Seizures + Endocrinology

Urgh the last few days have been rough. A seizure hit at about 6am in the morning on Wednesday. I knew it was coming as unusually for me I was struggling to sleep and constantly waking up feeling sickly and generally "not right". In the end I got fed up of dozing so thought I'd take a cool shower in the hope of feeling a little better. But in the space it took for me to get out of the shower and get dressed before putting my seizure alarm back on. Bam. I was waking up on the bathroom floor with a very sore shoulder. Lucky for me I didn't hit my head this time so that's a plus! My seizure was accompanied by a Migraine for the rest of Wednesday and into Thursday. Today I'm feeling almost back to my normal self though :)

Anyway what I was intending to write about was the problem I seem to have with my blood sugars. I'll try to explain. 

Since I altered my diet to low carb and eating little every 2-3 hours I've seen a little decrease in my seizures which is amazing. This is in comparison with a standard diet of 3 meals a day. Now we're trying to find out why this seems to be an issue.

On various occasions on admittance to hospital for seizures, when my blood sugars have been checked they have come up with low readings. Now was the question "which came first, the seizures of the low blood sugar?" and this is what my doctors are trying to determine. 

When your blood sugars drop too low your body sends out a adrenaline response (usually seen as tremor and shaking) My theory is that, because my seizure threshold is lower due to having Epilepsy my adrenalin response comes in the form of a seizure as well as the usual signs and symptoms. Now it might be that they drop too low or the drop too fast. I'm no doctor though but after discussing this with my Neurologist he seemed to agree that this might be an issue and sent me to see a Endocrinologist. My first appointment with him was a long one. He too listened to my views and after discussing everything to do with my general health, seizures and the effect of changing my diet he agreed that this definitely needs investigating. I left his office feeling confident, listened to and taken seriously.

I received his request for me to be admitted to hospital for a test within two weeks of seeing him. I wrote about it  **Here** . I'm waiting to hear about another test he wants to perform soon as well. 

For now each night before I go to sleep or before significant exercise I am to check my blood sugars to make sure they are at a level of 5.8 or higher. This then gives me a buffer through the night so as my energy is used sleeping the sugars will drop but hopefully not below 4.0. Now this is not really THAT low of a number but it seems to be a bit of a floor for me so as long as I stay above it the less seizures I tend to have. 

I do have to say though that this certainly won't give me any answers in the form of a cure as with most of my seizures my blood sugars are well within the normal limits. I'm ok with that though having less seizures is a pretty good start! 

Well that's me done for a little while as 5am tomorrow morning I'm waking up to go on an adventure with my medic family. It's my first major duty out of our county so we're staying away for the weekend. I can't wait to see what the time brings... hopefully not too many patients and absolutely no seizures please?! X 

Lemon Baked Chicken Wrap

Tuesday morning I woke after a drug induced sleep. Monday afternoon I'd started feeling a horrid Migraine coming on so I quickly took my migraine medicine but sadly to no relief. In fact it's working less often nowadays (makes a note to do something about that) followed in the evening by my Epilepsy medicines. Not a nice cocktail. Anyway I hate the way my medications make me feel sluggish and just generally horrible so I thought I'd whip up a healthy balanced lunch for myself to counteract some of the horrid chemicals floating around my bloodstream! :)

  

This is what I decided to make. A fresh lemon baked chicken and salad wrap. I thought I'd get a little creative and photograph the recipe of this delicious yet incredibly simple meal!

  

What did I use?

• Chicken breast fillet
• 1 Avocado
• Cherry Tomato's
• Quarter of a cucumber sliced 
• Fresh pea shoots
• One wrap - you can get them in all sorts of flavours, mine was just a plain white one as it was the only ones they had in my local shop! 

Firstly pre-heat the oven at about 180 Degrees C. 

Next take the chicken breast and keeping it whole 

place it onto a square of tin foil. Add any seasoning or herbs you fancy. I just popped on some of the usual salt and pepper then dribbled some lemon juice over it. 

Seal the contents in the foil by folding over the chicken and folding the sides until you have created a sort of packet. This keeps the moisture inside so the chicken doesn't dry out during baking. 

Place the packet(s) onto an oven tray and into the pre-heated oven for approximately 30 mins. Timings will differ depending on the side of the breast (oo err!) 

Whilst you are waiting for the chicken to cook why not use the time to prepare the rest of the fillings. I chose a fairly simple yet nutritious and delicious salad including cucumber, cheery tomatoes, pea shoots and my absolute fave avocado!

Chop your ingredients into manageable sized pieces that can be contained within a wrap without breaking free... 

So, the timer has beeped and now is the time to check your chicken. Always make sure the chicken is cooked the entire way through and piping hot. Nobody wants a bout of food poisoning now do they?! There should be no blood in the juices and the meat should be white through and through. 

