Dysautonomia Community Group

For all types of Dysautonomia to learn and understand more about it.

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Brain & Nervous System
/ Dysautonomia Support Group

just diagnosed

deleted_user
deleted_user
i have just got diagnosed with dysautonomia was wondering how people handle this and any information would be great as i am learning about this thanks
deleted_user
deleted_user
Hi Kerit.

There are many types of dysautonomia. What kind do you have? I have NCS ( neuro-cardiogenic syncope). Basically this means I'm sort of orthostatic intolerant, and tend to have bad blood pressure drops when i'm standing.

If you need information about dysautonomia, i would recommend www.dinet.org it has great information on postural orthostatic tachycardia syndrome, Neuro-cardiogenic syncope, and other forms of autonomic dysfunction.
deleted_user
deleted_user
hey and thank you for the replie i have pots been dealing with it for 4 years because doctors never wanted to consider it but i finally found one who would listen thank god
deleted_user
deleted_user
that's great that you found a doctor who listens. Dysautonomia is a frustrating problem, whether it's in pots form or ncs. The way my condition was described to me, it was just an episodic thing that would come and go, and not be around all the time. Well... that certainly isn't true b/c my blood pressure is always low unless i'm on medication, and my heart palpitations aren't just when i'm having an 'episode'. Definitely feel frustrated by the fact that the medication and lifestyle changes aren't doing as much as I wanted it to, but they still help some.
Did they put you on any type of medication for POTS? like something for fast heart rate or anything like that? Even though I was told my condition was NCS, I have tachy episodes as well, just not as high as POTS folks. Mine likes to shoot up to 120-130 ish for no apparent reason every out of the blue, and without meds my pulse would stay resting in the nineties.
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