So my epilepsy is back…

Warning: this is going to be a long and personal post. If you don’t want to continue reading, well…don’t. Here’s a cat meme:


When I was about nineteen, I started having these intense bouts of déjà vu. We all experience it in some form every now and again, but this was different. Something would trigger the déjà vu, like a song or a conversation, and I would temporarily just get lost in the feeling; I would literally just zone out. This would last for about thirty seconds. Afterwards, I would feel an overwhelming terror. I also became emotional, as well as feeling physically ill.

These episodes happened at least once a month. I have to be honest, I was terrified. I had no idea what was happening to me.

I didn’t tell anyone for a long time. After months of worsening episodes of déjà vu, I began to draw my own conclusions. I decided that it must be psychiatric. I had my reasons for believing this. Since the beginning of my time at university, I became gradually more depressed. Instead of attending lectures, I spent hours of the day in bed. I felt perpetually exhausted. I didn’t want to go outside. I didn’t want to talk to anyone. I constantly felt down, as if nothing could cheer me up. I was ridiculously temperamental. When I was angry, I would fly into rages. When I was upset, I sobbed uncontrollably. Jack and I both knew something was wrong, but neither of us wanted to admit it.

That first year of college was torture. I struggled with even simple day to day tasks. I rarely ventured out of my house and I was an emotional wreck. The déjà vu episodes had begun that year so it didn’t take me long to connect the two.

The trouble is, I didn’t want to talk to anyone, even my mother, who was a psychiatric nurse. I just couldn’t bring myself to admit that I was struggling. So I just kept quiet and hoped that it would all go away.

In my second year of college, I started to feel better. I made friends and had a thriving social life. Jack and I were still going strong. I felt happier. I will admit that I drank far too much alcohol so most of the next two years in college were a blur. Part of my regrets my wild college antics, but another part of me knows that it was kind of a rite of passage and I’m glad I got it all out of my system.

Despite my improved self esteem, I was still experiencing the intense déjà vu. Of course, alcohol made it worse. I then realised that it might be some sort of neurological disorder. The less sleep I had and the more I drank, the worse the déjà vu was. I also starting getting headaches. They were incredibly intense and painful and they had a massive impact on my concentration. This may sound silly, but I chose (again) to ignore it all. I was frightened and it was easier to just take pain relief and try to forget about it.

For the next few years, I noticed some other symptoms creeping into my day to day life. The most worrying of them was memory loss. Out of all of my symptoms, I’ve found this the hardest one to deal with. Important moments in my life have just completely disappeared. I went on a holiday when I was nineteen and I can’t remember any of it (and that’s not just the cocktails talking). I can’t remember many details of my graduation day or the day my niece was born. It’s an awful feeling but Jack has been so great to fill me in on all the details of the things I don’t remember.

My concentration also became very poor. I found it so laborious to listen to long stories or to focus on important news stories. The worse and worse I became, the more I ignored it. That’s when the myoclonic jerks started. For anyone who doesn’t know, these are the jerks or tremors you experience when get that “falling” feeling right before you go to sleep. These are perfectly normal in moderation; but I was getting them constantly and that’s when I finally realised that I might have epilepsy.

Something just clicked. All the symptoms pointed towards a neurological disorder. My aunt also had epilepsy, so I knew that it was in the family. The thing is, I had always feared epilepsy. My friend reminded my recently of a conversation we had had in our youth where I had said that out of all of the disorders to have, I would dread epilepsy the most. It scared the life out of me; losing control of your body.

I decided, finally, to visit a GP. My mother was now very concerned with all the symptoms I was presenting with and we knew that I had to seek help. The doctor was not convinced, however. She told me that the myoclonus I was experiencing was benign, and that the headaches were due to stress. I left her office that day feeling deflated and embarrassed; was I perhaps imagining the symptoms? Was I just being a hypochondriac?

Six months later, I collapsed. I came to, in my kitchen, surrounded by my family with no recollection of what had happened. I was badly concussed and had to be hospitalised. I had scan after scan and nothing conclusive was shown. I was referred to the hospital cardiologist (because there was no neurologist) and he tried to convince me that it was just a fainting spell. I had also fainted several times as a child.

This time, however, I wasn’t to be silenced. I knew what was wrong with me. My GP referred me to a consultant neurologist. I sat in his office in late 2009 and I told him every symptom I had experienced over the previous three years. He was particularly interested in the déjà vu.

