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Epilepsy, uni and living away from home

(17 Posts)
Jon1970 Sun 14-Apr-19 08:23:44

Hi, apologise for gatecrashing mumsnet but as a single parent I find this a great source of info and experience.

This week, my 18 year old had a seizure whilst we travelling in the car. She has been sensitive for a few years to bright sunlight strobing through trees as you drive, but had previously dismissed it as a 'funny turn'. This week was different - she clearly went into seizure for at least 2 mins and I had to stop the car and call an ambulance. I had never witnessed a seizure before and there was a point where I know that both myself and my youngest DD thought that we were losing her. [In hindsight we think she had another seizure 6 months ago, where she fell over and hit her head. This was during freshers week, so we put it down to alcohol, but she didn't have a hangover the following morning, which always seemed odd.]

The A and E tests (EEG,bloods) were normal but clearly this is something that will now absolutely need to be followed up with a neurologist.

Now that she is over the initial shock of what happened, she is quite understandably starting to think about the longer term implications. Firstly, we have to cancel her driving test, which is a real blow to her as she looking forward to having that freedom. But she is currently at uni, over 200 miles away. She is nervous about living away from home, in halls, in her own room, on her own. She is also questioning doing medicine as a career, as she thinks the seizure could also have been somewhat triggered by lack of sleep.

What I am really looking for is any experiences of having a child at uni, with epilepsy (I'm assuming that this is ultimately what will be diagnosed), and being able to tackle a demanding degree course whilst taking anti seizure meds? Basically I am wondering (as I think she is) whether a diagnosis of epilepsy would mean a wholesale rethink. It's crushing TBH, because she had worked so hard to get to this point. Many thanks

OP’s posts: |
NopeNi Sun 14-Apr-19 08:55:18

That sounds so scary for her and you thanks I don't personally know about this but I do know quite a lot about about universities. It could be worth re-posting this on the Higher Education board too?

One thing to do is contact the university and ask. They usually have dedicated disability teams who work out special adjustments, you could even call them anonymously if you wanted to at first.

From a quick look online, she won't be alone in studying medicine while having epilepsy and it shouldn't prevent her being a doctor. It might be harder for her if tiredness is a trigger but the main thing is for her to be open and honest, and get her medication figured out. It might also block her from following some career routes so again, ask the university.

Toddlerteaplease Sun 14-Apr-19 08:58:00

There is medication that will help stop the seizures. She will probably be ok.

JohnHunter Sun 14-Apr-19 12:05:59

She certainly doesn't need to make any big changes, such as re-thinking her career choice. Epilepsy covers a whole spectrum and it's hard to know now how much of a feature of life it's going to be. A lot of people with epilepsy have a very good response to medicine (when the right drug/dose has been worked out) and go for years without seizures.

Alcohol, tiredness, and dehydration are triggers so should be avoided if possible. If necessary, this would be taken into account by employers when she's working as a doctor further down the line - it certainly isn't a barrier to training or working in that field.

Obviously she should tell those around her (e.g. flatmates) about the diagnosis and make sure they've got some idea how to respond if she had a seizure. And she'll already have had advice about not driving, having showers instead of baths, not swimming alone, etc.

Mynamenotaccepted Sun 14-Apr-19 12:31:37

Don't know if this will help I know of a young girl who has epilepsy and her parents filmed her having a seizure and what to do to help her. When she started at university she showed all her new friends the
film what a brilliant idea.

HotChocolateLover Sun 14-Apr-19 12:36:33

I have epilepsy and it’s hard, I won’t sugar coat it. If she’s newly diagnosed she may want to consider deferring uni for a year until things settle down because seizure mess are strong and it may take a while for her to get used to them. She will also want to be somewhere familiar if she has a seizure and probably want some TLC from mum if she has one. I also get very embarrassed if I have a seizure in front of people so she may want things to be more under control so there’s less chance of it happening in front of new uni mates.

HotChocolateLover Sun 14-Apr-19 12:37:04

*seizure meds

tierraJ Mon 15-Apr-19 11:59:23

I have photosensitive Epilepsy & I don't drive, cycle or use a motorbike, it's just not safe as I have petit mal & tonic clonic seizures due to flickering light.
Your daughter will have to stop driving & must not cycle until she's seizure free.

My Epilepsy is not well controlled by my anti epileptics but now I'm trying a new drug.

If your daughter gets given anti epileptics make sure she asks if they are safe to use should she decide to have a baby.

The side effects of the anti epileptics may affect your daughter while she gets used to them.

There's no reason however for your daughter to not stay at uni & to have a good career.
I went to uni & was a Staff Nurse for 8 years, in all that time I only had 1 seizure at work.

Mental health problems ended my career not Epilepsy.
Even now, I work as a healthcare assistant & as I said I'm trying a new Epilepsy drug, I'm having to take time off due to the side effects & work are being really supportive.

Make sure your daughter gets an appointment with a neurologist & hopefully there may be a local Epilepsy nurse specialist?

It is scary having epilepsy but with the right support everything will be fine.

