Daughter Likely To Be Diagnosed With POTS

TooStressed
TooStressed Online Community Member Posts: 1 Listener
edited April 2 in Families and carers

My daughter has an appointment next month with a Cardiologist and is likely to be diagnosed with PoTS, according to her GP and the Dr in A&E.

Has anyone got any advice as she is suffering with both pain in most of her body including chest and exhaustion and is having to take time off work.

We are dreading the diagnosis.

Tagged:

Comments

  • chiarieds
    chiarieds Online Community Member Posts: 16,793 Championing

    Hi @TooStressed - & welcome to the forum. Whilst I haven't sought a diagnosis of PoTS, both my son & I certainly have orthostatic hypotension, which at times can also be difficult to deal with, so I'm sorry to read your daughter may be suffering from PoTS.

    Personally I feel that getting a diagnosis can often be a way forward in finding out more & getting help. As you likely know, PoTS often has an underlying cause, e.g. my son & I have Ehlers-Danlos Syndrome (the hypermobile type/hEDS) which is often associated with PoTS or orthostatic hypotension. We are both under a cardiologist which we find reassuring.

    There's some info here about PoTS in case you haven't come across this site: https://www.potsuk.org/

    We also have problems with dysautonomia (where the autonomic part of your nervous system that governs many functions over which you have no control such as breathing, yawning, sweating, your heart rate & digestion) doesn't function correctly, which is either due to hEDS or a neurological problem our family also has, & we both have low blood pressure (& some medications I've taken have worsened matters).

    I hope you find some answers when your daughter sees her cardiologist, & tho sometimes a cause for PoTS may not be found, it can be a comorbidity with other disorders.

    Kindly let us know how you get on when your daughter sees her cardiologist.

  • Mary_Scope
    Mary_Scope Posts: 1,424 Scope Online Community Children and Family Specialists
    edited April 2

    Hi @TooStressed and a warm welcome to the community

    I am going to edit the title of your post so it is easier for other members who have POTS themselves or experience with the condition to find and offer some peer support. I see Chiarieds has already given some great first hand experience and advice. Hope thats okay!

    If your daughter does get a diagnosis, hopefully they will be able to find a suitable treatment plan for her that will let her manage her symptoms and make her day to day easier.

    It's lovely to have you here on the community and I hope you find it to be a safe and supportive space🙂

Categories