A bad week

[AmyBadd]

I went for about 7 years (age 14-21), initially having seizures occasionally, then towards the end having tonic-clonic (grand mal) seizures almost weekly and absence and myoclonic jerk seizures almost daily. After trying two kinds of meds that didn't work, I found my miracle cure! I only had one more seizure soon after starting taking Epilim.

That was until this week. I'd been seizure free for about 7 years. In that time, I've passed 3 degrees, including a PhD, got married, started a great career and my husband and I were just starting to talk about having a family. Last week we were on holiday in the Swiss Alps with my family. It was an active holiday, with hiking and mountain biking and we arrived home late on Monday evening. I had to be up for work on Tuesday morning, but I'd slept well every night.

I had a little bit of stress Wednesday morning as I had to get a lump on my breast checked at the hospital - but, as my GP had told me it was likely to be, it's a completely harmless fibrous growth. I started to feel a bit unwell on Wednesday afternoon, and when we went out with friends in the evening, I insisted on leaving straight after we'd eaten, as I was really struggling to engage with those around me, and I got into bed as soon as we got home, about 8.30!

Thursday, I felt a bit better, but when I arrived home from work, I realised I'd done two things I hardly ever do - left me keys at work, and let my phone go dead, so I couldn't even phone my husband to ask him to hurry home and I knew he was planning to go swimming so could be a couple of hours. Luckily, my kind neighbours let me come in and chat to them until I was able to get hold of my husband on their phone. It wasn't long after I'd spoken to him that I told them I felt faint and asked for a glass of water. Of course, the next thing I remember is the paramedics taking various measurements from me. Luckily, the neighbours knew about me having epilepsy, only because they'd asked me earlier that evening whether I drive and I'd explained why I don't (and that I'd just this week sent a medical questionnaire to the DVLA hoping to get a provisional licence!). Also luckily, they are wonderful people who don't scare easily and have since been to check up on me!

Of course, I went and checked all my meds, but I'd not missed a dose. A while ago, I did reduce the dose, under the doctors supervision, but I think the last change must have been 2 years ago. Perhaps it was exhaustion from my holiday, but that is hardly the most exhausting thing I've had to deal with in the last 7 years. Same with the stress of the breast examination. I never used to know anything was wrong before I had a seizure and this time I'd been saying I didn't feel well for 2 days beforehand, and in particular felt faint immediately prior. I wonder whether I had a bug or something, too? Perhaps it was a combination of all these things? Like I said, it's also out of character for me to do things like forget my keys or to charge my phone.

It was certainly not the worst episode I have ever had, but it is a horrible stumbling block after all this time. It's really only been in the last 2 or 3 years that I've felt in control of my own life and now that's questionable again. I've already rung the DVLA to cancel my licence application and although I hope this won't effect our plans for children, my husband and I obviously are now very eager to talk to an epilepsy consultant.

I just really want to know whether others of you have had similar experiences. I suppose I was starting to think I was cured and perhaps it is good to not have that delusion, but it has definitely knocked my confidence.

[Carley]

I am so sorry to hear this, I can only imagine how you feel. I was diognosed in 2008 a month before our wedding after having two grand mal seizure just out of the blue. Previously though I had been having episodes of déjàvu but didn't realise that it could be linked. This started when I became & teacher so I put it down to stress. Anyway, I had a year off work until they found the right medication for me. I take pregabalin & touch wood I have been seizure free for 4 years. Luckily I went back into teaching but I can only work for 3 days. I get extremely tired & like you have to listen to my body & sometimes be the first to leave a party or go to bed early & I even have to try & rest the day before & the day after working. Another long story but we tried for a baby for 4 years with no luck, neurologist said it had nothing to do with my medication, we went through 3 lots of unsuccessful IVF & now a miracle has happened & I am 14 weeks pregnant naturally.

I know my story isn't helping you at all but I want to say thank you. I often sit & think of any harm my medication is having on the baby, I also think that maybe I don't really have epilepsy anymore & wonder when I will be able to come off my medication. However I now know that I could still have a seizure, that I do need to continue to look after myself etc.

I do hope docs can help you & that one day you have a family of your own. I also hope somebody on here can help you too & share their experience with you. Thank you & good luck.

