I'm new here...

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

antecee

New
Messages
22
Reaction score
0
Points
0
I joined this group intending to whine and cry and rant and rave about how much I hate doctors, medications, and epilepsy after having a major meltdown this weekend. While exploring the site, however, I ran across the "You know you have epilepsy when..." thread and laughed my blues away. Thank you to all of you who posted there (I will add my own "You know whens..." once I introduce myself).

I was diagnosed with adult on-set epilepsy twenty-four years ago, though I suspect I had it longer. Like others, I too was a guinea pig as far as finding a medication that actually worked. I won't go into my horror stories about all the meds I tried; suffice to say that the only ones I found tolerable were Phenobarital when I was first diagnosed (I was on that for fifteen years) and now Lamotrigine, which I have been on for the last six years. I occasionally have breakthrough seizures, but I don't want to tell my doctor because I really don't want to try another adjunct medication.

I developed severe insomnia after starting the Lamotrigine (duh...I was taken off a barbiturate and put on a stimulant). My neurologist told me my problem was "mental" and he sent me to a shrink. I have now gone from Ambien to Ativan to Restoril. Each time I stop one of the sleep meds my doctors have a fit and put me on another because they are afraid I will have seizures if I stop the meds abruptly. So it's a vicious circle, from one med to another to another, and I am getting so frustrated with it all. I just want to be off them all!

The reason for my meltdown this weekend is my memory impairment that seems to get worse and worse as time progresses. My long-term memory seems non-existant - I hardly remember my childhood - and now my short-term memory is really going fast. I'm just curious as to how many of you have serve memory impairment and if this is caused by the medications (I know the Ativan really messed me up) or epilepsy or a combination of both?

Well, this introduction turned out to be much longer than I intended. Thanks to all of you who made it this far.
 
Memory I think is a combo of both cause I cant remember anything pre-epilepsy 15yrs old u take 2 of the same 5 that im on
 
hey welcome to the group.don't worry we each have our meltdowns and times we just want to through a fit, so if you just want to rant or rave about something don't be afraid to post it thats what we're all here for is to help each other cope with epilepsy.
 
Yeah, it was after my first few seizures that I found my long-term memory had been greatly affected. It sucks (can I say that here?), doesn't it. I feel like I've been robbed of my childhood. Thank goodness my brother has a great memory - he fills me in on a lot of details of the stuff I've forgotten. I'm happy to report we had some good times, at least according to my brother!
 
Thank you so much. I took a long walk on the beach (at least, I think I did) and then I posted to the "You know you have epilepsy..." thread, so I feel much better now. I'm sure I'll be raving in the future however, as I probably have it out with my doctors this next week.
 
Hi and Welcome to CWE.

This forum has been life changing for me. The people here KNOW what your going through and share their experiences. You can always vent when you feel you have to talk to somebody.

I was diagnosed when I was 18 years old now I'm 60.

For years I worked outside the home, and had some memory problems. But NOW my short term memory is the worse. I think is because of the meds and seizures. It's not only my memory, but I have a hard time taking in information and processing it. I have a hard telling or writing what I trying to say.

I too have insomnia and I get nervous every night, knowing if I don't sleep then I will most likely have siezures.
 
jyearta,

Thank you, thank you, thank you! I never dreamed anyone would know exactly what I'm going through! (Is "exactly" in italics? All it shows on my computer is .) My doctors certainly don't. How did I go twenty-six years without discovering this website?

I'm home today because I slept about two hours early this morning. I called work at 4:00 a.m. to leave a message, bright-eyed and bushy tailed, and not even the least bit drowsy. I think I may have fallen asleep about an hour later, but I woke up at 7:00. Now it's just hoping and praying I don't have a retaliatory seizure.

By the way, no one would ever guess from your message that you "...have a hard time telling or writing what (you're) trying to say". It was perfectly clear to me!
 
Hi antecee, welcome to CWE!

I've been on Lamotrigine for 4 years, and haven't had any memory problems with it. That doesn't mean it's not the culprit for you -- meds seem to affect everyone differently.

You might want to have a neuropsych evaluation done if you haven't already. It's a series of standardized tests to gauge a variety of memory and cognitive processes. It can be helpful in setting a baseline against which to measure any future changes. It can also identify specific areas and skills that are affected. The neuropsychiatrist can then make suggestions for workarounds or exercises to strengthen any skills that are fading.

Best,
Nakamova
 
Hi Nakamova,

Thank you for the great information. I'm "firing" my current neurologist - he's a very sweet and gentle man, and a good neurologist I'm sure, but I simply cannot talk to him. I don't think he is the right doctor for a middle aged woman like me. He gets very uncomfortable, in fact, he kind of freaks out, when I say things like "menopause". So I'm going to try a woman neurologist. I will definitely ask her about these tests.
 
Welcome and I hope you find the right neurologist that fits your needs. Best wishes and everyone here is very supportive.
 
Halos and welcome. When I first stumbled on cwe I was just trying to find info and others going thru this. The "you know you have epilepsy..." post was one of the first ones I read and it helped alot!

The drs think my scarring is from brain trauma as a child. When I was 7 or so the drs at John Hopkins said it was night terrors and nothing was done. I had my first medically documented sz when I drove off the road into the desert. Then the fun began, as you well know!

My mom said for years..."I don't understand why you don't remember your childhood." I have alot of gaps and finally wrote down alot of what I remember and then talked to family and used other records to fill in the blank spots. It is creepy and too much of it comes back to me during nightmares or after seizure clusters.

I take keppra and am happy with it, esp given the other meds I've tried.

At the moment my husband is working out of state which makes these seizure episodes very scary. When my dog hovers over me I know to expect increased activity. I "woke up/came to" this morning (I've been on a seizure run) with the phone in hand and a male voice talking to me. I thought "who the bleep is on the phone and where the bleep am I?" Course he's used to it and doesn't get offended but I think I did ask him who he was! :p When I came to my senses I said, "I'm seizing again, right?"

I called my mom this afternoon when another partial started, there's no telling what I said to her virgin ears! But she called me back when she went to bed to make sure I was still alive!

This is definitely a great place to gain info and insight and to get much needed support.

/hugs
 
I just noticed you're in CA. The epilepsy center at UCSD was a huge blessing for me, maybe they have a center closer to you. I loved my epileptologist there.
 
Thank you all for your warm welcomes. I think the closet we have to an epilepsy center here in SF is at UCSF, but my insurance doesn't cover any of their services.

What's the difference between a neurologist and an epileptologist?
 
Neurologists deals with all brain conditions.epileptologists just deals with epilepsy and other forms of it thats wat I have been told by countless members on here.good luck....
 
Back
Top Bottom