Struggling with Epilepsy as a young adult

[Mrs.Walker]

I had my first seizure when I was eighteen years old. I moved out of my parents house because they were in the middle of a messy divorce. I have 5 younger siblings that I left behind because I just wanted to get away. That was my way of coping.

I lived with my boyfriend at the time. I woke up and felt my foot go stiff and numb followed by my leg and then I fell back and blacked out. My boyfriend took me to the hospital and I had no idea what happened to me. I didn't even know what a seizure was (I know...crazy).

I thought that would be my last seizure because I never had them before! Why would I have another one? I was very wrong. I had so many seizures that I lost count. I was very lost, stupid, and young. My boyfriend couldn't handle taking care of me and sent me back to my dad. I was heart-broken of course but it was for my own good. He wasn't a very good boyfriend to start with.

My dad took care of me and made sure that I was alright. I'm so happy to have a daddy like him. I wasn't scared when he was around.

Soon after, my stupidity continued (haha). I met my now, fiance. We went out for about a month and then I moved in with him. His reason was because I lived so far away from me and he didn't want to lose me. That was alright with me!

He didn't understand my seizures. He got upset whenever I had one because he didn't know how to fix them (He is a fixer). I felt very sad and emotional because I was 19! I wasn't supposed to be having seizures! I was supposed to be happy, healthy, and in college having one of the best times of my life.

My doctor put me on Phenobarbital and the seizures decreased greatly. Thereafter I got pregnant (of course). I only had 2 seizures throughout the pregnancy. My baby girl came out healthy. There was and there is nothing wrong with her. She is perfect.

After I had her I had a seizure when she was 3 months. I knocked over the cover of her bassinet and it fell on her little head. I was so worried that it would smother her (I'm so paranoid). I never wanted to have another seizure again (not that I didn't want that to start with). I wanted to be a normal and healthy mom taking good care of my baby. It depressed me greatly.

During the next year and half I had BAD anxiety every night in fear that I would get one because I hate them. I hate not having control of my body. The seizures actually hurt me going into them. I was afraid of not breathing. I hated trying to talk and it coming out as "baby talk". I hated not being able to get up or even move around. I hated that this had ever happened to me. I kept on taking more medicine than I should have. I was totally drugged out. I lost a lot of weight and I was bumping into walls like I was drunk. I was a total mess.

I did a lot of stuff that I regret that year. Yet, my fiance still stayed with my crazy butt! It was so bad! Sometimes I think that it all was a bad dream.

Now, I'm 21 and I had a seizure exactly a month ago, breaking my 1 year seizure free time My doctor is weaning me off the Phenobarbital (that stuff is so bad for me) and increasing my dosage of Lamictal.

The Phenobarbital makes me more anxious and it's addicting. I know why they want me off of it. It's not as good as the newer and "safer" medicines out there. I don't know what stupid doctor put me on that medicine.cks

My fiance was sitting with me in my hospital room crying because he told me that he is sometimes scared that I will never come out of my seizures and be gone for good. It made me feel so bad. He doesn't hate me because I have epilepsy. He hates that it's there. He knows all that he can do is be supportive and help me with my medical issues.

He has a three days on and three days off schedule at his work and he works the night-shift. He hates that I stay with my parents (Dad and Step-mama) while he works. He wants to see me and our baby girl when he gets home from work. I have to do that because I need someone there to help me if I do have a seizure. They only happen at night.

My feelings as of now about this stupid disorder are definitely negative. I feel like a grandma (no offense!) carrying around medicine and having to go to the doctor a couple times a month. I feel like my life is going no where because my self esteem has dwindled because I feel incompetent compared to healthy young adults my age. I feel helpless.

I can't drive and I don't work. I've only had one job my entire life and it was only for 3 months! I've been too depressed to try and put myself out there. I hate this negativity and I want to get rid of it for good!

I'm getting married in early April of this year and I'm planning my wedding. I need to feel a weight lifted off of me so I can enjoy the process of planning my wedding and getting married to my fiance who has stuck with me through thick and thin.

If you started getting seizures as a young adult, can you please tell me how you cope and what keeps you going? Any other advice from anyone would be greatly appreciated!

Thank you for listening to my sob story I don't like talking about seizures to my family or friends. Saying or mentioning, "Seizure" is like saying "Voldemort" to me lol

 

[Endless]

Hi, Mrs. Walker,

First of all, welcome to the forum, and congratulations on your upcoming wedding!

I'm not a young adult, but we all go through the same emotions and challenges. Coping with a seizure disorder is really hard. I don't know about you, but stress makes my seizures worse.

I cope by focusing on what I DO bring to this world - caring for others, compassion, and some wisdom on a good day. The rest, well, it's a work in progress. I've struggled really hard with all of this. I lost my self-confidence, cried a lot, felt hopeless, and wondered why I bother. But then things turned around and I felt more competent, more in control of my life. I feel a new strength - sort of a trial by fire - and a diamond emerged. Now, what to do with the diamond?

Seizures have made me a more compassionate person, and changed me for the better. It has been one of those life experiences that I didn't ask for, but since it's here I might as well let it make the best of me.

As for the fear - a feeling of doom is a common aura for me. It happens before my seizures. It can happen as an aura and I don't get a seizure, too. It's considered a mild simple partial seizure. I also get fear seizures, a type of simple partial seizure. Anything I do or see during the doom or fear makes me afraid of that thing or person or situation. I have to talk to myself and say, "see - it was just a seizure. you're not really afraid of that thing." It seems to be working.

You are a strong, competent person. You brought a beautiful child into this world and you are taking very good care of her. Your seizures are very infrequent - the need for help with your baby may not be necessary? There are just some precautions about handling her, etc.

