Hey

[Jeff]

I thought this place looked nice, so I decided to join up. I guess I should supply some background information about myself in this introductory post. My name is Jeff and I'm from Melbourne in Australia, and I guess it's quite a nice place to be, though I would love to travel. My first seizures occurred around the age of 13, at first my family thought I was just spacing out/daydreaming, whatever, as they'd be talking to me, and suddenly, for a few seconds, I'd just stand there vacantly, taking none of it in, and then I'd have to ask them to repeat themselves. I felt guilty as I think this annoyed them sometimes. Later on we discovered they were petit mal/absence seizures. Then months later I had a tonic-clonic - I remember that moment vividly, my sleeping pattern was all out of whack, and I'd just rose from bed to join my family, and it was the evening! We settled down to watch a game show [Who wants to be a millionaire?] and early in the episode, I was told I cried out and and had a fit. Then I regained consciousness and was surrounded by paramedics. I was just confused.

Anyway, in the following years there was mixed success in gaining control over the seizures, but thankfully at this point I'm on a combination that's kept me seizure free for years - keppra, topamax, epilim. The only thing, I'm constantly tired and my neurologist is keen to ween back on some of the doses as he thinks my form of epilepsy is quite mild and can be controlled with fewer meds. I'm only concerned as in the past, I've begun having seizures again after neuros have tampered with the meds.

Cheers
All the best

 

[nicholas:)]

Hi-ya Jeff. Welcome to the site. If, through the neurologist's intervention, your seizures peep through, I am sure the dose will be increased. Try not to worry - keep a journal as the does is changed

 

[jemsister]

Welcome, Jeff! I am new here too. I would be nervous with med tampering as well, mainly because I've never been seizure free (except for a brief period early on when I was very first on meds). If I ever finally attained seizure control, I would be extremely nervous about tampering just because of my history. That said, it's not uncommon for them to be able to reduce meds, or remove them entirely, with success. A friend of mine developed nocturnal seizures for about five or six years, but afterwards was successful in going off meds and having no seizures.

If you have gone years seizure free, the doctor may be right in that maybe you don't need so much medication. And if the meds make you groggy, that would be great! I hope you can do that with success!

 

[Jeff]

Thank you guys. I suppose at first I was very resistant about the whole idea of lowering doses, but the longer that time goes on, my feeling has been changing - if the dose is lowered, maybe I won't feel so lethargic. I'd love to try some things at this stage in my life, but I often lack energy. Especially as I had a lung transplant a few years ago, I should've mentioned that, but I had other health issues, but overcame them. This is the period of my life where I really want to try new things.

 

[jemsister]

Lung transplant--yikes! You certainly have more than one reason to be tired.

 

[Nakamova]

Hi Jeff -- Welcome to CWE!

I know it can be a tough choice -- staying at a dosage you know is safe vs. reducing a bit to see if the side effects go away. I'm trying to decide the same thing, though I'm going to wait until next year before making up my mind. Good luck to you either way.

Best,
Nakamova

 

[Fedup]

Jeff

All you can do in life is try, in every way this includes helping yourself. Remember it is possible for breakthrough seizures to happen when the levels of you meds are beaning adjusted so it can take a little adjustment on your part. But like you were told do not worry and keep a diary of things. Its a good help to you and the neurologist.

 

[Jeff]

Nakamova- Thanks, good luck to you, as well. From what I've read about some of the medication, I feel as if I've been lucky - for example, in the case of keppra, I know the "kepprage" effect is quite notorious with that drug, but I can only recall this one moment several months ago where I was suddenly overwhelmed with all sorts of feelings and I began screaming at my family totally uncontrollably - then I stormed out of the house and calmed myself down with a brief walk, but I was so upset, and it was terrible, as I'd upset my family, too. But such an occasion as that only happened once.

I know Josie has mentioned paranoia in association with keppra as well, and I constantly have the sense that people are out to hurt me somehow. I was even seeing a psychologist as I have bad issues dealing with anxiety.

Fedup, I enjoy writing, even about the mundane day to day aspects of daily living, so a diary would be something I'd enjoy keeping track of. The next appointment with my neuro is next January.

 

[Fedup]

Jeff

Good for you Jeff, I think you already know all there is. All I can say is best of luck to you going through this and Nakamova. Its never easy lowering or increasing your medication and the person it happens to goes through a rough time, so a very big best of luck.

 

[jyearta]

Hi Jeff and Welcome,

I have the same type of seizures as you. I'm on dilantin and Clonazepam and for the first time my seizures are under control (for the most part). I still déjà uv which is a seizure. If I take meds. of any kind it triggers my seizures, that being the case for me I thought that I could just watch my triggers and come off meds. SLOWLY. I start back with the seizures each time, with me just cutting back 1/4 tablet ion ONE meds.

I understand what you mean wanting more energy. BE CAREFUL

Now that I've said all of the above, each person reacts diff. to the diff. meds.

 

[CQ:)]

Hi Jeff,
Welcome to CWE, hope you are better since the transplant.
I'm a fellow Aussie, I live in NSW but in March last year I had brain surgery at the Austin Health in Heidelberg & go to the epilepsy clinic at the Austin Health for regular follow up appointments with the Neurologist & Neuropsychologist.

I know what you mean by wanting more energy. I am on Keppra & Tegretol & at the moment I am going well on that combination but when I have been on other meds I have had no energy which I hated.
My Neurologists want to eventually get me on just 1 med but a lower dose so I am currently slowly being weaned of Tegretol & I mean slowly. My neuro at the epilepsy clinic lowered my Tegretol in March (12 months after surgery) & I was supposed to stay on that dose for 6 months. But when I went back to see the neurologist in September I was under alot of stress so he felt it was better to not muck around with my meds while I was under so much stress. I go back to see the neurologist at the epilepsy clinic in March & I am hoping we will be able to lower my meds again.

