failure). i just received the clinic notes from my new neuro, who is the head of the autonomic lab at cleveland clinic, and it's written over & over that i have a clear progression of autonomic failure. when i was a research patient at vandy in the spring though i was deemed "not quite" PAF but the other long list of goodies listed in my signature. so there seems to be some debate over me amongst the docs. but regardless the treatment won't likely be different so i'm not losing sleep over it...i'm sorry you're having such a rough time & see your med list but am wondering if you have tried any of the other meds (midodrine, mestinon, etc). various docs i've seen over the years have told me that many of their autonomic patients do better on combinations of meds in smaller doses rather than a lot of one med so just thought i'd through that out there. obviously i don't know all of your individual medical issues that play into medication issues but am not at all surprised that your electrolytes are off with so much florinef. i had major potassium issues on only .2mg. are you taking supplements? i know none of what i've mentioned is "the" answer...unfortunately there isn't one....but am just thinking out loud.hang in there, melissa<{POST_SNAPBACK}>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 Quote Link to comment Share on other sites More sharing options...
TERRI13452 Posted November 9, 2005 Author Report Share Posted November 9, 2005 What is the difference between POTS and PAF? If you have PAf it's degenerative, isn't it...I'm worried because I seem to be getting worse not better physically as time goes on...<{POST_SNAPBACK}>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 goodcare of yourself. Terri Quote Link to comment Share on other sites More sharing options...
briarrose Posted November 9, 2005 Report Share Posted November 9, 2005 Here is a great reference for you. This book can be down loaded for free and explains many things. Reading this will explain the different kinds of Dysautonomia.http://www.ndrf.org/Reference.htm Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 9, 2005 Report Share Posted November 9, 2005 POTS can definitely be just as chronic as PAF (as can NCS or any of the other classifications...) the differences are primarily specific to certain aspects of autonomic functioning, symptoms, etc.the ndrf info is great and here's one more option for definitions/info on the different categories/classifications of dysautonomia:http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787for me the diagnosis confusion seems to be that i have some of the characteristics of both but not all of either. i like to be unique hope this helps, melissa Quote Link to comment Share on other sites More sharing options...
TERRI13452 Posted November 10, 2005 Author Report Share Posted November 10, 2005 POTS can definitely be just as chronic as PAF (as can NCS or any of the other classifications...) the differences are primarily specific to certain aspects of autonomic functioning, symptoms, etc.the ndrf info is great and here's one more option for definitions/info on the different categories/classifications of dysautonomia:http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787for me the diagnosis confusion seems to be that i have some of the characteristics of both but not all of either. i like to be unique hope this helps, melissa<{POST_SNAPBACK}>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 Quote Link to comment Share on other sites More sharing options...
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