Tag Archives: status epilepticus

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. 




Home & drs.

I woke up friday morning with the most painful headache once again. My body ached from all the seizures and I was in and out of consciousness alot. I dosed up on medication and managed to get dressed and downstairs. I didn’t know but mum had asked the taxi driver to come earlier to get me home and he did. He was there at 11am.
I didn’t want to go but I did. I wanted to be around my own hospitals and Drs because I knew i was in trouble. The pain was so bad I was literally crying like a baby… it rarely makes me cry as ive a huge pain tolerance. I said goodbye to linda which was horrible, I love her like my sister and we have become so close… i hated to leave on this note where i couldn’t say or articulate words properly. I got in the taxi, surrounded by my pillows and slept as much as i could as that was the only time the pain was at ease… I say slept yet you never really “sleep” when in cluster phase… I was half awake and could hear a few things and could feel the pain but had almost put myself in a coma state to make the pain less (if this makes sense – cluster heads will understand).
We arrived home and all i wanted was to get my pussycat magick back from cattery.
I was still in so much pain but wanted to make sure magick was ok first. We went to the cattery.. i called his name and I was surprised he jumped up immediately and came to the door and started meowing… in fact he was constantly meowing until i gave him a cuddle… it was the perfect reunion.

On the way home I said to mum, I think I need to go to the drs.. We dropped magick off and got him settled and went to the drs (injections in hand) although given them mum has not been trained to administer and I was in too much pain to focus and hold a steady hand. we got to the drs but I collapsed in the waiting area and had a seizure. I was taken to a room and I had several seizures within the 3 hour time span we were there. My own dr was there (not that I knew at the time) but she was happy she had seen what happens as had not ever seen seizure and cluster headache before. (great dr i have!!!).

I was given an injection but it didnt work so the dr gave me morphine. I was still having seizures but when the meds kicked in they slowed. i started regaining consciousness in between and i managed to sit up. we got home somehow.

Great times and bad times

The morning of Jades Prom arrived. We had fat club in the morning (well I was visiting with Linda and Jade – before I get any of you curse me for trying to loose weight – IM NOT)
I woke up that morning knowing the day was going to be a struggle. I took my extra meds and kept my fingers crossed. I dont know how many seizures I had before we went that morning but I was close to a big one before we left I know. Thankfully It didnt happen.
We arrived at fat club and i recognised alot of faces from facebook and people Id spoken to via Linda. It was Lovely and really friendly.
There was a display going on and I took a look.

2lbs of fat !

jelly and cream (or a pint?)

One of the ladys whom I talk to on facebook Pat gave me some harribo… Linda and I were going to try vodka harribo at some point but these ones were to eat too. I had some hoping the sugar would help. 

everyone was lovely. 
During the meeting I started to struggle – I had to result to oxygen but it was running out. We got home and I felt my head start to feel really bad. I took pills, my oxygen and headed to the sofa for a rest. 
Jade was due to have her hair done at 2pm. I wanted to document her prom for her… I had 1 hour to rest and get rid of this headache. Well I did rest but the headache didnt go. 
The next few hours were preperation for jades prom. I took so many photos just of her hair being done.. 
I then went and rested and I really dont know for how long…. when the pain and strange feelings get to this point time passes that is all. I think I slept a little but I dont know.

Jade came down… I was awake and she looked stunning. I grabbed all the energy I could and my cameras and started snapping. We went outside and took some beautiful pictures and then I was honoured to travel to the prom with her… I took more pictures too. I was struggling the whole way but I love taking photos and it was Jades big day and she was so pretty.
When we got home however I dropped the camera and tried to edit some pics. In the end I had to resort to bed but I never got there. I went into status epilepticus and dont remember much I remember waking uo between a couple of seizures and Linda holding my hand, she will never know how much that helped. It was weird cos normally I can hear alot more than i could this time… everything was too distant and too scrambled. I struggled as much as I could to get up and stop but the seizures kept coming. I was taken by ambulance to Grantham hospital and I woke up again in resus at Grantham General Hospital. I couldnt undersand the dr, and what I could understand he wasnt listening…. my case is quite complex and they never seemed to understand. There was one really nice nurse who helped. I had a few tests and they gave me some medication and i was told to sleep…. yeah right ok so i slept, and they would wake me up for blood pressure,.. so id sleep again and the bin would bang down so loud i ended up having another seizure. In the end once id recovered from that seizure I self discharged myself. we called linda and she came and got us. (THANK YOU SO MUCH).

