Hi, I’m new :)

[salcyxn]

Hi, I’m 16 years old and currently in the process of being diagnosed with epilepsy. I’ve had seizures for over a year, all being partial onset, and they have been incredibly scary for me. I don’t know anyone else who has epilepsy so I feel very isolated. Most of the time I just want to curl up into a ball and sleep. I’m constantly exhausted and scared that I’ll have another seizure. I recently had my Keppra dosage upped but I haven’t had any results so far. I guess I’m just looking for people to talk to, since nobody around me seems to understand how scary this all is. I guess I just need someone to tell me it’s all going to work out, because I’m so tired of feeling like it’s not.

-Salem

 

[XxBlaqkxX]

Welcome Salem!

Sorry to hear that you are struggling with seizures. I hope that you're able to soon find relief with a treatment that works. Being a teenager with epilepsy is definitely difficult. Been there; done that. Back then I was on Lamictal all throughout high school and I'm not even sure why because I had many breakthrough seizures on it and it wasn't working for me. After I graduated high school, it was suggested I change to Keppra. For me, that worked for 10 years. Then long story, but things got worse then better then worse then better. These days I'm struggling a bit again and it's not fun, but hoping for better days and years ahead.

 

[Porkette]

Hi Salem,

Welocme to the forum! I understand exactly how you feel. I started having seizures when I was 10 yrs. old and that was back
in 1972 along time ago. Just like you I wanted just to sleep all the time because I was having so many seizures do to my hormones
changing and I was on a lot of seizure meds. As the yrs. went by I got a DNA test done and my Dr. was able to find out the best
seizure med for me with the least side effects. You may want to tell your family about that. When I was on Keppra it gave me
a hot temper and I had to get off the drug.
You should start keeping track of your seizures on a calendar and write down what time they happen by doing that your Dr. may
be able to see a pattern in your seizures as to what time of the day/night they happen and what months of the day. Hormones changing
and growing up is what triggered a lot of seizures for me.
Over the yrs. I have meant so many people that have epilepsy and how they carried on with life with no problem. I look at singer
Elton John who has had seizures for yrs. and he never let it stop him along with retired football player Alan Faneca and he started having
seizures at age 14 and he didn't let it stop him. Try taking vitamin B12 once a day that helps calm the nerves and tell your family to take
you to an Epilepsy Center where you can see a Epileptologist which is a Dr. that specializes in epilepsy and is also a neurologist. I got the
most help there and was on the least meds. I wish you the best of luck and May God Bless You!

Sue

 

[Bernard]

Hi Salem, welcome to CWE.

Feeling constantly tired can definitely be a result of being depressed/stressed/anxious, but it could also be a side effect from most epilepsy medications.

Being depressed/stressed/anxious sucks and can actually contribute to having more seizures. It can be a nasty spiral if it gets out of control. So I suggest that you don't shut out the people in your life who care about you. They might not understand, but hopefully they are willing to listen and support you as best they can.

Of course the community here is awesome and will support you too. Cheers.

 

[Heavy Kevy]

Welcome Salem,
You’ll find many kind and knowledgeable people here.
Random questions and observations are permitted

 

[Sabbo]

Hello & welcome to the group. I can recall having simple partial seizures & not knowing what they were--until I suddenly had some tonic clonics when I was a teenager. That's when a simple partial caught was on an EEG, & they were finally able to diagnose them. Until then, classmates often said I was faking things so that I wouldn't have to participate in things.
It can take a while to find the right dose and/or combo of medications that work for you.
I've taken EVERY AED out there for simple & partial complex seizures (those began about 23 years ago). Even then, I still get breakthroughs. I'm currently taking 500MG Zonisamide & 250MG Xcopri per day, and I've still had some breakthroughs, but fewer than Zonisamide w/Topamax.

 

[valeriedl]

Hi Salem it's nice to meet you!

I had my first seizure when I was 27, I'm 46 now, and it's still a confusing thing to deal with. I've been on a good bit of different meds and dosages through the years. Trying to find the ones that help the most can be hard. I might be making another change soon. I've been on Keppra for over 15 years and I can't deal with the side effects anymore so I'm hoping to get off of it and switch to something else. Side effects are also another frustrating thing to deal with. If they are too bad let your neuro know.

I don't think I know anyone else who has epilepsy either. Talking to family and friends about it aren't the same as talking to someone else who has it because they understand you better.

CWE is a great place to ask questions and make a lot of friends!

 

[Jeanbean]

Hi, I’m 16 years old and currently in the process of being diagnosed with epilepsy. I’ve had seizures for over a year, all being partial onset, and they have been incredibly scary for me. I don’t know anyone else who has epilepsy so I feel very isolated. Most of the time I just want to curl up into a ball and sleep. I’m constantly exhausted and scared that I’ll have another seizure. I recently had my Keppra dosage upped but I haven’t had any results so far. I guess I’m just looking for people to talk to, since nobody around me seems to understand how scary this all is. I guess I just need someone to tell me it’s all going to work out, because I’m so tired of feeling like it’s not.

