Tag Archives: seizures


This is just a quick entry to explain what happened today and why I’ve not really spoken to anyone and said yeah drs fine, 1) because i’m too exhausted and 2) because I don’t know whats what yet. 

Well today after a night of head pain and added noise of a cold and windy night and out back gate banging in the wind and hence very little sleep I toke to a day at the dr.’s…. little did I know this at the time. The 1hour job ended up taking 4 hours! A lot of waiting was involved and Im now typing this after having a sleep and I still feel exhausted!
I left the house at 8:45 and managed to get my appointment with the dr, We just went over what had happened over the past couple of weeks and made some minor medication adjustments and then was sent for a ECG. Last time I had a ECG my heart rate was slow and as I am now on the new drug which can cause problems with the heart they are keeping and eye on it. I was really pleased when I asked the nurse from behind the curtain if my heart rate had gone up and she said yes… I thought this was going to be far better than my last appointment. How wrong could I be. 
I got dressed and the nurse said she would show the dr. Well it turns out there was something wrong with the ECG this time… I was ready for it though as Id been given a copy of the ECG which read “abnormal ECG”. I was tired, cold, my head and feet hurt and I was fed up with waiting ! 
An hour nearly passed in which time all things wonder through your head. Finally the nurse came back and blurted some stuff which I have no idea what it meant “A Junctional rhythm with non-specific ST and T wave abnormality – Abnormal ECG”which was pointed out to me on this paper followed by a the doctor wants you to book another ECG friday afternoon with an appointment to see her afterwards. Well i though i’d never get an appointment for that soon and for both at the same time… well actually I did which is unheard of at our surgery… normally I’ve been booking my ECG’s a week and a half beforehand. So mum was standing looking kinda freaked out… to be honest Im not overtly worried, Yes I’ve had some chest pain but this isn’t anything new from my last ECG and nothing bad has happened yet so why worry what a few lines on a bit of paper say!. Friday is just 2 days away so we will find out more then. For now i’m not thinking about it. 
Needless to say being at the dr’s for that long was exhausting, I’ve had a little sleep and now plan a long hot soak in the bath. 

Other than the escapades of today things have been slowing down a bit. The headaches are easing although still getting on average 3 attacks a day. Im now able to concentrate a bit more on the fundraiser and am making awareness ribbons and other things ready for 19th October. Its all quite exciting as i’ve never done anything this big and organised the lot before. Its going to be really good though and Im really hoping people turn up so we can raise lots! 

Well Friday I had my repeat ECG. It was a bit of a nightmare and I’m putting it down to being Friday 13th even though I’m not really supersticious. The surgery computers had crashed and that included 
the ECG machine. They finally got half of it up and running so I was able to have the test done. The dr came in while I was having it done as she wanted to see it. It turns out that the on previously had shown I had first degree heart block. The dr was hoping that the heart would recover and only do this occasionally and recover in between which it looks like it does. At least I know know why I get my chest pain every now and then however good news is that so far I can still stay on the pills but need close monitoring. 

"Epilepsy never makes me shy away from life"

A few days ago I got contacted by a lovely lady called Liz. She is a reporter and done the previous articles on me  and my awareness videos and doing my abseil (if you’ve not read them they can be found by clicking here Abseil article and here Awareness video articles).

In our paper there is a section about people in the town. I always thought people in this section were prominent people of the town though now i have been asked i’m not so sure what their criteria is.
Anyway I was asked and I agreed. I got sent some questions and replied and this is the result.

Click here to read the article online

Planning a Fundraiser

While I lay awake with pain from the tip of my toes to my head after a severe seizure, what do you think I think about? how unfair life is? how I wish things were different? oh boy how depressed am I?

No … I think about what Im going to do next. I think about what I can do to make a difference. How can I raise more money for epilepsy action next. I think about events, ideas, purple things (the colour for epilepsy is purple). 
Well a couple of weeks ago I was doing just this. I had suffered 3 seizures that day and was laying in bed with a cat by my feet and I had a idea pop into my head. Id read the latest epilepsy action magazine which had a advert for the “epilepsy tea break” I decided I would do a fundraiser around this idea but expand it. I wasn’t content enough with just a plain ld coffee morning.. i needed something more, something that would need organisation and planning. A fundraiser was the perfect idea. 
I broached the subject to mum… knowing she hates events, crowds and anything that needs such organisation people I wasn’t expecting the positive reaction I got however that was it then… Note pad and pen out and I’d started planning. 

