Firstly I do apologise for the lack of posting on the blog this week and I'm very sorry if any of you missed our weekly posts that we weren't able to get to you this week, such as Top Of The Hocks.
There is a reason for this though, as I am aware Colin has already told you, I have had a very very tough week this week with my Epilepsy.
I have never really mentioned my Epilepsy on here before, I just didn't feel like it was particularly necessary to. However, after having an extremely bad and very difficult week with it this week I thought it was tome to share with you, all our lovely readers, what it is like living with the illness that is Epilepsy.
Now, firstly I should mention that there are many different types of Epilepsy and many different types of seizures. My Dad (Eifion) also suffers from epilepsy, this is caused by a brain tumour he had as a child/teenager and the fact that I have epilepsy is a complete coincidence, it is not at all hereditary. My Dads Epilepsy has thankfully been under control with medication for a long time now and he hasn't had a seizure for many many years and hopefully it stays that way forever! When he did used to have seizures, he had the type of seizure that most people would picture when thinking about a seizure. He would lose consciousness, fall to the ground, thrash around and make lots of noise. I wont lie, the first time it happened it was incredibly frightening.
I however suffer from a different type of Epilepsy. I suffer from what are called Complex Partial Seizures. These are caused by slight damage to my temporal lobes in my brain, this damage was not caused by an accident or anything like that, it is a defect that has been there since birth.
So, let me tell you the facts about Complex Partial Seizures..
1) Complex Partial Seizures nearly always start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person's eyes are sometimes open and they may make movements that seem to have a purpose, in reality "nobody's home." Some peoples symptoms are incredibly subtle and other people may even think the person is just daydreaming.
2) Most people either move their mouth, pick at the air or their clothing, perform other purposeless actions or sometimes do all of these things. These movements are called "automatisms".
3) Less often, some people may repeat words or phrases, laugh, scream, or cry. Some people unfortunately do things during these seizures that can be dangerous or embarrassing, such as walking into traffic or taking their clothes off. These people need to take precautions in advance.
4) Complex Partial Seizures starting in the frontal lobe are usually shorter than ones from the temporal lobe. The seizures that start in the frontal lobe are more likely to include automatisms like movements of the legs or pelvic thrusting.
5) Some complex partial seizures can into secondarily generalized seizures. Complex Partial Seizures usually last between 30 seconds and 2 minutes. Afterwards the person is usually tired, confused or both for about 15 minutes and may not be return to normal function for hours.
6) Complex Partial Seizures are the hardest type of seizure to control with medication.
How Do Complex Partial Seizures Affect Me?
Here are the steps of how a Complex Partial Seizure affects me..
1) The first sign I get that I am about to have a seizure is an overwhelming taste that comes into my mouth. The best way I can describe this is very metallic, as if I am sucking on a penny. When I get this taste in my mouth I am usually able to tell somebody that I am about to have a seizure.
2) Very shortly after getting the metallic taste in my mouth, my face (particularly my lips) goes very numb and tingly.
3) I get a cold wave over my whole body. This wave starts in my toes and travels its way up my body until it gets to my head. When the wave hits my head I go extremely hot and then everything goes black for a minute or two, occasionally I get a strong feeling or deja vu when the wave reaches my head.
4) I am unaware of what I do during the time that I am "unconscious" but I am told that I lick my lips and smack my lips quite a lot as if my mouth is very dry. I also rub my fingers together.
5) After a minute or two, I come back around and I am fully aware that I have had a seizure. I feel extremely overwhelmingly tired and I have a really really awful metallic/sweet taste in my mouth. Usually I need to go to sleep for a while afterwards.
My seizures come in clusters. This means that I get lots in one go then don't have any more again for quite a while. This means that I suffer very much during the times I am having them as I don't get a chance for my body to recover from having one before the next one creeps up on me. This week the seizures lasted five days and I spent nearly the whole week sleeping, with an extremely painful headache and with no energy at all. As Allan has been working away Rosie and I had to move in my my Mum and Dad for the week. I still have the hideous taste in my mouth now and I haven't had a seizure for two days, this taste can sometimes stay in my mouth for up to a week after my seizures stop. Nothing works for it, brushing my teeth, eating mints, nothing. I just have to wait for it to pass off as it isn't actually caused by anything in my mouth, its caused by a chemical imbalance in my brain from the seizures. I do take medication for my seizures and this works the majority of the time but unfortunately now and again the seizures manage to overrule it.
When did my Epilepsy Start?
Now this is a very long story. My seizures actually started when I was very very young in primary school. I used to get these awful feelings come over me and as you can imagine, they used to frighten me. They got so bad that I started to refuse to go to school because I was too scared about it happening in the classroom. This resulted in me getting sent to counselling because they thought I had anxiety issues.
The only anxiety I had was coming from these terrifying feelings that kept coming over me when I didn't know what on earth they were. This "counselling" went on right through primary school and then high school, the whole time with me trying to tell them that I wasn't anxious, I was ill. Nobody would listen, so the seizures continued for years and years until one day when I was seventeen years old, I saw a different counsellor. Finally, this counsellor listened, but not only did she listen, she agreed and referred me to the hospital.
The day came and off I went with my mum to the epilepsy clinic in the hospital. I sat and told the consultant all about these "feelings" and straight away she said to me "well its obvious what is wrong with you, you have epilepsy". I couldn't believe it, it was such a mixture of emotions. I was sad that I had epilepsy, happy that I finally had an answer to these feelings that had been scaring the life out of me for so many years, but most of all, I felt totally let down by all these "professional people who had ignored me for so long. Yes, I had been anxious, yes I had misbehaved, yes I had refused to go to school. But it was all because of one thing.. fear. Fear of these feelings I had been having and fear of it happening in the middle of a crowd.
The consultant in the hospital started me on medication and sent me for a brain scan. This is where they found the damage to my temporal lobe which is what had been causing my seizures for so long.
Since then, I have tried lots of different medications and had quite a few hospital stays where they tried to get my epilepsy under control, many of which didn't work at all, but I did have lovely visitors to cheer me up whilst I was there...
Now, I am on a mixture of 2 medications which don't work all the time, but are the best I think they will find for me.
The main reason I wanted to write this post was not to have an excuse as to why the blog has been quiet this week. No way. I wanted to write this post to help other people. People who are suffering with epilepsy like I am and maybe need a chat with somebody who understands. People who may be in the same boat that I was in and are having these feelings but don't know what they are. People who have a loved one who are suffering and would maybe like a chat. I am here for and happy to chat to anybody who may need it. Also, if you are having any unusual feelings and you don't know what they are, I urge you to go and tell the doctor. And if you are being ignored, don't stand for it, INSIST you get seen by somebody at the hospital. Don't allow yourself to be ignored. I can assure you, even if you do get diagnosed with epilepsy like I was and they don't get it fully under control like me, it is a huge weight off your shoulders just knowing what it is and I can promise you they will do everything they can to get it a lot more under control than it is now.
One last thing. Yes, living with epilepsy is utterly crap and when it is happening you sometimes cant see a light at the end of the tunnel. But I can promise you, there is a light at the end of the tunnel. There is something out there for everyone that will make it all feel better. And that thing for me is this bunch of loons..
I just want to thank them for making everything feel better. They mean the world to me and I would be nowhere without them. They give me unconditional love and support and they are just the best family ever. I Love You So Much Hocks Clan! xx
To find out more about epilepsy visit www.epilepsy.org.uk.
