Looking For a Friend

[Lunedefleur]

Hi, I’d love to meet someone around my age to just talk about our conditions and how we deal with life as young adults. Things like being coddled and feeling like you’re missing out. I had my first seizure (grand-mal atleast) 5 years ago when I was 17. The last 3 years have been full of medication changes and more seizures resulting in me being diagnosed with Jeavons Syndrome last year. I don’t have many..any..friends and I’ve only been isolating myself even more because I feel like a burden.


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[Porkette]

Hi Lunederfleur,

Welcome to the forum! Just like you I've tried med after med and nothing really worked to stop my seizures so I had surgery done to reduce my seizures. I have both absence and complex partial seizures. I started having seizures when I was 10 (55 now).
At first I would pull away from my family and friends until I saw how there are famous people out there who have epilepsy and they don't let it stop them. Elton John whose a professional singer, retired professional football player Alan Faneca never let it stop him and that's when I told myself I can't let my seizures stop me and this is what you may want to consider. I found keeping myself busy was a lot better than staying home and having more time on my hands to think about the problem. If you are interested you may want to try the medical marijuana that really helped me a lot reducing my seizures.
Another thing I started doing this past Feb. was taking 2 Tablespoons of cider vinegar with mother in it and it has stopped most of my seizures. This is a herbal way to stop or reduce seizures for some people. It doesn't taste the best but it sure has helped me.
Take my word everyone here is a great friend and very supportive. Here's wishing you only the best and May God Bless You!

Sue

 

[valeriedl]

I was 27 when I had my first seizure, I'm 42 now, but I can sort of understand what you're going through.

Before my first seizure I was living on my own, could drive, and I had a ton of friends. The first seizure I had was so severe that I had to be put in a coma, to calm my brain down is how I describe it, about a month because they couldn't get the seizure to stop.
When I was finally able to leave the hospital I had to move back home, couldn't drive any more and I was still having seizures left and right. I don't know how many med changes I went through. Some because they didn't work or I couldn't handle the side effects.

I had a ton of friends before then and we'd get together all the time. But when I had to move back home they all lived about 45 minutes away and since I couldn't drive it was really hard to get together. They all just seemed to dwindle off. I don't know if they were scared of me or just didn't want to go through all the trouble it took to see me. I'd even been dating a man at the time and the same happened with him. He never officially 'broke up' with me, he just stopped calling.

I have one really good friend now. The funny thing about her is we hated each in high school but we both got jobs waitressing in the same restaurant and got to be friends. She lives about 45 minutes away, has a full time job, is married and has kids. She calls and texts a good bit and we always get together at least once a month.

Try not to isolate yourself! Get out of the house as much as you can, even if it's with your parents or another family member. Don't feel like a burden, family is usually the ones who want to help the most! My parents would try to get me out of the house as much as they could, even if it was just going to the grocery store, so I could be around people. If there's things going on in town that you'd like to go to see if someone will take you. I don't have much of a problem talking with people, I never did, I can pretty much walk up to someone and start a conversation so it was really nice to be able to do this.

I don't know if your scared about having a seizure in public but don't be. I know I was until I had my first one. After that it just seemed normal, if that's the right way to describe it. One of the best was when I was in the grocery store with my dad. I was pushing the buggy when I had the seizure then took off down the isle grabbing things off the shelves putting them in the buggy. My dad ran after me trying to stop me and pull everything out I was putting in it! We still laugh about this!

Hanging out with your parents might now sound like fun but it can be. I'm not sure how close you are with your parents but I'm pretty close with mine so it wasn't much of a problem. There was a concert that I wanted to go see so my mom took me. While we were waiting in line I heard someone say the name of a band that I really like. I started looking around and asked who said the name of the band. A man said he did and we started talking about them. I gave him my phone number and he called two days later and asked me out.

I was upfront with him right from the start about my epilepsy, things I can and can't do, what my seizures are like and everything else. We dated for about two weeks then I had my first seizure in front of him, and it was a bad one, and I ended up in the ER. It scared the crap out of him but about two years, and I don't know how many seizures later, we got married and he's still here.

I know I'm a good bit older than you but I act like I'm your age more than I do mine. If you need someone to talk to let me know.

 

[resaebiunne]

Hello. My story is a bit different. I've had epilepsy since I was 12, but since I had it from such a young age it was just something that was there. I didn't have a tonic-clonic seizure until I was much older, so the seizures were of no concern, so even though I was on medicine while I was younger, it wasn't really concerning. I was even taken off medication, because the seizures were not considered serious enough to warrant medication. I got my learners permit and drivers license and everything at the regular ages. I drove just fine for about 10 years until around 2 years ago. I'm just now submitting paperwork to try and get my license back! It's been 13 months without a tonic-clonic seizure, and there were good reasons why I had that seizure.

I also have a mental illness and it's tough managing that. Depression comes with epilepsy, but in my case it's even worse than that (just look up SZA if you're curious). Depression can really hurt you and keep you down in the dumps. I've been depressed so badly that I had to be hospitalized late last year. It was a lousy few months. It's good that your parents are there to help you get out. I live with my mom. Her boyfriend drives me nuts sometimes. I am spoiled though. If it weren't for them, I don't know where I would be right now.

Anyway, I'm up to chat anytime. Feel free to PM me.

 

[Sabbo]

Hi. I have had epilepsy since I was a kid, but it wasn't diagnosed until I had some tonic-clonic seizures when I was 14. They were doing an EEG after it, & I had one of the "weird feelings" I often complained of. Those were diagnosed as simple partial seizures. About 19 years ago I began to have complex partials, too.
I've taken just about every AED out there. I am now on Topamax & Zonegran, but still get breakthroughs.

 

[seagull]

You are not a burden it your perception.YOUR FAMILY codderling tends be a thing parents can do you have be assertive with out getting cross or upset with them.Sounds like it all suffercating you rather than depression.Is it possible go assertive cause.I did at local night school 6weeks and it really did help with confidence

 

[Jezy]

I am quite a bit older than you early fifties but I have been having Grand Mal and Abscense seizures on off since I have been ten so feel free to contact me at the moment I take Lamictal and Keppra.

 

[DEEMO :)]

Hi
I am 28. A little bit older than you. I had to google Jeavons Syndrome. I learnt something new tonight I have left temporal lobe epilepsy. I am not as restricted with stuff in life compared to others here but some things are starting to impact my life again. If you ever need a chat feel free to message anytime.

Dan