in Grantham hospital

Hospital again and drug trial

Well things didn’t get better after the last blog. I ended up in the large hospital about half an hour away, my head pounding and the seizures not stopping. I’m limited into what can happen how as most the drs don’t want to take me to theatre to administer the drugs I could do with fast. So I end up with lots of muscular injections, oxygen and oral meds. I thought this had worked and we managed to get home Monday morning. Unfortunately this wasn’t the end.
 I ended up with one of my own dr’s coming out a few hours later as the hospital drugs wore off and I ended up in the worst pain known (cluster headache has really set in). Having epilepsy is one thing but add that to this disease called cluster headaches which is defined in medicine as “the most painful condition known to man” and life is somewhat harder. So here I was more injections and drugs. My neck was really giving me alot of pain too as Id hurt it in a previous seizure a few years ago and it is a recurrent thing which normally gets better after a few days…. this time it hadnt. It just added to the pain :-(. 

For the next 24 hours I lay in bed sleeping, waking intermittently and more sleeping. I was trying to keep awake but it wasn’t happening my body once again taking over.  

I did eventually manage to wake up and be more alert but the drugs were making me sleepy. I had to get an appointment for the dr that week so 3 days later (when I felt strong enough to get to the surgery I tried to get an appointment. Well like most Dr’s surgeries in the UK despite being told by the dr to make this appointment the guard dogs (AKA – drs receptionists) wont let you book an appointment unless you are dying which at this point I thought I was with my neck. 
The next day I tried again…. I managed to get an appointment with a dr I’d never heard of. 
This is normally a waste of time for me as not many Dr’s are willing to change any medication or do anything without my epilepsy and cluster consultant’s and London consultant being notified first. This Dr however was different. He was lovely. He even had a skill very far and few between Dr’s ……. he listened. 

After a chat and examination it looks like ive damaged my neck as Ive had years of seizures.The epilepsy medication damages the bones, nails, teeth and all things like that so with the combination of medication since i was 4 years old and the recurrent seizures slinging my neck in awkward positions it is not surprising. I received some pills for my neck and then he asked me many questions.. We now have some different injections for home as well and medication to help the seizures when Im going through a bad spell. I already had some but these ones are apparently stronger and the ones I normally have whist in hospital so should mean another step away from hospital. Great!. 

About a year ago now I was told that there was a new drug to help the pain I get from my head and seizures and cluster headache however it was strong and acts upon the heart. I was told to get a ECG heart trace which I did. This was given to my consultant and I was then told I couldn’t go on the new drug. I was not given much of an explanation to my satisfaction apart from it was not right. Therefore I asked this new GP what was wrong with my ECG. Apparently he couldn’t even find it so I am due for another trace on Tuesday. Fingers crossed I will get a better reading and be able to trial this drug and maybe get relief. 

In the mean time I am also staying at my nans during the day at weekends with my mum as my grandad went into have his leg straightened again on Monday. The week has been hard but Ive managed one hospital visit and im at nans as I type. I am so sleepy on the new drugs and feel like im under water. Everything I do is an effort but I am forcing myself to get back to normal. 

Yesterday (Saturday) I installed Laras Dreadlocks ! I had never installed dreadlocks in my life before but with the help of youtube (god I love youtube) I managed it… 
Im really pleased with the result and I think Tink is too.


Today Ive rested and Im on the strong meds again as my neck is pretty painful. It doesn’t seem to matter what I do or what position I am in it makes no difference so its just medication and grin and bare it. The seizures are still unpredictable as usual and I need to get my confidence back fast. 
A spell like this always makes me think about doing anything or going anywhere cos what if I had a seizure…. but if you live life like that you may as well not live at all. Grab the bull with both horns and have faith no fear. 


Tomorrow is monday and I so want to go to band practice. I am going to see how I go and maybe even if I sit out for a bit I will at least get to play something. 
I love my music and could really do with chilling out at band and not thinking about much while I play. I miss everybody too. Strange really as you rarely get to talk to many people while there but Its nice to be with people who I do class as really good friends. 


Kent Coastal Concert Band is an amazing band.


Christmas & New Year

Christmas and new year is always a time I love and dread at the same time. Its very often full of arguments and walking on eggshells with my dad. However I do love the run up to christmas this year was going to be even more special as i was back at band and we had gigs which are always good but the christmas one is amazing. its the best concert of the year and this year I was going to be part of it!. 

