2nd seizure - Do I really have epilepsy?

[Sand01]

My daughter (aged 19) woke up this week, turned her head and felt her head lock and started shaking, she then does not remember the rest, her boyfriend said she was out for around 1 min, shaking, frothing at mouth, rolled eyes, urinated & bit her tongue.

She is at Uni so I am sure sleep deprevation plays a huge part, however the night before she had no alcholol and a chilled night.

This also happened 5 years ago, where she suddenly woke up as was late for something, and similier happened, we really put this down to the shock of knowing she was going to be late for a ferry.

Becuase of this they are saying very probably epiletic, they did do bloods , and referred her to a nerologist in which we are seeing next week, however saying she cannot drive for a year and must let DVLA know.

I want to go prepared next week, however I really do not want her going on medication for life as only had 2 episodes, or am I being naive, as this is all new to us. I beleive they will do further tests, but really feel for her as they have said no alcohol, no strobe lighting, and as at Uni this is totally devasting for her.

Any advice would be very much appreciated

[monaco1]

Go to a neurologist ASAP! Sorry that this has happened, but it should get reported quick! I don't want to sound negative! Two seizures in five years isn't much, but it could be the bad birth of something bigger if it is not reported and looked at ASAP! Your description of her seizure sounds like something of a typical strong seizure. Get it reported with as much detail as possible. Don't leave any detail out! (But don't put any false details in either!) They want to know everything. Good that she had no alcohol - that leaves one question answered straight away. Get it reported straight away!

[Sand01 in reply to monaco1]

Yes we are seeing a neurologist this wednesday privately as didnt want to wait for the NHS referral from the hospital.

Thank you for your reply

[Deniseelk in reply to Sand01]

Hi, just wondered how your daughter’s appointment went. I’m assuming going for tests to get a full picture of the situation?

[Sand01 in reply to Deniseelk]

Hi, we have seen a neurologist, but he told us nothing really, on Thursday she is having an MRI & EEG then we have a follow up appointment , thank you so much for asking.

The good thing is , my daughter feels absolutely fine.

[cgarff123]

Don't just settle for a Day EEG either if episodes happen during the night at all. Everyone was telling me that I was having non epileptic seizures, until they did a 3 day ambulatory EEG, and found out that i had both, non epileptic and epileptic seizures. Best of luck.

[Sand01 in reply to cgarff123]

Hi, so I need to ask for a longer duration EEG if the day one shows up nothing, is that what you are saying?, I can certainly ask the consultant, thank you

[cgarff in reply to Sand01]

Always worth asking. I had several docs say your fine.. But once I got the last one to think out of the box, she was surprised. Never know. Worth asking. Ya know?

[new2AMD14915]

Your daughter MUST avoid stress and rushing about. It's no big thing being on medication. I'm 38 years into treatment and I'm used to it now. I haven't had a seizure for 27 years but can't stop the medication as I don't want to have one. Good luck with everything x

[Sand01]

THank you for everyones replies, just to update you, there were a couple of 1 second spikes in the eeg results which apparently is typical of someone with epilepsy, the neurologist however wants to do a sleep eeg to see if it is a local or general seizure, as this may effet what medication she would be on, but he thinks he would probably end up putting her on a mild to medium dose of Keppra.

[Deniseelk]

Hi there, was wondering how your daughter is doing and the results of her sleep EEG?

[JkBrauer]

That is good you have gotten her in to see the doctor and are getting a neurologist.

I remember being a 15 yr. old teenager and going into my neurologist and he told me I would never be able to drive. I was devastated! It took me a really long time to accept those words from my doctor. However, he also said I would never graduate high school, I would end up living in a group home, I would never be able to live on my own or get married or have children of my own. (Those were fighting words for me!) That was my dream was to grow up and get married and have kids and raise a family. Well, I graduated from high school, I went to college and graduated from there too! I found my own apartment- lived on my own while holding down a full-time job. I eventually got married, I bore 3 beautiful children and raised my family! (Today, my kids are now adults and living their own lives and I have a little granddaughter on the way!) I have been seizure free for about 6-7 years now, I have vowed long ago if it ever came about where I became seizure free I would still not drive. (I do not want to take that chance of having a seizure while driving and possibly killing someone or myself.) There is always hope! You can be an overcomer, it just takes a lot of hard work- just like life- this is life!

Keep your chin up!

[Sand01 in reply to JkBrauer]

This is really weird as received your post JKBrauer from my post of 8 months yesterday, and all was brilliant until last night when my daughter had another seizure, this one was 9 months apart from her 2nd seizure.

Now the dilemma is , does she wait and see if she will have another one, or immediately goto the doctor to up her dosage?, she is currently on 500mg twice a day, and I really don't like the thought of her being on more because of known side affects, the one good thing is she is on Keppra.

Any advice welcome

[JkBrauer in reply to Sand01]

Hello Sand01,

I would definitely call her doctor and talk to him/her about what the next step should be, I would also write down what your questions and concerns are ahead of time. I spent many years trying different medicines and trying to find the right combinations that work together for me. I am also on Keppra, I am at the max dosage right now and I also take a low dosage Vimpat along with the Keppra.

Are you keeping a journal about her seizures? This will also help the doctor to know how to best treat her seizure activity.

You are doing a great job, keep it up! I am here if you want to keep talking. Take care!

[Hidden]

Hi Sand, I have just started having seizures too 🙄 41yrs old and 1st one was September, 2nd one middle September & a 3rd 25 October, neurologist put me on 1000mg Keppra twice daily in October remained seizure free until last Sunday I had a large one in my sleep, I’m now awaiting a 7 day heart monitor as maybe a heart issue not epilepsy, have you discussed this with your daughters neurologist? I hope your daughter is well and managing the Keppra side effects ok 🤓

[Sand01 in reply to Hidden]

How awful for you , I hope you do get this sorted.

