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Naomi's Autoimmune Epilepsy Story
When I was in my 20’s, I started to have strange, brief dream-like experiences while I was awake. It was as though my brain would suddenly play a bit of a TV show in my head and I would become preoccupied with that instead of paying attention to what was in the room around me. This would only last for several seconds, and then fade away. I would feel a bit annoyed that I could not quite remember what the TV show was, but there was a familiarity to it.
I would have these moments perhaps once every few months, and then a few times a week, each few months. Eventually, I told Mum about them, and she suggested I tell my GP. My GP referred me to a neurologist with the phrase “altered state of consciousness” on the referral.
At the neurologist’s rooms, I had an EEG that seemed uneventful, and then saw the doctor afterwards. He told me I had epilepsy and I had to stop driving immediately. I was diagnosed with temporal lobe epilepsy at 31 years old, 12 July 2007. I was told I was having “simple partial seizures”.
I already had type 1 diabetes since I was 14 years old, and was predisposed to a few other autoimmune conditions, so I wondered if this epilepsy was autoimmune. The neurologist I was seeing at the time of diagnosis told me it was not autoimmune, but in recent years I have had a number of specialists consider it to have had an autoimmune origin.
Naomi's seizure experiences
Nowadays, the kind of seizures I have would be called “aura” or “focal seizures”. When I have a seizure, I will suddenly feel disconnected from the room, in that I can still see the environment around me but it will seem like it is in 2D instead of 3D, and somehow not quite real, as though I’m the only person who is real. I tense up immediately and grab hold of something in front of me, like the table, to steady myself as I get a fright from how suddenly this experience starts.
There might be a bit of a dreamlike image that feels like a memory or a tv show playing in my head, and there’s a familiarity to it as though I’ve seen it before but can’t quite place it. It is not clear enough for me to recognise details or to figure out where I know it from, and fades away in seconds. Within a few seconds I will realise it is another seizure as I have had hundreds of these now, and so I will change from frightened to a bit annoyed or disappointed that it is happening again. My eyes will be staring slightly to the left and not focused on anything. It is quite hard to pay attention to any conversation if someone is talking to me – I can hear them although they seem quiet. I can’t turn my attention easily to them to concentrate on what they are saying and it’s hard work to talk or to come up with a response that suits what they’re asking me. I usually will say “Seizure. Give me a minute.”
The last part of the seizure is some tension or tingling that moves down my left arm and leg – it sometimes moves to my right leg too, and doesn’t feel the same every time. When I feel this symptom, I tend to focus on it as I know this is the last bit of the seizure and it will be over soon, and I will breathe slowly to calm myself down.
If I have one seizure, sometimes I’ll have a normal amount of energy afterwards and can go about my day. Other times, and particularly if I have more than one on the same day, I will be exhausted afterwards and need to sleep for 3 or 4 hours.
My biggest year of seizures was 2015 when I had about 145.
We’re nearly halfway through 2021 and so far I’ve only had 19 🙂
I saw a few different neurologists in Brisbane and tried nearly every single anti-seizure medication. I found that I got side effects from most of the medications but not much success with seizure reduction. In fact, when one GP wouldn’t prescribe me my usual antidepressant medication, my seizure frequency increased significantly for the next couple of years – this was both when I was on no antidepressant and when I tried a different antidepressant. Pleased to say I found a different GP who agreed to prescribe my original antidepressant and my seizure frequency reduced somewhat. There is a lot to be said for the overlap between stress / poor sleep / poor mental health and increased seizure frequency.
I then heard, in 2016, from a GP about a neurosciences centre at the Mater Hospital that specialised in epilepsy treatment. The neurologists and other staff there conducted several tests to consider whether my epilepsy was indeed autoimmune. It was difficult to tell because the same antibody would be present in a type 1 diabetic which I am, however they did find two antibodies present in my CSF (the spinal fluid from a lumbar puncture). I was told that the only way to really tell was via treatment and then seeing if I have a reduction in seizure frequency. So, we trialled IV immunoglobulin for one year in 2017, which was unsuccessful, and later trialled Plasma Exchange therapy for one year from 2019-2020.
