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The Neuro Ninja – Kyle Parker

So. Meet Kyle Parker! An incredibly inspiring, generous, rock-climbing and mindfulness addict!

A quick intro to Kyle:

Born and raised in Colorado, Kyle says: “I bleed blue and orange!” To the rest of us, that means Kyle is a tad passionate when it comes to the American Football team Denver Broncos!

Kyle’s saying: “To Simply Live Each Day”

Diagnosed with temporal lobe epilepsy on 11th April 2015, Kyle just wanted to know how to “fix things” (ah, if only things were so simple). He hadn’t had any diagnosed neurological difficulties prior. He hadn’t had an accident or bashed his head during rock climbing (during which he always uses a helmet, before you ask!).

“The worst moments were my first seizure and being diagnosed. The seizure broke my back in 4 places and I was completely blown away with the diagnosis. I was incredibly depressed, cried for hours each day and was utterly lost. I had no idea what I was getting into or any of the options our there for me. My life as I had planned it was ruined.”

One “good” thing was that the origin of Kyle’s seizures was able to be identified; Kyle had sclerosis (scar tissue) identified in his hippocampus within his right temporal lobe and it was from here that the seizures originated each time.

 

Kyle’s first Neurologist was a nightmare; he pretty much told him that there was no suitable treatment for him and that his life was over. Of course, Kyle swiftly went looking for another, more knowledgeable Neurologist – and in Kyle’s words he then (thank goodness): “hit the jackpot”.

Through his new Neurologist, Dr. Drees at the Neurology Center of UC Health, Colorado, Kyle learnt that his seizures were originating from one small part of his brain – that being sclerosis (scar tissue) within his hippocampus (within his right temporal lobe). To have this identified was fantastic. I say this because Kyle’s Temporal Lobe Epilepsy was medication-resistant. Dr. Drees tested him for his suitability for brain surgery, specifically: MRI guided laser ablation surgery. It turned out that Kyle was a perfect candidate for this particular surgery.

The idea of allowing someone to burn away parts of his brain terrified Kyle at first! He decided to try and control his seizures with medication and chiropractic adjustments. Kyle was seizure free from December 2015 to October 2016 but when the seizures returned, Kyle had had enough and was “done playing around”. Surgery seemed to be the best course to find true seizure freedom for Kyle. After having done a fair amount of research, checking out statistics and potential outcomes, Kyle’s response to the surgery offer was: “Let’s do it!”

Kyle’s first MRI guided laser ablation surgery procedure was in February 2017, which wasn’t as successful as he’d hoped; providing Kyle with only 4 months of seizure control. Luckily a second surgery was possible – and he had this in August 2017. The second surgery wasn’t quite as “simple” as the first; rather than aiming to just remove the existing scar, the new target was a large section of the right temporal lobe. 100% of Kyle’s right hippocampus and 80% of his right amygdala were removed through the use of two MRI guided lasers.

Since his last surgery, Kyle has not had one seizure. Nothing. Not even an aura. Kyle says that he now feels even more alive than prior to his epilepsy because he truly appreciates and lives his life now. One of his many quotes is: “99% of life is attitude, be positive my friends!” The diagnosis and treatment of his epilepsy have led Kyle to follow his dreams every day. He knows how lucky he is to have such a great life after going through such a terrible time. Kyle is a climbing enthusiast and an American Ninja Warrior in Training! Hoping to raise awareness for epilepsy, Kyle has set a goal of competing in the 2018 season of the television show American Ninja Warrior.

Kyle has a wonderfully supportive girlfriend called Sara who has been there to keep him strong and focused through it all. His wonderfully supportive friends and family have been and are priceless.

Kyle has had an incredibly supportive employer who has been flexible with his hours; including the time he’s needed off for treatment and recovery. Gold star to girlfriend and employer Zillow!

 

Kyle still takes the anti-convulsant Vimpat (Lacosamide) and will do so until/if he’s told he can reduce/come off of the drug. To suddenly come off of an AED is very dangerous and can encourage seizures (yes, I did this in my early twenties…. and had several seizures as a result :/).

Now let’s finish with a wonderful quote from Kyle: 

“Epilepsy has definitely shown me that I can face anything in life with confidence. No workout, physical or mental challenge nor anything else will ever be as difficult as dealing with epilepsy. I would like to add to that since fighting this battle for past 2 years, my life has found new meaning and is not ruined as I had once thought. In fact, I am a better, stronger person from having this condition. It might be twisted but a part of me is happy I was given this challenge to finally see my own potential.”

