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ellen
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This is my first post although I have been reading here for months. I was finally diagnosed with POTS last summer but have been on Florinef for 8 years. I had a virus 14 years ago that resulted in CFS( undiagnosed), asthma, allergies, low thyroid, fainting, etc. The good news, is I am very much recovered and live an almost normal life (if I don't forget to take my meds), but still have ups and downs. I can identify with so many of you who have searched for a doctor who understands this illness. My biggest problem when I am feeling "potsy" is brain fog, which made it very difficult to explain the very illness I was trying to describe! So I am so grateful for this website and you posters who express so clearly so much of what I've been experiencing.

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Hello Ellen, I'm glad you posted. It is life changing, isn't it? I'm happy to hear of your high level of functioning.

I, too, suffer miserably from brain fog, and I know what you mean about it interfering with thinking on your feet. I said at my doctor's appointment, last week, while giving my history, "If you want to get any sense out of me, I'd have to be laying down!"

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Welcome and I am glad to read that you are living life well with POTS and CFS. That certainly is a good thing!

Brain fog,,yuck, just never know when it is going to hit. Sometimes getting the right words out is so difficult. Sometimes I just feel like my body is here and my head is floating up in the clouds, can't think straight, talk straight, remember everything that has just happened, what i am supposed to be doing...sound familiar?lol....

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Hello Ellen, I'm glad you posted. It is life changing, isn't it? I'm happy to hear of your high level of functioning.

I, too, suffer miserably from brain fog, and I know what you mean about it interfering with thinking on your feet. I said at my doctor's appointment, last week, while giving my history, "If you want to get any sense out of me, I'd have to be laying down!"

My sister says, "Stand her up and she doesn't even know her name." My kids say if you want mom to agree to something, stand her up. Ha! Donna

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Thanks for posting, Ellen.

There is brain fog and also there are times when we are so distracted by symptoms like the palpitations that we also cannot relate to our surroundings. I have spent so much time organizing my notes before meeting new doctors, practicing my story to make it not seem too long or crazy, but then when the time comes, it all depends on if I have a good or a bad day.

I think the roller coaster ride is one of the worst aspects for me.

OLL

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Hi Ellen and welcome! I think one of the worst things about POTS is the brain fog as well as the ups and downs! Glad to see that you are doing good, hopefully you stay well.

Jacquie

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Welcome, Ellen! glad you decided to post. It's great to read people's experiences on here, but I think that it helps even more to have direct interaction.

It's wonderful that you are able to stay well-controlled with meds. Were you on florinef for your CFS diagnosis? Are you on anything else?

I know what you mean about brain fog. I get so frustrated when I forget my main symptoms while trying to talk to someone!

Good to meet you!

Kristen

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hi ellen -

i just wanted to add my welcome! i'm sorry that you have any reason to be here but am glad that you found us & also that you're doing as well as you are.

:D melissa

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It's wonderful that you are able to stay well-controlled with meds. Were you on florinef for your CFS diagnosis? Are you on anything else?

Kristen, No, I was never diagnosed with CFS, it wasn't widely recognized back then (1992). I had a bad "flu" which turned into asthma, allergies, a constant sore throat, overwhelming fatique, memory loss, 14 hours of non-refreshing sleep, fainting, hair loss, etc. I went through 3 doctors who couldn't find the cause of my illness. When one doc said "if you keep complaining about fainting, I'm going to have to tell the DMV!" I didn't want to lose my license, so I stopped seeing him. I was home with my young children at the time, but I could NEVER have worked ( as a software engineer). After about a year I got better, but just learned to manage my fainting. Every time I had a physical, they couldn't find my blood pressure because it was so low, eventually I had a new doctor who recommended Florinef, which was like a miracle cure for me and I've been doing ok on it now for 8 years. I tried Mitodrine a few years ago, but it made me feel like someone said "BOO!" (adrenaline surge?). I have developed severe allergies in 1994(5 years of immunotherapy), asthma (albuterol inhaler occasionally) and low thyroid (10 years ago). And I have bouts of fatigue, like everyone here, but I am much better than I had been! I asked my PCP about POTS after he told my husband to check his blood pressure regularly, so to encourage hubby, I began taking mine. I noticed my bp dropped and pulse increased when I stood up. He sent me to an Cardiac Electrophysiologist who confirmed my suspected diagnosis as "classic POTS".

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Welcome, Ellen! :)

It's good to hear someone is doing pretty well on their meds. I usually do, too....unless I forget to take them, or totally over do it, which I've been known to do for days/weeks/months at a time if I can get away with it. I'm currently recovering from a 2 & a half month exacerbation because I tried my cyclical routine of pretending I'm a "normal" person. :D HA! I get better, I do too much. I get worse. Repeat. (I'm actually proposing to break the cycle this year! Fingers crossed! Drawing some lines in the sand!)

Brain fog is the worst part about this illness UGH.....it's bad enough to be expected by others to explain it and you need a script to read from. But sometimes I have to write lists of what I need to take to school for the day....and it takes me a LONG time sometimes to remember.....boooks......pencil......calculator.......gatorade bottle......keys......watch.....notebook.....wallet......um, something else......?? :D I used to be smart. Really. Now I fake it.

it's pretty ridiculous. the worst is when i walk two feet into another room and can't even remember why I got up. :D then i go sit back down and forget what i was trying to think about. :D:D As soon as I have to write a list to remember how to walk to the next room, get the whatever and walk back, that's it: I'm hanging it up. :D

I hope you continue to do well and find answers and inspiration among these ppl and their posts. I think they're WONDERFUL.

Love and light,

Lulu

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