The gig went really well as I always does, Kara and family came, mum came and brought my uncle and my cousins came I really enjoyed having my special people there supporting me. It was great. 







You can find videos of the band at  www.youtube.com/tiggerifficjem 


The gig ended and I felt sad… not only cos of that but because christmas was nearly over for me… I love the run up to christmas, not necessarily the actual day. Christmas afternoon is great as I spend it with my nan with my family but the day up to then is tough. 

This year was ok Well not too bad, Dad drank and he got moody but we survived.  Unfortunately half way through the morning I had a seizure. Epilepsy does not even let me rest on Christmas day ! mum was worried as we had to go to nans and have the traditional dinner. I wasn’t really very bothered with dinner but i managed it after a sleep. Another little rest and a read of my book that i got for Christmas and I was ready for nans. This also went well. This is the tradition I love, Going round nans and grandads and opening parcels, playing with crackers and the traditional who can get the streamers from the poppers over the living room light game. I love both my grandparents to bits. They are 89 and 90 years old so every moment is precious. 


Nanny and grandad Christmas 2012



NEW YEAR and new start? or not. 


New year we were invited over to Kara’s. Well it was the 2nd of January as our new year but to us it was new year. All day I had been feeling grotty, my head was hurting so bad, I stayed calm all day and kept taking the pills as I was allowed and prescribed. I still felt awful. 

The evening came and I selected my clothes, sat on the edge of the bed and knew that If I went out it would be a mistake. I said to mum how bad I felt but she said it was too late… we cant let Kara down this late notice. So I got my clothes on, downed some more medication and kept my fingers crossed. 

Our new years wasn’t the type that your probably thinking… we played monopoly ! The food was lovely although I only had a little and the games and company were good but as the night went on I felt even worse. We left. 
I braced myself as I walked home, and as soon as I got there I grabbed my Injection and pressed it into my upper thigh. This was a full blown cluster and I was about to go into a seizure too…. I was very poorly. The cluster headache died down after about a hour however the seizures didn’t. There isn’t much research into cluster headaches and epilepsy as cluster headaches are quite rare however one of the consultants I have seen told me that a cluster headache inflames the brain and the inflammation causes the seizures. 
I blanked out with the seizures again. That night I ended up in hospital again. So much for a new year and new start. No matter how much you want the seizures to go away they wont. 
I came home and once again ended up with a few days in bed and My eye was black. I was weak but I recovered and The year began again for me just a little late!



Loss of Confidence

If theres something I’ve learnt and thats life is precious. Epilepsy does scare me sometimes and so do the cluster headaches. I try not to show it, i don’t like to and I hope that people wouldn’t know unless they know me wouldn’t know what my life is about just by looking at me… why would they unless they spend enough time with me.   This time really did scare me. I had taken a picture half an hour previous to my fits and the next day when i was out of hospital i looked at it and there is no sign of what was to come. Like a time bomb waiting to go off? 


Painting before my seizure at the craft box


The next few days I rested and watched so many films that I would be great on a tv quiz show!
Monday I was due to go to art class. I really wanted to go as not only was I bored but I wanted to start on my big canvas. The problem was the art class was at the craft box where i had last been and ended up in hospital. I was embarrassed and scared to go back. Being the stubborn person I am (even to myself) i thought it was something i had to do… I thought if i didn’t i would never go back. I Picked up some flowers on route as I felt that Tory really deserved them she helped me that day more than I think she realises.

Mum dropped me off outside and I went in I was shaking, not only because I felt awful but I was so embarrassed. I met the other lady who was there that day but I had no idea how much she saw, if she knew or what as I was too out of it that day to know. She said Tory wasn’t there… My heart sank. I immediately started to feel scared as I knew Tory better and I was so unsure in my own body at the moment. I felt so alone.

I was given a task to do from the art teacher and just sat down and done it… i was shaking inside and my head was pounding. The infection had started to take its toll and my kidney was a constant pain in my side. I finished the task and was actually quite pleased with it. Now for the big canvas.

I started on the work but was so tired i was nearly in tears. I was scared and I felt I had to leave and quick. I made my excuses and left.
I walked up the road, stood alone, still and was in tears what had I done I should have phoned mum before I left. Now I was alone in the street and no help or security. I called mum straight away and she came down to get me.. I when home and cried. What a baby I though… yet now I felt It would be more difficult to go back.