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Epilepsy WA – What a Team

 

So. It was a long journey from London to Perth, Australia, but a fantastic one and well worth it! Last week (which of course is part of Epilepsy Month!) I met with the wonderful Emma Buitendag (CEO) and Carolyn Bagini from Epilepsy WA (Western Australia). It was just wonderful to meet them both in person and learn all about what they achieve for those affected by epilepsy in WA.

Just as in the UK, those suffering from epilepsy in Western Australia are suffering from discrimination – at work, in the public and in their private lives.

Slowly but surely and with strength, celebrities in Western Australia are also starting to “come out” regarding their epilepsy and help reduce the ridiculous stigma.

WA is the largest and second most sparsely populated state in Australia; meaning that one of the most obvious challenges held by the charity is for them to help those affected by epilepsy all over the state.

To put things in perspective, let’s compare the size of WA to the UK:

WA: 2.5 MILLION square km

UK: 242.5 THOUSAND square km

 

Over the next year, Epilepsy WA are setting up several more support groups;  spread across the state. This way they will be able to support many more people, much more effectively. The support groups are for anybody affected by epilepsy, including the patient with the diagnosis, their family members, friends, employers; pretty much anybody affected directly or indirectly by the condition. During the meetings , they will be able share their experiences and receive up to date and useful information. There will be tips re coping with the condition both personally and professionally.

When people are seeking medical advice, Epilepsy WA has a close professional affiliation with the Neurological Council of WA (NCWA) to whom they refer members.

One of Epilepsy WA’s promises is that they are “are committed to providing support to improve the quality of life of people with epilepsy and increase community awareness of the condition” and this is truly happening. This is what we need.

All of the work that Epilepsy WA has done (since 1963!) and continues to do is only possible through member, public, government and corporate support and it’s wonderful to hear how these people/bodies are making all of the work possible.

There’s going to be the Purple Walk 4 Epilepsy WA on the 25th March 2018 (hmmm is that an excuse for me to visit Perth again…?!) which will raise awareness and funding for the charity. If you’re in WA, join in! I’m pretty sure the sun will be shining! You’ll also see that I’ve worn the hat (see one of the above photos!) and have one of the cool purple, woolly sheep!

I, of course, mentioned Epilepsy WA in during my slot at Noongar Radio Strong Minds Talk Back on 100.9fm on Thursday as the whole 2 hrs was about epilepsy (a blog about that is to come soon). Epilepsy affects those of every ethnicity, including of course the Australian Indigenous population and so we must just keep talking about it – factually!

I must say that meeting both Emma and Carolyn was a pleasure. To know that the leaders in such an essential, impactful charity are genuine, friendly and have a sense of humour is a gold star in my book.

If you or your company would like to sponsor a wonderful charity such as Epilepsy WA, contact them on:

Tel: 08 6457 7699

Email: support@epilepsywa.asn.au

 

If anyone would like to support/set up a support group/get involved with Epilepsy WA, contact them directly!

Tel: 08 6457 7699

Email: support@epilepsywa.asn.au

 

If you fancy giving a cool pressie (or receiving…and hinting to whoever), check out:

Yearly Entertainment Book/Entertainment Digital Membership which also provides support to Epilepsy WA

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Epilepsy & Anxiety

So. Some stress is good for us. Our adrenaline gets going, gets us buzzing, excited and can “encourage” us humans to go for it. But as so many of us know, there’s a very fine line between excitement and anxiety.*

Unfortunately, when you mix a certain level of stress/anxiety with epilepsy, a seizure can be induced. This used to really upset me. Here are some examples of what I’ve gone through in the past:

  • You’re trying to get on with your life as “normally” as possible (whatever normal is!) but you’re feeling anxious due to, say, a work deadline. Then, you suddenly realise that you are anxious and then without a way to try and control your anxiety, you become more anxious because you know that you may have a seizure as a result of your anxiety!
  • You are totally excited and looking forward to meeting up and going out with friends/a date but then as a result of that excitement, you have a seizure (I’ve got another story about that….)!

Imagine the above happening again and again, that you then come to the conclusion that you shouldn’t allow yourself to have fun, go out, challenge yourself or experience deep emotions because they may induce a seizure. It can become depressing and isolating. It has happened to me and lots of people with epilepsy that I know. Epilepsy seems to be holding you back and no one else understands.