Slice the cooked chicken and pop it onto a wrap either straight out of the oven or after it's cooled with you're other ingredients and you're done! 

One delicious well balanced meal full of protein and nutrients. Prefect. 

X

Fundraising - Pounds for Pillows

My fundraising page

My sister and I have decided to take part in a little fundraising by hiking over the mountain range seen in the distance of the above photograph. This is the Llantysilio mountain range that juts out of the earth between where I live and where my parents and sister live. It becomes a metaphor as a barrier to places you want to get to in life. Always a challenge, made more difficult by Epilepsy. Together we are hoping to conquer it in one day by walking the entire length and hopefully raise some pennies along the way. These pennies will amount to pounds which can be donated to my chosen charity Epilepsy Sucks UK and transformed into life-saving anti suffocation pillows. These pillows provide a safe nights sleep for people like myself who suffer with nocturnal Epileptic seizures. If you follow my blog you'll know that it won't be as easy for us as it might be for others. The very ability to walk this journey means the world to me every day as in the past seizures had taken the idea of walking "normally" away. Now I'm going to take advantage of my being able to walk and never take it for granted!

You can find out more about the charity and the wonderful work they do here!

If you're interested in the challenge that my sister and I are undertaking then feel free to visit my fundraising page here!

Much love X

Run down

Well spring has well and truly sprung here in Wales which I'm sure plenty of people are thankful for! 

Life has been very busy recently mainly with St John Ambulance duties, catching up with people and general life happenings. I'm also in the middle of making a big decision that will change the course of my life which is causing some stress but I'm keeping that hush hush for now! 

I've been fighting off a strange chesty/throat type cold. I wake up in the mornings after waking up multiple times during the night with no voice and by the time I spoken to people throughout the day I gain my voice back but loose it again but the evening. Talking leads to coughing which leads to streaming eyes! This has been going on for a few days but it's only today that I've started to actually feel poorly from it. The usual tiredness, headache that won't leave and achy muscles. 

I took a light stroll along the canal earlier to take in some fresh air and stretch my aching legs a bit after a day on duty. I feel better for it and it's always nice to soak up a little bit of sunshine!

My "to-do" list only consists of laundry tomorrow so hopefully a full days rest will do me some good and let me recuperate before yet another busy weekend. I can't let myself get too run down or of course the inevitable seizures will start to creep in take hold. 

So it's an early night for me! X

Today is a good day.

Do you ever have those days where everything just goes right. Everything seems to make sense and fits perfectly into place with everything else?

Today was one of those days.

Days like this don't happen often. The sun was shining, I got through my list of chores with ease, completed some tasks I'd meaning to get to for a while, had a good honest chat with my dad, caught up with my sister, had an impromptu but confidence boosting meeting and finished the day with a much needed kickboxing session. 

Today I had energy, I felt refreshed and most importantly I did not experience a single seizure. 

Today I felt like I could conquer the world.

Perfect. 

Hospital 72hour Fasting + Seizures

Friday evening I was discharged from yet another stay in hospital. Thankfully this time it was a planned admission under the care of my Endocrinologist. I will write a post as to why I have been reffered to this doctor shortly, but it's basically to do with my blood sugar levels possibly being a factor in triggering some of my seizures.  

This stay was only 4 days so not to bad. It was so they could carry out some tests whilst I was fasting for 72 hours or three long whole days and nights!! This was no easy task when I was perfectly well at the beginning of it and used to eating every 2-3 hours. The intention was to record my blood sugar levels every four hours during the whole fasting session to see what they would do and how my body would cope. As I was well during this admission I thought I would capture a few snapshots on my phone to create a little diary as to what it was like and what I got up to during the time. 

So it began on Tuesday morning. I was told to ring the ward I would be staying on and see if there were any beds available for me to be admitted. Now here in the UK the NHS is under extreme pressure, more than ever before and is in the news daily due to lack of beds and waiting times etc so I was not expecting a bed to be available so soon after my initial appointment with my Endocrinologist three weeks before. I telephoned the ward in the morning to be told that there was 99% chance of no beds available. Lunch time however I was called by the ward sister and informed that they were hoping to discharge one of the patients depending on blood results so don't go anywhere far incase I do get called in. Low and behold later on that afternoon I was called again and asked to be at the hospital within the hour to take the bed. 

The fast began as soon as I arrived. For the next 72hours I was to only consume water, black tea and black coffee. I'm not a huge fan of black tea and coffee so essentially all I could drink was the water. (I did try a cup of black coffee after a day one but it made me feel sick!) 

In order to undertake the fast I had to have a cannula inserted. I'm pretty notorious for not having the best veins ever. They are weak from so many past insertions and tend to shy away despite being fully hydrated. It was essential to have a cannula fitted not only because of possible hypoglycaemic episodes where they need to get sugar in me fast but also due to the chance of me needing intravenous rescue medicine in the event of seizures. I couldn't believe my eyes when the doctor who clerked me in managed to insert a cannula first time! It wasn't to last...  

