A picture

Previously, I posted about how I've been doing things to improve my health since lockdown. Once I recovered from an infection last March, I re-started the couch to 5k and slowly built up to 5k and beyond. I can now run a 10k easily and plan on increasing my run times once the weather warms up a bit with the goal of regular 15 to 20k runs. 

I also have been incorporating other types of workouts depending on my mood, which may include weight or strength training, yoga, ballet, dance workouts, aerobics. And I walk pretty much every day in addition to all of the above. 

Expanding my cooking horizons has become a real highlight of lockdown life, and my diet is healthier than it's ever been before, filled with tonnes of vegetables and fruits, healthy vegetarian proteins, and very little fried foods. 

My alcohol and caffeine intake is moderate. I have one cup of coffee each morning (occasionally two on Fridays and Saturdays) and I like to have a drink, sometimes two, of an evening (but not every evening).

Recently, I bumped into a friend of mine while on a run and he described me as 'the picture of health' and I had to agree. I feel really good - strong, energetic most days, and all of the exercise has improved my mental health considerably. But a picture can hide as much as it conveys. It reminds me of when my dad used to respond to compliments on his youthful appearance with, 'I'm rotting from the inside out'.

I've been battling a frustrating medical condition that is not only rare, but invisible. And it's not the first time. 

Back in late 2017, after a trip to Venice, I came down with a bizarre vestibular issue that made me feel like I was on a boat. All. of. the. time. For several months, I walked around with sea legs and felt myself floating on a non-existent ocean as I tried to fall asleep. I even suffered with sea sickness from it. Finally, I was able to gradually rid myself of the affliction through vestibular physical therapy. Then, a year after my remission, it came back and lasted nearly another year. While I still have balance issues caused by damage to my right inner ear, I'm off my boat and can mostly ignore it in day-to-day life.

So, when I started having pain and fullness in my ears last year after a bad cold, I figured it would go away. When it didn't, I went to the GP who gave me antibiotics for a middle ear infection. The pain eased, but I was left hearing the sound and sensation of my heart beating in the left side of my head. It's called Pulsatile Tinnitus and it's constant. The only time I don't hear it is when other noises drown it out. But I began to notice other things, like tingling on my head, mostly on the left side. Fullness, neck pain, eye spasms, headaches are others, and for the past month I've been trying to ignore other worrisome symptoms such as dysphagia (trouble swallowing) and an ache in my left leg.

Since last summer, I've had two ENT consultations, an MRI, and MRA, a dental checkup, several craniosacral therapy sessions, a full blood workup, and I've tried taking a month off my ADHD medication. None of those things produced answers or a cure. I joined a Facebook group for people with Pulsatile Tinnitus and began educating myself on the most common causes. 

Pulsatile Tinnitus (PT) isn't a diagnosis; it's a symptom of something else, and it's usually nothing to do with the ear, though many make that assumption. As I started reading people's PT stories, I saw how difficult it is to get a diagnosis. Most of the people in the group have spent years getting to the bottom of it. But an alarming number, when they finally discover their diagnosis, have life-threatening or serious conditions, usually vascular in nature. There was even an episode of House about it!

My symptoms are most noticeable first thing in the morning (from the quiet and the pressure of my head on the pillow) and late at night (also from the quiet). This can make sleeping difficult, not just because of the whooshing noise in my ear, but also because I often find myself unable to sleep, stuck in an ADHD hyperfocus, looking online for answers to what's wrong with me. The panic caused by googling symptoms is something we've all experienced. After months of dealing with a mystery condition, you can go a little mad. And then, add to that the condition itself, a constant whooshing in my head of the blood flowing through my body, and it's a wonder I can function normally.

I made it my mission to find someone in Ireland who wouldn't fob me off as my GP and ENT had. I started to research the types of specialists who diagnose the most common causes of PT. Finally, I found a news article about a consultant in Dublin who I thought may be able to help me, and I emailed him to see if he had dealt with PT. My heart leapt when he responded that he had. He told me the main conditions that he would want to rule out, and when I saw that they were all vascular, I made an appointment to see him in person. We discussed my symptoms and previous scans. He looked in my ears with a special microscope just to be sure I didn't have a specific ear issue that can cause PT. He said that he wanted to send me for a CT angiogram to check my arteries and to rule out fibromuscular dysplasia (FMD). I had come across FMD in the Facebook group but I didn't remember what it was. He wrote it down and told me to look it up when I got home. I left feeling comfort in the knowledge that I'd found someone who may be able to help me. I felt hope for the first time in a long time. 

I didn't bother to google FMD for more than a week. When I did, I have to say, I wasn't thrilled, especially when I reviewed the list symptoms, most of which I have. I keep telling myself that just because I have most of the symptoms, doesn't mean I have it! But then I think, if it's not this, then what is it? All I know is, I've accepted that this isn't going away, it cannot be ignored, and I will not stop until I know what's going on. 

Tomorrow, I'll be going for the CT angiogram. I didn't google that either until I was discussing it with my manager at work and he googled it. That's when we both realised how naive I'd been only taking the morning off work. It's definitely a full day off from work procedure. 

Why am I writing all of this? A couple of reasons. First, because I want to say to anyone searching for a diagnosis to any sort of medical issue, DO NOT GIVE UP. And secondly, because while I'm doing really, really great in so many ways -- better than I've ever been in my entire life, in fact -- I'm still having a hard time with this one aspect of my life and I'm suffering physically and mentally. I'm afraid of what lurks behind this picture of health. I'm afraid that I'm not actually healthy. I'm afraid that I'll drop dead before I figure out what's wrong with me. I'm afraid that I will have to give up this new active lifestyle that is part of who I am now. I'm afraid that I deserve this. I'm afraid that I'll never know, like so many people with PT and other conditions. 

But at the same time, I feel incredibly OPTIMISTIC. I swear, I do have a balanced view. I'm taking it in stride as well as anyone could. I'm confident in my new doctor. I'm confident that I can do whatever needs to be done to cure myself once I find it out. I'm grateful that I have amazingly supportive friends and family to help me in all kinds of ways. And now, we'll just have to wait and see. Wish me luck!

xoxo