Around this time last year I was experiencing extreme fatigue, whole body aches, dizziness, headaches, shortness of breath, ringing in the ears, blurry vision and tremors in my hands. It got to the point where I couldn’t even walk up the hallway. After an MRI and numerous blood tests there were still no answers and I had become bedridden. One night I woke up with pain in my chest and heart palpitations, I managed to get back to sleep however in the morning it was happening again and I started to feel numb in one side of my face so my husband drove me straight to emergency.
I ended up being admitted and stayed in for over 2 weeks. I had a lumbar puncture, more blood tests, heart rate monitoring and regular blood pressure checks. I have always had low blood pressure but it continued to stay low. What they did pick up was the spike in heart rate everytime I stood up. I remember when I would tie my hair up the nurses would come running in as my HR would jump up to over 150bpm. Thats what it would normally sit around on a 10km run.
They ended up diagnosing POTS (Postural Orthostatic Tachycardia Syndrome). Another name they use is dysautonomia, which means dysfuntion of the Autonomic Nervous System. Each time I got up, the blood would pool in my legs so my heart would speed up to try and pump it back up. I ended up finding an amazing POTS specialist who just happened to be on the Gold Coast and has a special interest in this area as his wife also experiences this. He refered me to have ultrasounds done on my veins and suspected vein compression due to the HR spike when lifting my arms up to tie my hair. He was right! My subclavian vein (just under the collar bone) was 90% compressed when I lifted my arms up. I also have politeal vein compression (behind the knee) when standing straight. When these veins are compressed they also cause a release of catechomamines (adrenaline and noradrenaline) which put my nervous system into the fight or flight response (sympathetic nervous system).
I was also seeing a cardiologist who prescribed beta blockers to slow my HR and have been taking them for nearly a year now. I have been wanting to come off them for a while but have been a little scared to how my body will react. The beta blockers have side affects such as fatigue, dizziness, low blood pressure and depression. I wake up every morning feeling like I haven’t slept and I still experience fatigue, nausea and dizziness daily. I have decided that I don’t want to keep feeling like this so I am starting to wean of the medication and will try and manage my symptoms naturally.
I have obviously always had the vein compression issues but then with extra stress and overwhelm added on top it was too much. The main thing I need to stay on top of is turning down my sympathetic nervous system. Deep breathing, meditation, exercise, healthy diet and not ‘over doing it’ are all things that I need to focus on everyday. At the time I didn’t realise that I was over doing it. I was running my business, getting my son ready to start his first year of school and my husband had just had a shoulder reconstruction so I was looking after everyone except me. I remember feeling extremely overwhelmed but I just kept soldering on. I will never let myself get to that point again.
I won’t ever get back to feeling 100% how I used to but I am so grateful that I can still do most of the things that make me happy. I am so much more aware and in tune with my body. I am learning to slow down and say no more which is hard for a go getter like me! Please slow down and listen to your body, if you don’t your body will end up doing it for you.