Mehar writes about her experience being diagnosed and living with dysautonomia. She tells us about her long journey to diagnosis, how healthcare professionals treated her and where she is now, having adapted to her condition.
This is all based on personal experiences, and it is NOT to be used for a medical diagnosis.
October is Dysautonomia Awareness Month. Dysautonomia, or autonomic dysfunction is a neurological condition in which the autonomic nervous system (ANS) doesn’t work like it should. The ANS is responsible for all the involuntary body functions. There are many different types of dysautonomia, such as PoTS (postural orthostatic tachycardia syndrome), Inappropriate sinus tachycardia, autonomic autoimmune ganglionopathy (AAG), pure autonomic failure, autonomic mediated syncope (AMS) and more.
It can take many years to diagnose dysautonomia because the symptoms can mimic another condition or could be related to external factors. Putting the pieces together often happens after the patient has experienced these symptoms for a few months or even years. In children, these diagnoses may take longer as doctors may claim symptoms are due to puberty. This is a common struggle in young people being diagnosed with dysautonomia. I was finally diagnosed four years ago (at the age of 18) with PoTs, OI and AMS.
General symptoms of autonomic dysfunction include:
Syncope or near syncope
Difficulty controlling temperature, such as excess sweating or difficulty getting temperature up
An increase or decrease in heart rate and/or blood pressure when sitting/laying down to standing
Difficulty controlling heart rate with exercise or may have exercise intolerance
Sexual issues in both men and women
Muscles weakness or tremors (with some types of autonomic dysfunction)
For many years I had symptoms of regular fainting, high heart rate and a myriad of other problems. I was once sent home from walking to school because my heart rate skyrocketed. It wasn’t until I ended up in resus after catching a cold that I decided to seek help privately as many NHS health professionals medically gaslit me. In my experience, when I approached my GP about my symptoms, I was told I needed psychiatric help because there was nothing wrong and they didn’t want to waste time on referrals and testing.
That’s when I found out I had hypermobile ehlers danlos syndrome (HEDS), 3 types of dysautonomia, and some other conditions. Around the same time as this I was due to move out for university, nearly 90 miles away. This meant doctors had a limited amount of time to run the tests I needed after my diagnosis. My cardiologist decided I needed to see a respiratory specialist and an autonomic specialist before I left for university.
I was then started on different medications. It was a trial-and-error process because we didn’t know how my body would respond. After many medication changes, I am now on ivabradine and propranolol. I trialled a standard drug for PoTS. However, this caused migraines. This also resulted in me experiencing a really rare side effect where I lost my eyebrows as hair growth slowed or stopped on my entire body and any hair would come out in clumps. It is important that people report such side effects.
After roughly 3 years, my autonomic doctor retired, and I was under the doctor who took over his clinic. Since she was new and didn’t know me, we redid some of the tests. This time, my results were a little worse than before but not by much. During these tests, we also ruled out AAG because my history pointed towards an autoimmune problem.
When I got tested for dysautonomia, after my clinical assessment, this included a tilt table test. During this, I was strapped to a table and turned upright. The overall goal is to monitor your symptoms upon standing, and so they know what happens if you faint. During the tilt table test, I also had a blood sample taken. I also had a glucose test after my tilt table. You are offered water mixed with glucose and you’re asked to drink it all.
Unfortunately, I was not able to complete the test on both occasions due to nausea. In the next test, I was asked to hold some ice to test my response to extreme temperatures to check for nerve damage. Lastly, I underwent a supine exercise test which is where you lay down and pedal a station bike. Again, I was unsuccessful at this due to joint pain. For me, testing was done over 2 days and I was asked to fast from the night before.
Fast forward, to the age of 23, I am now more stable than I first was. This is due to having the correct diagnosis, medications, and a reliable medical team to help me. Even though the journey to a diagnosis can be long and painful, the point of reaching a diagnosis and getting treatment, of any kind, is what I am most grateful for. Last year, I graduated from university, started my masters, joined 2 charities as a volunteer and will now be starting a job. Physically, I'm more active than I used to be and am, slowly, building my stamina.