The plans  are still in the process of being organised but the event called:

“Jo’s Epilepsy Awareness Tea Party” 

will be taking place on Saturday 19th October 

between: 1pm – 5pm GMT

At: my house…. 4 Mill View Road, Herne, Herne Bay. CT6 7JE

Please come along 

There will be craft stalls including “dream a little dream”: by Lara Simpson
who makes stunning dream catchers 

Epilepsy awareness stall

Crafts by Claire 

Glitter Lining crafts 


Refreshments and Cake 


A quiz

Glitter Tattoo’s 

Nail art 

and more. 

More details will be given in due course 

Home at last.

We arrived home. that night pain levels were obviously still high. Higher i think as I’m sure the morphine i had was not as strong as the hospitals however i was home.. i was happier. 
In the end i think its things like comfort, family and friends that help the healing process. My friends are amazing – they come to my hospital bed and they come to my home but when I’m at home its so much nicer and for my friends who are far away I can FaceTime them at home and seeing them makes me happy. basically life was really bad but better at home.

The next morning I woke to severe pain. I had the morphine and we managed to see the GP. It was a real struggle to get up there but we needed to. The GP prescribed something called M.S.T and was told to take one straight away and then use the oramorph when the pain was really bad. 
I continued to do this for the next 24 hours – i began to itch though – it must be a side effect of the medicine. i managed to sleep again but it was restless sleep. 
I dont know if anyone else has felt like this but i was asleep yet i could still feel the pain – i tried to wake up but couldn’t. i call this Kruger sleep cos its a nightmare ! 

The next few days this all continued – with one change of the GP swapping the MST and oramorph for oxycontin and oxynorm. 
This wasn’t a good change though. The new meds made me feel terrible ill and sick and we had to get the GP to come out again –  gave me an injection and we went back to just the oramorph as the other meds were not agreeing with me. Shame as the pain had been less on the oxynorm. 

The next few days I slept on and off – my oxygen levels occasionally dropping and me still having seizures almost every day on top of this. 

Hospital hell.

Well Ive not blogged in a couple of weeks because Ive been in and out of hospital. It has not been a nice few weeks either… not that any time in hospital is nice but this couple of weeks experience has been exceedingly bad. Ive had everything from poor care to route staff and being discharged from hospital in severe (and i mean severe climbing walls pain!). Thats where I am at the moment. 

It all started Tuesday 29th July. I had a really bad day trying to keep my headache pain down, I had taken several doses of oramorph and had been on the oxygen a lot. It was helping to keep the pain down but the pain was not cope’able.  I finally managed to go to sleep in the late evening. I was so tired because pain is so draining. Id also had many seizures that day which in themselves are draining to a great degree. The next day (30th July) I woke with the pain again, Struggling through with the oramorph, oxygen and still having seizures I couldn’t go on any longer. The seizures got worse and mum called the ambulance. I was given morphine through a cannula in my hand and taken to hospital. By now the hour was late and we were into Thursday morning. 
The pain started to build up again, all i had done was move a couple of steps!. I was given more morphine through my drip. A nice Dr also managed to get blood from my other hand…. so this point I had 2 needles in ! 

I stayed in the CDU for a few hours where I was given drips to keep my blood pressure up and medication for the seizures and pain through the drip too. 
After I was moved to treble ward (the neurology ward). I was put in a side room and given oramorph when the pain was bad. However things were not all that easy. It was really difficult because the nurses were not all nice and happy and easy going.  The pain relief was also slow… Id have to wait up to half an hour in screaming pain before the nurse finally administered pain relief. It was hard. 
Friday the neuro team came and I was prescribes codeine. Varapamil (a strong heart drug that is supoes to help cluster headaches too) was discussed and prescribed. I was also put on the video telemetry for a few hours to see if they could see if the seizures came from a different area when I was in pain to not in pain…. I never did hear the result of that. 

