Blog

Epilepsy Action Group & Employment

So. Yesterday I presented at a wonderful Epilepsy Action group in London, speaking about the BBC3 video, but also epilepsy in general. It was great to meet such a variety of people; professionals who worked at corporates through to those who were unable to currently work.

Dan (another volunteer) gave out tips re exercise (he is one ultra-fit chap!) – as one question was regarding overheating when exercising, which can of course lead to seizures in some people. It can though of course also raise one’s mood – which when you have epilepsy is a good thing!

There were many questions about employment rights, and a bit of tension regarding discrimination that people had faced in the workplace. What was interesting was that we established that if people became confident about their condition and their rights, then it could lead to a company finding it simpler to support them.

Personally, I have almost always worked for corporates – partly because they tend to already have processes in place to help people with disabilities and also often aim to have a percentage of their workforce registered disabled. Indeed, if they discriminated against me they wouldn’t want that in the press either! However, it truly helped that I was confident from my mid 20s onwards to speak about my epilepsy; I would educate a team, let them know what to do should I have a seizure and make sure that they had processes in place to support me. This made a team confident in me and that they didn’t need to stress out.

Would you want to work for a company that was small-minded and discriminatory anyway? I sure wouldn’t.

Granted, not everyone finds it easy to talk about their epilepsy and that’s a big part of why I started my blog. Epilepsy is a bitch but it’s nothing to be ashamed of. If I come across people who are discriminatory, I shame them. If they are nervous about the condition or uneducated then I chat about it and answer all questions. I admire people for admitting their ignorance because that itself is something that some people find hard to do.

Ignorance leads to fear, which leads to discrimination. Even some people affected by epilepsy contribute to all of this by giving out incorrect information. We all have a responsibility to educate the public.

Share the love! Facebooktwitterpinterestlinkedinmail

The Vileda Seizure

So. I now haven’t had a tonic clonic for a couple of years-and I’m so grateful to The Hospital for Neurology and Neurosurgery for that. But, I have a story. Which makes me giggle now. Well, you know, giggle and sigh.

A precursor: I’d been cleaning the bathroom which included mopping the floor tiles. I’d left the bucket in the bathroom to allow the water to evaporate before I put it away. Just imagine a Vileda bucket on the floor.

I had been up late (I know… not ideal) and popped to the loo. I felt an aura coming on (luckily for me, I almost always had an aura) and so quickly sat on the floor (I could feel the seizure wasn’t messing around and that my brain was going for it).

So I was sitting on the tiles in the bathroom and that’s all I remember. I had a pretty awful tonic clonic seizure and ended up in an interesting position. I say “interesting” because apparently when my boyfriend Steve rushed into the bathroom after hearing my troubled breathing and groaning, I was “lying” sideways on the floor, convulsing, with my head in the Vileda bucket.

Steve called the ambulance because he was worried that the seizure had lasted more than 5 mins (he had forgotten to time it since he came in and wasn’t sure how long it had been going on for because he’d been in a separate room). I vaguely recall being in bed with some paramedics around me. Apparently I upset poor Steve because I didn’t even know his name for about an hour. 🙁

Because it was a pretty bad seizure and took me so long to “come round”, the paramedics took me to the local hospital; just in case I had a cluster (which, luckily I didn’t). I don’t remember the hospital at all actually (which is weird because I have a slight, very vague recollection of being in bed with the paramedics by my side).

This was my first tonic clonic post-surgery. As you can imagine, I was more than a little upset about it. You know, I’d hoped, just hoped that I wouldn’t have any more seizures at all.* It was an exhausting, painful experience (there were a few bruises) and although I was thinking straight a couple of hours afterwards, it took me 2/3 days to recover physically.

Anyway. I had a marvelous sleep after this seizure. Luckily I didn’t break any bones or injure myself physically. One has to look on the positive side… 

PS The paramedics that we have in the London Ambulance Service are amazing. I cannot thank them enough.

*I’ve only had 2 tonic clonics since my surgery in 2013 which is brilliant.

Share the love! Facebooktwitterpinterestlinkedinmail

The Spirits Have Taken Over….

