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kdw

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Hi guys and girls

I just wanted to share my experience with you and see if you any of you have had a similar thing happen; I wouldn’t normally open up but seeing I’ve had a relapse at an older age it’s really getting me down.

I was diagnosed with generalised photosensitive epilepsy at 11 years old, started on Epilim. Over the next few years had increasing amounts of seizures and had massive doses of Epilim. Apparently most of my tonic-clonic seizures were whilst I was asleep and also some within 20 minutes of waking up but except for my very first one, none were ever during the day. My parents finally found a decent neurologist and I switched over to Dilantin. Also my photic stimulation seemed to cease. When I was 18 I stopped taking my meds as I saw no point. Bad move! Had a seizure late at night before bed. Started on Lamictal as it was new then. That was 1995. Everything was great for 10 years. Enjoyed the single life, didn’t drink too much, stayed up reasonably late, got married blah blah. 2005, sleep deprivation, food poisoning, a few of benign stress, bam! A seizure just after I had fallen asleep. And it was bad. My poor wife was 6 months pregnant too! I was off the road for 2 months and increased my night dose of Lamictal. I also limited my caffeine, alcohol and sleep became a priority.

Fast forward to April this year (2013); I’m 36. Due to a few weeks of not sleeping very well (sick kids), I had a seizure after waking up and going back to sleep at 6am. My wife’s alarm went off; I woke up, went back to sleep, then had a seizure. My neurologist (the same one!) put it down to sleep deprivation and also said the alarm could have assisted in bringing me out of that sleep. I started on Topamax 25mg, increased to 37.5g to control my myoclonus (which only occurs during sleep, and is now pretty much controlled).

Now come to July this year. I went to bed early. Woke up an hour later; I think the dog was tapping at the window. Went back to sleep. Then I had a seizure. It wasn’t as bad, and I have recovered a lot quicker (although still feel a bit dreamy). But of course the question remains – WHY????
I haven’t had alcohol in 3 weeks, I have been sleeping heaps, I’ve lost 8kg’s since my April seizure, I’ve been eating unprocessed/raw foods. The only thing I can put it on is – possibly dehydrated (from a stomach bug a few weeks earlier), possibly waking up from dog tapping at window, maybe something with my diet; oh, and the Topamax has been making me depressed about a few things, causing me stress, sometimes to the point of mania. But I don’t get it, and this is my key statement:

- I had gone for 10 years on minimal dose of Lamictal, pushing my boundaries hard, then another 7 years on a slightly increased dose. Then even with going onto Topamax I have a 2nd seizure in 4 months. WHY?????

My neurologist is away and I can’t contact her or anything; I have stopped driving and I don’t know what she’s gonna say. But under our National Driving Guidelines, if you have only sleep seizures and no waking seizures for 2 years, you can drive. So I don’t see why I can’t continue to. Her plan was to introduce some Epilim with my Lamictal if Topamax didn’t control my myoclonus properly. So unless my body is resilient against Topamax or something I don’t know. I was initially against going on Epilim as it did so much damage to me when I was a teenager, but it’s gotta be better than Topamax right now.

Have any of you had massive breaks in seizures, then had some you just can’t explain? It’s really killing my confidence, and especially if my neurologist won’t let me back on the road (I cannot see why), it’s gonna kill it further (no jokes about killing others please – I haven’t had a daytime seizure for about 22 years).

Thanks all
K
 
Hi all

Not sure if anyone’s read this, but I’ve got something else to add that I thought about; I do smoke occasionally, just small cigars, like cigarillos. I haven’t had any massive increase in my smoking; on the afternoon on the night I had my seizure I had a small cigar. Not that that would be much to worry about, but by chance I came across some research on the internet that states nicotine can limit the effectiveness of Topirimate (Topamax), which I’ve only recently started taking. I mean I wouldn’t say it’s the only trigger for my breakthrough seizure, but it could be a small contributing factor? It’s just weird that, like I said above – I have smoked cigars casually for several years with no problems, then have this happen. Strange….
K
 
Hi kdw, welcome to CWE. Sorry we're late in responding.

I had psycho-motor seizures when I was a little kid. Dr said I grew out of it and shouldn't worry about it ever returning. I was 39 when they came back as tonic clonics. I've been on lamictal now and it's kept the t/c's away. I've had a few small partials and recover quickly.

I think the worst thing about having a seizure disorder is never knowing when one might happen. It can be so unpredicitible and scary.

Have you tried keeping a diary? It might help you figure out triggers you haven't thought of.

Glad you're here. Lots of friendly, knowledgible people. :)
 
Hi KDW,
Welcome to the forum.

I had my 1st Tonic Clonic seizure when I was 9 months & I had TC seizures on a regular basis until I was about 3. I was kept on medication until I was 7 & I didn't have any seizures during the rest of my child hood or as a teenager.

I went 21 years seizure free until 2002 when I was 24 the seizures returned. My mum had called me &I was making no sense so she called my neighbor who checked on me, realised something was wrong & rang an ambulance. I was taken to hospital where I had a TC. I was referred straight to a neurologist who I saw the next day, he confirmed my seizures had returned & put me on Tegretol. After the neurologist ran some tests (EEG, MRI), the MRI showed scarring on my left temporal lobe (most likely from the seizures I had as a baby) he diagnosed me with left temporal lobe epilepsy.

