You are stronger than you think
In this post I will be discussing the daily battles of being epileptic. All the hidden aspects that people don't see. And also will be giving tips and methods on how I deal with it all.
I want to discuss two main points about medication. Firstly, like many other people who are epileptic my memory isn't the best...my main thing is actually remember that I have taken my medication. If I take my medication a couple of hours later than I should I can feel my body going tingly and starting to feel spaced out. Therefore it is vital I take it on time. Below are some tips for what I do to help this.
1. Make alerts on your phone to remind yourself to take your medication. For me it is very important I take it at the roughly the same time every day. So this is a key one.
2. Take note of when you have taken it - after I take my medication I write a tick on a piece of paper. So if a few hours later I start to panic that I haven't taken it, I can look back at the paper as reassurance and safety that I have taken it. Or in some cases if I haven't then it reminds me to.
Secondly, side affects. My last blog post was about discussing the matter, so I shall not talk about it in too much detail. However ever day I do, and as do many others taking anti-eplitic medication experience horrible side affects. My main one is fatigue, I get tried very easily. My advice for the tiredness is, planning and getting enough sleep. I make sure that in the week I have a rough plan, so I don't over do it and have enough time to rest. Yes, I have had to say no to a lot of things due to tiredness but in my case I would rather that then risk having a seizure. So stay strong and hold down that will power.
So I am not a morning person anyway but add epilepsy onto that, and it is not ideal. I wake up every morning feeling groggy, spaced out, grumpy and a lovely headache. But not just in a 'not a morning person' way. This is a whole new level, it takes me a good couple of hours to fully come round and this involves having to make sure my medication has kicked in, and that I have eaten. My advice for helping this and how I deal with it -
1. Take your medication as soon as you wake up.
2. I make sure I don't have anything planned in the first couple of hours of the morning, so I have time to come round.
3. If I haven't slept as well then consequently I will be a lot worse the next morning, so I can't stress enough - sleep is a big help!
4. Breakfast - low blood sugar levels can increase the chances of having a seizure. I have noticed in the pass when I don't eat my seizures can increase. so I always make sure I have a decent breakfast right after taking my medication.
5. Relax and have time - Stay calm, relaxed and just let your body naturally come round. Don't force anything as this isn't healthy.
Tiredness and not being too busy -
Due to getting so tired on a daily basis, I have to be carful how much I do. As if I do too much I am increasing the chance of myself having a seizure, as this is one of my biggest triggers. Therefore I have to plan and I have learnt to say 'no'. It sounds silly, but I am such a people pleaser, and don't like to upset people. But I have learnt if I want to be healthy and lead a balanced life. Then I have to say no to things, which could be seen as being selfish. But the most important thing is your health. And as I have said in the past your true friends and your family will understand and won't mind.
1. Say no, if you're getting to tired or not feeling up to an event. Don't go as you could be putting yourself at risk of having a seizure.
2. Plan - you can equally do as much as your friends, we just have to make sure that we plan a bit more.
3. Rest, make sure you give yourself enough time to sleep and rest. So your body feels refreshed.
4. Advice to family and friends to someone who is epileptic - please be understand, it isn't easy. We don't want to say no but sometimes we just have to. Otherwise we're putting out health at too much of a risk but this doesn't mean we love you any less.
Controlling my stress and anxiety -
My biggest trigger for seizures is stress and when I get too anxious. Considering I have anxiety...its not ideal! However I have learnt methods to deal with it which allows me to leave a 'normal' day to day life. I am the kind of person that gets stressed easily and puts a lot of pressure on myself, whether this is uni or a social situation. This also kicks off my anxiety and I started to panic and over think things. This not only is a horrible feeling to experience but can affect your daily life, therefore below are some tips on how I control it -
1. I always say to myself will this really matter in a year times - for example I have a presentation at university that I am getting super stressed about, but in a years time I would of forgotten about it. For me this is a method which really works as it has allowed me to put my life into perspective.
2. Breathe - As I have spoken about in past postings, breathing methods are so helpful if you're having a tough day, anxious moment or in a stressful situation.
3. Relax - Finding time to relax and zone out. I do this by walking, whether thats walking in a park, a field. Just somewhere I can get fresh air. To re-fresh my brain.
4. Again SLEEP! - I notice if I don't sleep well enough then the next day I will be even more anxious. And I know the struggle of trying to sleep when your anxious, or stressed. Its hard! But the methods I have used is my therapist as helped a lot, reading or writing before bed, not eating or drinking a couple hours before. Breathing to calm my body down.
I will do another post soon with more advice as I feel like I have so much more to talk about on this topic!
The main thing I find about starting new medication for epilepsy is the side effects, being completely honest they can be awful! However be patient and it will be worth all that pain and frustration. Trust me, I have gone through it. Came out the other side and looking back it was worth it. So here is my story. I hope it can help others going through the same situation. Or have someone you know going through it, to help support them.
At about eleven years old I was put on lamotrigine, started on a small dosage (one tablet) . As I have spoken in previous posts at this age I didn't understand what epilepsy was or what was happening to me. But I had doctors and my parents telling me to take it, saying it would help me. I remember the first time I took it, I was on holiday. I was pretty fortunate with not having too many side affects to it, apart from feeling lot of fatigue and nausea. Fortunately this past after a couple of weeks.
They started to control the long seizures but I was still ‘blanking out’ every day. Due to this my consultant decided to up the dosage to two tablets. Again this helped control the longer seizures, but I was still continuing to blank out.
This continued from the age of eleven to fifteen, my doctors had tried to persuade me to add new medication to it, but I was stubborn. I knew that the side affects of a new medication would cause me to have time out of school (this was during GCSE years).
Therefore I waited until the summer holidays. When I was fifteen, to start ethosuximide. I don't mean to scare readers if they're about to start this drug as it reacts differently with every body and it was totally worth going through all this, to get where I am. But my side effects for it where horrific for a good couple of months. I couldn't leave the house as I was too tired to move, I felt spaced out, dizzy, nausea, weak and had continuos hiccups. However the patience of dealing with these side affects was so worth it. Four years on, they have successfully controlled my blanking out. And I am pleased to say I have been seizure free for about four years now!
Ethosuximide, is literally my angel as I am now able to live as much or a normal life as possible. So I guess what I am trying to say is I know how horrible it is, trying different medications, changing doses and so on. However it is worth it, stay strong and it will pay off.
My advice for parents, friends or partners of someone who is epileptic and trying out different medications. Is please be patient, it is scary putting various medications into your body and not knowing what side affects you’re going to experience. Or how it is going to affect your seizures. If they're tired, or experience the horrible side effects, therefore they cant do much. Sit with them, comfort them and reassure them.
If you have a child who is going through this process, they may be confused (like I was). So try and explain as well as you can what is happen, give them leaflets on epilepsy, if you're struggling to communicate with them. Having my family and friends around me, supporting me during these times where vital and it all pays off in the end.
Be the strong warrior that you are, and stick at it! As the results could change your life for the better!
Hi welcome, to my blog! Come follow my journey and read my experiences of living with epilepsy.