Just want to introduce myself

[lovemyboys]

Hi everyone! Well I just wanted to introduce myself.

I had my first seizure back in June of 2010, I remember it perfectly. I was sitting in a rocking chair holding my 10 day old son when I started feeling faint, started feeling my left leg shake uncontrollably and remember calling for my mother who was also in the room with me. I didn't know what was going on at that time, I was terrified and last thing I remember was hearing my mom yelling my name and saying please no. Next thing I know I'm in the ER. There they did a cat scan where it revealed I had a dark spot on my brain and that my brain was swelling. 3 days into the hospital stay and they couldn't figure out why, they thought it could be a tumor but weren't sure and they did a biopsy on the 4th day.
Turns out I had a parasite buried in my brain. I can't remember the name of the parasite but the condition is called neurocysticercosis. I couldn't believe it, the doctors had a hard time believing it too. They had never came across a case dealing with it. While at the hospital I was given Dilantin daily. I was discharged on the 9th day. I had a couple of seizures after that and got switched over to keppra. My epilepsy comes from scar tissue consequence of the surgery. I was seizure free for a year and half, everything was going smoothly with keppra. Until I started having them again. Currently I am on 4000 mg a day.
And I am starting to have terrible side effects. I feel anxious all the time, along with drowsiness and I am unable to sleep at night. Theres times where I feel like a zombie, I have times where I am emotionless... I hate it. I am also constantly being "babysat" by my boyfriend or my parents. They are always coming over because they are afraid to leave me alone. When my boyfriend leaves for work I either get dropped off at their house or my mom comes over to mine. I get called to ask if I've took my medication. I feel like I can never really do anything on my own. Even if I take my sons to the park down the street, I can't take that long or ill be called to see if I'm alright. I know they mean no harm and do it because they care but its hard on me.
I hope to meet people here who knows first hand how its really like to live having epilepsy.

 

[Nakamova]

Hi lovemyboys, welcome to CWE!

You've come to the right place. Everyone here "gets it" about epilepsy -- the frustrations, the side effects, the struggle for independence and understanding...
I hope you can talk with your neurologist about changing meds -- the anxiety is a tough Keppra side effect to put up with. In the meantime, have you tried taking a B6 supplement? It helps some folks with Keppra's mood-related side effects.

Best,
Nakamova

 

[kirsty1327]

I agree,you should really talk to your neuro about trying something different.
I think I was on keppra for about a year.It was awful.I was also like a zombie-but a really angry one!!! My husband also described me as being emotionless which looking back is very sad but at the time I didn't care at all. I was so tired and it gave me irritable bowel.And eventually my seizures started again so I have nothing nice to say about keppra. I really hope your dr listens to your concerns.Do you have an appointment soon???

 

[Fedup]

lovemyboys

Just like Nakamova said you've come to the right place. Everyone here "gets it" about epilepsy. Sorry for all the trouble you had along the way and the result. The side effects are not good with any medication you are on, some of us deal better with it or have side effects you can live with. So yes going back to your neurologist and telling him how you feel would be a good idea. The "babysat" part we have all gone through, you cannot blame them for being concerned but they do have to come to terms with the fact you have epilepsy and this is just a hassle to you, its not going to change who you are and you will not let it.This takes time so yes expect to be dropped off, one other thing though you also will have to tell them in a nice way that you are able to look after yourself but you still need them.

As you said they mean no harm but you are well able to do things, you need to realise this yourself there will be some things of course you cannot do. So try excepting it and realise epilepsy does not rule your life - you rule your life and there is very little you cannot do. Sounds like you have a good family and boyfriend who care about you so be careful how you say things. The lose of independence, the frustration, depression anything you can think of some one here has experienced it. Feel free to talk about it or ask questions.

 

[cazzy]

hi...oh my dear that sounds awful..you had bad trot....like the others say the babysat is cos they love you..you may not like it but they thinking of baby aswel as you....this is all new territy for all of you even medicals this parasite...make the most of them helping believe me they no do it forever let them see you living your life but have chat with dr and get all the info you can about this parasite

 

[Cardones]

Hi there

My friend had exactly the same condition as you. It's caused by the tapeworm. She got hers after a trip to India. She's only had a few seizures though and is ok now.

I hope your neuro can discuss the med optins with you to find one of the many alternatives that may work much better for you with no side effects.

When I had my seizure I actually found the well meaning concern of friends and family far more anxiety inducing than the actual seizure so I know how it can feel. Hopefully they will listen to how you feel and adapt. Try not to worry, you are just going through the bumpy stage of trying to find the right treatment etc. Once you find the right drug for you and your family and friends ease off, you will be back to a normal life! In the meantime, get involved here and realise you are very far from alone.

 

[cazzy]

india off my list places to go then

 

[RunningGirl85]

Hi - welcome! This is one of the first places I found after I was diagnosed with epilepsy and did a web search, and I love the support!

How long have you been on Keppra? I felt that way for about a month, or after dosage increases, but those side effects have subsided. I also take an antidepressant to counter the mood changes, and I feel mostly the way I felt before I was on Keppra, which is nice. You might also want to ask about adding another medication and decreasing Keppra (I started on Lamictal along with Keppra and it has worked really well). Of course there are still some negative side effects, but that seems to be a problem with any med...

Anyways, I hope you are able to get it figured it out!