Dysautonomia and Me: Rachel’s Story

I remember being 16 years old and commencing my first drug to help manage my heart rate and endless dizziness.

It was strange, because I recall asking my friends if their hearts felt the way mine did. It quickly made me feel isolated as it became clear that something wasn’t right with me. Who knew at that moment that this was only the beginning of a very long and tedious journey to discover what was truly wrong with me?  

Doctors quickly became frustrated as beta blockers were tried and tested, and no positive effects occurred. My GP started to run out of options.

I was 18 years old now, and I was finally referred for cardiac testing at my local hospital.

The hospital carried out routine tests such 24 hour ECG, spot check ECGs, and structural scans.

I looked normal. I was always happy, smiling and very chatty with my typical sense of humour, so for the consultant to see me like this, with the complaints I had– you can see why I was not taken seriously. In all fairness, I would tell any reader with a chronic illness to not lose that incredibly positive mental attitude and sense of humour, because that is was kept me grounded and feeling more like myself when my own body didn’t. 

I began passing out frequently in public places, on my own, and at home. My symptoms started to get worse. I noticed that my heart rate would feel so fast and it would hurt me. I noticed that I began having more and more issues with my GI tract. I struggled with exercise; I was not able to tolerate it and grappled with being labelled as ‘lazy’. I remember struggling with my own body temperature and having these episodes of ‘flushes,’ as well as drops in temperature that I couldn’t raise again. I could not understand what was wrong with me. The GP claimed I was just ‘anxious,’ but I knew it was more than that. 

I was 20 years old now, and I pleaded with the GP to send me to one final hospital where they have extensive testing that isn’t available locally.

He reluctantly agreed.

I attended the clinic and was greeted by an American consultant, who had been flown in temporarily from the states to cover a few clinics and surgical procedures. I was scared that this consultant was going to laugh in my face just like the others. This was my last chance to tell someone how I felt and that ‘something isn’t right’ in the hopes of being heard and helped, so I laid it all on the table. I mustered the last ounce of courage I had and I told him everything.   

Photo courtesy of Rachel

Just like that the consultant told me he knew exactly what was wrong with me, but needed to be certain, and so an extensive 6 months passed for tests, procedures and investigations. It really was an exhausting 6 months. I had TTT’s, sleep-deprived EEG, bloods, extensive MRI scanning, CTs, procedures and electro-physiology performed in the cath lab.

I am 21 years old when I see my consultant again, and my life would never be the same after that appointment. My consultant told me I am suffering from Dysautonomia, specifically NCS (Neurocardionegic syncope.) However he believed POTS (Postural Orthostatic Tachycardia Syndrome) was causing me further significant problems.

I was started on specialised drugs then and there, and was referred to a colleague of his in Central London to the Autonomic Unit for a series of 3 days of cardiac work up to fully get the diagnoses I need. 4 months later the news is in. My consultant in London and the American consultant I had recently met had reported back that I, indeed, am suffering significantly from Dysautonomia and indeed NCS and POTS! We later discovered many other functions of my system were greatly affected by Dysautonomia, and I was started on even further treatments to help manage the Dysautonomia and help me regain some quality of life.  

I am 30 now and I am still followed up by the London Team with frequent support and assistance from my consultants and especially my family and friends.

I currently have a 2nd degree heart block due to the long term use of these drugs to stabilise my POTS so ongoing investigations are under way to help me. 

My life is far from perfect and self care is more important now than ever because of this condition however I am in a better position now because I pushed, persevered and challenged medical professionals for 6 years. I know my body better than anyone else and that was what drove me to fight for the testing and the answers I deserved. I am now a Paediatric Associate Practitioner and trying my absolute best to give back to the children of this generation because what I went through with my health when I was there age is unforgettable and haunting. I want to be just like my American consultant – he changed my life simply by believing and listening. Its my turn to try do the same.

 This contribution comes from Rachel, age 30, from London.


To learn more about dysautonomia, check out our partners, the Dysautonomia Advocacy Foundation.



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