Your fiance sounds like a gem! I love men and their need to fix things. Bless them for that.

He is a fixer - so find something about the situation he can fix. Involve him in your care. Can you ask him to come to a few appointments so he can remember the technical stuff for you? Can you ask him to set up a system to help you remember to take your meds on time? Can he set up autodial on your cellphone so that the second you start to be aware after your seizures you can dial him? Be sure to tell him, often, how much he is making a difference for you and how fixing things for you has made you so much safer.

You are going to be okay. This situation has made you stronger than you know. You are a good person who is needed by the people around you - your baby, your husband, your parents. I know you think that you feel like a grandma and are incapable and a burden, but look what you contribute to the lives around you, and the truth will come out. You are unique, and you are valued and loved. There is only one you. One beautiful you.



It's all going to be okay. <<<<<hugs>>>>>

 

[Mrs.Walker]

Thank you for your advice! You know, I went to a psychologist and didn't feel comfortable talking to him because he doesn't have personal experience with what I am going through. He never had seizures.

I'm glad I found this forum and joined because I need somewhere to express what's going on in my crazy brain haha.

My fiance puts my medicine in his safe and gives it to me when it's time for me to take my medicine. I'm still taking that Phenobarbital. They are weaning it off. It's very addictive and I don't trust myself with that medicine bottle! He knows it too. Thank God for him. He is a very hard worker and is the best fiance and daddy.

I'm glad that you shared your feelings because that's exactly how I am feeling now and I have thought about that fact that this condition is here and I have to make the best out of it. It has changed me. I am more loving towards everyone and I'm not materialistic at all like I used to be... all caught up in meaningless things. Love and caring for people has grown strongly for me. I can see life through a clearer window than I did before. I was trying to see it through a dirty window before the epilepsy came up.

I have 5 sisters and 1 brother. I want to be the best example for them. I give my 18 year old brother hugs and his favorite drink, "Mountain Dew" haha. I spend a lot of time with my sisters...the older ones, talking about school and not going out with boys until they are 35 haha and my little sister. I play barbies with her and make up clubs, drawing banners for a, "Hopie and Sara club only!"

My baby girl is turning "2" in June. She is so cute and funny. I am blessed to have a cute little "Ella" in my life. I get to teach her new things and play with her in her cute little room. I always have something to look forward to with her because she is always learning and she looks up to mama.

Life has so much more meaning. I just need to kick the gloom and doom feelings. They can really weigh you down. I try to make the most of everday. When the sun goes down, I ask myself, "What did I do today?" I try to treat everyday like it's my last.

Thank you for encouraging me! I appreciate it and it's coming from someone who's going through it. You are awesome! <3

 

[Nakamova]

Hi Mrs. Walker, welcome!

I second what Endless says. And I''m glad you've found us, CWE offers a ton of support and empathy.

It can take awhile (unfortunately) to get on track with the right kind of treatment program. But it's worth it to keep trying, however annoying and draining the process may be. The Lamictal may very well do the trick for you. (I'm now almost 3 years seizure-free on it).

Being proactive about your health (with or without seizures) helps you regain control. here's a good link to start with: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[carolyn]

Hi Mrs. Walker!

I agree with Endless and Nakamova 100%

I myself got my first complex partial seizure when I was 17 and a few months later my first generalised seizure. All of this in my last year of high school before the final exams and choosing university. It really freaked me out. The problem with me was that my first seizure was weird enough that people around me thought I was on drugs.. Because I was supposedly running around and doing very inappropriate things. I don't remember 3 hours from that time. When my memory returned I remember the headmaster of my school shouting at me and lecturing about something and I was totally disoriented. Everyone believed it was because of the drugs and none even suggested seeing a doctor. That first seizure left me with a very bad headache that made me pass out during the class the next day and that's when they took me to the hospital, did all the blood work (which showed no drugs lol), EEG, CAT scan etc. and that's when it turned out what it really was. First I was relieved to know that it is not my fault. Because everyone at school was treating my like I was taking drugs for pleasure and the last thing I felt was pleasure really... Then it changed in fear of not knowing how to deal with it. And then it changed again in denial and thinking- it's temporary, I will get better one day.. Well, this denial stage lasted for a long time and only 2-3 years ago I came to terms with it and accepted things as they are.

What helps me cope is having people who I can trust and talk to when I have a bad day of 'gloomy' thoughts. I also always think that my situation is not that bad, most of my seizures are complex partial with occasional tonic clonic breaking through and I know some people who struggle so much more than I do and don't complain about it. To put it short- I am trying to look at the positive side of things. It is not a death sentence, my meds do quite a good job of managing it all, I have great friends who support me and don't treat me like a 'freak'. Of course I hate the fact of this 'unpredictability' because I never know when the next 'breakthrough' seizure will come. I hate the fact that I can't drive for the time being but whenever I pick a place to live I look for those with a good public transport connection to places where I go often. And I hope that one day my seizures will be controlled well enough that I will be able to drive safely .

Well, it all came out longer than I intended... What's the most important is that you have your fiancé who is with you on this and will support you no matter how bad it gets. There are some people out there who can't even count on their family to understand their struggle and that's really sad. So my advice would be to try to look on what you have and can do in your life instead of focusing on things that you can't have and are beyond your control right now. Life is beautiful, even though it's not always what we hoped it would be .

 

[Elsie]

I was not as old as you when my first seizure happened. It took years and years to accept the change in my life.

Your fiance sounds like a wonderful man who cares for you. Please let him know you appreciate him because some people don't have anyone in their corner because of all this.

Also, don't be surprised if your mood lifts when you are off the phenobarbitol. I was a basket case when they tried to put me on that. And another similar medicine had me looking at the 'glass half empty' for many many years.

I wish you luck with all of this and welcome to the site.