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Auras: Do They Help or Hinder?

Auras: Do They Help or Hinder?

When someone has epilepsy, they can also have auras.

What’s an Aura?

An aura is basically a warning that a seizure is about to happen. They can be different for everyone, meaning that the symptoms, the intensity and amount of auras can be different for each person, plus not everyone with epilepsy will suffer with auras.

What are Auras Like?

Here are some examples of what auras can be like. They can have varying symptoms. Some people might have just one symptom or a combination of symptoms:

  • Tingling or numbness
  • Feeling of déjà vu
  • Having a strange taste in their mouth
  • Hearing a strange sound or ringing
  • Smelling an odd smell (normally bad)
  • A tight feeling in the stomach or throat
  • Seeing flashing lights or colours

(You can look here for a more complex list of aura symptoms if you wish)

During my time with epilepsy auras have hindered my life more than seizures. When my epilepsy was uncontrolled I would perhaps have 2 tonic-clonic seizures per year at the most. This surprised many people, even my doctors. But I could suffer with auras daily, and as they are warnings for ‘seizures yet to come’, I was constantly worried.

I don’t know how common this is, but I have always had a rough pattern to my auras, the symptoms would initially begin light and build to a terrifying experience. The benefit of this? Observers know whats coming, next.

A description of a strong Aura I have experienced:

  • Starts with a sinking feeling, and then my stomach churns.
  • Déjà vu kicks in and I start staring at a point in the room considering the notion of familiarity during that moment in time, I also have a sense of panic as I don’t like what’s happening.
  • Next, although I don’t hallucinate or physically see anything, I feel as though a dream is replaying in my head really fast (this is something I hate), combined with that feeling of déjà vu.
  • Then, I feel as though I am just watching myself on automatic as I see myself go from one room to the next and I don’t feel as though I’m consciously doing it.
  • I’m usually very sick, so I watch myself run to the bathroom.
  • Witnesses have been afraid that I am no longer myself but I’ve always been fully aware of my surroundings, I’ve been afraid as I know what’s to come. It’s like falling down the rabbit hole (like my reference?*) knowing you can’t return after a certain point.
  • I try to resist the auras and communicate with others about what’s happening. But at this point the aura has become too intense and my speech and communication has begun to suffer, its infuriating as inside the information is clear and no matter what you try to do no one understands you.

 

It would be rare for auras to get that intense, and I would start to panic if  I’d begin feeling sick with them.

I found that looking after myself e.g. getting rest or removing myself from worry was all that I needed to stop the auras.

I once had a job which was extremely stressful. On a few occasions I was aware of my auras building, as I couldn’t remove the stress in work the auras continued to build. On one occasion, some visitors came into my office to find me clutching my bin on my lap as I felt so nauseous and disorientated. I instantly threw the bin on the floor when they entered, but that’s when I realised that my job was affecting my epilepsy too much, it was taking me to the most dangerous part of my auras. I had prioritised my job over my health because that’s what the company wanted me to do. The moment I left, my health  instantly improved.

Auras are a mixed blessing when it comes to epilepsy.  I personally feel they have been the hardest part for me to deal with. I have been known to have a bad aura in the morning and cancel a whole day of plans out of fear of what might happen.  But at the end of the day, although they have been traumatic to experience, whoever knows me can see that a seizure might happen and can look after me purely due to auras.

How do auras affect your epilepsy?  Do they help or hinder?

Feel free to leave a comment!

Thanks for reading!

Becky 🙂

* It’s suggested that Lewis Carroll author of Alice in Wonderland, had epilepsy considering the detailing in the book it is similar to what someone might experience during an aura etc.

 

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Faye Waddams Decicates Her Miles in Marathon

Faye Waddams Decicates Her Miles in Marathon

As many of you know, over the weekend we had the London Marathon.

 

I have always had admiration for anyone who has taken part in a long distance run such as a marathon as I just couldn’t run for long distances to save my life. And when I was diagnosed with epilepsy I had a new outlook on exercise and long distance running. Now my exercise is light, and I make sure I don’t overexert myself. So when I witness other people who have epilepsy partake in marathons I think it’s absolutely astounding.

I came across blogger Faye Waddams through Twitter, who not only has epilepsy herself, but ran the London marathon and dedicated each mile to someone who had been effected by epilepsy.

I thought that this was such a selfless and kind gesture.  So I wanted to write a blog today to her as I think that she is amazing.

Before the marathon she sent out messages through social media so people could have a mile dedicated to them or a loved one. This is when I realised how good her project was, as it was engaging other people and also spreading awareness of epilepsy.

Not only did she go on to complete the marathon perfectly, but she also released her latest blog thanking her supporters and including the 26 stories of each person for each mile she’d ran.

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You can read it here.

She warned that you needed tissues, and she was right! Although I try to keep my blogs as positive as possible to show people that we can get through it, the collection of people’s stories reminds you of just how varied epilepsy can be, and also how life altering and devastating epilepsy can be.

Although each story is brief, some will stay in my mind for a long time.

I think it’s so clever that Faye dedicated each mile for someone. For example I once donated my hair to charity. It was just sent away with the money I raised. I don’t know who it went to or who it helped. Having 26 stories to accompany your mission makes it so much more real and highlights all the people that are affected and who you will be helping.

I’ve also learnt that she has been nominated for the Positive Role Model Award for disability 2017 which is another incredible achievement, so well done Faye!

If you want to visit her donation page then its here!

Thanks for reading

Becky  🙂