Help with diagnosis

Hi. I wanted to send this post to see if anyone can relate to my symptoms or has any advice regarding them, unfortunately I posted it in the reply section by accident... I have now copied the message and trying to post it again.

I experience a collection of symptoms which I have consulted my GP about many times. In his opinion it may all be caused by anxiety and his latest action is a referral to psychiatric assessment to see if it is all in my head! I am so sorry to sound so cynical but all this is really draining. I suffer from crippling exhaustion/ fatigue after any small activity, like a having a shower, my heart rate increases whenever I change posture, I get pain in my right eye from lights, sun and artificial, my right pupil zooms in and out like a faulty camera lens, my brain can't retain information, I am unable to remember words or finish of sentences, I get a lots of pain in my neck, across the shoulders and my back while sitting and standing and which completely disappears when I lie down, I can't stand still, instead I have to constantly move around or shake my legs (I have become the fidgety 7 year old again)! otherwise I feel lightheaded, tightness in my chest, short of breath and my heart rate rockets. I have had permanent gut bloating/ distention equivalent to someone who is at least 6 months pregnant for the past 4 years, odd, when you consider that I am 24 year old male and before my problems started I was an athlete. I feel full after few bites of food, nauseous at times, multitude of gastro intestinal symptoms, too many to list, my hands and feet are like icicles, my nail beds in my hands are blue and I seem to get blood pooling in my legs as well. When I was around 10 years old I suffered from daily migraines for about 6 months without apparent reason, they stopped and what followed was episodes of fainting also without known cause. I ended up losing my ability to retain and hold information which has had huge impact on my education. When sitting down I suffer from momentarily blackouts and oh boy...I yawn as much as 30 times in 60 seconds! I have been accused of being a timewaster in college as constant yawning comes across as boredom. I also get friends and strangers constantly asking me if I am feeling ok due to my skin colour as it has greyish/bluish tint to it. The impact of these symptoms on my life is unbelievable and I am hoping to find answers and finally diagnosis. If anyone is willing to share their experience and advice it is well appreciated.Thank you for reading my story.

6 Replies

  • Hi my daughter is 17 and has all the same symptoms you have. It has taken us a while but finally got a diagnosis of Vasovagal with elements of POTS. Hopefully you will get sorted soon please don't give up. My daughter is now on Midodrine and although she still gets exhausted and feel nauseous she copes very well and manages some quality of life. I hope this helps

  • Was your GP knowledgeable of POTS or did you get a referral from a hospital specialist?

    My GP dismisses possible suggestion of POTS because I believe he has no knowledge of the condition. Otherwise wouldn't the GP explain why they disagree with your suggestion?

  • Hi Gaga our GP doesn't know anything about POTS. I have just been persistent in requesting hospital referrals. It has taken us almost 3 years to get the correct diagnosis. We have seen many hospital consultants including cardiologist who couldn't explain my daughters symptoms. Finally we got a referral to a different cardiologist who looked through her notes and examined her, he diagnosed her at her first appointment with him. Be persistent once you find the right consultant life gets a lot easier :)

  • I suffer from gastr intestinal problems and severe bloating but have never made the connection with POTs. How is bloating related to tacicardya/racing heart?

  • Bloating might not be necessarily directly related to POTS but I've read of POTS sufferers having gastro problems including the bloating. After all POTS is just one form of Dysautonomia (Autonomic Dysfunction). The thing is bloating as an individual gastro symptom can be due to a multitude of reasons. I myself am still trying to get down to the bottom of it too with the help of my gastro doc. A Gastroenterologist could help rule out any main causes as it seems to be causing you trouble. Good luck!

  • So sorry to hear your misery poor you I am sure it is not in your head and I recommend you try the POTS UK website and you will find so many people with your symptoms and recommended Specialists although not too many about depends where you live! A lot of people go privately to get a diagnosis. Good luck keep us posted I am sure you will get there. M x

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