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Developing epilepsy in teens

(21 Posts)
Devilishpyjamas Mon 01-Feb-16 08:03:19

Anyone with any experience?

My 16 year old has had 3 seizures in 4 weeks. MRI clear so I figure we're heading for an epilepsy diagnosis when we see the specialist later this week.

I'm drawing up a list of questions but wondered if anyone has been through this & has any advice on must ask questions! Any recommended reading gratefully received as well.

Devilishpyjamas Mon 01-Feb-16 17:48:33

Hopeful bump

Billthecat Tue 02-Feb-16 13:59:31

Hi there....I wasn't diagnosed until I was in my late 30s, but had been having "episodes" since I was in my early 20s. I have temporal lobe epilepsy with complex partial seizures, so I don't conk right out, but I DO have a kind of hallucination (whilst still being aware of what's going on around idea which one is real when it happens), my lips smack and I swallow a lot, plus I tap my fingers against the thumb on the same hand. The physical bit I had no idea about - hubby told me I do that.

Must ask questions:.

1 - when will they do the EEG?
2 - when will you get the results of that?
3 - if it doesn't show much in the way of results, INSIST on a sleep deprived EEG - this is the only way my epilepsy showed up.
4 - how soon will your child be referred to a neurologist? Will this be the same neurologist they'll see all the time? Ask for continuity - this is important.
5 - what about a specialist epilepsy nurse, for additional support? Is this available?

Advice I'd give you - research the medication prescribed to your child thoroughly yourself. Keep a close eye out for any side effects - ANY sign at all of your teen feeling unwell within a week or so of starting them should be taken very seriously. I developed a potentially fatal side effect (Stevens Johnson syndrome) and was very lucky that I'd followed my instincts to stop the drug even though a locum doctor told me I had a virus. Listen to your child's body - it'll tell you if something isn't working.

I'd also question the medication in terms of how it will effect growth, development etc. 16 year olds still have a lot of growing to do, and that's not something I had to think about.

Get your GP on board as soon as possible. Mine learned about epilepsy with me.

Be prepared for your child to be very very angry about this, if it is diagnosed. It's totally life changing. I lost my driving licence, my business (cos I couldn't drive and live rurally), my independence, my ability to support myself and my self belief and confidence.

Initially you and your child may well be terrified. They'll give you all these leaflets about staying safe, SUDEP (sudden death in epilepsy), rules about not having a bath when you're alone, not cooking by yourself, not having too hot a shower, not going out for a walk feels like a life sentence. And it is, in a way, but from my personal experience (and I'm lucky, I know....partial seizures are the "easy option") life goes on. You learn to work with it, not have it dominate your life. After all, I could be hit by a bus. It's just as likely.


Billthecat Tue 02-Feb-16 14:00:54

confusedalways Tue 02-Feb-16 14:05:51

I developed epilepsy when I was about 16, with no apparent cause or reason. All tests clear ect, I'm now 22 and living a happy and healthy life controlled daily by medication. It really does not effect my life to much other than the occasional fit and not being able to drive. Good luck I hope your sons case is as positive as mine.

Billthecat Tue 02-Feb-16 14:09:26

Forgot to say - I'm the same as confusedalways....

I'm now seizure free on medication (and into year 5 of this), have my driving licence back, run a successful small business from home and don't generally even think about it apart from to remember to take my pills. Yes, it may change, and I keep being told my my neurologist that one day I'll have a tonic clonic seizure, but until that goes on.


kirinm Tue 02-Feb-16 14:16:18

I developed epilepsy when I was 13. Mine were / are tonic clonic. It might change certain things but in my experience it didn't change my life. I was able to drive (although lost my license and then regained it).

I've never had any reaction to medication. I'd actively encourage her to remember to take it. Life with controlled epilepsy is much easier than uncontrolled (I've had periods of both).

Devilishpyjamas Tue 02-Feb-16 14:28:56

Thanks all.

Ds1 is a bit complicated in that he's severely autistic and non-verbal. We've suspected temporal lobe epilepsy as a possibility for nearly a year now, but he would not accept an EEG (tried twice due to the suspicions). This month he's had two tonic clonics and what looked like a partial or atypical absence (eyes rolled back and shaking down one side of the body) . I can't see him having an EEG though. He just pulls the things off his head. He has had an MRI under GA which was clear (thank god). But obviously you can't give an EEG under GA.

Thank you for the warning about the medication - he is very sensitive to meds and we have had a nightmare with another medication he was prescribed (I'm not convinced it didn't trigger the tonic clonics tbh - it's question number 1 on my list).

He does have a neuro but we haven't seen him for about 5 years. He has supposedly been referred back to him but we have been waiting months. I may chase that after seeing the paediatrician this week.

I'm a bit shocked by how suddenly its come on (in terms of the tonic clonics anyway).

He seems to have very bad headaches associated with the seizures as well - does anyone else get this?

I'm glad to hear you have all been able to control your seizures. I must admit that this does worry me. Ds1's activities have always been quite adventurous (surfing, walking in the middle of nowhere far from roads) and obviously he can't do those with uncontrolled seizures.

kirinm Tue 02-Feb-16 14:42:57

I get severe headaches after a seizure. Is that what you mean? Or are they a precursor for your son?

Flossiesmummy Tue 02-Feb-16 14:54:46

My husband started fitting at around 16 and now takes Carbemazepine to control it. Hasn't fitted since.