The Next day the weekend dr came and he was lovely (really explained things and took his time to help). He prescribes Naproxin to try and sumatriptain. Id tried sumatriptain before and I wasn’t really happy about trying it again as It sent me into seizures but with the pain this bad I was out to try anything and everything. 
The naproxin was taking too long to kick in – i was spending up to one hour in severe pain before it would help by which time id either had to have oramorph or had started having seizures. 
Later the Dr came back and suggested I try a sumatriptain injection. I agreed. The nurse hadn’t done one of these injections before (i had) so I let her do it as I talked her through the self injecting gadget ! The drug kicked in pretty fast as I get a tingling sensation all over my head and my arms felt heavy…. But then it all went black as the seizures started. The drug made me feel very very ill. It was the exact same effect it had taken on me almost 10 months ago. The next day I just went from one attack to another. I was weak, not eating and very down. Pain is exhausting. 
Dr Wan had written on my notes that if i was having a bad attack oxygen was to be given and then Naproxin within 15 minutes then or if longer than 15 minutes…. Morphine was to be given. 3am in the morning and the nurse took such a long time (45minutes ) in administering the naproxin it had gone beyond that stage and I needed oramorph.  
I was in agony, I got angry that it was taking such a long time to get any pain relief and i demanded to see dr wan (who had said to call on him any time while he was on duty. The  nurse refused to call the dr and insisted on the night manager who never did come until 4am when the nurse did call Dr wan and he happily came. 
Naproxin was withdrawn as the benefits we nil because it didn’t kick in soon enough. Oxygen and morphine was all that was left. My notes now said oxygen for 15 minutes then if ineffective morphine to be given immediately. This way i was only enduring 30 minutes of pain rather than over 1 and a half hours. 

The next day i encountered a serious bad judgement of the staff of me and my condition. I suffered a cluster attack so grabbed the oxygen mask and started using the oxygen as dr wan had told me to. within 5 minutes the sister of the ward (who i had not even been introduced to) came into the room and told me to get off the oxygen. Shouting that its toxic and i shouldn’t be having oxygen. Not what you want to hear when your in screaming agony and doing exactly what the dr had told you too. I told the sister the treatment plan but it did not stop her. I was in tears as the pain was so bad and the situation was not good. Thank god for mum being with me. I love her to bits. 
The dr came at lunchtime and things were discussed. He admitted the treatments were trial and error due to the two conditions clashing. we were willing to go along with the plan  – we needed help.
Since being in hospital sleeping and rest was a big problem, i was getting very little and was exhausted. the noise levels we really high and 2 nights running a screaming patient had been put into the room next to me. 

One night I had a sudden pain in my chest. It was sharp and crushing. The nurse done my observations my oxygen level was 82%. My blood pressure 154/78 ! this for me was not normal yet they didn’t seem bothered. Mum and I were both concerned as i was on Verapamil (for my clusterheadaches yet was a heart drug). She did a ECG and sent for the on call dr to see. The dr then came up and suspected something called costrocondraditis – confirmed by an xray that i was sent for later that night. 
When I came back from xray the nurse was asked by the dr to take bloods. When the nurse came she looked at my arms. I asked her to go in the back of my hand as my veins in my arms were sore and rarely if at all in the past 4 years have managed to give blood. She refused and went in my arm. She kept prodding the needle in and out (it was extremely painful), still not able to get blood she kept trying… it had been over 10 minutes and i asked her to remove the needle – she refused. I was in too much pain asked a further 3 times and finally she did. I said try the back of my hand cos people can get blood from there…. the nurse threw the needle into the bowl and stormed out…. I never did get my blood test. 

The next day I had, had enough. I wanted to go home – i was exhausted , no sleep and staff being less than caring was not helping my situation. 
I have oxygen and morphine at home and could do the same care there and have sleep. we spoke to the dr who obviously didn’t want me to leave but understood it was the only way for me to rest.

I self discharged and came home – i felt like i could sleep for a week.
the dr had told me the treatment plan so i could continue that at home. 


Well the last few weeks have been a struggle. Ive gone through many emotions a few different drs and hospitals. The news on all fronts have not been great and ive not been feeling great on top of that. Basically life seems a viscious circle in many ways. The seizures cause joint pain, headaches and stress of family, friends and in turn make things difficult. I want to do things but I get limited by people thinking they know what is best for me when in fact they are making life worse… more stressful because I still want to try being “normal” whataever that is. Its not like i want to be like everyone else… thats never been my style However I want to live life, Enjoy what I can. Yes sometimes I push things to the limit but life is for adventure and for living. Not sitting on the sidelines wondering what is out there. Ive also been having worse cluster headaches. I haven’t spoken about cluster headaches much in this blog I know but yes I have cluster headaches too. Diagnosed when i was sitting with my epilepsy consultant one time and my Dr asked me some (what I thought) odd questions on my next appointment after reading my hospital notes. I answered them and bang – another diagnosis, lot of pills and other things to learn/ understand. Well i’ve been reasonably coping until recently. My episodic clusters have turned into chronic meaning they are several times a day. This does not help the seizures either.
We have also found that my seizures occur when i’m in pain and my oxygen levels drop – hence alot of the time im hooked up to oxygen trying to quench a headache and stop seizures. Sometimes it works – sometimes it doesn’t. Either way its another thing in the way of life. Ive not had a seizure free day (grandmal becasue I dont really count the absence ones) in 5 weeks. Before this I maybe got one ever 2 weeks. Im getting tired now, my joints are suffering badly and Ive damaged my neck. Im now at the stage where Ive got some things in order and now its time to fight or run and damn the consequences. Im not going to run im going to fight for as long as I can and for as hard as I can.

