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Epilepsy has changed - anyone else gone from myoclonic jerks to full tonic clonics seizures?

(8 Posts)
dopamax Mon 21-Jan-13 19:25:48

poor you, mine under control touch wood!
They are result of scar due to brain op, had some biggies before op, then small ones since but enough to give me a driving ban.
Tried many meds inc keppra that have not suited, now on big dose of topomax which so far so good.
When I have a seizure feel wiped out for days on end, being single mum of 3 making it hard.
Push to see consultant and to get meds sorted, its all trial and error.
Lack of sleep seems to be my only trigger now??

MooMooSkit Mon 21-Jan-13 17:50:54

Hi there, I have JME to and no it doesn't mean that.

I've had myoclonic and atonic jerks since I was 13 but didn't know what they was and never bothered to get them checked out, in 2008 i remember having them in the morning then woke up at a bus stop with police round me waiting for an ambulance and apparentely that was my first tonic clonic. I was on lamotrigine all through my pregnancy in 2009 and they seemed to work but then after i had my son I was obviously sleep deprived and had a seizure at home whilst making a bottle up.

I kept having jerks all through his newborn days till i could see a neurologist again so think maybe the pregnancy helped masked the seizures for a bit as lamotrigine didn't do a thing for me after that.

I was put on keppra 500mg twice a day and i haven't had a seizure since late 2009 now so it seems to be working.

I would say go back to the doctor, a lot of people need to take two types of tablets to get the seizures under control and i am sure you will get there smile

PenelopePipPop Wed 02-Jan-13 15:21:27

My seizures started after I had DD. Fallingandlaughing (good name!) is right. You do just cope. You take all the help you can get and survive. It isn't nice, but there are a lot of meds other than Keppra and they do work.

Zonisamide has been great for me btw and gave me no side effects. Obviously might not be a good choice for JME, but just wanted to point out that not all modern anti-epilepsy drugs give everyone horrible side effects.

fallingandlaughing Wed 02-Jan-13 11:51:22

I have JME - had myoclonics for years (not knowing what they were), developed nocturnal TCs in my 20s.

Epilepsy now under control on Tegretol - not a usual choice for JME as can make myoclonics worse, but works for me to the extent that I have just started driving!

You've only had one TC, so maybe things will come under control with a medication increase and a lifestyle check. For me alcohol is a complete no-no, sleep deprivation always triggered seizures before I was on Tegretol.

My understanding was that if you are having myoclonics you are at more risk of TCs (kindling effect). So you might have to try medication to try to control all seizure types.

When I had TCs I would often get a stiff and sore hip - think your body takes quite a battering from the forces of a seizure.

Have you ever been on Lamictal - I hear it works very well for most people with JME with minimal side effects. It didn't work for me but I am told that was unusual.

I found Topiramate hell. Zonisamide was OKish, as was Keppra (which you already have experience of).

How do you cope? You just will. When I was very bad with TCs I used to have to take the odd day off work but otherwise you just adjust and do it. My last TC was during pregnancy (DD is 18months now) so I can't comment on the parenting side directly, other than to say in the unlikely event you continue to have TCs even with treatment, it will become normal and you will all adjust.

Hope things go well for you. Take it easy - maybe thime to get into internet shopping??

PenelopePipPop Tue 01-Jan-13 12:42:17

That sounds really awful, you poor thing. I have focal epilepsy - tle so my experience is different to yours. Having a one-off TC doesn't necessarily mean you'll have loads, and if you have been controlled with meds before that is a good sign you can be again.

The limp sounds like Todd's paresis. I used to get it a lot. Horrible but not sinister, might happen again if you have another seizure but try not to let it worry you it will always go away.

OhThePlacesYoullGo Sun 30-Dec-12 23:31:57

Oh and I am not a mum yet, but have had seizures at work before. They will not to do a risk assessment and it probably makes sense for you to tell a few colleagues and a manager that you do have TCs and what to do in the unlikely event that you have one to make sure they don't do anything stupid like put a spoon in your mouth or similar (and don't freak out thinking you are dying - TCs can be very scary to witness if you don't know what's going on).

OhThePlacesYoullGo Sun 30-Dec-12 23:29:30

I also have epilepsy (TLE) and have secondary generalised tonic clonic seizures. Also get hideous headaches afterwards and just feel sore and rubbishy for ages and it can sometimes take days before I feel normal again.

Having one tonic clonic seizure does not mean you will start having regular ones from now one, or even that you'll ever have another one. Do you have any idea what triggered it, e.g. being really tired or stressed or having been sick, not taking medication properly, that kind of thing? What happened during weird episode today? Did you have another tonic clonic?

Do you have an epilepsy nurse? If so maybe he/she could reassure you until you can get seen by consultant.

Hope you feel better soon. Tonic clonic seizures are awful.

notbloodybranston Sun 30-Dec-12 19:58:44

Sorry this is so long - but if you have tonic clonic/grand mal fits I would really just like to talk to you.

I've had JME from the age of 15 and am now in my late 30s. Apart from being unable to drive it hasn't affected me too much. I had to have extra help from family when my kids were young as my myoclonic jerks tend to happen in the morning if I am sleep deprived. But I never had a "big" fit IYSWIM.

I currently take Keppra which has been the best drug so far but have been a bit blase about taking it.

Anyhow... the Friday before Christmas I woke up, took the kids to school and went to work as usual. I hadn't had much sleep the night before as DH was away and I stupidly stayed up sorting stuff out for Christmas. At lunch time I went into the city centre to get some last minute bits and remember feeling odd in Next, tried to hold on to some clothes to keep myself upright. My next memory is waking up on the floor in Next and a paramedic is talking to me. I'd been out of it for 40 minutes, some members of the public found me, then called security guards who in turn called 999.

Apparently I had been agressive towards the paramedic though don't remember it. I do remember that when I did come round and start talking to him that I couldn't keep hold of reality - so I kept forgetting where the kids were or where I was, or why I was there and would then start crying. I was carted off to city centre hospital, DH was called and they ran various tests.

I had a bad headache for a while and then just went to sleep for hours in A&E. We went home, and for the next few days I walked with a bit of limp - I had no bruises so I don't think this was because of falling, but perhaps because I was fitting? The members of the public didn't hand around and the paramedic wasn't sure why I was unconscious (he tested my blood sugars and wondered if I was drunk).

It's now 10 days later and I've been told over the phone to increase my meds and am waiting to see the consultant. I am still very sleepy and had another weird episode yesterday (this time with DH in shops - perhaps I am just allergic to shopping?!!!)

I'm worried about so many things. I remember being messed around on diffferent meds when I was a teenager and some unpleasant sideaffects - I've got a feeling this is going to start again. I am worried about work - mainly because I feel so tired and spaced out.

But my big worry is - is this the future? Once you have one big fit - do you definately go on to have more? How do you cope with being a mum, working and having tonic clonic fits? Ho hum - any advice welcome?

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