Billthecat Tue 02-Feb-16 14:55:37

Yes yes yes..... to headaches, both after seizures and at random. I'm on a beta blocker to prevent migraines as they were crippling me...I've never been told that there's a link but my friend has recently been diagnosed with epilepsy and, surprise surprise, she's also developed migraines. I treat using a drug called Sumatriptan that I combine with one paracetamol, although I now only get one or two a year rather than one or two a week. Beta blockers worked for me, but not for my friend, in fact they make her really ill, so again, it's worth considering all factors.

A non-drug aid for bad headaches is to use an ice-pack. Wrap it well in a towel and lie down on your back with it under your neck / lower part of the back of your head for 30 minutes or so. Initially it feels awful but it does something to the blood flow (think a migraine is restricted blood flow?) and suddenly = headache gone.

If your son can't cope with an EEG (and they're not nice...all those wires) then perhaps a sleep deprived one is the way to go. It'd mean someone keeping him awake all night and then having someone rested getting him to the hospital and ready to snooze in the morning, but it's more likely to achieve results than if he's distressed by the test being done whilst he's awake. It might be worth talking about it with his doctor as a solution to achieve a diagnoses.

You're right - there's every chance these seizures could be a reaction to a medication or even just "one of those things". Many people have a seizure with absolutely no underlying medical condition to blame.

Devilishpyjamas Tue 02-Feb-16 15:17:01

They've already tried a sleep eeg (with melatonin). He can fight it. He'll fight something like lorazepam if it's not somewhere he wants to sleep. Unfortunately he's very difficult in hospital so it's hard to keep him in & he doesn't really relax in there. He won't even let anyone put one of those finger monitors on his finger so I don't hold out much hope.

Headaches post seizure I think. After the first tonic clonic he was really whacking his head (& in the weeks running up to it). Somewhere between the first & second we sussed out that head hitting seemed to be related to pain & after the second dosed up with painkillers for a couple of days (which helped). He also started hitting his head after the partial so I figure that triggered pain as well.

He did have migraines when he was much younger so interesting to read about that.

He also goes a very funny grey colour at times when we have suspicions about temporal lobe seizures - and went the same colour after the tonic clonics.

I'll ask about beta blockers etc as well.

kirinm Tue 02-Feb-16 15:23:19

Headaches after seizures are, I think, common. My head literally throbs. I don't know what others feel like but I describe my lead up to a seizure as my brain having difficulty in keeping up with all the things I'm trying to do and effectively crashing like a PC. It makes sense to me.

I find rushing around and stress triggers. I'm also sure intense exercise / breathlessness has some sort of effect but there isn't much info online about it.

Billthecat Tue 02-Feb-16 15:43:28

Oh your poor son. If he's hitting his head, he's in a lot of pain, isn't he? Try the ice and def chat to his doctor about preventing them, if it's at all possible. The drug I'm on is propranalol and works for me, but it has to be taken consistently. Coming off it has to be done very gradually due to the side effects. I forgot to collect my prescription once, and had a weekend without them - felt awful. Heart palpitations, nausea, headaches and generally felt so unwell I wanted to cry. If he will take something regularly without it upsetting him, I'd go for it if the doc suggests it. Otherwise, it might be a double edged sword....

Devilishpyjamas Tue 02-Feb-16 18:27:44

Gosh that sounds horrible sad

Does anyone feel nauseous with their seizures. Around the time ds1 started having what we thought might be temporal lobe seizutes he started with frequent nausea. It was put down as a drug side effect but now I'm wondering. The nausea stopped with low dose lorazepsm but is now coming back a bit. Since having the tonic clonics. I'm now wondering whether the nausea might be from some non-epileptic seizure activity.

Ds1 is too bloody conplex & although he understands a lot & can indicate yes/no it's hard to work out what he's feeling. He is holding one ear constantly as well.

LavenderRain Wed 03-Feb-16 20:28:03

Sorry your DS has suffered. My DC had her first seizure aged 22, out of nowhere, she was doing a degree at uni and was stressing over the essays etc (medical degree)
She then had another seizure a month later (both tonic clonic) and was then diagnosed with epilepsy after EEG and MRI and ECG
She had to stop driving for a year and takes daily medication,
She has never had another seizure,
After both seizures she had awful headaches and was very tired and 'out of it' for the next couple of days,

Devilishpyjamas Wed 03-Feb-16 21:45:20

It has been really helpful to hear everyone's experiences. It seems our hunch about the headaches is prob correct. Thank you for sharing. I really appreciate it.

I'll let you know what the outcome of Friday's appointment is.

Devilishpyjamas Sun 07-Feb-16 18:33:36

Well the update is that the specialist doesn't know whether the seizures are epileptic or not. Ds1 had his eyes shut & apparently they're usually open.

So he's discussing his case with colleagues & we're back in 4-6 weeks. Have been asked to video any seizures.

He's worried about epilim if not epilepsy because of the risk of bone marrow suppression. Ds1 would be very hard to take blood from as well.

Having tried to get a head circumference he has said even attempting an EEG again is pointless. It's not going to happen.

So ds1 complex as always.

Devilishpyjamas Sun 21-Feb-16 12:03:38

New update. Another seizure & it's looking as if we might get the dx now.

Devilishpyjamas Sun 21-Feb-16 22:25:11

And another. Two in one day. sad

Devilishpyjamas Mon 22-Feb-16 11:42:53

And a diagnosis. Epilepsy - probably focal onset.

Hey ho.

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