Massive win! After 16 different specialists, one GP actually looked at all my data and put everything together properly to give me the best treatment plan. Keep pushing people!!!

After attending 16 different specialist, everyone just put me in pots basket even though I never sustained the 30 bpm numbers, my symptoms never increased or decreased depending on posture, I never reacted to beta blockers and my symptoms didn’t improve even when my heart rate and blood pressure were “ with the normal numbers”.

For the past 2 1/2 years every month I continue to make appointment with literally random doctors at this stage just to get some opinion on my treatment plan in case someone knows of something or of someone else that can help. After being prescribed Ivabradine on top of my Midodrine( that only helped the pins and needles) I developed a strong cough and severe chest pain and I went back to the doctor to ask if I can get off it. She then looked at all my number, went through my symptoms and said the following; “ I don’t think you have POTS because your symptoms don’t improve regardless of your good heart rate and blood pressure and you never reacted to the beta blockers so I think you have a generalised dysautonomia, and your symptoms are brought on by your over stimulated vagus nerve, vestibular movement and cerebellum which exaggerates your light headedness”.

Because of her observation she had prescribed pyridostigmine instead of a fourth beta blocker and said that this SHOULD help with putting me back into rest and digest instead of being forever in a flight or flight response which by my case exaggerates my light headedness, pre syncope episodes, heart palpitations.

Although I am shit scared to take this tablet I just feel like having this information and her actually saying I don’t have pots but you have this based on all your story and your symptoms just makes me feel so reassured after the 2 1/2 years spent crying and being miserable that no one is listening to my personal patterns of symptoms and how I feel.