Posted in Blog

“Hope You Get Better Soon”

Get-well-soon
Image source 

It’s funny how whenever I have a seizure most people will respond with:

hope you get better soon.

Although I appreciate the sentiment behind it, I feel like there’s so much to unpack in that statement; what does “getting better” even mean? To me, when you have a chronic illness there is no “getting better” (in the way society expects you to, such as able, fit, full health); it’s not like having a cold, you take a few drugs, drink some Lemsip and in a few days you’re back to what society deems as normal, “better” and back to full health again.

There’s also no certainty that my seizures will become controlled under medication and even if they do, I’ll be on medication for the rest of my life. Is that normal? Is that feeling better, considering the side-effects we experience while on medication?

And what about mental health? Again, when you have mental ill-health, can you ever get back to “normal”? You can restore your mental wellbeing, however along with the stigma of mental ill-health and diagnosis, along with what particular disorder you might have – such as schizophrenia, you might never be deemed normal by society again?

At times I question the sincerity behind the phrase “hope you get better soon”. If it’s a really good friend or a supporting family member, who understands your condition then they just might want you to recover from the seizure and be able to function a little bit better. But others can use the phrase to be dismissive of your condition, especially when you’ve told them that you’ve had a seizure and instead of asking how you’re feeling, they just respond with “hope you get better soon”. See what I mean?

Just a thought.

Sometimes we need to pay attention to the words we’re using and how they might be construed by the person hearing them.

XOXO

Posted in Blog, Mental Health

Medication Update: Epilepsy AND Mental Health

A lot my fellow bloggers are taking part in the Epilepsy #BlogRelay this month and as always I’m late to the party! I did intend to participate every day, however I’ve been extremely unwell and even now I’m not feeling any better. Better late than never right!

I was also supposed to take part in #NaNoWriMo (National Novel Writing Month) but obviously that’s been put on the back-burner too.

Seizure control has taken a turn for the worse lately. I actually had two seizures this morning and I’ve been having multiple everyday since Sunday. I saw my epilepsy team today and we’ve agreed to increase my Lacosamide doses to see if that has any effect. As we know, seizures can also be affected by seasons; I just think that it’s a combination of the season change and being so under-the-weather, so I am hoping that the dose change will be effective over the winter and then if it works, perhaps I can decrease over the summer.

Speaking of season changes, I always used to laugh off my dip in mood during the winter months. I have dips over the course of the year, however over recent years I’ve definitely noticed my mental health becoming quite unbearable during the winter and in retrospect it’s been a recurring issue for a number of years which I’ve failed to address. I do recall a friend once mentioning SAD (Seasonal Affective Disorder), suggesting that I might be affected by that however I laughed it off. Then last month, my girlfriend and I went away on holiday to Mallorca and I literally felt rejuvenated by the sunshine, warmth and sense of happiness and freedom the sun brings. When we returned to the UK, I immediately felt overcome with a heavy sadness and oppression, which I initially brushed off as post-holiday blues. Until I began to find it more and more difficult to get out of bed. Then I was suddenly crying for hours for no apparent reason.

I was due for a GP visit anyway, as I’d been asked to book a medication review for my AEDs, however I decided to use the opportunity to hijack the spotlight from my epilepsy and shine it on my mental health. Come to think of it, I’ve never been called in for a review of anti-depressants yet I’ve been on-and-off them since I was 19 years old. Unless I go and visit a GP to discuss them using my own initiative, concern for my wellbeing on anti-depressants has always been a big fat zero. The annoying thing is that GPs know very little to nothing about AEDs, therefore these medication reviews are more of a tick box exercise than actual care and concern for my wellbeing in my opinion.

So, once I’d gone through the formalities of review questions, I swiftly steered the attention to my mental health. The GP was reluctant to discuss it, was actually visibly uncomfortable with talking about it (???) and when I asked if I could increase my dose of anti-depressants just for over the winter months, I was immediately dismissed. At first she advised that she was always hesitant to increase anti-depressants until we’d seen the full affect and particularly if nothing else has been tried. Fair enough. However, doesn’t relate to my situation because…

  • Firstly, I’ve been on Fluoxetine for a fucking year.
  • Secondly, I’m already in therapy (which is on my file), therefore am also relying on alternative therapies as well as pharmacotherapy (medication).
  • Thirdly, she then asked if I’d ever tried Talking Therapies – because it’s on my file that I’m seeing a private therapist, but nothing on the NHS has been offered – I said yes but not recently. She then moved on from the subject of therapy instead of asking any further questions! To me, this is an obscene disregard for duty of care and something I have experienced regularly when it comes to my mental health.

She then expressed her concerns about what effect the increase in Fluoxetine will do to my seizure-threshold. Thankfully, I know that this is nonsense, (which was confirmed by my consultant in today’s appointment!) but can you imagine if I wasn’t as clued up as I am. And this is the fundamental problem with co-morbidity: clinicians tend to focus on only one condition and tend to prefer to ignore the others. As my consultant rightly pointed out, many patients with epilepsy also battle mental health issues which then affects their epilepsy. If I can’t get out of bed in the morning because of mental health issues, I’m skipping meals which then guess what? Triggers seizures, so why wouldn’t you want to treat the mental health issues? It is so bizarre.

So after arguing my case with the GP, I won the battle. I’m increasing my Fluoxetine. With the recent increase in Lacosamide, this means I might be a bit zombie-like during the winter months, but if I’m a happy seizure-free zombie, then I ain’t going to complain!

