I'm sorry about the long delay in my blog post! I know that it has been about 4 months which isn't too great coming from someone who has epilepsy that's so uncontrollable, but I'm hoping to set a better example and make some more regular posts now!
One of the things that my neurologist has started to do is bring me down on my medication. We've started to realise that I do a lot better on less medication. It sounds a little crazy, but it's worth a try! When we told my neurologist our opinion, he agreed and then put in my next appointment letter that "with trepidation" I was being reduced on my Zonegran (one of my tablets)!
This still involves another type of medication though. It was almost like he was thinking:
"Trying to get her on LESS medication so she can reduce her seizures? That'll never work! I know - let's bring in another type of medication!"
And so he did.
This medication was called Perampanal and is a new kind of tablet and to be honest, it didn't go too well. When it comes to side-effects of medications, they don't tend to hit me too badly. But this one just emotionally destroyed me.
Basically, I really wanted to go to this primary school reunion that my friend set up, but because I wasn't able to walk round to the pub where it was set up in case I had a seizure, Mum and Dad said that I couldn't go. I was furious, to be honest. It became a bit of a shouting match! I didn't help matters when I said:
"When I was 13 and I was diagnosed with epilepsy, you both said that you'd never let it get it the way of my independence! But you are because you're not letting me socialise!"
This caused a great deal of tension within the Boulton household because I then said:
"So basically, what you're saying is 'Sorry Becky, you can't go to your reunion. The reason why? It's because you have epilepsy.' Nice."
To be honest, the stuff I was saying was really stuff that I wasn't sure if I was able to control. I wanted to stop it, but I felt like my mind was spinning round at about a hundred miles an hour and I couldn't stop it!
Soon enough, I was storming up to my room with my parents shouting at me to come back and the only thing I was screaming was
"NO! LEAVE ME ALONE!"
My stomach was churning so much with fury and I just wanted to scream because I felt so out of breath from my anger. Suddenly, I started looking around my room, the urge to start to throw things beginning to grow.
I don't think we made a hospital appointment to see my epilepsy nurse so quickly! The fact that we saw my epilepsy nurse and when I explained to her that I didn't like the Perampanal because it was making me angry, it made me feel a lot better when she said that she would have a word with my neurologist and on that same day he rang my dad and said:
"If that's what Rebecca is like on the lowest dose of Perampanal, then I think it would be better to take her off it straight away."
I felt so happy when Dad got off the phone and said that my neurologist was taking me off my Perampanal! I would never want to be on that type of medication again. Even if I was only on that tablet for a week, it's certainly a week I'd never want to repeat!
Friday, 8 September 2017
Tuesday, 25 April 2017
Weaning off!
I thought at first that I wouldn't want to come off any of my Keppra, but once my neurologist said to me that it definitely was a good idea to wean me off that type of my medication, I decided to have a go at coming off the medication. I knew that he would do it slowly but surely, but eventually we managed to wean me off the Keppra.
He said that there would be some side-effects, so I began to prepare myself for the usual side-effects that someone might experience. However, I never realised that weaning off Keppra would actually be so difficult. My neurologist has only put me on different types of medication and moved me up and down on different types - I've never been completely moved off a type of medication before with this much difficulty before. I was weaned off Epilim due to the loss of my hair, but I didn't find it this hard!
At one point, I almost felt as if my body was going to scream because of the amount of Keppra I wasn't getting. Towards the end of my decrease, I was only getting 125mg of Keppra in the morning, when I was getting a lot more than that in both the morning and the evening. When I was completely weaned off my Keppra, I knew that it would mean things would be a lot better, but for some reason, in the back of my mind I had some reservations.
I tried to forget about my worries, but in the end I realised what the matter was. One moment everything would be fine, but then all of a sudden a massive buzzing burst straight into my mind! I never felt anything so scary in ages! I didn't know whether I was the only person who felt these feelings, but one moment I would just feel my buzzing, and then the next second I might feel some voices in my head. I thought I was going crazy!
We didn't know whether this was anything epilepsy-related, so we decided to do the sensible thing and headed on to the Internet. We discovered that this buzzing that I was feeling was normal, and in fact a side-effect of being weaned off my Keppra! I felt so relieved!
I feel as if this buzzing is just about gone now. Luckily, I think it is gone just in time for the holiday!
He said that there would be some side-effects, so I began to prepare myself for the usual side-effects that someone might experience. However, I never realised that weaning off Keppra would actually be so difficult. My neurologist has only put me on different types of medication and moved me up and down on different types - I've never been completely moved off a type of medication before with this much difficulty before. I was weaned off Epilim due to the loss of my hair, but I didn't find it this hard!