My main seizures were simple/complex partials & I think in the last 11 years I only had 3 tonic clonics. My neurologist tried me on 5 anti epilepsy meds, none of which controlled the partial seizures so in 2009 he suggested surgery.
I had surgery on my left temporal lobe in March 2011 & at the moment my seizures are currently under control.

As Cathy said epilepsy is very unpredictable & we never know when a seizure may pop up. I also agree with Cathy in regards to keeping a seizure diary, noting down any funny feelings you may have & anything you think may be a trigger.
 
Yup feel your confusion and frustration.

I was diagnosed at 17 with TLE took got proper seizure control in mid 20's. Was then seizure free for 10 years and off meds for 8.

My breakthrough seizure was April 2012 and currently on the med a go round. But my diagnosis has changed to JME which I think is a bit ironic as I am 36!


I gave hours of thought as to why my seizures came back. Work was horribly stressful. My birth control implant was running out so wondered if it was change in hormones, EVEN my baby going off to UNI and some chronic empty nest reaction.

But I think you probably will never 'know'.

I think a seizure diary is a brilliant idea so you can see if you can notice any patterns. For me stress, lack of sleep and over heating are my core. If you have a smart phone you can even get an app for that! My seizure diary!

I do hope you figure it out for you !

Q
 
My breakthrough seizure was April 2012 and currently on the med a go round. But my diagnosis has changed to JME which I think is a bit ironic as I am 36!

So do you still have many seizures now? When I was a kid it was all photic induced, however now it seems like you, JME. The reason I went onto Topamax this year was because of my breakthrough seizure and my myoclonus at night. But the Topamax is doing more worse than good. It is controlling the jerks and helps me sleep but the waking side effects are bad.

Hopefully will be able to see my neurologist next week; her intention was to supplement my meds with Epilim to control the myoclonus if the Topamax wasn't helping.
K
 
After the breakthrough I was put on Keppra and started having 60+ clusters of myclonics, it was like a damn burst. Tonic clonic monthly but cluster have 1 then another 3/4 days layer.

Keppra wasn't a good med for me so switched to zonismide 200 mg which halved the Myclonics and Tonic Clonic every 6 to 8 weeks but still a cluster. Wasn't in a therapeutic range so tried increasing zonismide which went really badly for me, irrational thinking severe headaches, had to go back to original dosage and on Clobozam which has knocked everything into touch but has turned me into non functioning zombie. Huzzah that has been halved!

We are all different and some people adjust quicker to side effects than others. I am 4ft 10 and have the constitution of a dry roasted peanut when I drank I couldn't sniff a wine gum without getting tipsy!

What waking side effects are you having on your meds.
 
I had no problems for 17 years on Lamictal by itself, except for making me a little drowsy.

As soon as I started Topamax, from the first night I took it, might sleep was heaps better, and my myoclonus settled down, which was great. But the it all started. For the initial first 3 days I had serious cognitive issues, that wore off. I didn’t really get tingly, I only ever had double vision once when I woke up during the night. But the really bad side effect (even on 25mg/night) was depression. I got seriously worked up over some personal issues. I told my neurologist and she didn’t make too much of it; my wife thought I was a hypochondriac (and still is). When I went to 37.5mg/day (ie 25mg/night, 50mg the next night, because the side effects were harsh), the depression got worse. In the weeks leading up to my last seizure I was getting seriously depressed about some personal issues; I was even getting thoughts of self-harm. Not that I would do anything but the thoughts were there. At some time I was getting so worked up I thought I was going crazy.
After last week’s seizure I’ve settled down a bit, however since going up to 50mg/day, my neck is a bit stiffer (possibly from seizure?), and I’m a little jittery every now and then. Not in myoclonic style, but more like if you haven’t had sugar or something. I’ve been sleeping like a treat and having very vivid dreams, but my wife told me this morning I’ve been talking and making noises/actions in my sleep which has been affecting her, as she thinks I’ve been having a seizure. So I think it’s time to get onto the Epilim.
I’m still out of sorts from last week; normally I would have recovered after 1 week but this one seems to be dragging on. It might be the Topamax. I still feel as if I’m on holidays up the coast, or getting other weird location feelings. I might check the forums to see how people cope with Topamax.
K
 
Checking out the forum for other people's reaction to Topamax is a really good idea.

I know I am on different meds but could relate to so much that you say. The dreams and the changes in thinking.

Best of luck with searching other people's reaction, there is crumbs, big crumbs of comfort knowing your not alone.