Righty ho. I’m going to talk about one form of stupidity and discrimination that many people with epilepsy still face. In one way it makes me laugh out loud. In another I pity the discriminator. And of course I feel awful for those victimised in this way.

Many people and communities still believe that a seizure is down to “demonic possession”, “spiritual unrest” or is “a punishment from a god”. Yes, as if there’s some evil spirit taking over a person’s body and making them stare into the next dimension or do a nice little/large dance. Come on. Now people can believe anything ridiculous that they wish, however, to be so idiotic/ignorant/fearful as to neglect or treat someone with epilepsy poorly, is inexcusable.

The above applies no matter a persons’ skin colour, ethnicity, sex, sexuality, disability, or any other “ity”. Globally, homosapiens need to grow up.

Now we know that there are many causes of epilepsy (although in 50% of cases a cause cannot be found) but we know that spiritual “stuff” (I’m being polite here) is not one of them. So treating someone as if they are possessed is due to ignorance and fear of either what to them is the unknown or is a miscomprehension of the chronic condition. See this link for definitions of discrimination.

How can we help these sad people – and ourselves?

By sad people, I am referring to the frightened idiots responsible for the “demonic possession” rubbish. If these people are open to being educated; great. Let’s do it. Tell them about our condition and how they could help if our brains go for a dance (no praying required). If they are not up for education then really, how can we be interested in them? How can one respect another who’s choosing to be an idiot? I personally choose to liaise with only those who treat me and anybody with any disability with equal respect.

Allowing someone to state an untruth without being corrected authorises them to repeat the statement/silly resulting behaviour, e.g. prayer. It also encourages others who they know to do the same and do the same to anyone else who might have epilepsy.

Employment

If someone has an employer who calls or treats them like they’re possessed, then that is outright discrimination for which they can be prosecuted. Personally, I’d laugh and call a lawyer.

Points to be made:

  • Epilepsy is not a result of any other “spirits”
  • Praying to any “deity” does not help remove the non-existent spirits. It’s a waste of time. I wish these people would read another book, say on neurology
  • We must all have enough self-respect so as not to tolerate this

Note (for people who don’t have epilepsy):

Trust me, when someone has had a seizure of any kind, they aren’t feeling great about themselves already, so when people are understanding, supportive and caring (just like we would be to someone who had an asthma attack, for example) I so appreciate it. Because epilepsy is a bitch.

Share the love! Facebooktwitterpinterestlinkedinmail

It walks like a duck, and talks like a duck, but it’s a lizard…

 

Epilepsy seems like a pretty straightforward diagnosis to make. If you have seizures, basically you have epilepsy, right?

Wrong.

It turns out, there are very specific criteria that have been provided by internationally recognized and peer-reviewed collaborations (http://onlinelibrary.wiley.com/doi/10.1111/epi.12550/full). According to the International League Against Epilepsy (ILAE), the world’s foremost authority on the matter, a patient is diagnosed with epilepsy if they meet any of the following 3 criteria:

  1. Two unprovoked seizures >24 hours apart.
  2. One unprovoked seizure and a high probability (60% chance) of a second unprovoked seizure in the next 10 years.
  3. An epilepsy syndrome.

The reason for such stringent criteria is based on a simple concept. Is the juice worth the squeeze? Let’s think about it. The reason doctors make a diagnosis of epilepsy is to justify to themselves (and to the patients) whether it is the right move to treat a patient who has experienced a seizure. The fact of the matter is, as many as 1 in 10 people worldwide will experience a seizure in their lifetime, but only 3% will have recurrent seizures. Therefore, having a single seizure doesn’t necessarily justify treatment to prevent future seizures (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4527147/). All elements of the patient’s history, physical exam, brain imaging, and electroencephalography (EEG) should be taken into careful consideration before an epilepsy diagnosis is made and the patient is started a medication.

You probably knew all this.