Life was bad again and I was so so upset and tired.
The next day I got up and brushed myself off and told me not to be stupid I went to the craft box. I had to finnish dads plaque I was shaking when mum took me down. I wish mum would go but mum said no and made me do it alone. So i did. I went in and Tory was there. Relief yet embarrassment and I still couldn’t stop shaking.
I done half of dads plaque but was too tired to do the rest. Kara needed to come down that afternoon so i went home, had lunch and slept. 3:30 claire and i went back and  finished the plaques.

 


WHOOP finally happy!

Embarrassment is never far away!


After the blip i had started living again.
I went to the craft box more and I went out with matt more, I was more confident and was going out with some other friends too.  I started planning things further away and life was good. I was still having the seizures but they were less severe and I was at about 2 a week and I knew to avoid my period time. I started brushing up on my nursing skills by redoing my online training and had passed them all. I was getting ready to go back and I was treating every day as a bit of a holiday. I still went through bad weeks where my cluster headaches would be bad and i would need the oxygen but i thought that iId still be able to go back to work even with that. 
To bring myself into the real world again I started taking my little cousin milly out for day trips. Things were good i was living, making plans yet this time still being reserved.

June 16th 2012

Things were good !  the last 2 mondays I’ve been going to a art class at the craft box as well and I’m still taking Milly out on the occasional weekend.
The last week i have been painting a plaque for dads fathers day pressie. Ive designed it with both his loves in mind. On one side I’ve got his regiment details and badge and on the other his own personal bus stop. On and off I’ve been going in and doing a little.
Last Thursday I was in the activity box with Kara (she was doing a similar thing for her dad but a gardening design).
Over the few days leading up to last thursday I had been feeling a little under the weather I had noticed my headaches were stronger and I had been having a lot of absence seizures. I hadn’t told mum how bad i was feeling as she had been unwell the last few months and I was done with worrying her about me. She done that way too much. Things were on the up so I thought I could cope.

Thursday was going to be our finishing off day. We went in at 10am and painted away and chatting about the usual rubbish we chit chat about. My head was getting worse so i took a couple of my stronger pills and then kara and I took a break to go and get a cake from the nearby cake shop. We came back and had a cuppa to go with it and continued to paint. Half an hour in and i felt strange, My head was bad and i was getting hot I went outside to get some air and as i went down the steps i knew something wasn’t right. I got to the door and it all went blank. I woke up laying on gravel feeling very cold. The lady who owned the craft box (luckily a ex nurse so wasn’t to badly freaked) was holding me telling me where i was. I felt awful and so so embarrassed. Why, How not again were my thoughts. I knew i wasn’t free from the beast but i felt I had gained a little control and here i was being proved wrong. (life with epilepsy is always unpredictable)

The next few hours are really blurry as from what I’ve been told i was in and out of seizures a lot.
I remember getting up and going back into the warm as sitting on a stool. My trousers were covered in mud as was my feet and hands. tory (the lady at the activity box) washed my trouser leg with a cloth and I was holding onto a roll of bubble wrap. I felt really ill and the sensations i were getting were odd as I didn’t normally feel them this strong once the seizure had passed.
The next thing I knew I was on the floor again. this was seizure 2. this apparently continued. I can’t remember what was happening yet i know people were there I could hear Tory’s voice and then mums. I could tell the difference between Tory’s hand and mums as Tory’s was smooth with short nails and mum had boney hands with long nails. Voices were distand and under water. i felt so so cold. I cuddled in a blanket and can remember mum passing me the oxygen. I was trying so hard to stay awake yet i was so tired. I wanted to go home and so tried to get up and get up the stairs. This failed as every time i got up I had a seizure. I can’t remember this part but this is what I’m told.
The next 2 hours are blank as I got taken to hospital and woke up in the resuscitation room with a needle in my arm wires on my body and a drip hung in position. There was a nurse and doctor  asking me what happened… fit? i said groggily?  the drugs kicked in pretty quick and it turned out i had a kidney infection which probably caused the flare up, it didn’t make me feel any better though i couldn’t believe id had a fit while out, this hadnt happened in a couple of months (ok i rarely went out too much nut hey) . i was so so embarrassed.
My head was pounding but the oxygen helped a little.
I was desperate to get home and our friend was there as huge support to mum. Persuasion meant they did let me home later that evening with a large dose of antibiotics and instructions. I was so relieved. I got straight in bed and cuddled in my blanket with magick and the oxygen. It seemed that too long of the oxygen and i would start feeling really rubbish again.