Surgery to remove part of the right temporal lobe was considered, but would not have been appropriate if the cause was autoimmune as there would be a risk of the antibodies simply attacking another area of brain tissue instead. Another factor to consider is that if I did go ahead and have surgery, I might have lost a lot of my abilities in music. I can sight read really well and have close to perfect pitch. So, to lose that would have meant losing a huge part of who I am.
As of the start of 2020, I have been trialling a low gluten diet and am on several vitamin and mineral supplements as I have autoimmune atrophic gastritis with pernicious anaemia, and I am genetically predisposed for coeliac disease (but do not yet have the clinical presentation of this). I have continued to take one anti-seizure medication under the neurologist.
Since 2009, I have been on clonazepam, which it turns out shouldn’t be a long term medication. No one seemed willing for me to be weaned off this in recent years because of the risks of increased seizures and of mood swings, but I wonder what problems being on it for so long might have had! I negotiated a withdrawal plan in which I was on an increased dose of my antidepressant and I gradually decreased the clonazepam dose across four months, under the care of a neuropsychiatrist and finally finished this medication in April 2021. Very pleased that it is over!
Giving up driving in 2007 was hard, for a few reasons. For one, I did not want to be asking others for a lift to social events, particularly if it was out of their way, and I had liked being quite self-sufficient up until then. I had played keyboard for community events, choirs, and musical theatre, and so my response to losing my license included a significant decrease in how much I participated in these things I loved. When the epilepsy was at its worst, I would sometimes have seizures while playing the piano, which was very upsetting.
I have developed some memory impairment, which I have been told can occur with temporal lobe epilepsy. Episodic memory is where the loss is, which is where there are past memories that are simply missing from my memory bank. One that is quite obvious to my parents and me is a holiday to Cairns. I can see photos of a trip I went on with some relatives, and when you might have memories come back to you when you see a photo and start swapping stories with each other like “Oh, that’s right. That was when such and such was happening, and so and so was there.” I don’t have that experience. I recognise the people in the photo and that it is me sitting with my aunt, but it doesn’t trigger any recollection of the context or the place.
Of course, it is hard to pinpoint what I am supposed to be able to remember and what is fair enough to be unable to recall now that I am in my 40’s.
An accomplished woman
I have been a registered psychologist in Queensland for almost 20 years, accredited as a supervisor and endorsed in counselling psychology for 10 years. I am a creative person. I have played piano my whole life, and I picked up the flute and piccolo during school, and later found myself interested in singing and song writing as well. I was employed or would volunteer in the orchestra for local theatre companies, and have been the regular rehearsal accompanist on and off for a number of community choirs. Recently, I have taken to script writing, would you believe!
Connecting with Epilepsy Queensland
Ironically, I think I have been to a few EQ events in the past and now I cannot recall much about them. Then, recently, a friend whose father has epilepsy invited me to go with her to an EQ meeting, and I saw one of my previous neurologists there, and also a few other people I knew from other contexts. It’s a small world after all.
I have recently had some contact with EQ through the Facebook page, after seeing some of my treating doctors in a photo. Very pleased to see the positive work they’re involved in.
I think epilepsy is a tricky one but we are in the midst of learning a lot more about autoimmune conditions. We shouldn’t really group all seizure conditions under this umbrella called “epilepsy” as having just one name makes it sound like there’s only one cause. Thankfully, we are learning more about how there are indeed many different causes and so the treatment can be chosen that fits the cause.
When I was diagnosed, it felt very much like there was no understanding of what caused epilepsy, and that I was being tried on drug after drug, like I was being experimented on. It was a case of I was to try a medication and then we would all watch me to see what happened. I am not sure if things are much better today than they were, for those who are not in the autoimmune group.
I would encourage people with epilepsy to be assertive with their doctors, to ask for information, good information, about their diagnosis and their treatment plan. We can tend to either put doctors up on a pedestal like they know everything, or else be disillusioned and want to dismiss what they say completely. Don’t do either of these things. Instead, be honest with your doctor, and say if you’re frustrated or angry or scared or confused or embarrassed. I often write a list of things and take the list to my appointments so that helps both the doctor and me do everything, and also so a doctor can say if some things are meant to be looked after by a different doctor or at a different time. I encourage you to ask your doctor to work WITH you, as teammates, because your brain, where YOU are, is worth treating well.”
N.B The photographs of Naomi in hospital, including the bruised arm, are from the plasma exchange therapy treatment Naomi endured in 2019.