What you might not have known is all that shakes is not seizure. There is an enormous range of what seizures can look like, which I briefly reviewed on my blog for neurology education (http://brainwaves.me/non-epileptic-seizures/), so it makes sense that a lot of patients, bystanders, and even physicians have trouble deciphering what is a seizure and what is not. For example, a lot of funny baby movements and “staring spells” are simply normal behaviors. And for adults, a lot of jerking movements can be normal when they faint. These are not seizures, but the only way to definitively tell is by testing the patient using EEG.

But if you don’t have an EEG, you’re not entirely out of luck. There are some features of the abnormal behaviors that neurologists recognize more commonly as seizures, and some features that we recognize more commonly as non-epileptic seizures (also known as pseudoseizures, psychogenic non-epileptic seizures, or psychogenic non-epileptic events). For example, forced eye closure is very rarely seen in epileptic seizures, whereas a forced gaze deviation (meaning eyes forcibly staring to one side) is very commonly seen in epileptic seizures. See the table below for more examples.

What may be confusing is that a patient may look like they are physically having seizures, but the EEG will show both seizure and non-seizure wave forms. This means that some of the abnormal movements or behaviors are actually “electrographic seizures” and some of the behaviors are non-epileptic. It might even surprise you to learn that one-third of patients with epilepsy have non-epileptic events as well as true seizures. And a large number of patients with non-epileptic behaviors may have an underlying diagnosis of epilepsy. The only way to determine if the events are true, electrographic seizures, or if they are non-epileptic, is to perform an EEG at the time of the behavior.

Now, the EEG is not perfect. It has its own limitations. An EEG can appear normal even during a true seizure. For example, abnormal electrical activity in the brain may take place too deep (and far away) from the superficial recording electrodes. But these are very very rare. Or the abnormal electrical activity may occur in a very tiny region of the brain that cannot be detected by routine electrode configuration. In fact, an electrographic seizure must involve at least 6 square centimeters of brain tissue in order to be captured by a routine EEG. Anything less than that, and you will probably miss it.

You’re probably asking yourself, what does it matter if the seizures are epileptic or non-epileptic? Well, it matters a lot actually. And some experts have made this abundantly clear in the titles of their manuscripts—such as the paper by Reuber and colleagues called “Failure to recognize psychogenic nonepileptic seizures may cause death.” (https://www.ncbi.nlm.nih.gov/pubmed/15007151) Here are some of the points made by experts:

  • Treating PNES like seizures may lead to innumerable side effects of medications:
    • Lethargy
    • Dizziness
    • Rash, some of which can be fatal
    • Liver failure
    • Kidney failure
    • Medication interactions
    • Birth defects (in pregnant women)
  • Treating prolonged “seizures”, when they are nonepileptic, will lead to unnecessary and risky interventions like:
    • Pharmacologic sedation
    • Medication-induced paralysis
    • Mechanical ventilation
    • ICU hospitalization
    • Hospital-acquired infection
    • Deep vein thromboses

Perhaps more importantly, using anti-epileptic drugs to treat non-epileptic events will not help the patient. Sure, there may be some personal satisfaction felt by the patient knowing they are “being treated.” But the underlying cause of the non-epileptic events, whether it is a major stressor in life or difficulty in recovering from a traumatic event, will go unresolved when a patient is started on Lamictal or Keppra. An estimated three quarters of patients with non-epileptic events will have an underlying psychiatric disorder, and depending on the disorder, the patient is more likely to benefit from one form of psychotherapy or another.

    

But there is hope for these patients. And despite an average delay of 7-10 years for the diagnosis of non-epileptic events, the prognosis is typically quite good. With appropriate neurologic and psychiatric follow-up, behavioral intervention, and management of the underlying cause of PNES, most events will resolve on their own. But this is dependent on the correct diagnosis being made in the first place.

Jim Siegler, MD

Neurologist, Pennsylvania, USA

BrainWavesAudio

 

Share the love! Facebooktwitterpinterestlinkedinmail

Employers & Epilepsy

So. This week I attended a meeting in the London Parliamentary Estate as an Ambassador for The Corporate Alliance. They work with employers to lessen the impact of domestic violence in the workplace. Well. This got me thinking. In my humble opinion, many teams and First-Aiders of the workplace require more training when it comes to epilepsy. Yes, companies are already required to have First-Aiders:

“The Health and Safety (FirstAid) Regulations 1981 require employers to provide adequate and appropriate equipment, facilities and personnel to ensure their employees receive immediate attention if they are injured or taken ill at work.”

