I would like to have some more information on Pots?

I was diognosed with Pots when I was 14.

One day I was sitting in the house on the computer with my mum looking at Christmas presents ect. ...(I had not long had lunch) and all of a sudden I felt funny so I went to the toilet and when I came out everything was all blury and my hearing went funny I managed to get to my mum and I said "mum I don't feel well"

Next thing I know I have my mum screaming my name in my face "Megan Megan wake up" The ambulance came and took me to hospital and that's when they diognosed me with pots. I was put under a consultant they did some tests because I was passing out every day even twice a day at times it was horrible! But they couldn't do anything and thought I would grow out of it. So when I turned 16 the consultant said I didn't need to see her anymore. So about 6 months later after not passing out hardly at all! A few weeks ago I started passing out again like every day and I don't get why it has happened again all of a sudden! My symptoms are:

Heart palpitations

Blurred vision

Fainting

Weak

Chest pains

One minute I'm boiling next I'm not

Hyperventilation

Hands and feet are always freezing cold

Insomnia

I was wondering if someone could help on what to do? I would really appreciate it if someone could give me some advice on pots and what to do?

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4 Replies

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  • Hi Megz 971

    I have been all around the country to get help. In the end I have ended up @ The Brompton Hospital in London under Dr Salukhe & his team.

    Have you checked that your pain killers are not causing the Insomnia as some pain killers will cause this.

    The people at the Brompton are really good.

    Have they fitted you with a Implantable Loop Recorder with a home monitor system to avoid the stress of going backwards & forwards to the hospital.

    To check to see what is happening with your heart before you faint ?

    Hope you get some help soon.

    All the best.

  • Thank you for your advice helps me a lot.

    At the moment im on some medication for my stomach because I have crohn's disease I had an operation 9 months thats when they found the crohns.But the medication Im taking has sleepy side affects so thats really helping with insomnia at the moment. I think they might of fitted me with a loop recorder but when I had it nothing happened to me whilst it was on.

    Thank you again with your advice I really appreciate it.

  • As you are 16 years old, not necessarily under paediatrics now and your symptoms have returned after six months, I suggest you talk to your GP regarding a referral to a consultant who will be able to formally diagnose and perhaps prescribe medication as there are drugs that can help sufferers lead a more normal life. Please email info@stars.org.uk if you would like further guidance.

  • Ok thank you, I went back to the GP and shes doing some tests on me but when I see my GP I will ask about her referring me to a consultant. Thank you for your advice.

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