He referred me for more tests but he told me, in very simple terms, that all the signs pointed towards temporal lobe epilepsy. The déjà vu episodes were actually simple partial seizures (I didn’t lose consciousness, but they were technically seizures). He said that the déjà vu is one of the most common auras (or warnings) that a seizure is about to occur.
The collapse was a full blown seizure. He believed that my symptoms were getting worse and that I would need medication. He had seen hundreds of cases exactly like mine and weirdly, that gave me comfort. He also said something strange to me that day, as if he could see inside my head. “The medication I’m going to put you on is also an anti-depressant. Around a third of people with epilepsy also experience depressive episodes, although I believe the figure is probably higher.” He looked at me directly in the eyes as he said it, as if he understood what I had gone through.

Walking out of his office that day, I felt strange. On the one hand, I was afraid. I had temporal lobe epilepsy and would have to go on medication. There were several side effects associated with the medication and it wasn’t going to be a pleasant few months adjusting to it. But I also felt a strange sense of acceptance; I had known this in my heart for a long time. I could now deal with it.

I was put on a tablet in early 2010 that I had to take twice a day. I took it for three years, and never had a seizure. I was very lucky. Of course, I had to make adjustments to my lifestyle. I virtually gave up drinking (except for a few nights out now and again). I got my sleeping patterns in order. I exercised more. Even though it was the most challenging six months of my life after that diagnosis (my parents had a nasty split, a family member was diagnosed with cancer, my dog of fourteen years died, I had been in hospital so missed out on a year in South Korea and other job opportunities and several other unpleasant experiences that I won’t bore you with), I came through it much stronger than I had ever thought I could. My friends would say that I try to handle everything with a sense of humour, and this was no different. I made fun of myself and you know what? It helped. I had some great support too.

So three years passed, and there were no seizures. I was sometimes a little cavalier about taking my medication but at my checkups my consultant told me that I was making good progress. He also said that within five years, he would reduce my medication with a view to taking me off it completely if I didn’t have any more seizures.

I decided after the three years that I would like to come off the meds. I felt better and hadn’t experienced any symptoms in a long time. I also felt that when I was diagnosed, I had been leading quite an unhealthy lifestyle and since that had now changed, I could control my seizures by watching my stress levels, not taking any alcohol and sleeping right. My consultant was reluctant, but he agreed. So in early 2013, I officially came off my epilepsy medication.

To say I was delighted would be an understatement. It was a chapter of my life that I was happy to close. And for the last year, I didn’t experience any symptoms.

Until recently. In the last few months, I have moved away from home. I have begun a new job at a school that is challenging, to say the least. I have found the whole experience very stressful and I know that this has contributed to a return of my symptoms.

The symptoms began again around Christmas. I was standing in the school hall, listening to the students sing carols when I suddenly felt dizzy. I had to search for a seat, as I knew that I was about to faint. In isolation, I just thought that the room had been too stuffy. Days later, I started getting headaches again. They are profoundly painful and debilitating. I also keep experiencing dizzy spells.

And then, the other night, as Jack and I sat in bed watching some crap horror film, my old nemesis made a return: The déjà vu. It wasn’t as intense as it had been, but the feeling of dread returned with it. Tears pricked my eyes as I finally confessed to Jack that my symptoms were back. I had to concede to the fact that there was no getting away from it. My consultant’s words rang in my ear: “I will let you come off the medication, but if you ever experience another seizure, you’ll be back on it more than likely for life.” Life. Life with epilepsy. Where I can never have a normal pregnancy and where there are several risks to any children I may have. Where I will have to take medication for the rest of my life. And where I can’t ever ride Space Mountain again. Curse you, epilepsy.

The thing is, I’m okay with it. I have come to terms with this as an inevitable part of my life. It could be worse; I see people on a daily basis who struggle with far worse than this. I also have an amazing family and group of friends who will be there for me if and when I need them. And I have this ridiculously childish and immature blog that I can come and be silly on when I need to. So now you see why I do blog: it helps me. I don’t have to be serious and grown-up and I’m not some woman struggling with epileptic seizures here, I’m just a random eccentric who posts cat memes. And it feels great.

If you read this far, I just want to say: thank you. Really. I didn’t even read this far, so there are probably numerous typos but I have an excuse. My brain doesn’t work properly. So there.