…but these people often aren’t as knowledgeable as required when it comes to excitable brains. They should know how to help a colleague in the first stages of a seizure (e.g. should someone have an aura), when they are going for it (during) and then afterwards too.

It should be noted that lots of people still don’t tell their colleagues about their epilepsy (my thoughts on that are for another time!) and indeed, someone could be having their first seizure ever. So whether a First Aider is aware of a diagnosis or not, they need to be prepared.

Extended professional training would heighten the level of safety for the colleague in question (e.g. ensuring that they are in a safe place and don’t go and bash themselves….yes, I’ve done that) and would reduce levels of stress for team members. Indeed, from a business perspective this training would be good for business Health & Safety, HR and PR!

When I worked for KPMG in London, my team were brilliant. I was very open about my condition, so when I started off with a partial, my team knew exactly what to do. In fact, the colleague sat opposite me noticed both my lip-smacking and my “interesting” eye movements, so without panicking alerted our manager (who also happened to be the team First Aider). The manager then went for a “walk” with me to a safer, clearer space (I decided to go for a wander, then go full throttle with the tonic clonic). The manager was there for me and let me go for it without injuring myself. It was an example of fantastic work from the whole team. There was none of that freaking out. We’d all prepared through:

  • Professional first aid training for the nominated First Aider
  • Me informing the team about my epilepsy; what to do and what not to do
  • Me confidently answering all questions that the team had

Why shouldn’t all teams be prepared for when/if a colleague has a seizure? Epilepsy is not anything for us to be ashamed of. Again, it’s easy for me to say this (trust me, post seizure, I’m embarrassed….I’m not sure what’s happened, I’m horrifically emotional, I’m off my face and my skirt might be riding up in a rather unladylike position….yes, I’ve done that too….) but it’s not our fault. Educated and professionally trained people know this.

Companies from the UK should contact Epilepsy Action who provide professional training. Plus, if they are lucky, in a few months’ time they’ll have me providing the training (I’m going to become an Accredited Volunteer!).

So. That’s my thought of the day.

P.S. If an employer does not show understanding and instead discriminates against an employee then they should be shamed. Publicly. No company wants negative PR, so they’d better be listening to us right now, pull their socks up and get with it. Otherwise, perhaps we should recommend a lawyer for them. They’ll need one

Share the love! Facebooktwitterpinterestlinkedinmail

Epilepsy Podcast with Jim Siegler, Neurologist & Podcast Master!

Right. Today my first podcast re epilepsy was released. It was rather exciting! I was interviewed by the lovely Jim Siegler, Neurologist and Podcast-Master (Podcast-Master term added by me) from the the University of Pennsylvania, US. The podcast is called Brain Waves.

Jim asked me questions about how epilepsy has affected me throughout my life from the first seizure that I recall, through to surgery, through to to the present. I also mentioned my febrile status epilepticus as a baby, which lasted an hour. We spoke about my diagnosis, experiencing a seizure (or a few more…!), the help (or lack thereof) that I received and the physical, psychological and social effects on my life.

Humour was essential (that’s one of the coping mechanisms right?!) and Jim really made me giggle.

Doing a podcast with Jim gave me the opportunity to speak in more detail about epilepsy from a patients’ perspective, talking about the past and present. I hate the word “journey” but if I’m going to be “trendy” with my vocabulary then I guess that it’s the word that many would use (gosh, I can’t believe that I just wrote that word in my blog).

Jim’s podcasts are effectively neurology education for neurologists and trainees, enabling them to listen to articles in addition to traditional, often time consuming traditional reading. The podcasts also give them the opportunity to listen to neurological issues from the patients’ perspective a bit more and therefore treat us more effectively. Check out BrainWaves on Twitter: https://twitter.com/BrainWavesAudio

I would like to say, that my most recent neurologist (who has now left me, sob… ok, he moved countries!) was fantastic. The best. I will write another article about my experience with him and neurologists in general.