                                  


New life but same hospital

We all settled into our new home quicker than i personally thought. I was good though.
I hadn’t realised how cold our old house was, it was a 150 year old timber framed building that had wooden floorboards and a 2 foot hole under and the house stood on plinths. we would get drafts coming from everywhere. Here we were now in a lovely brick build house and no drafts. I went from flannelette pjamers to strappy tops and thin bottoms overnight!
The seizures didn’t stop and the hospital appointments kept coming with medication changes at nearly every turn. My headaches were also getting worse and the hospital consultant was worried. I was sent for more tests.
I first had a MRI and CT scans, a EEG and blood tests. We waited the results anxiously. During this time i was admitted to hospital. It was 2 am and the pain from my headache was so bad i was screaming and pacing the floor. No medication that we tried made any difference. I was having atonic, tonic clonic seizures where i would just drop and seize every half hour and there was no other option left but hospital.
On the way to the hospital i had several more seizures and then when we got to the a and e department they were still happening,  I was put on a drip full of anticonvulsants and given an oxygen mask. I was very tired and must have drifted off. I woke to find people around me as id had another seizure. An hour later i had stopped seizing and I managed to sleep properly. The next morning i was groggy and sick and the medication had made me feel like i was under water. Everyones voices sounded muffled and my ears were sizzling.
I went about a normal day on the ward and then mum took me home later the next evening.
This was not my first and it wouldn’t be my last hospital admission.
Life continued and we received the results of the scans and tests. I already knew my blood results were fine as while i was in hospital i had many blood tests.
We went in and the consultant explained that the mri scan showed that i had several leisions on my brain and they were mostly but not all in the left temporal lobe. This means scaring. It was probably caused by the brain not receiving enough oxygen at some point and the fact I’ve been having seizures for many years. The headaches make these areas inflamed which causes more seizures and the seizures inflame it causing headaches. There really was no winning situation here and it was a lot to take in.
we went home and decided we would wait for a week and then go and talk to him again.

Intensive care

I can remember opening my eyes and being wheeled into a big space. This was the hospitals A&E. My seances were all distorted, i could hear but it felt like everyone was distant and muffled. i could barely see and i felt awful. i drifted in and out of consciousness, i didn’t even realise i was fitting. 
I could feel needles being pushed into my veins and i felt like a couldn’t move… yet i was fitting. I can remember seeing mum come up to my head she then faded away as i felt a pressure of something being pushed into my hand and a cold rush up my arm. 
I woke 3 days later in Intensive care. I had no idea where i was or what was happening. Gavin was sitting by the bed and i could hear mums voice. I tried to speak but i couldn’t my throat felt stiff and i tried to move my hand. This was also covered in tubes and wires. My eyes looked up and i saw drip blurry bags hanging and tubes coming from machines i then drifted.  All these machines i now know to be the machines that they were keeping me alive and sedated with. 
I woke up properly 2 days later. I saw dr’s nurses and mum. I was scared and the first thing i can remember saying was about work. I was so scared i was missing work as this was the start of the rest of my life. My career. Id worked 3 years for this… i was embarking on my first work palce and… what was going to happen , what would they say if i didnt turn up?
Mum put my mind at rest and slowly i was told what had happened. The reason i was in itu was because the seizures wouldn’t stop and i stopped breathing in the middle of a major seizure. The drugs i was being given also suppressed breathing and the only way to keep me breathing was to resuscitate and intubate (put me on a machine) until the body rested enough to breath alone.

I spent another 3 days on Intensive care. I was awake yet the drugs were so strong my memories are blurry and i remember very little of what happened. I was still having seizures yet they were not as violent. The drugs relaxed the muscles and the nerves to them meaning when i had a seizure it was happening in my brain and eyes and only the very small muscles would twitch. This was tryngt to help my body rest… my brain still had other ideas. The seizures had taken a toll on my body and I was still weak. The most scary moment was when i realised that i couldn’t see. Close up everything was blurry, it had been for the days i remember yet here i was laying in a hospital gown looking around and i could see nothing. It was all a blue white haze. My heart sank and i burst into tears. With physio i started to move my muscles again yet i didn’t have the strength to walk more than 5 steps .

I was transferred to a ward where i spent a week or so working on it and was then allowed home. I had enough medication to sink the Q.E 2 !