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NES: Everything about non-epileptic seizures

audienta April 2nd, 2022

Hi everyone! I got asked by @MyNameIsNicole if I wanted to write a post about non-epileptic seizures. And yes, I definitely do! If you have any questions that don't get answered in this post, feel free to leave a comment and I'll try to answer it. But for now, let's get started!




Introduction


Besides epileptic seizures, there is another type of seizures: non-epileptic seizures. What are those, what causes them, and how can you help someone who experiences non-epileptic seizures? We’re going to take a look at these questions and some more in this post.


What are non-epileptic seizures?

When someone experiences seizures, doctors usually take a look at the electrical activity in their brain by making an EEG. If this EEG shows any unusual activity, the diagnosis is epilepsy. If the EEG doesn’t show anything unusual, the seizures are called non-epileptic seizures (NES). Other names for this type of seizures include dissociative seizures, functional seizures, psychogenic non-epileptic seizures (PNES), or non-epileptic attack disorder (NEAD).


What are the symptoms a person with NES experiences?

The different types of NES include fainting, panic attacks, and dissociative seizures. The seizures can be generalised or partial.


Generalised seizures may include symptoms like

  • Convulsions

  • Stiffening

  • Jerkingy, rhythmic or twitching motions

  • Falling down

  • Loss of consciousness

  • Loss of bladder control

  • Biting the tongue

  • Confusion after the seizure


Partial seizures may include symptoms like

  • Jerky or rhythmic movements

  • Tingling sensations

  • Dizziness

  • Repetitive motions

  • Staring

  • Confusion

  • Changes in emotions

  • Altered senses


What causes NES?


NES can be caused by mental stress or physical conditions. Potential causes are

  • Heart conditions

  • Diabetes or other metabolic disorders

  • Mental disorders

  • Emotional, physical or sexual abuse

  • A major accident


In a recently published article, it is explained that both, epileptic and non-epileptic seizures, are caused by a strong discharge of a charge that has built up over time for different reasons, including unhealthy tension and chaos in the brain patterns.

How common are non-epileptic seizures?


From all people with seizures, around 60-70% of them have epilepsy, 10-20% have NES and 10-30% experience both types of seizures. This means that NES is pretty common in people who experience seizures.

But if you look at all the people in the US, it’s actually not as common. It is estimated that there are 2 to 33 per 100,000 people in the US who have NES. To compare, there are 5,610 per 100,000 people in the US who have asthma!


What are the treatment options for NES?


There is still a lack of helpful treatment options for NES. At the moment the most common treatment is psychotherapy. If there is an underlying health cause or risk factor, there might be more treatment options.


How can you help someone with NES?

NES is pretty stigmatised. A lot of people, including professionals, think that non-epileptic seizures are not to be taken seriously or even fake. This is why it is really important to listen to people with NES seriously and non-judgmentally. You can try to help them with finding ways to live with the seizures safely and advocate for them if they get dismissed. Also, it might be a great idea to learn about seizure first-help here.


Question for everyone: Have you ever heard of non-epileptic seizures before? What were the circumstances?




Resources

Non-Epileptic Seizures | Cedars-Sinai

Nonepileptic Seizures | Epilepsy Foundation

(PDF) Psyche, Soma and Seizures

Closing the Major Gap in PNES Research - PMC

Asthma Prevalence | Human Progress


Other posts regarding Epilepsy Awareness

Masterpost: https://www.7cups.com/forum/DisabilitySupport_47/Events_201/EpilepsyAwarenessDayMasterpost26thMarch2022_274544/

Seizure First Aid:

https://www.7cups.com/forum/DisabilitiesSupportCommunity_47/ArticlesResourcesConditionSpecificInformation_458/SeizureFirstAidWhatItMeansAndHowToAdminister_274823/



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Thank you @MyNameIsNicole for giving me the opportunity to spread awareness about NES!

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MyNameIsNicole April 2nd, 2022

@audienta we're practically best buddies now XD


Who would have thought purple day would bring us together?💜

Thank you for this post, and for your wonderful insights on NES. I appreciate you and your efforts.
1 reply
audienta OP April 3rd, 2022

@MyNameIsNicole

purple buddies! 😜💜

Thank you for inviting me to cooperate with you!