Q
 
Hi kdw, I am on topamax and epilim and for the first time in years I feel great but before the epilim was added I was just on a large dose of topamax which worked for a while but I lost so much weight that it became a real issue.
It took MONTHS to adjust to topamax and I'm not kidding when I say it was the worst time of my life.I felt like a junkie,I eventually looked like one because of how much weight I lost (I was only 52 kg to start with and lost 10 kg) I had insomnia,no appetite,soft drink tastes flat.it just sucked!!!!!!! I just stayed at home because everyone was talking about me at my kids school.
I was always on the phone the my neuro telling him I couldn't do it but he just said "the first few months are the worst".
I pushed through with it because I really trust my neuro and he was right.
The epilim was only added because of my weight and I still have annoying aruas every now and then.
Topamax has a bit of a bad rep with some people so see what you neuro thinks because feeling depressed is no way to live-keppra did that to me.
P.s I'm sitting outside having a vanilla cigar right now in lovely (cold) Brisbane so I hope it's not true :)
 
P.s I'm sitting outside having a vanilla cigar right now in lovely (cold) Brisbane so I hope it's not true :)

Hi Kirsty

Wow that's good news; yeah people said the side effects lasted 4 weeks but its been going on longer. At the moment it's the sore neck that's doing it, and the occasional twitch which I mistake for myoclonus.
As for the cigar...hmm yeah I'd like to keep having one occasionally (like weekly) but I'll give up anything I have to. And yes it's cold outside eh! Going to the Ekka? When I was a kid I had to close my eyes on heaps of rides because of strobe lights but I'm ok now.
K
 
I still can't go anywhere near strobe lights,rides(even watersides) make me feel weird.
I just looked in my diary and I would say it was about 10-12 weeks before I became semi normal on the topamax (i was taking 325 mg in the end)and now with the epilim added I'm really good.only thing with the epilim is it's given me irritable bowel and my hair falls out a lot.
 
Hi guys

Good news, can see my neurologist this Thursday. Massive relief! What isn't is when I was making the booking the receptionist said I'd be off the road for several months. Although I suppose it's not her opinion that matters, is it?
K
 
Oh that sux!!!!! I had mine taken away for 6 month when first diagnosed and 4 months when I had another seizure a year later!!!! Good luck on Thursday.
 
Oh that sux!!!!! I had mine taken away for 6 month when first diagnosed and 4 months when I had another seizure a year later!!!! Good luck on Thursday.

Kirsty

Yeah I was on a conditional licence all good; after my April seizure (first one in 7 years), I was off the road for 2 months. My neurologist said if I had another one it would be longer. However that one was at night, as was my one 7 years ago, as was my one 2 weeks ago.

Part 2 of this applies to me; I don’t know how long she would like me off the road but I can’t see daytime driving a problem. Last time she got me just driving to the train (10 minutes away) for 1 month, rather than riding my motorbike into the city in peak hour. Now I can’t do either. I haven’t had an awake seizure for 18 years (not taking medication) and 21 years (photic-induced which no longer registers on EEG):

National Driving Guidelines:
A conditional licence may be considered by the driver licensing authority, despite continuing seizures only during sleep and subject to at least annual review, taking into account information provided by the treating doctor as to whether the following criteria are met:

· There have been no previous seizures while awake; and

· The first sleep-only seizure was at least 12 months ago; and

· The person follows medical advice, including adherence to medication if prescribed.

or

· There have been previous seizures while awake but not in the preceding two years; and

· sleep-only seizures have been occurring for at least two years; and

the person follows medical advice, including adherence to medication if prescribed.

I absolutely love my neurologist and attribute her to saving my life. But if I have some ridiculous off-road period I might have to appeal it somehow.
K
 
Hi peeps

Thanks for all your replying to my comments before; I’ll give you a quick update at what’s happened in the past few weeks, and sorry I didn’t reply sooner.

Went to my neurologist; firstly, there was “no good reason” for causing the seizure. However we did talk at length about things that were causing me serious depression and anxiety. It wasn’t officially confirmed but it was agreed that Topamax can cause depression and I have no doubt this contributed to my depression, and in turn caused my seizure.

Secondly, I have now ceased Topamax (thank God!) and have commenced Epilim. I started on 200mg morning and night but have now gone to 400mg at night. I am feeling SO MUCH MORE STABLE, and though I occasionally get cranky, it’s nothing like I used to be on Topamax. My wife is very happy because I don’t yell at the kids anymore. Also I have very little myoclonus though I do get a little in my feet. I’ve only had one big jerk and that was on a night I went to bed very sad about stuff.

The good news is, because my neurologist has diagnoses my seizures as primarily during sleep, under Australia’s National Driving Guidelines I am allowed to drive. The bad news is, also under the Guidelines – when you have a medication change you must serve a non-driving period of 3 months being stable on medication. So it looks like I won’t be driving or riding my bike until end of October – which sucks severely.

Other than that, I am feeling quite good on Epilim. I’m just also wondering if anyone has had any experience with nicotine and Epilim? No I don’t smoke, but I like the occasional cigar. I mean I was having combined alcohol and nicotine (cigar) once or twice a week, then taking my Lamictal only and going to bed shortly after – and that didn’t do anything for a few years. Also I don’t think I’ll be drinking much any more, only because I’ve kind of gone off it….


Cya
K

P.S. - the only side effects so far with Epilim is I'm a little tireder during some parts of the day; also I felt a bit light in my body today, which was weird. I'm only having slight twitches in feet and not my whole body at night, occasionally during the day.

Would love to hear from you if Epilim has worker and side effects.
 
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