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

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=4787

for 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

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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

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...

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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 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

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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

I have seen many posts that different people take salt tablets.  Where do I find them?  I have been looking?  thanks! And if I find them  how many should a person take?  My dauaghter has NCS.

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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

I'm on .1mg of Florinef, my dr has me taking 3 pills in the morning then i have to take another 2 pills in the afternoon. And now he wants to increase it because we had to decrease the Midodrine was making me sick.

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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

Hello All,

Teri and I are registered for a 5 km race (3.2 miles for the metricly challenged) to take place on December the 5th at 9am. I will be running with my digital video camera and hope to post portions of my video on my blog.

This is a monumental task for me to train for, given my health. I started physical therapy last week on Monday, and had my 2nd visit last night. I am doing great there--yesterday I did 5 minutes on the bike, 6 minutes on the arm bike, and a whole host of spinal and abdominal stabilization exercises. My visits take more than an hour because of the complexity of my issues.

I'm posting, first, as a declaration so that I am now publicly saying: I AM DOING THIS. I'm doing it even if I have to walk, or crawl to the finish line. Secondly, I'm asking that when Dec 5 rolls around, would you please think powerful and nice thoughts on my behalf? I'm going to need every bit of my own strength and then some.

And, if I don't finish, I'll live, but I'll also try again. Nina

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

Hi Terri,

welcome to our world! You'll find a lot of warm and helpful people here, who really care about eachother and understand! So, again welcome and I hope you'll find they answers that you're looking for,

Corina 

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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

Hi Terri,

Welcome to the forum!  Sorry that you have to come here as a fellow member of the terminally dizzy, but glad you found us for support and answers to questions.  I've found a lot of comfort here just knowing there are others who understand my problems.  Look forward to reading more posts from you.

Kristen

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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