At one point, I almost felt as if my body was going to scream because of the amount of Keppra I wasn't getting. Towards the end of my decrease, I was only getting 125mg of Keppra in the morning, when I was getting a lot more than that in both the morning and the evening. When I was completely weaned off my Keppra, I knew that it would mean things would be a lot better, but for some reason, in the back of my mind I had some reservations.
I tried to forget about my worries, but in the end I realised what the matter was. One moment everything would be fine, but then all of a sudden a massive buzzing burst straight into my mind! I never felt anything so scary in ages! I didn't know whether I was the only person who felt these feelings, but one moment I would just feel my buzzing, and then the next second I might feel some voices in my head. I thought I was going crazy!
We didn't know whether this was anything epilepsy-related, so we decided to do the sensible thing and headed on to the Internet. We discovered that this buzzing that I was feeling was normal, and in fact a side-effect of being weaned off my Keppra! I felt so relieved!
I feel as if this buzzing is just about gone now. Luckily, I think it is gone just in time for the holiday!
Me and Emma on our last holiday in Lanzarote!
Monday, 3 April 2017
Nearly time for Lanzarote!
It's nearly time for our first holiday of the year!
Our first holiday is to Lanzarote - we are going for one week and we are very excited! Our holiday begins in May and we can't wait to have a break!
We love going to have a relax by the swimming pool. It is great fun to have a laugh together (I still have a tan from the last holiday!) and try all of the different foods in Lanzarote. When we were there last time, I was the only one who didn't drink any alcohol, so the waiters decided to put fruit juice into shot glasses at the end of meals so I didn't feel left out!
I love our holidays because it is a chance for me to have some peace and quiet from the pre-school! It can get pretty loud there sometimes! On some mornings, I have been asked by children to read about six books. And I wonder why I get a sore throat!
Our first holiday is to Lanzarote - we are going for one week and we are very excited! Our holiday begins in May and we can't wait to have a break!
We love going to have a relax by the swimming pool. It is great fun to have a laugh together (I still have a tan from the last holiday!) and try all of the different foods in Lanzarote. When we were there last time, I was the only one who didn't drink any alcohol, so the waiters decided to put fruit juice into shot glasses at the end of meals so I didn't feel left out!
I love our holidays because it is a chance for me to have some peace and quiet from the pre-school! It can get pretty loud there sometimes! On some mornings, I have been asked by children to read about six books. And I wonder why I get a sore throat!
Me and Emma in Lanzarote!
I had a seizure a couple of days ago too. I am wondering whether my VNS implant is helping with increasing the amount of energy I get when I wake up, because I think that I get a lot more when I wake up.
I also think that it is a bit of a coincidence that my seizure fell on April Fools Day. Is my body trying to play tricks on me?
Monday, 13 March 2017
Dancing Presentation 2017!
It's been quite a while!
Over the past few months, I've had more dance practice ready for my dancing presentation ready to perform along with my friends in front of other parents and brothers and sisters! Whilst I've had this practice, I've had a few seizures (tonic-clonic and absence), but life is never dull!
When I was at my dancing presentation, I was doing my solo waltz, and I had a seizure! Luckily, my teacher managed to hold me up, and Emma swiped me with my VNS magnet, but when she realised that I wasn't going to come round, they managed to pull me off the floor.
It was a shame that I had a seizure on the night of the dancing presentation - I had been so excited for weeks! But I only had one, and at least I made the night memorable for the friends and family!
After my seizure, my teacher had more or less assumed that I wasn't going to do my second solo routine. But I had other ideas! I was looking forward to performing my solo Cha Cha Cha, and I was planning on doing it!
I have to say, I think it was adrenaline that got me through that routine, and although I felt quite tired by the end of the night...
Over the past few months, I've had more dance practice ready for my dancing presentation ready to perform along with my friends in front of other parents and brothers and sisters! Whilst I've had this practice, I've had a few seizures (tonic-clonic and absence), but life is never dull!
When I was at my dancing presentation, I was doing my solo waltz, and I had a seizure! Luckily, my teacher managed to hold me up, and Emma swiped me with my VNS magnet, but when she realised that I wasn't going to come round, they managed to pull me off the floor.
It was a shame that I had a seizure on the night of the dancing presentation - I had been so excited for weeks! But I only had one, and at least I made the night memorable for the friends and family!
After my seizure, my teacher had more or less assumed that I wasn't going to do my second solo routine. But I had other ideas! I was looking forward to performing my solo Cha Cha Cha, and I was planning on doing it!
I have to say, I think it was adrenaline that got me through that routine, and although I felt quite tired by the end of the night...
