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Epilepsy Action
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I Feel So So Alone & Scared 😔

Hi everybody.

I'm new here and really hope it helps me overcome the loneliness I'm feeling.

I was in an abusive relationship for 10 years which ended up with me getting viciously attacked and my skull smashed in and leaving me with Epilepsy. I'm now safe after being moved to a new area but as a result of all this I'm terrified and have PTSD (post traumatic stress).

The combination of medication I now take has caused me to gain a lot of weight (40lbs) and I have terrible acne on my face.

I feel so so alone and even though I live with my son I have nobody to discuss my illness and experience with.

My support worker suggested I join this site in the hope somebody can talk to me and give me some confidence back.

Thanks for reading this,

Jen 🤗

7 Replies

Hi Jenny,

I'm sorry to hear about your traumatic experience. Epilepsy is never easy, specially because it's an invisible disability. I've had epilepsy since I was 14 and I'm 27. It has been a roller coaster ride for me. Talking to your neurologist about the side effects may be a good place to start. I started seeing a dermatologist because a medication I was taken off of left me with a lot of acne. So I have an idea of how you may feel. I lost 20 pounds and got acne. I had insomnia from the medication so I lost all my confidence for the first time. I had never felt so low. I also started practicing yoga and joined a gym. I've gained my weight back, no more under eye bags and my acne is getting better. It has taken me a lot of positive self talk and relearning to love myself as I am. I am not where I want to be yet but I'm working toward it. Feel free to talk to me, I know it's hard and not many people understand. Hope this is somewhat helpful.



I am so sorry to hear of your situation. I was in a violent relationship as well with a young son at the time. I was diagnosed at 14 with epilepsy and that took some time to be controlled but to have this condition because of the injury you received is awful. I hope you are safe and are able to get proper assistance. It is one thing to be abused but for it to affect you like this is horrible. I must admit though when I first got divorced I was scared to trust people again and those that I DID,never really understood what I experienced.

Dealing with epilepsy can be very scary alone. I found lady psychiatrist who helped me for 3 years. I always felt I was as fault and a total failure for many years and also suffered from manic depression. I went to this therapist about twice a week. She helped me build up my confidence so I could get back on my feet and be independent. There are many things in our lives that take up the number 1 spot. Eventually I worked my way up the list so that I was number 1 and if that could not happen I could not be there for my son and be a good role model. Wish I could find that list for you. Anyway see if you can get therapy through your counsellor as a first step. I know what it is like to sit in a corner and cry for hours this will just make your epilepsy and PTSD even have more control over your life. Look deep inside and make the first step to your journey through this. All the best. Elsie keep in touch.

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You are not alone! I have traumatic epilepsy and PTSD. I have had to “forgive” and “bless and release” A LOT of toxic people in my life. Who have harmed me, including my mother, sister and my only daughter. This does not in any way mean I do not love them. Because I do unconditionally. However, I love myself. One love. They are simply in a toxic place at this point. To thine own self be true.

I take Zonasimide for my seizures. It helps weight loss and no break outs. I also take Nudexta for my emotional lability with a very low dose 10 mg fluoxetine SSRI for depression. All totally normal after traumatic brain injury.

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Welcome JennyWren1988 - . when I finally said epilepsy out loud most of my shame went away and relieved a lot of my anxiety.. that was half of my battle. Do try and find a support group where you can also meet people in person. may be start a meetup group near you when you feel a little safer for a cup of coffee once a week or month.. meeting people like us is soooooo healing. I also did the Studio E.. very healing.


Also connect with your local Epilepsy Foundation and see if they have a Peer2Peer program where they can put you with a mentor... It helps to have a one one conversation with someone who gets you... best of luck to you . You are a brave/ amazing woman for just sharing you story!


Hi Jenny,

I am so sorry to hear that.

You are absolutely in the right place!! You should look for support programs in the area you have moved to and surround yourself with positive people - because I truly believe that pain shared is pain halved. Stay strong!


I am on the same boat but have a 7!year old daughter. You will find plenty of support here. 💐


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