I used to be in denial; working in corporate finance, I was under a lot of pressure, was stressed and was going out for “beverages” with work too often. Of course, this didn’t do me any favours; especially as my epilepsy was getting progressively worse as well.

Now, particularly since my surgery in 2013, I have come to terms with the above and instead I manage MY life. I manage MY time, sleep and work on what I enjoy more. I’m in charge. I walk a lot. I get the sleep that I need. I do mindfulness (love this video). I play my wonderful piano to relax. I’ve reduced my caffeine intake. I don’t drink. I PLAN my time. I chat with friends. I say no to pointless meetings. I run a social media company that I love. I spread the word about epilepsy globally. But, I still sometimes get too busy and stressed so I take a step back, reevaluate and take some time out. I know what my brain and body needs and I have to keep rebalancing everything.

If you’ve only recently been diagnosed with epilepsy, you need to adjust your life. It’s totally unfair, but either you do that and take as much control as you can, or you allow your epilepsy to be a complete bitch and control you entirely.

Sometimes people’s seizures will change/get worse and all of the above has to be reconsidered and reprioritised. But, no matter what anyone may try to tell us, epilepsy does not define us. It’s a significant part of our lives (da*n it) but you are not an epileptic. You have epilepsy and deal with it in the best way possible for you.

*I’m not claiming to be an expert when it comes to the very serious mental health condition anxiety. For professional advice, speak to your doctor/psychologist/neurologist/psychiatrist

 

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Epilepsy & Football – Daniel Bedeau’s story

 

So. May I introduce to you Daniel Bedeau: an inspiring and ultra-positive man who also happens to have epilepsy!

A quick intro to Daniel:

Epilepsy Joins Daniel…

My first seizure was witnessed by my grandmother and uncle when I was 7 and I remember it clearly. Over the next year I had a series of seizures and neurological tests before I was officially diagnosed with epilepsy. It’s turned out to be a huge part of my life, partially shaping who I am today.

Having epilepsy both as a child and as a teenager was very difficult. I didn’t have anyone to talk to and no-one understood what I was going through. Even I didn’t ever know what on earth was happening. All I knew was that this “funny thing” would happen to me and I would either black out and come back around, or fall to the ground first and risk injuring myself.

I used to use the phrase “I feel like I am in a black box with no escape” because that’s how epilepsy made me feel. It prevented me from doing what I wanted to do the most which was play football. For some reason, I would often have an episode whilst playing it.

It was in 2009 that my life started to change for the better. I had brain surgery for my epilepsy which involved the removal of a lobe from my brain. Having this surgery was a big decision but even today I am grateful that I chose to have it done. It enabled me to gain greater control over my epilepsy; I have gone from 3/4 seizures a day, to 1 seizure every 2 months! If I have a focal seizure now, I can carry on as normal after 20 mins rest. It’s only if I have a tonic-clonic seizure that I risk injury, become very tired and have to go to sleep.

 

Outlook On Life & Support 

After surgery, my outlook changed because I started to focus positively on what I can do with my life and not what I can’t do (e.g. driving). I gained a greater sense of control and optimism and gained the confidence to make positive changes to my life – which included going to university.

I am so open about my epilepsy because I have fully accepted my diagnosis and I have wonderful, supportive relationships with my close friends and family. They make me feel “normal”, comfortable, do not judge me and offer me support when I need it. They encourage me to go out and do things rather than discourage me. Having a great support network around me has been and continues to be essential.

I now listen to and understand my body; meaning that I know my limits on certain days but now also do runs (and raise money for Epilepsy Action!). Epilepsy has built up my character and led me to challenge myself, push myself and never give up. I have my dream job in football and am full of confidence. I feel very comfortable with my life.

 

Tips for someone who has epilepsy:  

  • Understand your epilepsy and your body overall
  • Recognise the red signals
  • Accept that you have epilepsy and talk about it
  • Don’t let epilepsy control who you are
  • Rather focusing on what you can’t do, focus on what you can do and be the best you can be at that

 

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You’re On Medication So You’re Fine!

So. Who has heard something like this before: “You’re on medication so you’re fine!” (or words to that effect)? You’re taking medication for your epilepsy and therefore all is fine and dandy, right?

