Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Feeling down and need advice

Wed, 03/15/2017 - 18:39
Lately I've been feeling really down. I'm always afraid of having a seizure in public and humiliating myself. I tend to scream and moan with my eyes wide open so I look like a complete freak and scare people to death. Its the most embarrassing thing ever. The side effects of my medicine have also gotten really bad. I've developed acne (I'm 26) and I have no appetite to the point where it's a battle every day just to eat at all. This makes me really tired and weak and I am really self conscious of being too skinny. Everyone feels the need to mention how skinny I am and tell me how great it is that I don't get hungry. If I don't eat enough, which is usually always, I get extremely nauseous and dizzy from the medicine and I get double vision and can't really walk for about an hour after I've taken it. Ive become really depressed and anxious and I'm scared to even leave the house anymore or talk to people. I've lost all my friends. Its a huge struggle to even go to work. I've tried to stay positive since I was diagnosed about 5 years ago but I feel like I'm breaking down and have no one to talk to. Does anyone have any advice for someone like me? I need some inspiration.

Comments

Hi there alyada! Please don't

Submitted by Kernkraft on Tue, 2017-04-04 - 03:41
Hi there alyada! Please don't give up or feel depressed, I promise you it gets better and a lot of it is down to peace of mind, directly after seizures I'm always crying and feel so lost, like there is no-one and that my whole world has disappeared, but once you get your own thinking back, something the people I have surrounded myself with have helped towards, is letting me know to not feel embarrassed because they purely care that I am safe and are upset to see me such a way. It honestly comes from a different peace of mind and instead of focusing on the epilepsy, focus on becoming the best version of yourself and your confidence will help you overcome these feelings, just don't let the natural depression it causes become you as there is a world of happiness out there and some suffer with far worse things than our forms of epilepsy, that's the way I try and look at things and try and think how lucky I am to only have what I have.Below I'm going to paste a reply I put to a different topic but hopefully some of the bits I've put about lifestyle and choice might help you on your journey, but by all means, if you would like someone to talk to or to ask any questions so you don't feel as alone in this, then I am happy to be here to talk, we have to help each other In this world.

Copied* Hi there, I was

Submitted by Kernkraft on Tue, 2017-04-04 - 03:41
Copied* Hi there, I was diagnosed myself with Nocturnal Epilepsy back when I was 12, I am now 29. I was too prescribed Epilim 500, only to be changed to Epilim Chrono (Slow release and less sharp impact). But in all honesty they seemed to have a worse effect on me, from random moods to exactly the same, sometimes a decreased libido. I also found the Sodium Valproate gave me issues with my gums also.But I chose to look into other areas, and in all honesty, for our situation, I would really recommend either dosing with a small amount of cannabis before bed time, or even better look into cannabidiol, cbd/cbg oil. The first one is obviously a matter of your opinions on cannabis having a psychoactive effect, but with small enough dosing it doesn't effect too much and also helps you sleep, adding to the healing benefit.I have not long ago started with cbd oil (have been using one designed for vaporisers from Canavape.uk) and it has been helping dramatically and also means I can medicate in public without any trouble as it is legal. Also canabidol.com do different dosage ways of taking, where they have a dissolvable gel tab that you put under your tongue so no psychoactive effect and you can get on with your day.I only suggest these highly as when I was younger I was told I would be on my medication for the rest of my life, but thanks to doing with either cannabis or canabidiol oil I have been off my medication for nearly over 2 years now.Have I still had an occasional seizure... Yes... Have they been my own fault because of my own tobacco and caffeine consumption mixed with long hours on digital devices and games... very much so yes. But on the plus side, my moods are far better, and my libido is far more active as a result.I hope this helps in some way as from my own trial and errors I can say, I had to get a hold on my lifestyle choices, control my sleep better, try to lower exposure to digital devices (I also got a Pc monitor with a 1ms delay on it so it minimises the flashes on the screen to pretty much non existent.And if you drink coffee, (or tea, as long as it contains caffeine) try to keep it to a minimum, and try and make it so you have at least eaten and it's not on an empty stomach. I have found over the years, the better you treat your body, the better they become, have herbal teas, do meditation, just live better. But on a sub note, the better you treat your body, if you do go off the rails, it will kick you in the a** a lot harder.I'm not shy to admit that I experimented with other psychedelics years ago (down to social groups and situation) and while they can be fun, ultimately I have had my worst seizures because of it, almost as if karma was giving me a damn good kicking for knowing better than to do that to myself. But now I am doing nice and steady and lead quite a clean life with smoothies and handy breakfast shakes I make myself that give me good enough staples for the day to work with and you start feeling so much better. Personally I don't like "medications" as they come with a lot of other side effects that are not worth the hassle. So I would really reccomend the more natural way for something that sounds very similar to what I have.P.s to note, my epilepsy was originally bought on by heat and stress when my parents took me abroad at 12, and my epilepsy is based off me having more electrical activity in the right side of my brain compared to the left, so if I get tired or stressed, or get shock awakenings, then the left side depletes and the right side tries to compensate sending a spark across my brain and causing them.I hope I have helped you in some way or give you some ideas of where better to aim for. All the best, stay positive

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.