I’ve been dealing with a migraine since I received a head injury at 15. I’m almost 25 now. That’s almost 10 years of finding migraine medicine, body getting use to the amount and starting all over again. That’s 3-4 headaches a week, that’s migraine attacks lasting anywhere from 1-3 days. That’s migraine side effects of nausea, pain in my legs, anxiety, light sensitivity, that’s depression. I’ve been taking medicine in the evenings but sometimes it doesn’t fully help to where the headaches or migraines don’t show up. Sometimes I have to take 600mg Ibuprofen everyday on top of the normal meds I take to try and prevent anything in the mornings. Light headaches I can try catching it in time and vaping some CBD liquid but sometimes a migraine attack suddenly shows up or I wake up in the morning (like today) and it hits. It’s exhausting and I’m debating what to talk to my doctor about because I don’t know what to do and it’s affecting my mental health but I haven’t talked to her about it yet. I’m so depressed lately and worried my future boss doesn’t like dealing with my health issues when I have to call in work (like today) and go to the doctors. I’m worried she won’t fully hire me on for my internship and job training… I’m tired of the pain of the headaches and migraines and everything that goes with that and I am just tired of the feeling it leads to depression and being unhappy…
Also having to try and find a new neurologist since my old one doesn’t work there anymore. It’s just all so discouraging…
"It's all a lot right now." I don't even want to know how many times I have said that lately. Everyone in my inner circle right now keeps telling me how impressed they are with how strong I've been, but I definitely don't feel that way most of the time. I feel like I am barely staying afloat, have been a prisoner in my own body (moreso than normal), and have been forced to stay in my home as if it were the early days of the pandemic. Dealing with all my chronic conditions and now this injury over the last couple of months has definitely been overwhelming. I feel awful so many days and there is nothing I can do about it most of the time. The head injury I sustained has been super challenging as everything in my body seems to have been injured with it and/or my conditions have just revved up in symptoms as a result. I feel so helpless with everything. I can't be there for my students since I'm not allowed to work, I continue to not speak with my family (see past posts for details on that one), my best friends live in other states, and the timelines of everything are draining in themselves. I have no idea if/when I will be able to return to work before the end of the school year and in what capacity. I have been doing/will be doing various therapies. They are exhausting. For someone who lives in a permanent state of tired anyway, this has made me feel robotic. Everything overall is a lot right now. I am sick and tired of being sick and tired!
Apathy as a Protective Response
Im still healing from this concussion… spent a couple of days offline. Still minimizing screen time although that is hard for me (I’m sure it is for many of us!). Driving is also a challenge if I travel for more than locally in my town. Definitely trying to take it easy but it’s hard when I have a tendency to put pressure on myself…. #CheckInWithMe #Depression #HeadInjury
Why am I hurting my marriage
Before we get into the nitty gritty details of life with postural orthostatic tachycardia syndrome, let’s begin this article with a quote from Winston Churchill. It is important for you to get to know me before my health condition, as I don’t like to be defined by my chronic illness; a fun fact about me is that I love reading inspirational quotes. They can be interpreted in many ways and make us feel hopeful in dark times. For where would we be without some heart-felt literature that really speaks to us? As Churchill once said, “if you’re going through hell, keep going.” Great advice! I try to remember quotes like this one to cheerleader myself through tough health days.
Now, let’s begin talking about what you really want to read about – the struggles of living with postural orthostatic tachycardia syndrome. postural orthostatic tachycardia syndrome is a notoriously difficult condition to manage, as there is no gold standard treatment – it’s a case of trialling various individualised treatment options to find out what does/does not help (Carew et al. 2009: 21-22). Arguably, the most dangerous postural orthostatic tachycardia syndrome symptom is fainting, due to the risk of head injury. According to POTSUK (a UK charity that raises awareness for postural orthostatic tachycardia syndrome) “approximately 30-60% of people with postural orthostatic tachycardia syndrome faint.”
I am one of the 30-60% of those that faint. It can surprise me at the most unexpectant of moments. I can get out of bed in the mornings, walk to the bathroom and boom! Before I know it, I am on the floor staring at the bathroom ceiling, only now even more desperate for a wee. The fear of fainting and hurting myself is high. The fear of fainting and not regaining consciousness is high. And yes, the fear of fainting in public is higher, with no choice but to accept help from passers-by who may not have my best interests at heart.
Having heard about such a debilitating symptom, you must think, “fainting must be the worst symptom for someone like you with postural orthostatic tachycardia syndrome, because it’s so dangerous.” Yet in reality, fainting is not the worst symptom for me. Let me explain. Imagine you are walking twenty metres from your car into work – you are panting and feel like you’ve just ran down the street. Then, you climb up four flights of stairs, which you have no choice but to sit on halfway, since you simply cannot catch your breath. Now for the next twelve hours you walk around at work, whilst wearing a mask, feeling completely rushed off your feet and gasping for breath. All you want to do is sit down and catch your breath but you can’t.
Does just reading this make you feel breathless? That is the reality of dealing with my most severe symptom, breathlessness. Breathlessness from postural orthostatic tachycardia syndrome cannot physically cause me long-term damage, fainting can. But you see, although fainting is potentially hazardous and unpredictable, it is short-lived. I fall, pick myself up and carry on with my day. However, breathlessness is the symptom that makes it difficult for me to get through each day. For me it is the ruthless, draining, persistent nuisance that contributes to my daily struggles.
There are techniques I try to help deal with my breathless, but I still have yet to find the best way. I stand infront of fans, I pull my mask down and poke my head out the window to be able to feel the cool, crisp air on my face. The cold seems to help, and alongside this I try various slow breathing exercises. Those truly are the best techniques that I have found so far whilst in my postural orthostatic tachycardia syndrome journey, but my journey is not over.
Thank you for reading this article. I hope that whilst reading this you were able to relate, empathise or learn something. Please remember, people with postural orthostatic tachycardia syndrome‘ experiences differ, some symptoms may be more bothersome for some people than other symptoms. This is just my reality of living with postural orthostatic tachycardia syndrome over the past five years. I did not want to write an article sugar-coating my reality of how living with postural orthostatic tachycardia syndrome can still be beautiful. Of course a life with postural orthostatic tachycardia syndrome is still a wonderful life, but it does not mean I should dismiss the severity of the challenges I face daily. Sometimes sharing your reality can help others feel less alone. Let’s end with my favourite quote for today “If you’re going through hell, keep going” (Winston Churchill).
Carew, S., Connor, M., Cooke, J., Conway, R., Sheehy, C., Costelloe, A., Lyons, D. (2009) ‘A review of postural orthostatic tachycardia syndrome‘ Eurospace, European Society of Cardiology. available from
POTSUK (2021) ‘Symptoms.’ available from