So, here’s the podcast! Hopefully you’ll enjoy it.

Please share this post to spread the word!

http://brainwaves.me/

  

Share the love! Facebooktwitterpinterestlinkedinmail

Things Not To Say To Someone With Epilepsy

So. Quick update/news. Today the BBC3 “What Not To Say To Someone With Epilepsy” was released on YouTube! We filmed this about a month ago in London, with a fab crew. It really was fun!

Epilepsy Action contacted me a few days prior asking if I’d be interested in doing the filming and I immediately got rather excited and of course said yes!

The chap I’m sat next to in the video (Daniel Bedeau) and I hadn’t previously met, but had of course the lovely epilepsy in common (notice the sarcasm 😉 ). In fact, we’d both had a temporal lobectomy so we quickly found something to chat about prior to filming. What was interesting was that we agreed on some things re epilepsy but not on others. How epilepsy affects your life, your family, friends, etc., is different for everyone.

Hearing about Daniel’s career was inspiring. He’s one busy chap. We actually swapped numbers afterwards and Daniel linked me up with a connection of his from an Epilepsy Action Support Group and I’m going to present at their group later this year. So even the delightful condition epilepsy can provide you with new connections and opportunities!

Let me know what you think of the video!

Share the love! Facebooktwitterpinterestlinkedinmail

Public Fear of Epilepsy

Right. Fear is down to ignorance. I hadn’t seen (that I’m aware of) any type of seizure until I had video telemetry (I asked the nurse to see the video and she looked at me like I was a complete weirdo!). The thing is that unless we witness a seizure ourselves I think that it can be hard to imagine how the general public may feel if they are witnessing one for the first or even the second time.

It isn’t at all fun to witness any type of seizure and the general public tend not to regularly witness one, so you can understand them feeling uncomfortable.

Indeed, most of us don’t like seeing another person in discomfort or danger and if we don’t know what to do in certain circumstances then that can induce fear too.

It is however rather ridiculous and embarrassing to consider how few people know about epilepsy and what to do should they witness a seizure. Especially considering that 1 in 103 people or nearly 73 MILLION people in the world have epilepsy!

I’m very open about my epilepsy and am happy to chat about it. There’s nothing to be ashamed of after all. I see that they only way we can all help each other is by spreading the truth about epilepsy, the causes of the condition, the causes of seizures, the effects on our lives, treatments, etc.. Neurology is extremely interesting. I find that when I speak about epilepsy I can tell who was previously ignorant as they look a bit scared or/and embarrassed. But you know, that’s ok because they want to learn.

Ignorance leads to discrimination with epilepsy, the same as with mental health, other disabilities, sexuality, ethnicity, nationality, etc.. Anything that makes us different. So let’s educate. We can even bring humour in when explaining epilepsy (well, I try to!).

Let’s be upbeat where possible and remove the fear of epilepsy.

 

 

Share the love! Facebooktwitterpinterestlinkedinmail

Epilepsy Rant of the Day

So. My rant of the day. Today I’m annoyed at the fact that my meds enforce me to regulate my life. A lot. We all need a certain amount of sleep, nutrition, exercise etc.. But if I don’t look after myself then I’ll end up having an epi. Which isn’t fair, right? Haha. Today I’m moaning.

I’m really lucky though. I haven’t had a tonic clonic in about a year now! The surgery that I had (temporal lobe resection/temporal lobectomy) about 4 years ago was a life-changer and a life-saver. I’ve only had a couple of tonic clonics since then and a few auras/partials. I also have a very cool keloid scar (although it’s a tad hidden beneath my hair).

I guess I’m just fed up today and wish that I had the choice to go out and have as little sleep as I wanted. It’s the lack of choice that I hate (yes, I am stubborn 😉 ).

Lot’s of people have epilepsy much more severely than I do. I’m aware of that. I used to be there. It’s funny though, how despite having much more control, epilepsy still  affects me day to day, due to drugs and having to monitor my overall health and life daily. Grrr.

That is my epilepsy rant of the day.

 

Share the love! Facebooktwitterpinterestlinkedinmail