Community Forum Archive

Should I consider myself lucky?

Tue, 03/10/2020 - 04:46
Hello everyone, im new here. I wanted to share my story and see if anyone had been in a similar situation. I've had epilepsy since I was probably around 15 im now 31. My reason for writing is because I've been feeling low since having my first seizure in nearly 5 years. Basically 5 years ago I was not very good at taking my epilim (sodium valproate) and I had a seizure while in the middle of being intimate shall we say with my fiance. I believe the trigger was being woken up as I had been asleep and this had happened before a few years prior before I was on meds. I then had a couple more seizures a few month later while taking weight loss suppliments while my partner was pregnant. Again I believe I was not taking my meds properly. Now nearly 5 years and 2 daughters later I had been fit free. I had been more confident with drinking alcohol and thought I found a safe point where I could drink have fun with no repercussions say about 5 pints, and I made sure I took my epilim.... Until last week I was stuck in London for the evening with a broken down car.... I missed my dose of epilim that morning too and have been really bad with taking it any other morning to be honest.... I Had non that night and non for the next morning either. I drunk about 10 pints over 9 hours With a work colleague and had 4 hours sleep... I decided not to go to work and got towed home as I felt worried about something happening which eventually did. I did find an old tablet in my car that had been out of the blister pack and had swollen up which probs diddnt count for much but thought I'd take it as better than nothing. Then took a proper tablet when I arrived home around 6 hours later. I had about 1 litre of water in the last 24 hours so problely very dehydratrd too. Then at around 4pm that evening while in the living room with my family I collapsed and had a convulsive seizure. Luckily my 4 year old saw nothing.... i feel so bad because I put my partner through all this and risked my kids seeing it happen to me. I have been told I'm lucky to have it as well controlled like I do. Would you guys say the same? I suppose thats where i have become complacent. I literally diddnt think at all about the chance of me having a fit. I've missed out on celebrating my 18th, 21st 30th all the lads holidays drinking and partying so i would thought it would be eaiser to accept and live a sensible lifestyle now I have a family but I just feel really low as I thought maybe I had grown out of it possibly and also I feel I've let my family down.... I also have been worrying what if I pass this on to any of my girls.... if anyone has any advice or wise words for me about anything I written I thank you in advanced. Sorry for the long post.

Comments

Hi,Thank you for posting and

Submitted by Anonymous on Tue, 2020-03-10 - 09:42
Hi,Thank you for posting and understand your frustrations and concerns. It’s important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support resources available for you and your family in your country, please visit: https://www.epilepsy.org.uk/ https://www.epilepsysociety.org.uk/It’s also important that you’re following up with your healthcare team to explore this further and if you continue to experience any changes in seizure frequency, types, symptoms, side effects, behaviors and moods, to help determine what individual treatment plan is best for you. It’s very important that you’re taking your medications as prescribed by your doctor, it gives you the best chance to achieve the goals of epilepsy therapy: no seizures and no side effects. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/importance-taking-medication . However, we understand that managing medications can be challenging for a variety of reasons.You may want to consider documenting every time you miss a dose of medicine or take an extra dose by mistake.You can also have electronic reminders, via text or email, sent to you when it's time for a dose of medicine, so you do not forget and if you do have seizure, write down the side affects you noticed. This will allow you to review and compare with your healthcare team how often you have seizures or side effects when adherence is a problem, versus when you are doing well following your schedule.To learn more about our electronic reminders such as My Seizure Diary & Texting 4 Control, to help you manage your medication visit: https://www.epilepsy.com/learn/managing-your-epilepsy/managing-triggers/medication-adherence Moderate to heavy alcohol use is never recommended for people with epilepsy, as it may worsen seizure control. Some seizure drugs have similar side effects to alcohol and using both at the same time can lead to bothersome and potentially dangerous problems. https://www.epilepsy.com/learn/triggers-seizures/alcohol . Additionally, for some people living with epilepsy things such as, poor quality, or lack of sleep can be a trigger. For additional information regarding triggers, visit: https://www.epilepsy.com/learn/triggers-seizures 

Thank you very much for you

Submitted by Dermot on Tue, 2020-03-10 - 11:24
Thank you very much for you comforting words. They are greatly appreciated and noted

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Mon, 2020-03-16 - 00:35
Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I too struggled in the beginning with my diagnosis to take my medication and when I was younger I even had some small amounts of alcohol. But, my father was an alcoholic and I was a young mother with a son who needed me, so I stopped drinking completely and put some tools in place to ensure that I could adhere to my medication entirely. It sounds like you want to be a good partner and parent, but you need to take good care of yourself in order to do that. As my epilepsy specialist said to me, we shouldn’t be drinking at all because of our seizures and the medications that we take. If you don’t look at it as something that you are “missing out on”, but rather something that you do to take care of yourself and to set a good example for your girls, I think you will eventually feel better about your situation. ConnectHelp provided some tips on medication reminders. I also find it helpful to use a pill box for the week with my morning and evening doses sorted to remind me to take my medication and to see if I have missed a dose. I hope you are able to take good care of yourself and your family. 

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