Hugs and kisses x

19 thoughts on “So my epilepsy is back…

  1. tvkapherr says:

    Thank you for sharing that. It’s one thing to live with something like that, but quite another to state it openly. Your courage is commendable.

  2. Karen says:

    Great blog post! It is very important to realise that medication is not a death penalty. Sometimes the neuronal network just needs a little support to calm down. 🙂

  3. deepbluesandseafoamgreens says:

    Dear Jane,
    I admire you for being so brave and can only wish nothing but the best for you and your future. Opening up about these things isn’t easy (I know the feeling!) and really, I don’t mean to sound nosy, but well, you know…you know you know! You’ve found this beautiful community on WP, I’m right in saying? We all love you! And I’m (yeah? Yeah? YEAH?!!!!) wedged nice and happy into the community, sitting nice and happy on the front row (hehehehe!). The fact that you gave us a slice of how you are feeling/have felt in regards to your well-being is magnificent, and whatever happens, we will always be there to listen as humble readers.
    And plus, I don’t mind fetching as many “fairy dust” little sacks as you need!
    This will sound weird coming from a teenager to an adult, but; I’m proud of you.

    • janeybgood says:

      Ah Z, my world has been made that bit better from your constant kindness.
      It’s just lovely to see someone so selflessly kind. I was only talking about you to Jack today, because I was pointing out how talented some of the writers here are, and we were saying how brilliant your writing is.
      It’s a lovely community here; often secret, connected through our love of writing, and often through our painful experiences.
      I can’t explain how great it feels when I know someone has actually taken the time to read something I’ve written (but I’m sure you know the feeling!) and I just love coming on here and getting lost in a blog and then writing wherever my brain takes me.
      It’s important to have support and to give support in life, and I feel that’s what wordpress is all about. And also, cats. Everything is about cats. Haha!! But again, thanks for your lovely comment. It made me mega-smile!

      • deepbluesandseafoamgreens says:

        I’ve got this new weird habit where whenever I see an exceptional comment/reply, I turn about 50 degrees to my left and stifle a mini “girly giggle.” This is then followed by a positive “hyperactive coo” and lots of hypothetical rainbows.
        I really needed and am grateful for this niceness. Honest..I’ve had a scary day. (Beware of a blog post…beware…beware..)
        But seeing this made me stop thinking about everything wrong. And I thought (ta dah!) cats!
        This community is so…(ah I’m getting all emotional here) special. It made me want to come back, and I like how although people care, they respect distance. With this, comes a feeling of “these people are genuine.” I’m always aware that there are some not-so-jolly people yo-yo-ing round the internet..but as well as that, there are some magical ones too.
        Support! HAZAAR!!
        And yay! You and Jack are my new OTP. Just perfect. Please, please one day resume your officially titles as “Sir Awesome and Miss Lovely.” 🙂 I’d be happy to provide the tiara, and I’m sure I can add some sparkles to Jack’s crown.

      • janeybgood says:

        Haha, I know Jack secretly love sparkles but he’ll never admit it 🙂 I actually caught the best video of him miming Abba songs in the car but I can’t put it up cause of the whole anonymity thing, damn it!
        Hope you’re ok Z, but if blogging helps then blog to your heart’s content! You have a lovely supportive network here 🙂 if only there was a way for us all to share cookies and ice cream ha!

      • deepbluesandseafoamgreens says:

        I know the feeling! I have some pretty weird/funny pictures of none other than yours truly, but I can’t post them either.
        Ah well.
        Thank you Jane, thank you!

  4. Trent Lewin says:

    Janey, wish you nothing but the best. And I think you are so brave for confronting your epilepsy and dealing with it. Be well, my friend. I’ll send you some clean Canadian arctic wind to ease your stress – it’s not much of a sub for a good drink, but it’s much healthier.

    • janeybgood says:

      Thanks Trent 🙂 I feel fine and I don’t want to complain but it is an important part of my life so I felt I should talk about it. Thanks for reading, and I would love some Canadian arctic wind!

  5. Wordifull Melanie says:

    Thank you for sharing a bit of your truth with us. It is a scary thing to be diagnosed with any disorder and knowing it is a forever condition makes it even more so. BUT I know with your spirit and the support you have…you will not let it define you or keep you down. Hugs and happy warm thoughts coming your way.

  6. seashell says:

    Don’t stop writing and being such a good teacher, and a happy woman; you are stronger than epilepsy!
    take care, seashell

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