After leaving the hospital in November, I soon had an outpatient neurologist appointment in January as well as outpatient physiotherapy appointments to work on balance exercises.
Physio mainly consisted of completing abdominal exercises, in the hopes that a strong core would help me keep my balance better.
Between physiotherapy sessions, I slept a lot and struggled with severe headaches. The morphine helped to just take the edge off when the pain got too much.
We had Christmas at my in-law’s and a couple weeks later, the long awaited neurologist appointment came.
I had barely sat down in the waiting room when I was called.
I should mention that I was quite anxious. The kind where you feel like it’s hard to talk and you just need time to collect yourself.
You see… I hate meeting new doctors. Doctors hold so much power over you and when you are vulnerable and ill, finding out that you and a particular doctor don’t get along, is a scary thing. I’ve had enough bad experiences in the past to make me nervous now whenever I meet a new physician.
I sorely missed having that time in the waiting room to collect myself.
We sat down in the exam room and he indicated he wanted me to explain what was going on. So, I explained. I explained that I had been having dizzy spells and headaches. That I had these episodes, and that I ended up in hospital.
He instructed me to walk across the room without my walker so he could assess my gait. Fine. I get that, but I knew that I would lose my balance. I told him I was worried and he just told me to do it, without trying to make it safe so that I wouldn’t fall.
Which, of course, I did.
I ended up grabbing onto the rubbish bin, and then the exam table so that I didn’t end up on my bum.
Lovely. My nerves weren’t exactly calmer at this stage.
He continued to try and do some visual tests and got frustrated when I couldn’t do them without my glasses.
More tests and then he tells me that I have Functional Neurological Disorder and carries on and mentions Conversion Disorder.
Now, I have a MSc in Psychology and have run into those terms before. Conversion Disorder is the modern term for Hysteria.
Hysteria is the term for a group of symptoms that women, primarily, suffered from. The symptoms were sometimes from real conditions that were simply unknown to physicians at the time, or stemmed from physiological issues. Hysteria is no longer recognised as a legitimate condition, however its cousin Conversion Disorder is.
Conversion Disorder is based on Freud’s theory that when a person is under a lot of stress, their body may convert that to physical symptoms. This does not mean that someone has control over this, but that their body simply malfunctions without any conscious effort.
I stopped the neurologist at this stage and told him I knew what those things were and that I had a background in Psychology.
He proceeded to, in a tone I did not care for, explain to me what Conversion Disorder was and what Functional Neurological Disorder (FND) was. He said that FND was basically your brain and neurological systems malfunctioning, the way a software system might.
I asked him if FND was the same, or different than, Conversion Disorder, as it seemed to me that you could have a functional issue without a psychological basis.
At this stage, he couldn’t give me a straight answer (further research shows that many cases likely don’t have a psychological basis, but because the condition has historically been framed as a psychological one, it’s often not taken seriously as a physical problem. I’ve been very underwhelmed with the actual, clinical research on this topic).
At this stage I was, understandably, quite upset. I asked him how this related to my migraines. He look surprised and I reminded him that the hospital neurologist diagnosed me with complex migraines and I said that I was not happy to simply be sent to therapy and not have those treated.
He told me I was just having rebound headaches (note: I had taken periods off of painkillers and had discussed this with my GP. These were not rebound headaches).
I realised he hadn’t asked about my headaches nor had he listened to anything I had said regarding them.
I was moving past upset to livid at this stage.
I insisted that I be given some form of migraine treatment and he finally agreed. His rationale was that when the treatment failed, I could accept the FND diagnosis. He also suggested that I might want to see another neurologist in the future.
To be continued…