The above pictures are the tablets I have to take on a daily basis. The first one are the ones that I take in the morning and the second at night. They are a part of my daily routine but not a day goes by when I truly wish that I did not have to take them. It is a battle I fight every day. It is not easy. I know that these medicines are what keeps me stable. I also know that 18 hours is the maximum I can go before I feel the need of medication again. I question the difference between a drug addict and myself.
I have had seizures that have given me third-degree burns. Luckily it was my leg that got burnt. If I slumped further then my face would have been disfigured. I had a seizure and blacked out when I was in Oxford Circus tube station. If it had to happen a minute or two earlier then there would have been a 90% chance that I would have fallen on the tracks. Did I just get lucky breaks or was God protecting me? I don’t think anyone who meets me would be aware of the mental battle that fights through every day. I went into an organisation to become a member. I checked the box that asked me if I had any disability. The lady who was checking my details gently questioned me on it. God bless her sensitive heart. When people talk about mental health I am far from the image that they would picture in their head. I look perfectly normal, behave normally and I am nearly always smiling.
Today is the start of Mental Health Awareness Week. The main problem with Mental Health is the lack of tangible proof. It’s not like putting a thermometer in your mouth so that you can judge if you have a fever or not. How can I convince people that I have had a small jerk when I cannot be sure myself. If you have the flu or even a migraine you can call your place of work by the appointed time. With Epilepsy that is hard to do. How can you describe the buzzing sensation that occurs in part of your head or the discomfort caused by flash photography and strobe lightings. Sometimes I feel that the only way they can understand what I and my family goes through is for them or their children to have epilepsy. I do not feel guilty about this. The number of people who are diagnosed with Epilepsy is growing. The link between Epilepsy, Stress, Depression and sleeplessness is a vicious circle. One can cause another and all of them can influence seizures. Still, people like me live on to fight another day. We live with the hope that the day will come when we stop wondering whether we will have a jerk while crossing a road or talking to people or being alone when you have a complete seizure. We hope that there will be a medicine that agrees with you which will not have any adverse effects. We hope that people will treat us properly and not act stupefied or illiterate when you tell them you have epilepsy. We hope that people will be more sensitive to our needs and not assume that we do not have anything just because they cannot see it. It is bad enough that people do not offer their seats in the tube for elderly people, pregnant women and those who physically handicapped. I am extremely sceptical whether wearing a badge requesting a seat will make a difference.
My mind needs to be in a constant flux of thought. This is one reason why I like writing. It gives me a mode to think. I also hope that what I write will make others think. Being Epileptic and having other mental health conditions that come about will be part and parcel of your life. We have two choices. Either we can be quiet and embarrassed about it or we can inform people to ensure that they know what to do. I do not want anyone’s pity. I do want the sensitivity and understanding of other people. This to me is the most difficult thing to achieve.
The Cover Drive Analyst 
A pill regime is really hard… but I’m glad you have one that works! I’m also glad that you’ve obviously been protected in some really close calls!! It’s obvious that God is a factor in your life. 😀
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Doctors have tried changing my medicine twice because the medication I was on was “old” but it didn’t agree with me. I would eventually come back to the same dose. Yes God is a strong factor in my life. I feel assured that He is taking care of me.
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The pill regime sucks. I am on keppra currently. Was on tegretol years ago. I have actually written an article discussing how to handle being on keppra or seizure medication if you would like to give it a look https://selfimprovedfitness.wordpress.com/2018/06/28/how-to-handle-being-on-keppra-seizure-medication/ . I know pills arent the best thing and side effects suck, but they are manageable.
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Really nice blog. I am stable now. Though I still feel Keppra was added unnecessarily. Removing it will be more of a risk than staying on it. I do cardio and swim so that helps. I also have a special concoction of tea that I have.
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Thats awesome! I love Moroccan mint tea. And yeah I believe mine was a freak seizure (due to chronic stress, Immense amount of caffeine, sleep drpivation, and poor diet). Im only keppra for more than another year but already coping fine. Just ready to be off though
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I’m now on keppra i had to have my tegretol dose decrease and up my dose on keppra it took years to work out what right balance was. keppra has changed me alpt since I’ve been on it its changed my behaviour and thinking and mood but not in a particularly good way my issue is tho it’s the only med that is controlling my seizires. so what dont do? change it so I’m back to my happy and not as snappy self or stay on it and get support with how to manage my behaviour and mood and thoughts?
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I cannot give you any professional advice. That being said the most important thing is that you are stable. Keppra was pushed as a safe medical marvel which it is not. It is better than Epilim though. Consider talking to your doctor about Epidolex. It is a Cannabis based medicine and it is legal or becoming legal in most parts of the world. In the mean time try your best to keep your spirits high. Exercise helps. Writing does too. Either blog whenever you can or just keep a diary. Maybe try some other hobby. I truly hope that you will be back to your snappy self soon!!!
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thanks for your advice I’ll defo talk to my doc, and try exercising more.
I do worry about exercising tho incase im at risk cause whatever i do its a risk even cooking it is or bike riding or things involving water in just living in fear all the time cause of my epilepsy.
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It is a risk for people like us but we have the strength to overcome it. Consult your doctor first and see if you can join a gym. Do inform the staff on the gym floor about your condition. I really would not recommend swimming or riding the bike on the road unless you are stable.
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that’s very true, I’ll consult my doc tomorrow about it, hopefully I’ll be alright to go to the gym or do some form of other exercise otherwise.
true prob is best to tell them about my condition incase something were to happen
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All the best
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thanks X
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Keppra ruined my behavior and mood in the beginning but one thing that helped me alot was/is talking out your feelings so someone can help you determine what is actual emotion amd what is the medicine (mood swings). My girlfriend is very expressive but also very understanding so she helps talk with me and i tell her when the medicine is making me emotional over something that i typically dont get emotional over. The best way to cope in my opinion and experience is communicating and letting others help.
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Support from people is extremely important. You can contact Epilepsy Action in the U.K. Their phone number is 0808 800 5050. Their e-mail is helpline@epilepsy.org.uk Anything you tell them will be confidential.
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I have absolutely no issues now lol (didnt mean to give off that vibe if i did). Even in the beginning its so mild. When I refer to mood swings I do not mean raging or going on a tantrum, I mean being upset over a joke or something minor. Thanks for the concern though, the comment may help someone who actually needs help and reads over the comments. My issues lie more within fatigue and memory loss while on the meds, not emotions.
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Sorry. It was not directed at you. I put the number and contact details there just in case someone needed it.
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I can really relate to you. I struggle with seizures and many mental health issues on a daily. In and out of hospitals all of the time, taking 13 pills a day. Stay strong.
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Hi, Thank you for dropping by. I am strong and will continue to be. I hope you get better and stabilise soon. You stay strong too.
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