Please can I have some advice from anyone!

Hello, I don't know if I'm writing this in the right place. However, somebody has suggested I see a Dr specialising in autonomic dysfunction, the appointments are hard to come by and I wanted to ask for someone whos more experienced with this than me for their opinion before I pay for a private appointment.

I have been ill for 8 months now with a various symptoms

Racing heart ( often around 160bpm)

Fainting ( often when I raise my arms above my head)

Stomach pain

Feeling sick

sweating a lot!

Freezing hands and feet which turn purple

Migraines

An awful overwhelming tiredness

Shakiness

I have had loads of tests for thyroid problems and blood tests and all sorts.

They diagnosed me with raynauds and said I have ibs and overactive bladder.

However, treatment for those has helped with those symptoms but my racing heart and all of that is still going on.

The problem is, the severity of my symptoms fluctuates greatly and when I have had holter monitors and things, it hasn't catched it happening.

Are these symptoms that I should see a Dr specialising in autonomic dysfunction for do you think?

Sorry it's long but I'm starting to feel a bit helpless about it all.

3 Replies

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  • Hi read your case with interest yes sounds like an Autonomic problem and there are Specialists but few and far between. Prob long wait for NHS may depend where you live. Make sure you stay hydrated lots of water and try iced water before getting out if bed it kicks the system a bitter quicker! Try the POTS uk website there are lots of people with your symptoms there. I have Pure Autonomic Failure and have lived with it for 16 years but wasn't diagnosed officially until 3 years ago! But with advice, medication and daily adjustments to my life I have a pretty good one most of the time! Good luck! M x

  • Hi I've had all those symptoms and more all of my 47 years. I was largely disbelieve for many years and only now are the medical profession realising that pots is an illness that seriously affects your life if you have it often.the heart monitors & blood pressure monitors weren't much help because every time I blacked out I broke them.eventually I was diagnosed with very low blood pressure that dips badly when I move around.but that took over 20+yrs to proove.hydrocortisone helped.a.bit.at first. Beta blockers dip your blood pressure more (although you don't have to have low blood to have pots) it certainly sounds like it to me though.I've stuck my face to a radiator, fractured my cheek bone and broken nearly every bone in my body.most of the time they are not simple.faints ! Eventually a cardiologist wrote to my go suggesting it was pots syndrome.not my heart thyroid no or my overactive bladder. I have loads of symptoms and you sound just the same.as its virtually new (many des still haven't heard of it) If I were you Yes see the specialist. It will help with the nerves panic and worry of what if it happens when I cross the road, answer your concerns and make you understand your condition fully. Best wishes andiandjohn

  • Hi..I don't know if you're sorted yet but I hope my advice might help. Have you seen a neurologist? Initially, if you think it might be PoTS then you'll need a tilt table test..cardiology can arrange them too.

    I had all the heart monitors for a few years but showed nothing. The TTT was all it really needed to confirm my diagnosis.

    I don't know where you are in the country and it can be a bit of a postcode lottery unfornately..maybe a visit to your GP and request for neurology might get the ball rolling. I hope you get some answers xx

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