[AmyBadd in reply to Carley]

Thank you so much for your reply and I am so pleased to hear your wonderful news! I suppose maybe I was starting to think I may have got past it, so in the long run, maybe this is a useful warning for me, but at the moment it feels like a step back.

Epilim is one of the many epilepsy meds which can be harmful to unborn children, which is why as a young woman, it was only the third one I was tried on. When I reached my mid-20s and thought I might want children in the near future, with help from the doctors and nurses, I slowly reduced from 1200mg to 800mg a day. I was afraid to go lower, I was told that taking less than 1000mg was unlikely to have any effect, and of course, having a seizure when pregnant could also be very harmful. Perhaps 800mg is just closer to my threshold than we realised, and now I am glad I didn't come off it completely. I have been prescribed a high dosage of folic acid by my GP, which I intend to start taking soon, and she has also recommended we don't try for a baby until after we've seen a consultant (so hopefully we'll see one before the end of the year).

All the best for you and your beautiful baby xx

[jules1973]

Hiya i hope you are feeling abit better as you have had lots to deal with i first had epilepsy after a brain infection hashimotos encephalitis twice i may add i had been on epilim for along long time but it just wasnt controling my seizures which were abscence seizures every year it was getting harder to deal with i had tried

A whole load of other tablets with no luck and just last year i found out it was refractory (tablet resistant) so the neurologist suggested neurosurgery i was shocked to say the least but i went for it in december last year just before xmas i have now been seizure free for 9 months and back at work and considerin learnin to drive it has changed my life for the better all you have described i have went through memory problems are very common in epilepsy as my hippocampus was scarred n useless this was removed along side my right side temporol lobe having surgery was a breeze gettin better is the hardish part why dont u ask if this is possible in your case its life changing for the better

[AmyBadd in reply to jules1973]

Hi Jules. I don't think surgery is something I would consider at the moment as I know that my Epilepsy can be controlled well with medication and without having serious side effects. Believe me, when I first started taking epilim, it was a huge and sudden improvement. This has all just come as a bit of a shock to me as it seems to have come pretty much out of the blue. I just would really like to hear if anyone else has had a similar experience, because I know not everyone responds to treatment but I wasn't sure whether this was something that commonly happens or not.

Thanks so much for your response.

[Hidden]

Hi, Amy,

Epilepsy is such a mysterious condition that the possibility of having an unexpected seizure has to be something that haunts all of us. In all my conversations with people with seizures, though, I haven't noticed much that "commonly happens."

I've been very lucky; a neurologist prescribed Lamictal for my seizures and it has worked for nearly 17 years. I still wonder what could happen, though. I doubt if the memories my seizures killed will ever return, so I don't know what I felt like before or after I had seizures.

I think my seizures were hormonally related. I'm now post-menopausal, a time when the neurologist told me my seizures would either "get really bad or go away." I've cut back on my medication and have noticed only that I'm more alert and less dizzy. I just hope I made the right decision and a seizure doesn't sneak up on me.

I'm trying to live by the "one day at a time" approach to life, being grateful for every day without a seizure and hoping I'll be in a good place when/if a seizure does come on me out of the blue.

My best to you; stay strong.

[AmyBadd in reply to Hidden]

Thanks. I was certainly lucky when it happened to me. Ordinarily I would have been home on my own and who knows what might have happened, but it just so happened that I left my keys at work for the first time since I started 6months ago. Perhaps that was because I wasn't myself that day, but it meant I'd gone to a neighbours house and they looked after me.

[Hidden]

Thank heaven for neighbors. I remember the day following my last seizure a neighbor across the street came up to me and asked me if I was OK. She had seen me wandering around at 3:00 in the morning in my night shirt. I don't remember that at all, so I must have had a seizure either before or after that. I do remember visiting another neighbor shortly after that (again around 3:00 am) who encouraged me to call the neurologist. I did, and he adjusted my medication, and I've been OK since then. Spooky.