Within hours the cannula site became red, sore and started to swell. I asked the nurse to look at it as it was becoming painful to move my hand. She tried to flush it with saline but unsurprisingly it was blocked. She then tried to locate a vein to insert another needle. After attempting to get one in she failed though. 5am the next morning I was woken up by another doctor who had come to attempt to insert on again. 5 attempts later, with blood all over my sheets and him having being showered in saline I still had no cannula fitted. They then called another doctor to come and try who used to be a phlebotomist. Thankfully on attempt 9 (which believe is or not is still a a low number for me!) she managed to successfully cannulate me! It couldn't be inserted fully in so had to be taped, plastered and bandaged to me so I didn't accidentally knock it out. PHEW! 

So I had a lot of time to do a whole lot of nothing. I spread my time out by listening to music, reading and watching downloaded tv programs. This got boring very quickly though.  The worst thing however was when everyone else on the ward was eating their breakfast, lunch and dinner! Especially when the food trolley would come onto the ward and fill the air with the smell of food. I know hospital food doesn't exactly have the best reputation but when you're really hungry anything sets your stomach going.

During lunch times I would go and have a shower to avoid the temptation for a while. Then during dinner times I would escape the ward and wander around the hospital corridors or sit in the day room catching some sun. I was very lucky to have lots of visitors during my stay :) ranging from friends and family to doctors and nurses who I know personally that work at the hospital. The paramedics I spend time with out on the ambulances as an observer with even popped in a couple for times. It must have been strange for the other patients to see me with people in all their uniforms just sitting hugging and chatting with them. It very nice to have friends from various areas of the healthcare profession when you spend so much time in hospital!

It was inevitable really that at some point seizures would hit. They did so at 4am on my third night there. To be honest I thought it would be sooner. I woke up the next morning to find myself with an oxygen mask, the sides up on my bed and feeling like I'd been hit by a train! I'm told I had gotten out of bed just before 4am visited the toilet then on my way back had gone over to a nurse and asked her if I could have one of my migraine tablets. By the time she had gotten to my medicine cabinet she had found me seizing on my bed. I was left so utterly exhausted for most of the next day and remember none of it.

By the time came for me to be discharged I was allowed to eat. When the nurses asked me what I would like they told just say anything and we'll see what we can do as it was dinner time on the ward anyway. All I fancied though was cold, buttered toast. Yep. Hospital toast is usually cheap white bread, cold, chewy and dosed in butter. Which just so happens to be my favourite and I rarely eat bread at home so I was taking full advantage!! At first they said that there was no bread to which I was genuinely gutted. But of course they were joking and brought my a pile of toast with a sugary hot chocolate and I can tell you it was the best meal ever! 

And that was that. My endocrinologist came to visit me everyday and just before I was discharged. He told me wants me back in for another test in about a month but thankfully this will only be a day case. I'm interested to find out what he thinks and what the results will be. x  

Young Epilepsy Champions Awards 2015

Well I've finally got around to posting this in amongst the business of life, visiting family, St John duties and seizures of course! 

During the evening on March 26th 2015 London's City Hall played host to the Young Epilepsy Champions Awards. I was delighted to receive an invite to this years ceremony due to this very blog. Before I knew it I was hopping on a train down to London ready for an extraordinary night.

This years event was an amazingly inspirational night where some of Britain's most inspiring individuals where recognised for their efforts in the fight to raise much needed awareness of Epilepsy.

Guests amongst many others included athlete Dai Greene and footballer Leon Legge both of whom have suffered with seizures themselves and despite battling Epilepsy have become incredibly successful. Always great to know!

 Just look at that view!

It was a brilliant night which I thoroughly enjoyed and I want to thank Young Epilepsy and everyone involved for their continued support towards the Epilepsy community. It's events like this that bring us together in our fight and allow us to truly know we're not alone. 

*Here* are this years awards winners in the various categories. Well done to you all you truly deserve it! 

I was lucky enough to bump into one of the most inspirational people in my life. The founder of the charity Epilepsy Sucks UK  Sallieanne Gould. I first met Sallieanne at the awards in 2013 where she swept the stage gaining multiple awards for her work for Epilepsy Sucks UK and Epilepsy. Long before this though I had gotten to know her online in a support group ran buy the charity on Facebook. Through them I was able to gain an anti-suffocation pillow which I can safely says has saved my life on multiple occasions!

I attended the awards two years ago due to having taken part in an ongoing campaign named "Everyone knows Someone" ran by Young Epilepsy and fashion label River Island (here's a link to their website if you want to find out more!).

This isn't a particularly long post for such a significant event due to the fact I'm currently packing for yet another hospital stay for at least five days so I thought I'd get something down before I go in. In fact I might update it on my return!

See you on the other side x