It was definitely worth it!
Tuesday, 10 January 2017
Personal Independence Payment!
I am coming to the end of a pretty good week when it comes to my epilepsy! My body has shown no signs at all of seizure activity for five days, so I am hoping for nothing for another two days, so I can officially say that I have been seizure free for exactly one week! However, whenever I mention that I have been seizure free for a long time, I immediately have a seizure, so I have said absolutely nothing about it to my family in the hope that I don't have any seizures!
According to one of my friends from the charity shop, the shop isn't going until summer. I'm getting pretty fed up of waiting for it to reopen again, so I am hoping for more volunteering jobs. Seeing as my actual qualification is for working with children, we are wanting to find me a job in a playgroup.
We are wanting to get Personal Independence Payment (PIP) for me this year. We were told that this is a good thing to get if you are between the age of 16 and 64 and have extra care and mobility needs because of having a disability. We have to go for a medical assessment to see if I am entitled for PIP, but we are hoping that they will let me have it!
We have been looking to see what kinds of things that I've been entitled to (PIP, a free bus pass etc.). We were meaning to get all of this last year but we weren't able to get the chance, so hopefully we will be able to get all of it sorted this year!
According to one of my friends from the charity shop, the shop isn't going until summer. I'm getting pretty fed up of waiting for it to reopen again, so I am hoping for more volunteering jobs. Seeing as my actual qualification is for working with children, we are wanting to find me a job in a playgroup.
We are wanting to get Personal Independence Payment (PIP) for me this year. We were told that this is a good thing to get if you are between the age of 16 and 64 and have extra care and mobility needs because of having a disability. We have to go for a medical assessment to see if I am entitled for PIP, but we are hoping that they will let me have it!
We have been looking to see what kinds of things that I've been entitled to (PIP, a free bus pass etc.). We were meaning to get all of this last year but we weren't able to get the chance, so hopefully we will be able to get all of it sorted this year!
Sunday, 8 January 2017
2017!
Happy New Year!
It's the start of a whole new year, and I'm hoping to have a better year this year than I did last year! Luckily the charity shop will open back up again this year, so I will be able to get out of the house a little bit more.
I met with one of my friends last year for the first time in Oxford to go and see one of our favourite comedians! She also has epilepsy, and we have known each other for over two years now. We knew each other after I shared a picture about 'Epilepsy Awareness Day' on a Harry Potter fan page on Facebook, and she commented under the picture saying that she has epilepsy too! After chatting about epilepsy for a while, I decided (after a few minutes of silent debating in my head!) to request her as a friend on Facebook as she is a similar age to me. But I'm glad I did! It's not often that I am able to find a friend who has epilepsy, likes Harry Potter, and likes Doctor Who who is also a similar age to me!
My epilepsy is being as unpredictable as ever. I am living in hope that my seizures will get better, but I am still having them every week or so. We are still changing my VNS implant around, so hopefully as the levels are changing on that, my epilepsy will begin to improve. Unlike a lot of people, my epilepsy seems to get worse as the amount of medication I have increases. At the moment, I am on three types of medication, so sometimes that means I might have quite a few seizures!
One of my New Year's resolutions this year is to try and get my epilepsy a little more under control. Unfortunately, I can't force that to happen, but hopefully I want to calm it down a little bit more this year!
It's the start of a whole new year, and I'm hoping to have a better year this year than I did last year! Luckily the charity shop will open back up again this year, so I will be able to get out of the house a little bit more.
I met with one of my friends last year for the first time in Oxford to go and see one of our favourite comedians! She also has epilepsy, and we have known each other for over two years now. We knew each other after I shared a picture about 'Epilepsy Awareness Day' on a Harry Potter fan page on Facebook, and she commented under the picture saying that she has epilepsy too! After chatting about epilepsy for a while, I decided (after a few minutes of silent debating in my head!) to request her as a friend on Facebook as she is a similar age to me. But I'm glad I did! It's not often that I am able to find a friend who has epilepsy, likes Harry Potter, and likes Doctor Who who is also a similar age to me!
My epilepsy is being as unpredictable as ever. I am living in hope that my seizures will get better, but I am still having them every week or so. We are still changing my VNS implant around, so hopefully as the levels are changing on that, my epilepsy will begin to improve. Unlike a lot of people, my epilepsy seems to get worse as the amount of medication I have increases. At the moment, I am on three types of medication, so sometimes that means I might have quite a few seizures!
One of my New Year's resolutions this year is to try and get my epilepsy a little more under control. Unfortunately, I can't force that to happen, but hopefully I want to calm it down a little bit more this year!
Me and my friend Indi when we finally met in Oxford!
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