[ecossaise]

Hi Amy,

Sorry to have taken a long time to write this post; life has just been a bit chaotic since I saw yours. You sound in need of, at the very least, a friendly ear to speak to - in particular one that knows what you are talking about and that is the wonderful thing about this forum!! I'm really sorry that this has happened to you - I can understand how you feel. I had a minor version of your experience when I thought things were finally under control and then I had another major tonic/clonic seizure. The difference in my case was that I had only been "stabilised" for about 6 months after 5 years of very frequent, uncontrolled seizures. This was obviously not such a shock or as disruptive to my life as in your case as I had not really "returned to normal" after only 6 months seizure free but I do know how depressed and frightened I was by it. All I can say to you is that my drugs were adjusted slightly and it is now almost 4 years since I had a seizure. I now drive again with no more real worries than I would have had before. The only "precaution" I take is that I don't go out in the car if I am feeling in any way unwell. It has never turned out to have been necessary but doing that just stops me from feeling uneasy in any way.

I really hope that you can feel settled again and just get on with your life. I have tried to take the attitude that no one knows what is going to happen to them on any day in their lives - they may get knocked down by a car or develop some other kind of serious illness (cheerful, aren't I?!) but my point is that the whole world doesn't go around worrying about some unknown problem that might turn up - so I truly try to do the same thing now about my epilepsy. I've tried - and I think, overall, succeeded - to do this too and I found it has helped me immensely to have a pretyt normal life. Perhaps, once you get over this initial shock, you can mange to do this and then go ahead with starting you family and all your lovely future plans. The only reminder will then be the fact that you can't get a driving licence for the next 12 months!!

Please, don't think I ma trying to be patronising by my last paragraph, I have just tried to explain what has worked for me, hoping that that approach might help you too.

Good luck.

Margaret

[AmyBadd in reply to ecossaise]

Thank you, I agree it is important that we all try and stay positive. I guess the first few days after this happened, I was a bit panicky and obviously upset, but I think now nearly a week has passed, I have settled down and got my head around it a bit.

The chances are I won't even need to change my meds. After 7 years of great control, it was probably just a one off thing, and it didn't even last as long as other seizures have done in the past. Plus I knew I wasn't feeling very well for the two days beforehand. Like I said, I'd mentioned this several times to my colleagues and my husband and I'd gone to bed very early the previous nights. Hopefully, I'll know if I start to feel the same extreme exhaustion again in the future that this is when I need to take extra care and get myself in a safe situation. Also, in particular, I knew I felt faint immediately prior to the seizure, whereas in the past, I was never able to say in advance that something was wrong.

As for the driving licence thing, it really isn't a big deal. I've managed without one up to now and I will continue to do so. I get the bus or cycle the 6 miles to work, both of which I quite enjoy doing. I will look into getting a new disabled bus pass, though, because I let mine lapse when I moved house. It was just annoying that I had literally posted my medical questionairre to the DVLA the previous day and then had to ring them to let them know it was all wrong!!!

[Evangilene]

Try ans see a neurology consultant asap so you can discuss it is detail. So sorry to hear of this...it is a setback but hopefully one that can be sorted

[AmyBadd in reply to Evangilene]

Yes, I haven't seen a consultant for a while and I recently moved house so I've never seen one in the local area. I still see a specialist nurse once a year, but haven't felt the need to see a doctor since my seizures have been controlled.

A few months ago, when I saw a GP and asked for a repeat prescription of Epilim, she asked if I was planning on starting a family soon. When I said "yes", she said she wanted to refer me to a local neurology consultant for advice throughout conception and pregnancy. I saw the same GP after having the seizure last week and she said she would contact the hospital to try to hurry through my referal. I guess now I will just have to wait until I get an appointment.

[AmyBadd]

Hi everyone,

Thanks for all your kind responses to my post about 6 or 7 weeks ago. I just thought I would follow it up by saying I had another t/c seizure this week Again, I had been travelling (I was at a work conference in Sweden) and in particular I had slept very badly the previous night due to having a stomach bug. I felt unwell the couple of hours leading up to the seizure (struggled to keep up with conversations and I had a breakfast meeting at 7 that morning!!!) but I was trying to stick to the conference agenda. Anyway, that didn't work out well as I ended up missing nearly a whole day! Luckily I work for a pharmaceutical company and a large amount of the people there had medical degrees! Plus they are generally lovely people!

Amyway, I have still not heard anything from the neurologist I'm supposed to have been referred to, but I have my annual meeting with my epilespy nurse on Monday. Looking forward to talking to her...

Amy