Drug-resistant Epilepsy?

Would anybody mind if I just climb into a little box in a corner and never come out?

I had a neurology appointment Wednesday morning and I'm now classed as having a refractory Epilepsy that may well be drug-resistant. If there's one thing that I have requested of my neurology team is that they are honest and if needs be frank with me something thankfully they have learnt to be.

Once I got around the original person who invited me into the little room for my appointment (long story which wouldn't be fair to put on here) but lets just say I will not be seeing that person again. Anyway once my actual neurologist was in the room we sat together and went through recent notes, seizure diary and he watched recent video's of my seizures that have been caught by people. My notes from my last appointment in September however have completely vanished... there's absolutely nothing on the system, as if I never went in?? Very strange and believe me neither I nor my doctor were very impressed! After going through everything we came to several conclusions as to what will happen next.

Despite worries that medication may not work for me for now I'm being tried on Eslicarbazepine Acetate (Zebinix) which is actually a medicine I have never heard of before! It's prescribed to adults with refractory partial seizures with or without secondary generalisation. I of course come under the title of "with secondary generalisation" as my partial seizures often run into Tonic Clonic seizures. He printed off the prescription straight away and handed me the paper to take down to the hospital pharmacy. Normally I have to take the to my general doctor and wait for the pharmacy to process it. So I able started the medicine the night of my appointment. All I can do is hope that it works or at least lessens seizures a bit, either in their frequency or intensity.

I am to have a fresh MRI scan as he is sure there is a cause for my seizures and he reckons it's in the left side of my brain. He told me in a follow up email today that this is due to the presentation of my seizures in that most of the movement it focused to the right hand side of my body. My last MRI was 2 1/2 years ago and he wants to compare that one with a new one. I've had various CT scans but they don't provide a detailed enough image. 

He has also now reffered me to a specialist neurology centre to carry on my care. I have a very "complex" case and need to take things a step further to confirm if I do indeed have a drug-resistant Epilepsy. For now though I will wait and see if these new tablets make any difference and carry on my life. I have to say I will miss my current neurologist as he knows how to listen when needed, show interest and realise that I can have a say in my care but perhaps most importantly he is honest. Something that is invaluable when it feels like your life is completely out of your hands. 

Life Changing Move

It's official, I've put my current room tenancy up for rent. I can't quite believe it but I'm now definitely moving back up to North Wales to live in the very house I grew up in. I lived there until I was about 12 then moved away. My current home is in South Wales where I have been living since starting university well over 5 years ago and it has become a place I love dearly.

I've relocated my live several times already each with hundreds of miles apart and believe me it is a very tough thing to do. This time around though I'm not starting afresh somewhere new. I already have beloved friends and family there and a familiar place to settle. It still breaks my heart to have to leave South Wales though. I have strong relationships here and it's where I grew into my adult life but unfortunately it's just not suitable for the way things are in relation to my health at the moment. 

Emotionally it's tough, I had to ring my parents up before I pressed the submit button on the advert just to check that it was the right thing to do. I'm scared, sad, excited and plenty of other emotions all mixed into one. I hope it's true what they say and everything really does happen for a reason.

Sunday morning seizure

It was a tonic-clonic and it's hit me hard. A friend happened to be around for a quick cup of tea when it hit. Luckily she's used to seizures both in her job and through me so she quickly sorted out the basics and whipped out her phone to film some evidence for me to show my neurologist. 

There are a fair few video's of my seizures now and I don't like to watch them at all. But this time she was quite distressed as to how blue I turned during this one. Intrigued I watched it and I too have been left shocked. I've only watched it the once and don't plan on seeing it again as it's really got to me mentally. Physically I'm still feeling the effects of my seizure, I spent most of the rest of yesterday sleeping and have had a few naps today. My muscles are still sore and a head ache is looming over me but is slowly washing away thankfully. 

I have an appointment with my neurology team on Wednesday morning which I definitely am not looking forward too. I'm afraid I'm going to have to get a bit stern with them as there are some problems that have to be solved including my missing prescription and notes. Joy. 

Quick blog break!

I feel like I've abandoned my little blog I haven't I'm just a little lost in amongst all things life at the moment. From amazing need for huge amounts of sleep and stressing trying to plan my move from South to North Wales to pretty much begging my neuro team to send my latest notes to my doctor so I can start my new medication (STILL) and starting a new volunteer role that has already seen me in some very interesting places. It's all going on and it's exhausting! 

Be back soon x 

Purple Love

My head has been a little cloudy for a couple of days so I'm sleeping quite a lot and concentrating on some therapeutic little art projects to help me focus. 

Here's some purple love xx 

1 click and help save a life?

Pretty, pretty please can anyone that might read this click on the link below and vote for an incredible small charity to possibly win some much needed funds. These funds can literally be life saving!! You can vote once every day too :) 

LINK

Epilepsy Sucks is small charity set-up by two mothers after watching their children go through their lives living with Epilepsy. One of whom sadly lost their life at the age of 22 due to suffocation during a seizure. Epilepsy Sucks aim to provide anti-suffocation pillows to both children and adults who suffer from seizures during their sleep. They work tirelessly to raise funds in order to do this along with running an amazing Facebook page to offer support and a place for other in the same boat to meet and share there experiences and gain invaluable advice first hand. I can safely say that I have learnt about 90% of what I know about seizures and the condition through this page as opposed to meetings with my doctors. I also have one of their pillows and I am certain it has saved my life on more than one occasion and would not be without it. Without the help from Epilepsy sucks theres no way I would have been able to buy one for myself. 

