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My Epilepsy Story, and acting like a fish out of water!

So I am doing this story to tell you, my dear readers, about me living with Epilepsy.

I was born in 1991. During the 90's there were two UK Prime ministers, they were John Major, and Tony Blair. In the US during the 90's the two Presidents were George H.W. Bush and William (Bill) Clinton. So you have an idea of the world I was born into. 

My Mum said it was natural birth, though it required the help of forceps to get me out, as I decided I was too warm, comfy and getting free food, and didn't want to come out. I personally think this was very cruel, dragging an innocent helpless child out of the womb into the cold, bright hospital! In 1991 I was born, and at first the hospital and my Mum thought I was healthy... famous last...erm...thoughts?

My Mum says within weeks of being born it was obvious there was something not quite right (something I routinely think to this day!) Whilst I was in my cot sleeping I would shake and do weird stretching movements. When she saw this happening, she took me straight to the hospital where she was told "Stop fussing, it happens...she will grow out of it." My Mum's gut instinct was telling her different. As I grew I kept shaking and stretching and my Mum kept taking me to the doctors and hospital and again "she will grow out of it..." So finally, my Mum accepted it and to let me 'grow out of it.'

When I hit the terrible twos, not only was the shaking and stretching going on, but I was late in developing my speech. My Mum was worried but she was again told by doctors and health visitors not to worry as "she will talk in her own time." I started to walk age 2 and that is when I started to face plant the floor. Apparently I must have enjoyed the taste of concrete! My Mum said I never tried to stop myself falling and she couldn't stop me as the onset was so sudden. It was like I was puppet with my strings being cut. This face planting is now known as an atonic seizure.

Atonic seizures are where the muscles suddenly become limp. It can affect part or all of the body and will normally result in the person falling if they are stood. This is why you often see Epileptic children wearing head protection. In the 90's that wasn't the case, especially where I lived. Medical science and intervention was very different back then. You can read more about atonic seizures here.

When I was 2 or 3 years old my Mum and Nana decided to take me to a church in Nottingham where I lived at the time. There was a stage in the church, where Christmas plays were put on. I was running (I use the term loosely, it was probably more like stumbling at speed!) about on the stage, and according to my Mum I was pretending to fly and be a fairy. I ran to the edge of the stage and was shouting "Mum! Nana! Look" I was flapping my arms. The next thing my Mum and Nana said they saw, was that my face went blank and as they were shouting my name I had fallen off the edge of the stage and made best friends with the floor. I banged my forehead, so we went to the hospital, and that's when it was decided that we needed to see a specialist. I also had a spectacular atonic seizure during my first year of school, which you can read about here.

My Nana and I, aged 2 or 3


At age 5, after seeing a Pediatrician specialising in neurological disorders called Dr B, and after conducting an EEG, and an MRI on the brain, I was diagnosed with epilepsy. Dr B couldn't be sure if the epilepsy would ever go and he felt there was more to it.... From age 5 to age 8 I was put on Epilim (sodium valpourate.) During this time I saw an educational psychologist who said "I would get by on my looks" but had "nothing between my ears" You can read more about that in this post about my other medical monstrosities!

At age 6 I had my first tonic-clonic seizure. It was during the Easter holidays and I was playing out in the garden with my younger brother, sister and Mum. My Mum said I stopped watering the plants and I started to cry and complain about a metallic taste in my mouth, then my eyes went to the back of my head and I went all stiff. I then started to shake and my breathing wasn't steady. During this seizure I got abrasions from the concrete, which was just the icing on the cake as I couldn't dress up or wear a box on my head for weeks. These things are important to children! I was rushed to hospital where they cleaned my scrapes, reviewed my medication, and said to increase the Epilim. A tonic-clonic seizure is the type of epileptic seizure most people will recognise. They have two phases. The Tonic phase is where you lose consciousness and all your muscles go stiff, and you are at risk of biting your tongue. This is followed by the clonic phase where you convulse and your breathing can be affected. You can find more information about tonic-clonic seizures here.
Many people, including me, have a symptoms of a focal seizure, commonly called an aura, before a tonic-clonic seizure. For me, my aura is and has always been a metallic taste in the mouth, although it can manifest as many things, such as a sense of impending doom or auditory hallucinations.