Thank you for warning me about the heart, although as she had a brain scan & sleep depreviation EEG, they did pick up her brain is the type to have seizures (dont ask me how they actually know this, something to do with the brain waves), therefore I hope there is no other underlying issue, however will bare this in mind if she has another.

The worst part for her is the not driving.

Out of interest how to you feel on your Keppra, any side effects?, that is my one worry, although current she is fine on 500mg Keppra twice a day.

I am also a bit paranoid as did read Keppra can damage your liver, she is seeing the Uni doctor today about what to do now, I suspect her dosage will be increased to 750mg, plus I have asked her to ask him for a liver test, I hope he will consider this.

Let us know how you get on.

Also thank you JKBrauer for your concern, it is lovely to talk with others in a similier situation, it defiantly helps.

[Hidden]

Aww I feel her pain with driving I think that stresses me more than the seizures, my neurologist told me not to google Keppra side effects as they weren’t pleasant obviously 1st thing I did was google!! I discussed this with the epilepsy nurse & she said the help the Keppra will give me outways the risk of side effects 🤷🏼‍♂️ I’m struggling with my moods & emotions with the Keppra along with sudden outbursts of anger for no apparent reason but nearly 3 months seizure free b4 Sunday, has your daughter applied for her free bus pass I got mine within 2 weeks of surrendering my licence, I really hope your daughter is feeling ok with her diagnosis 🤓

[Sand01 in reply to Hidden]

Ha ha I googled also, and went on forums such as this, however I told myself people only posted bad things, never how well they are getting on!

I agree though the benefits outweigh the risks, although I do worry when she goes out drinking (she is only 19).

I did see something about getting a free bus pass but wasnt sure if she would get one, I will definately look into this now & apply, thanks for that.

[Hidden in reply to Sand01]

Yes it’s unfair for her at just 19, I keep telling myself I’m lucky having had the experiences of drinking & being able to drive for the years I have. If you go on your local council website you can apply for bus pass there, they need a passport photo & some proof of epilepsy & surrendering your licence, bus pass only valid after 9.30am is only downside. My biggest problem with everything is memory issues so I hope your daughter is managing ok at uni, I’m trying to get back to work but everyone is dragging there heals on letting me back but hopefully I’ll get back soon. Keep us updated 👍🏽🤓

[Sand01 in reply to Hidden]

I have just submitted an application for the bus pass, the only letter I could send however was a consultants note saying to stop driving, DVLA never sent me confirmation of them receiving her licence so hopefully this will be fine, thanks for the info.

I hope things sort themselves out for you, I can understand you just want to get back to normal and start work,

I will keep you updated.

[Hidden in reply to Sand01]

I got a letter about a month later from DVLA confirming I’d surrendered my licence so you may get something through eventually, perfect take care both

[Hidden]

Hi Sand, hows your daughter getting on? I hope she’s remaining seizure free & collected a bus pass 😊

[Sand01 in reply to Hidden]

Hi

Yes she got her free bus pass last week,

She is good, they increased her dose to 750mg twice a day and she says she does not notice any difference, and so far seizure free, so all is good.

How are you doing?, have you managed to get back to work?

[Hidden]

Ah brilliant glad she got that, amazing the meds are working n seizure free, yup ok had another seizure now on 1250mg twice day n back to work only 3.5hrs 3 times a week but better than nothing 👍🏽 2 months time I’ll be full time again fingers crossed 🤞 glad everything is going ok

[Sand01 in reply to Hidden]

I am sorry to hear about your seizure, do you know what is triggering them?, that is the hardest part for me , as cannot understand what triggers my daughters.

Thats great about being back at work though, and the way time is going, the 2 months will wizz.

[Hidden in reply to Sand01]

Nah still no idea!! That’s the worst bit agreed, got 3 more appointments coming up so fingers crossed!! Yup nearly feb already! Madness lol 😂

[Hidden]

Hi Sand Hows things going?

[Sand01 in reply to Hidden]

Hi

So far so good, even with my daughters medication increasing she has not noticed any difference and thankfully no more seizures, although every time she phones I always dread the worse.

How are you doing?, are you back full time yet and are the mood swings any better?

[Hidden in reply to Sand01]

Ah brilliant so glad she’s doing ok 👍🏽 back at work still reduced hours full time from next week, dreading it I’m so tired all the time still having them it’s been 1 per month since September n now on 1500mg twice daily 🤷🏼‍♂️ mood swings are up n down tbh had seizure 2 weeks ago so meds just upped again so back to square one waiting for meds to settle, so pleased your daughters doing well though x

[Sand01 in reply to Hidden]

Sounds awful for you, any idea what triggers them? I hope things do start to settle for you soon, is your doctor or neurologist very good with you in helping cope?

I suppose it is just finding the right dose then having that settle down so understandble you feel so tired as body adjusting to this all.

Keep me updated, I wish you well for next week at work x

[Hidden in reply to Sand01]

Thank you 😊 no triggers yet, dr been great take care x

[Seziuregirl]

Hey how are you doing. Well when I went to my first Nero appointment I went in blind but they will do a lot of test blood work and you should really ask them if they can tell you what kind of seizures do they think she has. Some of them u can grow out and some u can’t but there is other things then meds that you can look into also.

[Sand01 in reply to Seziuregirl]

Hi Seziuregirl

My daughter had a lot of tests and they did come back with she had idiopathic generalised epilepsy rather than a focal epilepsy, and they have said some people grow out of the type my daughter has, wishful thinking really but you never know.

Thanks for your post, I dont know what I would do without forums such as these