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!
Tag Archives: ECG
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?
Weekend & Confidence boosting.
Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on 22nd. Fingers crossed once again.
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.
After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course.
However This weekend My weekend started friday.
1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together.
2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news.
3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing.
Double consultant
Well the last couple of months have been full of ups and downs.
The ups being good days and playing music, meeting friends and the bad being hospital visits, consultant meetings, results and I still cant see out my left eye !
A few weeks ago now I met with my consultant, and another consultant from a high up place in the care of epilepsy in the whole of kent who was lovely but this meeting totally confused me as It was a surprise not to be just my normal consultant. I always have questions to ask my consultant but it all went out the window when I went in and the other man was there, therefore I didnt get chance to say hardly any of what I wanted to ask. In fact I left with more questions.
The man was there to talk about my situation and the posibility of doing something more invasive like surgery. This has been spoken about in the past and I was told a few months previous it looks like it may be possible…. it turns now that this isnt a option yet as my seizures dont just originate from my temporal lobe like they have done all my life but now have also spread to the occipital (explaining the loss of vision from my left eye). This for me was a complete kick in the stomach yet good news as well as at least I knew why my eye had been on and off and now pretty much off for the duration of time.
I liked the extra consultant yet It was a really difficult meeting being told that the end of the line as to what they can do is very near. If surgery isnt a option and the drugs are not working then at the moment we are at a standstill. However there are a couple of other options being looked into as I type so for now all is not lost… its close but we’re not there yet.
The other issue we spoke about in the meeting was my cluster headaches. It makes things more difficult that I have these as well as medication reacts and all sorts of things which I dont really understand myself yet they just said its a little more complicated and they tread carefully. Anyway there was this drug I was told I could try a few months ago. I had to have a ECG though to check my heart as it reacts with the heart. I had the ECG done and I wanted to now start the drug so I brought the subject up. This too was not a option as the ECG came back with a problem…. yet they didnt say what, and that was one of the questions I forgot to ask as they went into a different subject before I could really finnish what I was about to say.
I left the appointment a bit grumpy and down. It was hard being told the end of the road is neigh, but i had a few answers and I knew not to panic about my eye too much and I knew they were now working hard to find me some answers and help.
Still, got to keep going, have faith and “just keep swimming, Just keep swimming” !
Now to wait for the reply and answers.
Popped bubbles
kara would also come round to mine and we would chat and do crafts… life wasn’t great but it was ok. kara and i loved similar things and had a understanding. unfortunately i couldn’t go round to hers much as he dog jack had taken a dislike to me and tried to eat me on too many occasions for my liking but we still had mine to meet up at.
We went to london and after 2 and a half hours in the office we came out. our friend had coffees waiting which was a relief beyond reliefs and we went home.
The Beginning
I first had a seizure aged 4. I had severe whooping cough, where I stopped breathing for over two minutes. My mum tells me I was held out the top floor window of the house and swung from side to side to make me catch my breath. As it was a cold Octobers evening, im glad to say…. It worked!!!About a week after this and in my first year of primary school and I was sitting on the worktop with my mum helping to make my sandwiches for my lunch box. I suddenly felt strange and funny. i said to my mum “mummy I feel funny” it was an aura. The pins and needles, the thick feelings the deja-vu. (for those of you with epilepsy you will know this well).The next think I knew I was on the floor. My mum had just witnessed my first grand-mall or as they are now called Generalised seizure. I woke finding myself with her by my side cuddling me. I had no recollection of what had happened, but felt dreadful, tired and sleepy. (I cant remember being scared and mum has told me I took it in my stride- being as stroppy as ever and not wanting to rest!…. that hasnt changed an awful lot now, as I still get frustrated at times!) Anyway I missed some days of school due to my fisrt seizure, I was taken to the dr where I was given the all clear and mum was told to come back if any more problems. It didn’t take long as by the next week I was back in the DR’s room after having 3 more fits. I was sent to the Hospital and the roller coaster began.
My first ever EEG Age 4. |