People don’t tend to say this to those with asthma because despite people with asthma having an inhaler they could still have an asthma attack. People also don’t tend to say it to those who have diabetes and take insulin because they may still get hypoglycaemia. We don’t presume the people with these conditions to be fine at all times or cured, right? We know that these people really must look after themselves and that the conditions can really affect their lives.

The common misconception “medication cures epilepsy” is down to the fact that many people remain ill-educated on the condition.

Overall, anticonvulsants are a positive thing because with the “right” dosage and combination of drugs (of which it can take years to figure out) 52% of people with epilepsy are seizure free.*

Nasty side effects of anticonvulsants can include (but are not limited to):

  • Fatigue
  • Drowsiness
  • Dizziness
  • Forgetfulness (i.e. memory issues)
  • Tremors
  • Weight gain
  • Rashes
  • Liver failure

Lovely stuff eh? This means that many people with epilepsy sacrifice other parts of their health and therefore their quality of life to try and control/partially control their seizures. The effects of the epilepsy drugs alone can be depressing and anxiety inducing.

I started meds when I was diagnosed with epilepsy at the age of 10 and I noticed the effects overnight. I had to work twice as hard at school to get good results. I would go to sleep on the coach to and from school as I was so exhausted. I fell asleep in class once too and kept forgetting what the teacher had said. I had to write everything down.

My point is that epilepsy is not as simple as it seems. It’s not a black and white, yes or no condition. It’s not cured by popping a few pills. Medication can have nasty and sometimes dangerous side effects.

If I could get rid of my epilepsy I would. My seizures have been infrequent since my brain surgery (!) but they do still occur and I still must take my medication.

One of the aims of this piece is to help spread the word re epilepsy to employers too. If you know anyone whose employer is not understanding of an employee’s epilepsy, then please get them to contact Epilepsy Action who can provide them with training.

To end things on a cheerful note (!), here are some positive outcomes of my epilepsy:

  • I’ve made some great friends and met some inspiring people affected by epilepsy who really take me aback
  • I’ve become soooooo organised (because I was so worried about forgetting things)
  • It’s made me value my health. Physically and mentally
  • I’ve been able to effectively contribute to Epilepsy Action and help raise awareness of epilepsy, internationally

Please let me know of any positive things that you feel epilepsy may have brought to you. We need to spread the love. Because Epilepsy Is a Bitch.

*It is estimated that 70% could be seizure free with the right treatment

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The NHS & Politics

 

The NHS is part of the UK. “It was born out of a long-held ideal that good healthcare should be available to all, regardless of wealth” 

It is the incredible, life-saving, limb, neuro and mental health-saving health organisation that we hold. The NHS is paid for by tax and National Insurance contributions and employs more than 1.5 million people. It saves the lives and reduces the pain and discomfort of millions of people each year, both directly and indirectly. It deals with over 1 million patients every 36 hours. It is the most incredible organisation within the UK.

Without the NHS, incredible people such as Stephen Hawking will die early. Many children and adults will die young because they won’t be able to get the medical help that they need. Without the NHS the population would have to get private health insurance. Epilepsy is a pre-existing condition, so what medical health insurance company would insure those already diagnosed? A child with epilepsy would have to go without anticonvulsants, they would continue to have seizures which damage their brain and they may go into status epilepticus. They may break their bones or damage internal organs during an accident caused by a seizure but they won’t be insured for that. The family could get into significant debt. The child would have a painful existence and be likely to die young.

I have had so many dangerous / near death experiences due to my epilepsy. I fell onto a railway line. I fell off my bike into the middle of the road. I smashed my left clavicle for which I needed surgery twice. I woke up with blood all around me. I had brain surgery through the NHS in 2013. Without the amazing care and surgery provided through the NHS, I would either be dead or have continuous damage to my brain through seizures and an early death. I would not have been able to continue working or contribute to society.

We are on a slippery slope right now. With the continuous threat of effectively reducing NHS funds, the number of beds will go down, hospitals will close and waiting lists will increase. People. Will. Die.

I say to the UK politicians and decision makers – appreciate the significance of the NHS. Even if you are without a moral compass and “care” only about money, politics, and status, allowing the NHS to go under will not be a great move. When people are in so much pain that they cannot work, viruses and diseases are spreading and people are dying young, the economy and global trade will not fare well.

Please. Try and think about the long-term effect of your decisions. We need the NHS. The lives of 65.6 million people are in your hands.

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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.

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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.

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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.

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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

 

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