It’s also amazing to have such an awesome specialist team by my side and I am forever thankful. My GP actually gave me a letter to pass onto them about the increase in Fluoxetine, with her concerns about seizure-threshold and my consultant refused to take it, after throwing a fit at how frustrating GPs are for constantly believing in AEDs myths and congratulating me for arguing my case.

Welcome to my world mate.

Do you have epilepsy or another chronic illness and find that your mental health and wellbeing is often ignored? I’d really love to hear your thoughts and experiences in the comments below.

XOXO

Posted in Blog

Zonegran: Day One

Day one on Zonegran has concluded.

It’s also been over twenty-four hours since my last seizure! Yay!

Although I did have a mammoth migraine last night, so bad in fact that regardless of how tired I was I couldn’t get to sleep at all. So the boyf and I had an old skool R&B night (lol), playing my #fav jams until gone four in the morning, by which point the dragon had finally released its grip upon my consciousness.

Migraines are a frequent partner to seizures, particularly complex partial ones.

I’ve also spent A LOT of time on Twitter of late, as I try to raise more support for my petition and it was refreshing to come across people who not only have the same type of epilepsy as me, but who also agree that these seizures are far more difficult to recover from.

Because they don’t “look like fits”, people often assume that they are just little episodes and misjudge the amount of time it takes to recover, when in actual fact each and every time I have one of these “episodes” I lose a part of me that takes an extremely long time to recover. At times I never get those parts back; I’ve lost count of the amount of days I’ve lost due to memory loss.

I also stumbled upon some articles; when I was diagnosed with epilepsy almost three years ago, I was and up until recently have been very reluctant to browse the net for information. However, I’ve finally come to the conclusion that having epilepsy means that I must play some part in my own self care and education. One by Richard Restak MD acknowledges the strong connection between epilepsy and psychiatry; it concludes that if one has epilepsy, and they are diagnosed with a mental health disorder, it is actually a misdiagnosis and should be treated as one and the same. This is because what presents as symptoms of mania, is actually part of the epilepsy and its effects on the frontal part of the brain.

This is a powerful conclusion for me because some days I feel like the mental girl, and some days I feel like the epileptic girl – like having a split personality. I’ve never even considered the fact that they could be the same person.

The second article, which resonated deeply with me, was by U.S. National Library of Medicine.

Now the reason why I finally received a diagnosis was due to what we thought were night terrors finally being diagnosed as secondary generalised seizures. However, the symptoms I displayed sound incredibly familiar to this:

“Nocturnal frontal lobe seizures can manifest as: paroxysmal arousals, which consist of brief, sudden eye opening, head raising or sitting up in bed, a frightened expression and, sometimes, vocalisation; or nocturnal paroxysmal dystonia, which involves dystonic posturing and hypermotor (complex motor) phenomena, and episodic nocturnal wanderings, which are longer in duration (one to three minutes), with associated stereotyped dystonic movements…. Confusional arousals consist of episodes of confusion arising from sleep, about which the person is usually amnesic.”

When I was a child, not only did I suffer from what we thought were night terrors, migraines and episodes of “blankness”; I also used to sleepwalk. I stopped when I was about 10, however I did have a few random episodes of wandering in university. Therefore, this second article explains a lot for me.

The only missing link in the chain however, is the lack of family history on my part; nobody in my family to my knowledge has ever displayed symptoms of epilepsy, let alone been diagnosed. Then again, there are conflicting studies to say that where some believe that epilepsy can be hereditary, others strongly refute this.

All of this makes me feel strangely positive and mostly empowered, to have more information on this condition which on a daily basis steals away so much power from its victims (I do hate that word).

It’s also refreshing to read the thoughts of some clever folk who may actually know what they are talking about.

Anyhoo, better go and take my second dose of Zonegran. Let’s hope that day two on this stuff makes it two whole days of no seizures too!

purple-heart

xoxo

Posted in Blog

Tired

I’m not sure which I prefer…. Not being able to stay awake past 5pm, or not being able to get out of bed. Ever.

 

I’ve been on both Oxcarbazepine and Levetiracetam for just over a month now. Plus my anti-depressants. And hayfever tablets.

 

A lot of drugs.

 

My mother would have a fit if she knew.

 

My seizures have so far decreased in frequency, which is a dream come true, and the fact that it’s only taken just over two years in order to do this is incredible. At the moment, I’m no longer having generalised seizures and now, as opposed to having multiple complex partial seizures almost every day, I have one perhaps every few days.

 

When I first started taking Oxcarbazepine, I struggled to get out of bed, and I also struggled to get the Oxcarbazepine to control my seizures. Hence the introduction of Levetiracetam, however every dose increase of the Keppra (all the cool kids in the epilepsy circles refer to Levetiracetam by the name “Keppra”) brings a differing type of drowsiness. In the beginning it was struggling to stay awake past 5pm! I would get home from work, perhaps eat something (that’s another thing: the decrease in appetite. At times I was going to bed having barely eaten all day), falling asleep fully clothed and not waking up until the following morning! This would sometimes however pose the risk of missing my evening dose of medication, which could then trigger a seizure the following morning. (Epilepsy always knows how to keep you on your toes!)  And slowly I’m returning to the days of “morning slothness”: where getting out of bed is like trying to drag somebody else’s body out of bed PLUS your own, while gravity pulls you with such force, you feel that moving in itself should become an Olympic sport.

 

And this my friends, is how I’m feeling right now.

 

Oh, and Happy #NationalEpilepsyWeek