Fight for fun
Fight for life
Fight for a seizure free day 
Fight for a pain free Day
Fight for epilepsy awareness.

 Im waiting for an appointment go go back to london for more treatment of some sort – we dont know what yet. I know surgery is not an option unless they find something new as my seizure focus (where the epilepsy is and starts) is no longer in just one side of the brain but both. its not just in the one lobe anymore but in 3. time will tell but for now I dont know what the answer is. 

A poem edited for epilepsy: 

“What Epilepsy Cannot Do”
Epilepsy is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Even if just for a moment it does any of the things above… epilepsy and everything else will not win I have epilepsy – it does NOT have me.It is not Who I am – it is only part of me. I am not defined by it – i dont want to be.If I die tomorrow I want to be remembered as the bubbly crazy wacky purple, glittery disney loving girl  who was fighting for epilepsy awareness. Fighting for funding for people to help find the cure we all need. I want to leave my mark on the world. Help and inspire people – that is my wish.

Night night. xxx

Planning Ahead.

So a couple of posts ago I spoke about my wish not to be resuscitated if anything should happen to me in a seizure. Well the deed is done so to speak. I  have made my advanced directive and am working through making a will which also includes writing letters to people to read when i’m gone which to me seemed a bit weird but im doing it…. its hard and almost have no idea what to say… do i add jokes or do i make it all sombre? well if you know me you will no that yes i’ve added jokes!. 

Being that Im so young and the situation would be an emergency It would be very unlikely in an emergency situation that a paramedic would know what not to do. By contacting legal advice I have been given a card to cary… it looks like a credit card but says ive an advanced directive. The card came from the same people who are helping me make a will and finalise any other details with regards to what I would like to happen. For example my funeral. (oh what a happy blog this is ha ha)

It is difficult and emotional but its the right thing to do. I want to make my own decisions and i want to be prepared. I do not want to end up like a cabbage. 

I spoke with a friend the other day only briefly but enough to make me think i was definitely doing the right thing. It helped to say it out loud I guess… I explained that I didnt want to be in a useless body with a sound mind, or the other way round. I know that many people do not get the choice (those born with disabilities) however as my friend pointed out… They dont know any different. I will. I will know about the life that I could have had or I will know that its hard on the people who would have to look after me like my mum. I would know all these things and not be able to do anything about it. 
That is the difference and that is what I could not bare. Now see me as a coward if you will but Id rather not be resuscitated. 

Lots of people have said im brave. or its a brave decision. I dont think so. I think its the right decision, a difficult decision that has not been taken lightly. Yes ive had sleepless nights, ive had nightmares of what could happen and ive woken up and sat bolt upright thinking that i have to do this to stop my worst fear from coming true. I guess its scary but life is always scary but for different reasons for different people. 

Dont think im giving up on life though because im not. I will neaver willingly give up my fight. Every day i cherish, every minute of seizure free activity is a bonus and every minute off oxygen makes me feel free. 

Life is amazing but I must plan for the future. 

Stop and smell the roses !