All it takes is one click to vote for them from the link HERE. There is no signing up to anything just literally ONE CLICK. 

Thank You SO much xxx

Hot pipe tip.

The other day I was given a tip that I really should have thought about before! It's a simple thing that can be found in many homes. Hot radiator pipes. 

If you were to fall against them (even when the radiator is off as they often remain hot) during a seizure or remain unconscious next to one then you may gain some level of burn to the area of your body that is in contact with the pipe. This could be during the seizure itself be it gripping the pipe or lying against it and/or contact may also occur during the post-ictal phase following the seizure. 

I'm not entirely sure what I can do about it at the moment I rent my house off a private landlord so I can't change it's appearance permanently in any way. The lovely lady who pointed it out suggested I give my awesome door-stop owl a new job and place him against the main piece of piping and the radiator tap. He will then be guarding the tap with it being a rather pointed object to hit on the way down and off course provide a barrier between myself and the hot pipe. This is the plan for now and if I can find something to cover the rest of the piping that runs along the bottom of the radiators in my bedroom I'll sort that out as well.

Hopefully this will now be one more injury I won't be adding to the list!

An Improvement!

It's the tiniest of improvements but some of the most brilliant news I can hear right now.

I've been having some problems with my field of vision on the left hand side I believe it's called a left-sided Quadrantanopia. This basically mean I'm missing vision in the top left hand quarter of my vision. I found it out over a year ago by chance when I went to try and find out the cause of a persistent headache by visiting a high street optician. The day I went for the test the optician handed me the results in person and told me to take them straight to my GP myself instead of waiting for them to travel through the post. Not good. This is my original post with the results. It is immediately obvious that something isn't right. 

Anyway I've been seeing a opthalmology consultant since then for various tests. This time around when I went to see my hospital ophthalmologist on Monday after some more visual field tests the results show that there is slight improvement in my vision!! I couldn't believe it, I've had visual field tests many times over the last year to check on progress and each time it has some back the same with the longer it went on leaning towards it not improving. Best surprise ever. I have more tests booked for in a couple of months to see if there is further improvement of whether it has stayed the same. 

Whilst I was at the hospital I bumped into a couple of old faces as well one a fired from university who has taken up a placement as a medical photographer and happened to be in the department. Then another fabulous girl I met on a ward when we were both admitted together a year ago and we were the youngest on the ward by a long shot, she happened to be walking down the corridor as I was leaving the department. 

So believe me I was (and still am) one happy bunny! x

Reunion

This weekend was amazing. I spent two whole days with my beautiful friends with whom I lived last year. One of them is one of my oldest friends and another three who until I moved in with them a year previous to them graduating as doctors I had never met. If you were to see us altogether now you wouldn't have a clue that we were complete strangers not so long ago! I love them dearly and they have stuck with me through high and low since the day we all met. Through the seizures, hospital appointments, mid journey on the motorway stops because I'm seizing once again, the too poorly to make myself anything to eat so they cook me dinners, visiting me in hospital to put a smile back on my face, the trips out that make everything feel "normal" again. Very happy and safe times. 

Since leaving university in June this year they have all split up and live in completely different areas of Britain. It is a massive shame but they are living their passion as doctors and Britain is a surprisingly small place and in just a matter of hours on a train one or two of us can meet up. This weekend however is the first time we have all been back together in one place and it's like we never split. Despite being between the ages of 23 and 30 we all act like children... refreshingly carefree. 

We each travelled to meet in mid Britain to the city that Rasha lives in to celebrate her belated birthday together. We stayed in a lovely hotel high street level looking out over Birmingham over three sides. It was also Diwali over the weekend as well so right across the landscape beautiful fireworks sparkling in the sky. Hours were spent talking about each others lives and laughing over memories. We ate out in lovely resturaunts and returned to an amazing restaurant we visited the last time we visited Birmingham when we went to kit ourselves out with Asian attire for one of their weddings. Previous trip to Birmingham plus we went to see a Bollywood which was hilarious! 

We gave our gifts over to Rasha to open whilst we sat down to dinner and afterwards presented her with this... Check out this cake!!! It was amazingly detailed and absolutely delicious... it didn't last long! 

It really was a great weekend and I felt very emotional leaving them behind again but we're already planning our next meet up and even a holiday... once we've saved up the money! 

Three years today.

Three years have passed since I heard the words "you have Epilepsy" come out a neurologists mouth whilst looking at me. 

I didn't react that day but I always tell people that if I knew then what I know now in terms of what life would hold from then on, I would have reacted very differently. In fact I don't think I have the words to explain how I might have reacted that day. 

This blog has been my release since that time and will continue to be so. I will continue to try my best to raise awareness to whoever will listen, so far I blabbed on through here, Facebook, on the TV, radio and of course in person! 

I'll be forever thankful to everyone who has held my hand both physically and through kind words and thoughts.

x 

Epilepsy Awareness Month

Flying visit post due to being away but...

The 1st of November is not just a day you get to pinch and punch a person with no returns (before noon of course), it's also the beginning of Epilepsy Awareness month!

With events taking place everywhere there will be vital funds and awareness raised all to aid fight  against the condition. If you see someone wearing a particularly large amount of purple who knows they could be doing something for Epilepsy if they are not, it still made you think :D

Happy Epilepsy Awareness month all <3