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POTS cardiologist /specialist in South West

edartmoor

Hi, I'm pretty sure I have POTS (postural tachycardia syndrome) in addition to my long term M.E/CFS. (Get dizzy standing, obsessed with finding chairs, heart going nuts and passed POTS criteria for Nasa lean test). I see GP later this week.

I'd be very grateful for advice on:

Are cardiologists familiar with POTS, and is it worth being referred to one? Have heard that many think POTS is just women making a fuss ☹and had enough medical gas lighting with the M.E!!
any recommended specialists in South West - NHS (or go private although I may not be able to afford that)

Any experiences or advice welcome

Thank you ❤

Best wishes

Ellie

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Comments

Needhelpandadvice

Ellie,

Firstly the South West is a large place. However, Taunton Musgrove is good, Bristol or Exeter are the main hospitals, large ones. Bridgwater, nah, Weston, nah.

As POTS is related to the heart, I am pretty sure they will know what they are doing. If you go in with two legs, and you only come out with one, obviously you saw the wrong Doctor.

You could try a Bupa membership, get in and see them, and then cancel the membership after you have seen them if that is faster than the NHS waiting list. BUPA advertises for about £20 a month or something like that I think, I could be wrong so please check first.

Here is a quick Artificial Intelligence search, however always seek proper medical advice, and never listen to a search engine, or AI. The last time I used Google for self diagnosis, I was eight months pregnant, it has been twenty years now and I still have not given birth ;)

Postural Tachycardia Syndrome (PoTS), also known as Postural Orthostatic Tachycardia Syndrome, is a condition where your heart rate increases significantly when you move from lying down to standing up. This can lead to symptoms like dizziness, lightheadedness, fainting, palpitations, and fatigue 1 2.

Symptoms

Dizziness or light-headedness
Fainting or near fainting
Heart palpitations
Chest pain
Shortness of breath
Fatigue
Brain fog (difficulty thinking, memory issues)
Digestive issues (nausea, diarrhea, constipation)
Purple hands and feet (more noticeable in lighter skin tones)

Causes

The exact cause of PoTS isn’t well understood, but it can develop suddenly or gradually. It may be linked to other conditions like diabetes or Ehlers-Danlos syndrome 2.

Diagnosis

Diagnosis typically involves measuring heart rate and blood pressure changes when moving from lying down to standing. Additional tests like blood tests, urine tests, and heart monitoring may be required 1.

Treatment

Treatment often includes lifestyle changes such as increasing fluid and salt intake, wearing compression stockings, and avoiding triggers like heat and alcohol. Medications like beta blockers, steroids, and SSRIs may also be prescribed to manage symptoms 1 3.

If you suspect you have PoTS, it’s important to consult a healthcare professional for a proper diagnosis and treatment plan.

Is there anything specific you’d like to know more about regarding PoTS?

edartmoor

Hello, thanks so much for your reply I really appreciate it. That's very useful (and temporary bupa membership is something I hadn't thought of). I've decided to see the Autonomic Unit in Queens Square London for one private appointment as a starting point, local Exeter and Plymouth hospitals having said they don't specialise. Thanks again!

Albus_Alumni

I just wanted to add to this by saying BUPA won't cover long standing conditions, only ones that appear after you start your bupa membership. The prices can also vary wildly depending on preexisting conditions.
Best of luck with Queens Square London. 😊

Obsidian

I only found this website today so maybe late to the conversation. I was diagnosed with another form of dysautonomia but was also looked at for POTS. Due to a crazy waiting list on the nhs, I ended up paying privately. I had a consultation plus ecg that cost me about £350 and actually received a diagnosis that day. He wanted to run further precautionary tests to be certain there wasn't a heart condition being missed and those were able to be referred back to the nhs using the existing waiting list. I ended up getting those tests within a month.

Now, I only have one remaining test which is for exercise intolerance as a likely further part of the diagnosis.

It was so worth that money spent to ease my mind and show people I'm not making this up, it's real.

My GP also commented on how impressed she was with the report sent to her and said it was far more detailed and showed the time spent to consider the information than those she gets from Nhs cardiologists.

Hayles7

Look up a B12 deficiency as your symptoms also match that.

The pernicious anemia society has some great information you might find helpful. I'm also based in the south west.

Jimm_Alumni

I have had B12 deficiency and it is not pleasant. It should be a simple blood test however, and if it is B12 deficiency they can give you injections that will help resolve that. Hopefully it is something that simple, but do let us know how you are getting on @edartmoor!

mummabear1001

I also have b12 deficiency and anemia so I have injections every 3 weeks. I am being tested for POTS next week at my GP surgery as the cardiologist isn’t interested and Says I have had all of the tests! I’m waiting for my zio patch heart monitor results as I have just sent that back after 2wks wearing it (not fun as allergic to the tape) I have been diagnosed with FND and am waiting to see a specialist so I can understand more as I have right side weakness and my arm and leg won’t do what I want it to do. Just standing up my heart rate jumps and basic everyday tasks such as brushing my teeth my heart rate jumps to 170bpm!! Numerous ambulances to a&e and always sent home. My last trip by ambulance was last week, 12hrs waiting to see a doctor just to be sent home!! My feet turn purple just standing up and right now my bed it my safe space which is a sad and lonely existence.

Which cardiologist did you see in London? I am in Kent so it will be a struggle to get to London but I am going to go down the same private route as you so I can get answers, even though I seriously can’t afford it I need answers and a caring professional to listen and understand rather than being told I must be depressed and anxious because I keep crying!!