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Newly Diagnosed Ncs


maryfw
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B) Hi. My name is Mary and I am newly diagnosed with NCS. Maybe I am weird (well that is besides the point) but I am kind of happy that I FINALLY know what is wrong with me. I am 39 and have probably had this all my life. My most prominent symptom is FATIGUE with brain fog. When I am at my worst I can't make clear sentences. I have never completely passed out but have slid down the wall on several occasions. I have always been intolerant of exercise. One of my weirdest symptoms is that I cannot tolerate rapid acceleration in a car and airplane take offs are absolute torchure on me. Never been able to ride any amusement park rides. When I was 4 I rode a tilt-a-whirl with my older sisters and my mom thought I had passed out (almost did).

In my TTT my bp was 64 on the top and they could not hear the bottom number within 60 seconds of standing up but my heart rate of fine. Sometimes though as soon as my head raises up off the pillow (not even my whole body) my heart races (I think people call that tachy).

Any comments you have for me would be GREATLY appreaciated.

I take Proamitine, 5mg in the morning and 2.5 at lunch and 2.5 at 5pm unless I need more. 5mg all day works best for me but I cannot tolerate it. I get nauseas and cant eat.

Thank you

Mary

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Welcome to the forum Mary B)

You are definately not weird. Getting a diagnosis can be such a relief, knowing what is going on with your body and knowing what you can do about it. Rather than having to worry and wonder all the time. Anyways, welcome again!

nicole

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Thank you all. Does anyone else have trouble with airplane take offs. I liteally shake and do my best not to scream. Once the accelation stops then I am ok. My doctor says hmmmmmmmmmmmmmmmm.

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hi mary,

welcome to the forum! i don't have the airplanbe trouble (but haven't been in an airplane after diagnosed 5 years ago), but i do have this absolutely yuckie feeling in elevators. can't expalin in english how it feels but i do know that i hate it B) also, i can't bare to be in a boat anymore, this makes me feel soooo bad (especially in my head).

well, although i am sorry that you have reason to be here, i am glad you found us! this is a very friendly, helping, warm and active forum. it is the best place for us to be!!!

take care,

corina :unsure:

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Hi Mary,

Welcome!! No, that's not weird...I was completely relieved when I finally had a diagnosis!! You will find a wealth of information here and very friendly people. Sorry you have NCS, but glad you found a place to related to others who have dysautonomia.

I don't have the problem with the planes too much, but like Corina elevators are terrible. I get this weird heady feeling and some vertigo.

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Hello, Mary, and welcome to the forum! I'm sorry you have need to be here, but glad you found us.

Yes, it is nice to finally get a diagnosis and know what is going on. I hope that you and your doctors can find a good treatment plan for you.

Take care,

Rachel

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Yes, I do have problems with my heart racing if I move too soon after waking up. My heart pounds and my heart rate increases. Even when my hr goes back down it still takes a while for it to not beat so forcefully. I have to take mornings

slo-o-o-owly!

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