Any POTS patients who can help me please?

[PurpleNel]

Hi there everyone - not sure I am in the right place for a query such as this so apologies if I am not.

Having ongoing issues of tachycardia and heart palpitations on standing or from the slightest exertion (cleaning teeth, sitting to shower, wiping the sink etc) Heart rate frequently rises into 120s or even 130s. Feeling very unwell. I also have Hashimotos, hypothyroidism and CFS/ME.

From all I have read I think POTS may be a possibility but before I face that fight with the health system I would really like to talk to someone who has POTS.

Is there anyone here with POTS who would be happy to help with that with private message or even a chat on the phone?

Thank you so much in advance

[meadfoot]

I have a young niece who is struggling terribly with POTS and other associated similar symptoms. She is 18. Her journey to diagnosis has been long and protracted. She has found support from a group of patients based at her local hospital run by a POTS nurse, that is possibly a route for you to try for support maybe.

I hope someone here has direct pointers for support. Good luck, I wish you well.

[PurpleNel in reply to meadfoot]

Thank you so much for taking the time to reply. I am so sorry to hear about your niece - in one so young this is tragic - at least I have had a life before all of this. Culd I ask why the journey to diagnosis has been so long and protracted? Is it purely down to the attitudes and ignorance of doctors? Or because her episodes and symptoms are very variable and she hasn;t been tested during her worst times? Or something else?

It would be helpful for me to know what, I suspect will be the same, challenges ahead of me.

Thank you

[meadfoot in reply to PurpleNel]

For a long time her GP was treating her for migraines even though she had some classic POTS symptoms. Then they sent her for a brain scan, multiple ongoing blood tests and eventually to see a neurologist and an endocrinologist. All tests were inconclusive and left her in no mans land. This has been going on for three years. The POTS specific symptoms of tachycardia and fainting got worse which had become daily and she eventually had a tilt take test which again was inconclusive. Another tile table test is in the works. Her current diagnosis is “signs of POTS and migraine”. She is having treatment for both and seems a little more stable but far from ok. Her life remains largely on hold as going anywhere on her own is virtually impossible. Her university place has had to be forfeited. Very upsetting for her and her parents too. Its an ongoing problem.

[PurpleNel in reply to meadfoot]

What a tragic tale - I am so sorry to hear that her quality of life is so severely impacted. I hope the second tilt table helps to get her diagnosed.

[TracyAdmin Partner ArrhythmiaAlliance]

Good Morning and thank you for sharing your recent experiences with the Community? Please do not hesitate to contact our Patient Services Team at STARS UK, either by calling 01789 867 503 or [e-mail] we are very happy to help anytime. May I also recommend visiting the STARS webpage: heartrhythmalliance.org/sta...

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