Tag Archives: ECG

Heartbeat

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. 


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 

Tombola

Refreshments and Cake 

Competitions 

A quiz

Glitter Tattoo’s 

Nail art 

and more. 


More details will be given in due course 

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. 


You can visit them at this address

Click here for IWBYE

4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz  (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.

5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other  Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp

The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this. 
 The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it  will be up on you tube. 
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin! 
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal” 
XXX

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

I was trying to still have a life despite the seizures however i could no longer go to my band practice that id been doing for over 11 years as it was late night and i got tired. Id had a seizure on the way there and it made me think of how close i was to total embarasment… I was so scared of it happening again while sitting in practice or while on stage at a gig…. in fact I still am. 
Mum and i did start going to Womens institute with kara and her mum. This was ok it was once a month and was a sit down affair and some of the talks interesting.
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.
The results of the telemetry were in. As far as i could understand this was to see if there was a way out via surgery. There wasn’t. The tests showed where it was probably coming from but it stemmed from too deep down and to operate would be too life threatening. So we needed to look somewhere else.
During this time my new consultant had thought about my headaches. He asked me some (what i thought) random questions including did i have a runny nose when i had a headache did i tear. I hadn’t really thought about it before but yes my nose did run and yes i did tear but only from my left eye. Mum and some of my friends had mentioned previously that it looked like id had a stroke when i was having a really bad one. The Dr took one look and said at once he thought it was cluster headaches. Aparently it fit with all my symptoms and he has heard of a increase of people with epilepsy also had cluster headaches. Excellent i thought we know what it is now we can cure it.
POP ! there goes that bubble of thought. There is no cure he said, only treatment. The drug is a heart drug so he needed another ECG report. the other option is Oxygen but we needed london to sign this off as i was still under them.
I went to my gp who done a ECG and i took that back on the next appointment. POP there goes another bubble….. I wasn’t suitable for the drug. My heart results were not normal and so  now oxygen was my only hope. 2 Months later I went to london.
This time the hospital transport system had changed. Meaning unless you physically couldn’t walk it didn’t matter where you came from you needed to get there on your own. I was still having seizures that were violent and unpredictable. A friend offered to take us and mum jumped as she hated London and wouldn’t cope on her own with me in a strange city.
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.

I was a bit scared going to hospital. My first hospital visit i met the dr, (dr stefani).  I couldn’t say his name and therefore he let me call him Terri which sticks till this day if I ever pass him by. He quickly examined me including guessing what I had for breakfast! CORRECTLEY (which astonishes me till this day!)  and then sent me for some tests including a EEG, blood tests, X-ray and ECG. A complete MOT!
The tests seemed a bit big and strange but Terri wanted them all done that day, so off we were fore a trip round the hospital. First to Blood clinic, which with a bribe with a chocolate bar and hug from my bear was done. Then X-ray, ECG and then EEG (which I was going to get to know very well over the years). 
After a couple of weeks I had an appointment to go back for the results. During this time I had a total of 8 seizures and my life was going changing. My school were not letting me join in games and mum was obviously worried. 
On the day of my results we went back to the hospital, Terri called me Jamima puddle duck from down the corridor he knew I liked the Jamima puddle duck story! He was so funny.. Mum and I walked into the office and sat  down. 
I cant remember what was said exactly but we were told I had epilepsy. We were told what I could and couldn’t do, and precautions to take. I understood some things, as terri also explained it to me so I could understand. 
That night at home I had to take some medication, tegretol (carbamazipine) they looked like boring sweets.  Mum told me what they were and I had to take two. I did. 
My first ever EEG Age 4.