Grandpa and I, when I was a hormonal teenager!

From the age of 6 to age 9 I had a mixture of atonic seizures and tonic-clonic seizures. At the age of 9 they suddenly stopped...then came back back with a vengeance when I was 11 years old. It was my Grandad's birthday and we had just sung Happy Birthday and done his cake. I felt a bit dizzy, so I went away from the party and sat in the front room to get my bearings again. I began to get a metallic taste in my mouth... all I remember is thinking 'oh no, not again.' Mum came in the room, and then the next thing I knew I had woken up on the floor. Mum said I had a tonic-clonic seizure. During that summer when I was 11 I had over 20 seizures. The consultant I was then under Dr M decided it was time I was put onto Lamotrigine, as this was more suitable for teenagers and hormones!

From 11 years onwards I mainly had tonic-clonic seizures with the odd atonic seizure.

Throughout my teenage life it was a pain and the seizures were so tiring. I would have to have time off school, which sucked as, oddly, I loved school. I loved my friends, I loved learning and I just loved life. Sometimes I would go into school looking beaten up because I had hit my head or something during a seizure. This was frustrating as it was a time when safeguarding was becoming a big thing and, no matter how many times we told the school the cause of my injuries, they kept suspecting I was being harmed. It took two years and many letters for them to realise I was in a loving and nurturing home, just not the healthiest bunny.
When I was at college I saw another conultant called Dr M, who took a different approach, and agreed I had epilepsy, but with the incidents with my heart, one of which you can read about here, he felt the heart could have influence over the Epilepsy. So the heart and Epilepsy were causing twice the trouble for me.

At university the seizures carried on, and I still looked beaten up at times...

Then this year in March 2018, I suffered a 25 minute tonic-clonic seizure. When I came out the seizure I woke up in hospital, where my specialist broke the news that I had suffered a Traumatic Brain Injury due to a lack of oxygen. My whole world turned upside down. I couldn't remember things. I couldn't talk properly, it took days for me to be able to talk again. My emotions were like a rollercoaster and I turned into this snappy and moody person I didn't recognise. I didn't want to see my friends. I became so anti-social. I was like a defenseless child scared of the world. I had to relearn everyday things that we take for granted, such as feeding myself and dressing myself. To this day I drop food on myself and I wear my clothes back to front. I now have horrific migraines that make me want to hide away in the dark. I have extreme memory issues - funnily enough I forgot about this part and had to put it in when editing. Fortunately, six months on I am finally starting to feel more like myself. My mood is more stable and the irrational fears, whilst present, are far more manageable.
Medication-wise I am now on 1500mg of Keppra (levitracetam) twice a day, 500mcg of Clonazepam three times a day, and a 400mg of Gabapentin. This has finally got me to a more stable stage where I only have tonic-clonic seizures once or twice a month, instead of once or twice a day!
Each day I make small improvement, but my consultant said its going to be a long battle. Well people, I am in for the long battle!

Me this week, recovering from my TBI with the help of mother nature

Oh shoot, I forgot to mention I also have absences, I go all spaced out, and away with the fairies, but I come back eventually. I think that is everything, though with my memory as it is at the moment...

Epilepsy isn't the easiest thing to live with, but with the love and support from my family, friends and pets I am getting through this. I couldn't ask for any more from my family and friends. I have to have someone with me at all times, as my seizures are very violent, but Mum and Gareth have stepped up to the plate wonderfully. Also, despite never having been trained in that way, Scarlett, my dog, has developed a sixth sense, and normally gives me thirty seconds or so warning of a seizure, before I have my aura. This gives me time to take extra clonazepam as a rescue medicine and reduces the impact of the seizure. Dogs really are wonderful!

