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Bigskyfam

I Feel Alone In Montana...glad To Have Found You Guys

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After 6 weeks of displaying symptoms of POTS, my cardiologist ordered a tilt table which I failed. Diagnosed with primary POTS.. No subtype identified. I am a first for many of my doctors here. I'm glad they are reaching out to mayo docs to compile a gameplan. While I know what a blessing a timely diagnosis is, it's also frustrating to start the trial and error phase. I elevated my bed 6 in, increased sodium/ fluids, recumbent bike... Started propranolol today... Not sure if this bad day is par for course or due to meds. I enjoy reading the forum and feel it'll be a great source of support/ comfort in my neck of the woods. Any advice/ hints or stories appreciated.

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Hi and welcome to the forum. It's great to hear that your doctors are reaching out to other specialist. Keep up the exercise but don't over do it. Do they know what brought your POTS on? Many on the forum have underlying conditions that started their POTS. Wishing you the best and don't be afraid to ask questions.

Rachel

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Thank you for the warm welcome... I had a gyn surgery in jan and dental surgery in aug... No virus that I can think of. Lots of tests to rule out underlying conditions. Haven't quite felt like myself since Jan..I've always been an active person( wife, mom, employee, student, volunteer). But oct 5th is when it hit me.Ive been off work for a month and had to drop my classes. Is anyone else able to work? Depending on others and not being able to do my norm has been hard. Trying to make little adjustments to cope.

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Hi Bigskyfam! I'm from North Dakota so we're practically neighbors! I've had POTS symptoms since I can remember and was diagnosed almost six years ago. This forum has been a huge help to me. It's so nice having support from others who understand! :-)

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Thanks you guys. North Dakota is the closest. :) already I feel part of the group. Trial and error phase. Honeymoon phase.. Everyone says "get better soon". "Now we have a plan". How do you handle this 6 yrs in?

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Hi Bigskyfam,

Welcome to the forum!

You are really lucky to have a diagnosis so quickly, but I hear you about the trial and error phase, it is frustrating.

Hang in there, and hopefully your doctors will come up with something that will really help you soon.

Best Wishes,

Lyla

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Hi.

My POTS really kicked in about 3 years ago, but I think I actually had some of the symptoms for a few years before that as well.

Oh, by the way I don't quite have a definite diagnosis yet, all the tests I've had done so far show POTS, I'm just waiting to see my cardiologist in December to hopefully get an official diagnosis.

Lyla

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