-Salem

Welcome Salem!! So good and smart of you to reach out to others. I remember being 12 years old and having grand mal (tonic clonic seizures -sounds like a drink!) I was terrified and taking older medications that made me sleep a lot and not wanting to participate in anything. I am older now and have continued to have seizures but they are complex partial not grand mals. They are rare these days and that is due to an implant I got a number of years ago called a Vagal Nerve Stimulator VNS. I don't drive, though I did for years until I realized how dangerous it was for others and myself as I don't get any warning at all prior to a seizure. I think getting used to medications can take a while and it can make you very tired. Sleep if you need it and eat healthy and exercise and meditate. Do you see an epileptologist? That is important as they are so knowledgeable and helpful. I travel to Chicago RUSH epilepsy clinic by train about 3 hours away just to see mine. Being 16 and wanting to have a "normal life" is ok and once you realize others are going through the same thing is really helful. Try to focus on your strengths: do you write, have hobbies etc. ? It can really help to do those things. Reaching out here is great you can make new friends with similar issues. Fear is normal but you don't have to be afraid on a regular basis that another seizure will happen. When I was your age I really advocated for myself and asked my neurologist for different medications that didn't drag me down and that helped. I also questioned everything they gave me and it empowered me!!! Certain medications work best on certain types of seizures. I started looking up medications and side effects and talking to other people. I also realized I was depressed as depression and epilepsy often go hand in hand said my doctor so they treated that with an antidepressant which really helped!!! I hope this is helpful!! Please let me know if you have any questions. Blessings to you!!! Jeanne

 

[Sabbo]

I chose not to drive when still in high school--at that time, I only had simple partials. I can still remember the day. That day driver's ed class, it was my final behind the wheel practice. Just before class started, I had a simple partial. Right then & there, I decided I didn't want to risk ANYONE ELSE'S life. What would I do if one suddenly occurred while I was driving? I faked having cramps & went to the nurse's office instead. After the complex partials began, I was glad I don't drive, as they occur without any aura.

 

[Army Vet]

Welcome Salem,

I was 24 when I first started to have partial/complex (13 years ago; I’m getting old ). I had no clue what they were. I was out with family eating dinner and all of the sudden I just started softly chuckling and staring off into space. I finally came to after about two or so minutes and my memory had been erased. I was extremely tired afterwards and just wanted to go home and sleep. I also kept having these panic attacks and not know what was happening. I researched online A LOT and was finally able to put my feelings/actions into words that gave me results. After all, how in the world am I going to describe this feeling and get the correct result? Add my memory of not even being able to remember much of my vocabulary and I’m really screwed. I've found other sites, but this one has been the best as I can chat with others that completely relate and know what I’m talking about and also make suggestions. Found out about auras and simple/complex partials etc. Most people (guilty as charged) only think of grand mal seizures (I call them Hollywood seizures since that's the only ones that will be seen and performed in movies). You hear the word "seizure" and all you think about are the ones where people fall down and shake (again, guilty as charged).

Like Jeanbean, I was able to get a VNS. Took me two years of non-stop calling everyday to the VA, but I finally got on somebody's nerves enough to approved it. They have gone way down, but I still have them. With the VNS it also helps cut the time down. Now instead of 2-5 minutes and being tired the rest of the day, they last about 30-60 seconds and I'm not completely exhausted. I'm still taking three meds, but my neurologist is going to try and wean me off of some of them. We'll see. At the very least I'm going to push for a test to see if my body is even benefiting from taking them or am I just drug resistant.

Hopefully this helps you. My biggest problem was being able to relate this with someone who had similar problems/symptoms and not feel as if I was crazy. It's always more comforting when you can talk to someone who knows exactly what you're talking about.

 

[Music36]

Welcome Salem,

I used to feel alone in my epilepsy before joining an online support group. I no longer feel alone in having epilepsy. Yes, seizures and med side effects can cause us to feel tired or exhausted. But, many of us can still live normal lives. I went through college (undergrad and grad school) as a single-mother with epilepsy. Meds did not control my seizures. I was having lots of seizures (complex partials) and had bad med side effects but I was determined and did not let epilepsy stop me from achieving my educational goals. I finally decided to have epilepsy surgery after living with uncontrollable seizures for decades. I had the surgery in 2015. I no longer have complex partial seizures. I just have occasional auras now.

 

[Music36]

Salem,

Diagnosis is the first step and you’re there. I lived with epilepsy undiagnosed for the first 21 years of my life. I finally was diagnosed at age 21 because I had a tonic clonic seizure. I had no idea what I was experiencing when I was your age. I thought I was the only person in the world to be experiencing what I was experiencing and thought I was crazy. My aura (which continues when I would have a complex partial) is intense fear. So when I tried to describe my symptoms to doctors as a kid and teenager they just assumed anxiety attacks. I never saw a neurologist until I had the tonic clonic. As a teenager, I knew they were not anxiety attacks because of the other symptoms (e.g., altered state of consciousness, unable to talk, auditory hallucinations, etc.), but I had no idea what was wrong with me because like many people I was not educated about epilepsy. Many people just think of seizures as convulsions (not realizing all the different types of seizures that exist).

 

[Sabbo]

I am married & have 2 sons--1 has already completed his Undergrad., the other is in 11th grade. I completed my Undergrad just as I was getting married. I tried to start working a short time after my older son was born, but it's around that time that I began having the complex partials (that I know of).
I've been in so many scary situations because of them that I decided that it was best for me to stay home. Once for example, while commuting to a job I had, I nearly fell onto the train tracks at the station due to a complex partial seizure. Another time, I collapsed right outside the downtown office building when leaving to come home. In both situations, I "came to" at a hospital's ER.
Because the complex partial seizures occur w/o auras, they have also caused me to give up my cooking hobby. I don't use the stove unless someone else is present. I have burned myself at least 8 times--2nd & 3rd degree. Oddly, many times when this happened, I wasn't even cooking.

 

[C0urt]

it improves, most of us have some impressive injury list from at first, but then it gets to point we lose of where the scars come from