There is one sad thing that has happened because of our government's recent policies and I don't usually mention this. In Yorkshire, Epilepsy nurses have been cut. I was told back in March 2018, that I should see an Epilepsy nurse within 3 months. To this day I have seen no nurse. When I contacted the neurology department they admitted there had been cuts to the epilepsy nurses, and because I was considered a lower risk due to the support network I have in place I could not be given one. This should not happen. The government needs to stop cutting funding to the NHS, in the long term it will only end up costing more anyway. Myself and others need the NHS, so, Theresa May, please leave our beloved NHS alone and fund it better! The NHS staff do an amazing job!

In the future, I am thinking of trying CBD oil, if my neurology team think it may be appropriate. CBD Oil room wrote a rather interesting article which you can check out here on the benefits, though it is definitely something I will discuss with the consultants first!

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Comments

You are truly an amazing and courageous young woman. I am so very pleased to have met you on twitter and in awes of your inspiration! Much love always and many blessings!
Aww thank you for your kind comment Jose! πŸ’œπŸ’œ I feel lucky to have met a kind, and wonderful person like yourself. You are an inspiration! πŸ’œ Much love always and many blessings 😊🌸xxxx
Eline said…
Oh Ruth :-/ As someone with CFS/ME who went through a decade of either traumatic or non-existent treatment, I cannot put in words how my heart goes out to you and your mom for having gone through all of that.
Aww thank you for your sweet comment Eline. πŸ’œπŸ’œ It was a lot to go through, but we got through it! Thank you for your kind and sympathetic words. ♥️♥️ Xxxx
you're brave for sharing! thank you and i hope this is helpful for others.

Joy at http://www.thejoyousliving.com
Thank you for your kind comment Joy! πŸ’œπŸ’œ I hope it helps others too. 😊🌸xxx
I didn't know whether to laugh or cry when I read your personal story of your epilepsy. One thing I do know, though, is that the world is a better place with you in it. You're an amazing person whose spirit soars higher than any you come across who just can't understand you. Truly inspiring. Roll on, Alison (@LightEpilepsy)
Aww Alison! Thank you for your very sweet comment! πŸ’œπŸ’œ I try and laugh and just get on with life. 😊 Wow thank you so much for saying that! πŸ˜ƒπŸ’œ Your kind words mean so very much to me! πŸ’œπŸŒΈxxxx
Earthboundstars said…
Such a powerful read, I'm sorry you went through all that! It's terrifying how unwilling doctors have been to diagnose or even consider diagnosing children. It could prevent years of worry & suffering to parents and children.
I adore how you look so much like your grandmother, and yourself as a baby, and you've grown to mix both of those looks into a strong and beautiful individual who takes whatever life gives her and says "I can work with this!" You're so brave and I always appreciate your honesty and how you keep your writing so real. I'd be afraid to talk about my medical struggles and how they affected my mental health but you open up about them without rambling on anxiously and I admire that ability massively.
Aww wow! Earthboundstars! That comment put a huge smile on my face. Thank you so much for your kind comment. πŸ’œπŸ’œ I think medical science has a long way to go before they consider the worry for parents and children. Aww thank you, a lot of people say I look like my grandmother. You are so kind for saying all these kind words. πŸ’œ Thank you, ❤️ I just want to give a voice to the people who feel they can’t speak out. If I can help just one person I am happy, although I do hope I can help many. 😊🌸xxxx
John said…
I have to echo everyone else in admiring you and your attitude. I too suffered badly as an eleven year old with epilepsy but in my case medication has really helped. So much of what you said stirs my memories of how it was. Well done for speaking up. You are a voice for those suffering as you do
This was a really interesting post, thanks for sharing your experience I'm sure it will help many others in the same situation!!
Abby said…
Wow! Thank you for sharing! When I was 15 I started babysitting a six year old who had epilepsy. Hers was different from yours and I don’t know all the technical jargon but I know her episodes were getting better and doctors believed she would eventually grow out of them (and 8 years later and she has!!☺️). I just remember her mom telling me about it and as I had never seen or been around an epileptic episode I could only nod and not truly understand. It wasn’t until we were having breakfast one morning and her mom was in her office and I barely even noticed but she stopped talking mid sentence, her eyes were just staring off into neverland and her spoon in her hand began to shake. It was the scariest moments of my life which isn’t even fair because it’s not something that happens to me and I am so glad her mother was there. It was only a mini episode but it sure taught me to learn up quick in case it was ever more or her mom wasn’t there.
Sorry this is such a long comment, I just really appreciated reading this post! And I love the support system you have around you!! You are very strong and it is a joy to read about!!��
Wow thank you for the kind comment John! 😊 I am so glad your medication has helped, as no one deserves to go through the seizures. Thank you for your very kind comment. 😊🌸 xxx