Stop & Smell the roses, It’s Not a Competition
Throughout our childhood, there is a strong focus on being the best at everything. mostley this comes from our parents ans peers who although they only mean to encourage, they create this thing where a person feels they need to be the best in sports – being picked first and being picked for the school teams. The best in class – getting the best grades; the best report card; the best places at the best universities. The best phone; iPod; clothes. The most popular. The most likely to succeed. I could go on… My point is, there is a distinct emphasis on where you were/are placed  in a imaginary or physical league table of your peers.
As we grow up into ‘mature’ adults…  And leave the world of compulsory education, we unfortunately continue this obsession of how we are comparing to another.
For those of us with disability or chronic illness, comparing ourselves to our able-bodied friends can be seriously detrimental, making us depressed and feel worse. 
So-and-so from high school just bought his first house.
Whatshername from university has just been awarded her PhD.
The guy down the road, he’s making 60K a year.
John and Jane from college are married, two kids, and are going on holiday to Australia.
Need I go on? I’m certain if your reading this as someone with a chronic illness you’ve said similar to yourself.
I’m certain you have replies to all of those sayings too. You haven’t been on holiday in years. Living in rented accommodation or with your parents! . You barely making ends meet, or living on benefits.
But listen to me…. life is NOT a competition.
The people we relentlessly compare our ‘failing’ lives to don’t have to live with these life-changing/ life limiting illnesses. You are a SURVIVOR, and have lived through experiences they couldn’t even dream of in their worst nightmare!.  You have the ability to help and support others in similar situations – no amount of education, or money, or fancy plasma TV screens can mimic that. You have knowledge of the health system, of treatments and hospitals, doctors and health professionals. All of your experiences are USEFUL, and while we may wish we didn’t have that pleasure, we can turn around the negative and use it for positive.
While you may see better things in their world than your own, jealousy is an ugly and unhelpful thing. Instead, why not use these  feelings to try and improve your own situation – IF you are well enough. So you can’t do this and that but we live in a world of computers and social media ! If someone told me 5 years ago that I would be a world wide advocate for epilepsy awareness I would have told you ,your mad. Yet here I am less than a year on from when I started speaking out about epilepsy, My epilepsy, sharing my life with you all. Before this I was scared, tired, upset and felt worthless. I resented epilepsy for taking everything away from me. Now although I’m still not happy (I mean who would be) about my situation but I have my own blog. YouTube channel, Instagram and all the other social media things. I’ve abseiled, started a lantern ceremony, celebrated purple day, raised over £720 in 4 months, been in the newspaper and am about to get published in a worldwide magazine… All in this short time. You have the power to show people life shouldn’t be taken for granted- the more people realise this the more people will enjoy the simple things in life like we do… Like I do. 
I appreciate being able to get up and out of bed, I appreciate every part of life when I’m conscious and able to see it, I appreciate being able to have a bath, I appreciate when I don’t have to take all my pain killers, or don’t have to be on oxygen, that all to me is freedom. There are so many things I appreciate that I know everyone else takes for granted and I tell you something, I feel I am more empowered to go forward in life: no matter how far I get in life. 
Living your life thinking you are failing in comparison to others around you, will ONLY set you up to fail. CHANGE your way of thinking. Challenge instead of competition – challenge yourself to improve what you have, but ultimately you need to love the life you live.
A good friend of mine told me that life is different for everyone and i was given this life by god because he knew i have the strength to cope with it.  Coping with illness and pain takes a lot of daily effort. Just as much – if not more than being in full time work or being a mum or anything anyone else is doing. It’s just a different strength. 
Life is not a competition or a race. Life is for enjoying, exploring and experiencing. The more you compete – the more of life you will miss. Go slower stop and smell the roses and enjoy the small things. 

If i die young.

Ok im not going to be depressing or dramatic here. Yes ive had some really down days… Life has been difficult but im ok. Things wont change but i have them all in my head into their little neat spaces instead of making my head muddled and a mess. 

I was asked to do another video by so many people. I didnt know where to start. I began with a song a jessie J number.
I then went away on holiday to see my best friend for a week,  I had such an amazing time. During that time though my world changed  that little bit more and epilepsy took a little bit more from me. I ended up in hospital as you know from my previous blogs and then when I came home i was again in hospital some more.
During this time I was told by drs that with the amount of seizures Im having and the amount of times im suffering from status epilepticus where I have repeated seizures without regaining consciousness and where my breathing changes and stops on occasions my future is not looking good. my future may hold brain damage and death if this continues. Luckily so far Ive escaped with only slight  blurry  left eye. I was also told my epilepsy is no longer limited to starting in my temporal and occipital lobe on the left but has now spread and is on both sides of my brain. Surgery is not a viable option as this would also cause brain damage.
Depressed, upset and at a turning part in my life I looked through some songs and found this one. (if i die young) It seemed to fit what i had just been told.
Im not being depressive about all of this but it is the harsh truth. So many people think epilepsy is just a condition where you take a pill and no more seizures …. If only it were that easy for us all.
Mothers and fathers have lost sons and daughters to epilepsy, Ive lost good friends. The truth is that epilepsy kills over 1000 people in the UK alone every year.

More awareness needs to be raised and this is my wish and goal to do so. I love life and love my friends and family who help me when im struggling. Im still the happy bubbly person I normally am… I do have my down days but most of the time im still happy and enjoying life.
This video is just to make you think a bit more about how precious life is… it is not to be taken for granted. 

I hope you like the video and it raises a few questions of your own.
Love you all guys. Please leave comments if you like. its nice to know who is reading this… I just get a counter thing telling me people are here otherwise which is a bit boring. Would be lovely to hear some of your stories too. 

Love you all and remember Just keep swimming.