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MyNameIsNicole April 2nd, 2022

@audienta

Question for everyone: Have you ever heard of non-epileptic seizures before? What were the circumstances

I didn't hear about non-epileptic seizures until purple day last week. There isn't enough representation on NES, and a good amount of people still think all seizures= epilepsy.

I'm glad I got educated on it though, so now I can educate others!

2 replies
audienta OP April 3rd, 2022

@MyNameIsNicole

I'm glad to hear that you could learn about it now! And I agree, there's definitely a lot of education work to do regarding seizures.

Take care

audienta

creativeCat4934 April 16th, 2022

@MyNameIsNicole

I have PNES and FND so this is not new to me

1 reply
audienta OP April 17th, 2022

@creativeCat4934

Hey there

I'm sorry to hear that you have PNES and NES as well. I wish you a lot of patience!

Take care

audienta

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AffyAvo April 2nd, 2022

I have a relative who gets these although I'm confused about the electrical activity part. That was abnormal, it's how they were diagnosed as seizures (and not just simple fainting). Maybe not quite the right type for epilepsy? Over time they did appear more seizure like too ie. eyelid movement. Psychotherapy was not recommended, not sure how that would have actually helped.

They are very infrequent although when they were initially diagnosed were happening a fair bit. Things like GI illnesses/food poisoning seem to be the trigger now.

In that person's case they were taken fairly seriously, I think most people get concerned if someone is unconscious and stays that way for a while.

3 replies
audienta OP April 3rd, 2022

@AffyAvo

Hey AffyAvo

Maybe they saw on the EEG that you're relative didn't faint but were conscious. The abnormal activity that is seen in people with epilepsy is very specific and often also seen when they don't have a seizure at this moment. It depends on the type of epilepsy though. But of course, I don't know what exactly they saw in the case of your relative. 😉

I think the main point of psychotherapy is, that it should help the people to regulate their stress and emotions so that it doesn't come to an overcharge.

I'm glad to hear that your relative got taken seriously. I think that's really important. I hope that they find ways to live with with the seizures safely.

Take care

audienta

2 replies
AffyAvo April 9th, 2022

@audienta They definitely loses consciousness. I think they are more like febrile seizures. Those are non-epileptic too with brain activity. I just think the diagnosis had to be relabeled as they got older as I think by definition febrile seizures are only in young children/bsbies.

1 reply
audienta OP April 10th, 2022

@AffyAvo

Okay, that's interesting. I wish them and you all the best!

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emotionalTalker2260 April 2nd, 2022

@audienta

What a fantastic post! I love how it’s set out and easy to understand, even understandable to read fist thing in the morning!

Question for everyone: Have you ever heard of non-epileptic seizures before? What were the circumstances?

I knew non-epileptic seizures existed, but I definitely learnt more about them in this article 😊

1 reply
audienta OP April 3rd, 2022

@emotionalTalker2260

Thank you and I'm happy to hear that you have learnt something new! 😊

Take care

audienta

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theriverissinging April 3rd, 2022

@audienta I'm sorry there was just multiple posting and I had to delete the duplicate ones except this one. Nice to have more awareness and information on non-epileptic seizures, by the way. Thank you for sharing!

I'm copy-pasting @wonderfulRainbow817 's comment here. (If you want to post this yourself, rainbow, feel free to let me know and I'll edit it out of here!)

Thank you for sharing this very informational post, @audienta! I feel non-epileptic seizures are just as important to know about as epileptic seizures are. I can see why people would think NES is fake but experiencing this myself I can say it feels very real. Often for me my NES are related to extreme stress. I don't want to have these seizures and I would stop it if I could. I can't though because it's my body's way of reacting to the stress. So yes, it is very important to take those with NES seriously and be non-judgmental.

2 replies
audienta OP April 3rd, 2022

@theriverissinging

Thank you very much! I've seen the bug myself and informed some forum mentors, but it seems, like you were faster. 😉 Thank you!

audienta OP April 3rd, 2022

@wonderfulRainbow817

I'm sorry to hear that you're experiencing NES yourself. Extreme stress can be a trigger for me as well. And I think with this theory from the new publication I mentioned, that explains that seizures come from an overcharge, that makes a lot of sense. I hope, you can find ways to manage your NES. ❤️

Take care

audienta

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