Thank you for your kind comment Chal! 😊I hope I can help someone. 😊🌸xxx

Wow! Thank you for your kind comment Abby! πŸ˜ŠπŸ’œ I am glad the little girl has grown out of them. That is amazing news. I am so happy you enjoyed my post, and I hope I see you again! Thank you so much for your kind comment! 😊🌸 xxx
Pamela said…
Thank you for sharing your story...it's not easy to talk about our chronic illnesses, but it always helps when we do. You are brave for being willing to tell your story and I'm sorry you've had things so rough. I hope that funding gets restored, and I wish you all the best with your health in the future.

Pamela
Thank you for your very kind comment Pamela. 😊 It isnlt the easiest to talk about, but I want to help others. I hope the funding gets restored too, as so many people need help. I wish and hope you all the best with your health. 😊xxx
I was deeply touched by your story. What you've been through is heart-wrenching, and you write about it beautifully! You are a warrior!
Aww thank you for your kind comment Baby Boomer. πŸ’œπŸ’œ Thank you I try my best to fight on. Your kind words mean a lot to me. 😊🌸xxxx
Leslie said…
What a story, I wish they’d get you in touch with a nurse. I think it’s crazy how the government decides to cut some of the most important parts of funding. I’m glad your pupper gives you a little time to take actions. I hope recover quickly from this latest episode.
Oh Ruth! I am so glad to be connected with you. Your indomitable spirit amazes me. As a fellow blogger I admire how you write about your personal struggle in such an easy breezy manner. Lots of love ❤️ and virtual hugsπŸ€—
Thank you for your lovely comment Leslie! πŸ’œπŸ’œ Yeah, the government needs to sort its priorities. Luckily I have a support network, but I worry about the peop,e who ha e no support network! 🌸😊xxx

Aww Suktara, thank you for your sweet comment! πŸ’œπŸ’œ I am just grateful to be alive, and hope I can help others. Sending hugs back. πŸ€—πŸŒΈπŸ˜Š xxxx
Laura said…
This was so hard to read :( thankyou for having the courage to share with others, I too suffer with epilepsy and absences but no where near as severe and it makes me think how lucky I actually am; I really do hope that your epilepsy improves and that you know you are an inspiration to carry on. What I also gained from this post is that everyone including drs family, have said how much of a good drug keppra is and ever since you've been more controlled your also on the same dose of it as me which has kept my seizures at bay. I also love how you still laugh and joke ev n though you've been through so much keep fighting 😘❤️
Aww bleas! I am sending massive hugs! 😘 Thank you for the sweet comment Laura. πŸ’œπŸ’œ I am glad your Epilepsy isn’t too severe. 😊 Thank you so much for saying that. I will carry on. 😊♥️ I am so happy the Keppra keeps your seizures at bay. πŸ˜€ I promise to keep fighting! 😘♥️
Elisabeth Straw said…
I come from Nottingham originally but I live in Yorkshire now. My son had a very rare form of epilepsy which started at around 15 months of age. At one stage he was having 40+ fits a day. He was given epilim and it impacted his development significantly. Epilim is a sedative and so it is bound to stop or hinder speech and language development if given during childhood. My son has autism now but fortunately he has been fit free since he was seven. We were very lucky as we saw a brilliant consultant in Surrey who was incredibly knowledgeable about epilepsy. My son't epilepsy is the kind that may return. I just keep hoping that he will be fine as it is such a terrifying condition and parents feel so helpless when their child fits. I think you are an incredible woman and I admire you greatly.

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