Jon1970 Tue 16-Apr-19 17:27:41

Many thanks to all who replied, it's good to get some first hand insights. She went to see the GP yesterday and we are waiting for an appointment at 'first fit' clinic.

OP’s posts: |
FraggleRocking Tue 16-Apr-19 17:48:18

I would echo HotChocolateLover.
Whilst epilepsy doesn’t necessarily stop you from your pursuits in the long run, in the early stages, adjusting to meds etc, it can be a real struggle. All the best to you daughter.

uggmum Thu 18-Apr-19 09:06:47

My dd started at uni in 2017. A few months in she started having seizures. This resulted in a few emergency trips to hospital. It was very worrying.
She was diagnosed with epilepsy and was put on medication.
This was a huge shock. Even on medication she had some very violent seizures and hospital admissions.
I worry all the time. She's an hour and a half away. She is in Year 2 and living in halls and she is doing the same in year 3. This gives piece of mind as there is security on site and people around all the time.
She really struggled with the diagnosis. She won't tell anyone. She won't call it by it's name and calls it 'that thing'
She won't tell uni.
She managed to get to 10 mths fit free but has had a couple in the last 6 mths.
I don't think you ever stop worrying.

Jon1970 Thu 18-Apr-19 09:31:57

To Uggmum, thanks for posting. I can completely understand why you must worry all the time. It sounds like a very similar situation. My daughter is concerned that if she tells people (other students), they will think "oh, too much effort, there are plenty of other friends to kick around with...". Nevertheless, I'm trying to get her to be open about it. One of my biggest concerns is whether she will be able to cope with uni, if she is on medication, but you can pretty easily find lots of examples on line of people trying lots of different meds and never finding one that doesn't have significant side effects. It will be virtually impossible to complete a 6 year medicine degree if she is completely whacked all of the time. Fees like a long road ahead, with likely no end. Not wishing to be overly negative.....but that's how it feels

OP’s posts: |
snitchesgetcandy Thu 18-Apr-19 09:47:43

So sorry your daughter is going through this. I don’t have epilepsy but in my first year of uni lived with a girl who did and had regular fits (at least a couple a month). She managed her work fine and the university where great giving her extensions etc she graduated just fine. We were very different types of people so didn’t socialise much outside of the flat but she had plenty of friends and was always involved in something.
One thing I would say is for your daughter to be honest with her flat mates, the only issue ever caused was the first time she had a fit in the flat as we had no idea she was epileptic as well as no idea what to do, we called an ambulance which she later explained wasn’t needed unless her fit was longer than 7 minutes or she was having one fit after another etc as well as what to do while it was happening and after. It’d would’ve been a lot calmer for everyone if we’d known this in advance as well as saving the embarrassment of the entire building wanting to know why an ambulance was here and trying to come gawp.
Hopefully your daughter has some supportive friends and flat mates and I think she will be just fine in that aspect

DrWhy Thu 18-Apr-19 10:07:05

I had a friend at uni who was epileptic, it was so well controlled that she hadn’t had a fit in a couple of years - she told us becuase we met through Scuba diving and you have to declare it on the medical and be fit free for a year. She did have one fit when we were out in the pub one evening - we knew what to do and basically her friends just cleared people away to keep her private and safe and then her best friend took her home and stayed with her for the night. She was mainly upset as it meant no more diving for at least a year. If she already has a friendship group, especially medics they’ll probably take it totally in their stride.

uggmum Thu 18-Apr-19 17:31:43

I would recommend a medical alert bracelet. They have some really trendy ones online. I also have find my friends on her phone and mine so I can find her location if I need too.

My dd is managing her degree well. She is doing biomedical science.

When she has a seizure she is very very tired for a few days.

She does has a neurologist and an epilepsy nurse which is a great source of support. As she was diagnosed in her uni town she can see them regularly.

We are unsure what her triggers are. I think she is light sensitive. Tiredness and being rundown also has resulted in seizures.

Feel free to ask me anything by personal message if required

Jon1970 Sat 27-Apr-19 20:47:59

An update: took my daughter to see the neurologist this morning and he has diagnosed Juvenile Myoclonic Epilepsy, which unfortunately fitted her history in pretty much textbook fashion. The combination of different seizure types and age of onset. We are back in on a Monday for an MRI just to double check that there is nothing else going on, and will do an EEG as soon as possible. It sounds like he will be recommending a drug called Keppra, which will hopefully keep a lid on this condition without any unpleasant side effects. Thanks again for the info, which was very useful on the run up to seeing the neurologist. At least now we have some more definitive info to start sharing with the university and try to put best feet forward.

OP’s posts: |
FraggleRocking Sat 27-Apr-19 21:20:23

I wondered if you’d pop back. I’m sure it’ll be mixed emotions getting the diagnosis and absorbing new information. I was diagnosed with JME as a teen and I’ve been on Keppra in the past. Obviously everyone’s experience is different but I can certainly agree that in terms of side effects it’s the best drug I’ve had.

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