 

[jemsister]

Definitely became paranoid, and severely depressed. I even became paranoid about my own mind--thinking my mind was playing tricks on me, having doubts about my memories and thinking my experiences were untrue, thinking everyone had bad thoughts about me--it was awful. Worst 6 weeks I've ever had. Keppra was a bad drug for me. Never again.

 

[Jeff]

Definitely became paranoid, and severely depressed. I even became paranoid about my own mind--thinking my mind was playing tricks on me, having doubts about my memories and thinking my experiences were untrue, thinking everyone had bad thoughts about me--it was awful. Worst 6 weeks I've ever had. Keppra was a bad drug for me. Never again.

I have heard about the negative side effects of keppra, and the truth is, I do sometimes find myself overwhelmed with negative thoughts. But the thing is, I haven't been sure whether to blame the medications or my present situation in life, which isn't ideal - I really struggle to meet people and develop connections, and generally it seems like not much is going on in my life... my life really lacks any direction and purpose. And the negative thoughts, sometimes I fantasize about just running away and killing myself. Within myself I know I wouldn't really go that far, but it just makes me wonder, these thoughts, is it the drugs, or the rut I find myself in, that's provoking it?

Sorry about the negative post... saying all this, these thoughts occur only sporadically.

 

[jyearta]

I too have had ALL the thoughts that you just described, I don't know it is the meds. but I have struggle with depression my whole life.

I have to put on music or work in my yard to get my mind off of it all. I said this more than once, some days are easier than others.

Just know you are not alone.

 

[Jeff]

Thanks, it's one of the great things about joining this place, I feel like I've immersed myself amongst a group of people who understand me.

 

[jemsister]

I have heard about the negative side effects of keppra, and the truth is, I do sometimes find myself overwhelmed with negative thoughts. But the thing is, I haven't been sure whether to blame the medications or my present situation in life, which isn't ideal - I really struggle to meet people and develop connections, and generally it seems like not much is going on in my life... my life really lacks any direction and purpose. And the negative thoughts, sometimes I fantasize about just running away and killing myself. Within myself I know I wouldn't really go that far, but it just makes me wonder, these thoughts, is it the drugs, or the rut I find myself in, that's provoking it?

Sorry about the negative post... saying all this, these thoughts occur only sporadically.

This all does sound very familiar. For me it was the Keppra, but of course that isn't always the case. I could tell fairly quickly because I am not ordinarily a depressive person. So that was the biggest clue for me. It completely changed my personality.

 

[irish]

This thread alone shows me it was worth joining this forum.

Keppra had a very negative effect with me......... couldn't wait to change meds.

 

[kirsty1327]

Hi Jeff,I'm up in Brisbane.I'm on topamax and epilim.I was on keppra but it turned me into a monster!!!!! It made me so angry and sad and depressed.I think a lot of people with epilepsy struggle with depression and locking themselves away from friends and family but keppra was on a whole different level.
On the topamax and epilim now it's probably the best I've felt in 3 years - touch wood!!!
It's only been a couple of months but fingers crossed.good luck to you jeff and I hope you're keeping cool in this heat!!!!

 

[Jeff]

Hi Jeff,I'm up in Brisbane.I'm on topamax and epilim.I was on keppra but it turned me into a monster!!!!! It made me so angry and sad and depressed.I think a lot of people with epilepsy struggle with depression and locking themselves away from friends and family but keppra was on a whole different level.
On the topamax and epilim now it's probably the best I've felt in 3 years - touch wood!!!
It's only been a couple of months but fingers crossed.good luck to you jeff and I hope you're keeping cool in this heat!!!!

Yeah, we had a hot one in Melbourne, just past, so glad it's cooled off for now

I see what you mean when you say, "locking themselves away from friends and family" ... if you come looking for me, the likelihood is, you'll find me alone in my room, reading a book. It's one of the major bouts of conflicts I have in my life - I often feel really lonely and I tell myself how great it would be to meet... someone... but on the occasions where I am interacting with people, like my family, well, sometimes it goes fine, but in other moments I'm so desperate to escape for a bit of peace. As I find myself in turmoil.

I'm quite a submissive person and I tend to suppress my emotions, keep them hidden below the surface. I'm really terrified of doing anything that would do anything to displease anyone, but I often seem to fail at this... suppressing my emotions like this, I wonder if it allows for a rapid build-up of that negative energy to be stored inside, as it's not being released and expressed. For the most part I feel like I keep my anger in check, it's the stress and depressive side of things that mainly affect me.

My friends often tell me I'm really negative... I constantly put myself down, it's like a constant stream of self-deprecation that I can't escape from. I feel like a really bitter, nasty person at times, at least self-consciously, thinking to myself.

Who knows, maybe when I see my neuro next January, he'll advice that I slowly be lowered off the keppra. Who knows.

 

[kirsty1327]

I've always been outgoing but my fear of having a seizure in public freaks me out!!! When I had my last big seizure I hit my head so bad that when my 8 yr old daughter found me there was so much blood she thought I'd been murdered.but even seeing something that awful,the one thing that her and her little brother remember was that I had wet myself.All that blood.....but no "mum wet her pants" lol And that's what stops me from going out with my friends.They say they understand and it's ok come out we are here for you but they haven't got a bloody clue!!!!! Having them deal with my seizures is one thing,wetting myself or worse is not something i want them to deal with!!!!They have no idea what this fear/anxiety feels like. I actually have no idea how to get past this problem.I know it could ruin friendships.........????