kind of new here

[AlisonBP]

feel a little bit silly. my best friend lives across the hall from me. yesterday evening i had a seizure. must have been a fairly bad one because my girls went to get him. when i came round he was stroking my hand and talking to me. once he knew i was out of it properly he said he was really sorry but he had to get back to the babies. his youngest 2 are 4 and 5 and he'd had to leave them with his 12yr old son (he has aspergers).he said to the girls to get him if there were anymore problems.

my friend that is single with no children was meant to visit last night. he didnt turn up and didnt call or text to let me know he wasnt coming. dont think he can handle it so well. havent really seen him since he saw me have a seizure in may. he has been my friend for 16yrs but i've only been friends with my other friend since october. guess it shows these things are more to do with the person than he length of time you've known them.

its quite funny as its the newer of my 2 friends that said he wouldnt be able to handle it as any kind of condition or illness really freaks him out. he has been dealing with my seizures since may. when they were at their worst he even had me stay with him so he could make sure i was ok during the night.

the one i've been friends with the longest said he would be fine and know what to do. turned out he panicked and didnt have a clue (even though he'd had it explained to him an hour before). he even snapped at my daughters when they tried to explain what he needed to do

[RobinN]

Sorry to hear about your seizure Alison.
We learn the true character of a person during the difficult moments. Talk is nice, but it the actions that matter. I am glad that you had someone to help you out yesterday. He sounds like a great friend.

[AlisonBP]

ok so i went to the neurologist today and he finally said it is epilepsy. guess thats good. whats not so good is that he has decided to cure my insomnia i should lower my meds. problem is its only this higher dose that has had it under control.

not looking forward to doing that but trying to not think about it much as i dont want to bring on a seizure through stress. he has discharged me even though it was my first appointment in nearly 3yrs and he'd only seen me for a few minutes. this means if things get worse i have to be re referred which means another 2mths on the waiting list.

tried to talk to him. he asked what kind of seizures i had. told him there was more than one. saw him write tonic clonic seizures after i'd described one type. when i went to describe another he ignored me and asked my friend if he'd seen any and what they looked like. i know its good to get an outside view but surely he should want to know what level of consciousness i have. only i can explain that. also my friend has only seen a couple. not like my other friend who has looked after me for weeks and seen 10 in one day before. i wasnt even allowed the time to say what he had seen.

dont know if i should ask for a second opinion or try it and if i need re referring ask to see my old neurologist not this new one. at least the old one would listen to what i said and not act like i have no idea what i'm talking about.

oh and he repeatedly told me that lamotrigine is more likely to cause drowsiness than sleep disturbance. grrrr

[occb]

My partner takes his lamotrigine in the morning only, all in one lump, because if he tries taking it in the evening or at night, he can't sleep either. We've tried to wait it out, but no go. So, yeah, lamotrigine can cause insomnia. I hate it when doctors just ignore your personal experiences -- everybody and every body is different and reacts differently to meds.

I have been considering if my partner should go off all meds and start fresh because the lamotrigine doesn't seem particularly effective anymore for either moods or seizures (or whatever. he hasn't been offically diagnosed with a seizure disorder yet). His memory has been so shoddy lately, and he's moody as all get go.

[AlisonBP]

my memory has been apalling and i keep getting my words in a muddle. thought it was down to exhaustion though. had been having 100mg 3x a day but now meant to have 125mg am and 150mg at night. he wants me to keep reducing down until i'm back to 100mg twice a day. a month ago i was still having seizures on 250mg a day guess i just have to see what happens.

[neilB]

My memory is going out the window lately too. My neurologist just took me off of my carbamezapine (200mg 2x day) and I'm only on Keppra (2500 mg/day - 1,000 morning & 1500 at night). I've been telling her and it's gotten worse when I went on the Keppra so we'll see. Hang in there!

[occb]

It's brutal to have such a bad memory. He gets so frustrated with himself when he can't recall what he did 30 seconds ago, or where he put something. His speech has also been muddled -- it's partly exhaustion from poor quality of sleep, but I suspect his meds are also somewhat to blame.

[AlisonBP]

i will forget conversations half way through which can be awkward. i try to think things through a lot before i say them to try to not say the wrong word. sometimes i will take an innocent word and replace it with something completely random or inappropriate. my spelling has suddenly got bad too. i used to be good but now i spell things wrong or i will look at a word and think it doesnt look right even though it is.

[epileric]

I've had more trouble with my memory since I tried Keppra a couple of years ago. I'm on Tegretol & was all through the keppra tryout.

What's happened to me is that I'll for get very obvious things but they'll come back a while later, maybe even a day or 2 later. Recently I just moved & yesterday called the govt. to change my address for the GST rebaits. The lady asked my previous address & I couldn't remember it. After looking for my most recent tax return to prove I'm who I am I finally remembered my old address. The lady changed my address but you could hear the suspicion in her voice. That sort of thing really makes me feel frustrated with myself.

I guess that medically speaking that's trouble with retrieval rather than memory since it is in there somewhere, I just can't find the memory in my brain when I want it.

[occb]

Definitely trouble with retrieval eric &alison -- exactly the same with nightfighter. I have the most repititious conversations with him (especially about changing meds), by the end of the conversation he'll have forgotten what we discussed at the beginning, or even that we've had this conversation a kajillion times before. But a half hour later, he suddenly remembers it all and gets annoyed with me for always talking about it *sigh*

That's life in our house right now. I love him, but something needs to be done. Maybe it's time I take an active role in finding him a new doctor instead of waiting for him to do it.

[epileric]

While posting my previous post I'd forgotten the word "retrieval" (which I'd never forgotten before). I had to look up "memory" in Wikipedia to come across the word I wanted.

How's that for irony?

OCCB, what you described is like my home growing up. My mom used to repeat herself over & over again and it used to drive me nuts. Finally, many years after I'd moved out my mom asked me if I remembered when she'd repeat herself 10 or 15 times. I said "yes". She said "Well... I actually repeated myself 20 or 30 times".

I don't know but I would assume the situation you described is common with people on our meds.

[occb]

Chances are it is common. Yeah, I've asked nightfighter the same question, and he'll say I heard you twice, and I'll tell him I actually repeated myself 5 or 6 times lol.

You had to look up memory for the word retrieval, eh? That's so something my partner would do too.

[AlisonBP]

had my moments of wondering if the side effects were worth putting up with. then i'd get bad have a day of almost constant seizures and remember why i put up with it. although there is a brightside to the seizures. i've got more toned from the seizures than i have the gym. every cloud etc

[AlisonBP]

my friend just told me to do a list of emergency numbers for my girls incase they need any help. i had to google emergency as i couldnt remember how to spell it. doh!

[occb]

Heehee. Partner (nightfighter) does that too, and the thing is he's rubbing off on me. Now I tend to forget what we're talking about, and what the word is... and I'm a professional communications specialist! Yegads!

[Bernard]

... I have the most repititious conversations with him ...

The patience you learn from these exercises really comes in handy if you ever end up in some sort of tech support role.

[epileric]

I have the most repititious conversations with him

Maybe but if you grow old together & your memory goes too, then you can have the same discussion over & over & neither of you will get bored or frustrated.

[occb]

too true Bernard and eric

[AlisonBP]

my best friend is currently under the neurologist for a different problem (he got the good dr). his memory is appalling too and he keeps getting words wrong too so it makes for some interesting conversations.

luckily most things one of us will remember and we can usually get each others words right but it is funny. people think its the cute finishing each others sentences that couples do but its really that we keep forgetting the words or forgetting what we were saying

[occb]

You're like walking reminder post-its for each other!