Epilepsy at Uni, living away from home

[Jon1970]

[Originally posted on health board but following advice to repost here]
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 were 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

Hi, didn't want to read and run, but can I signpost you to epilepsy action? They have local meet-ups and I've found it really helpful talking to other parents of D.C. with epilepsy.(my dd is only 13, so we've got a few years to go yet).

www.epilepsy.org.uk

Unis do offer a lot of support to disabled students. There will be a disability team at her uni that she could get in touch with. The uni will be able to let you know what advice and support they can offer and how they would be able to help.

Many unis will also allow a leave of absence during a degree- for a term or a whole year. This may allow her time to get her epilepsy more under control and understand how she may be able to manage it better at uni? It might not be exactly what she wants to do right now, but could be a good option for the long term.

Do you have any local unis that would be commutable? It may be possible for her to transfer into second year at a different uni if she doesn't feel able to live away from home anymore. At least then her work this year wouldn't have gone to waste?

The university will have dealt with this before, her personal tutor can advise as well and the accessibility centre. Yes tiredness is a trigger (dd has blackouts though not officially epilepsy) so perhaps medicine as a career is a consideration but don't let her make a knee jerk reaction. Transfer to a university near home is another thought if that's the principal problem. Only a medical professional can tell you if it's epilepsy, expect an mri to be ordered - there's other reasons to black out remember

We've definitely had students with epilepsy completing the medicine course and going on to work as junior doctors. I didn't know them particularly well, do I don't know what they're doing/where they're working now.

We did have quite a big discussion a while ago about the common conditions medical graduates all have to have seen during their course. They were required to have been involved in the management of an acute epileptic seizure. However, epilepsy is generally so well controlled now that it's very rare to see someone admitted to hospital with an acute seizure. Although it might take time initially to get a diagnosis and have treatment optimized, if she does turn out to have epilepsy she should expect to be able to lead a normal life.

Epilepsy won't automatically rule out driving depending on how well controlled it is.

Hi epilepsy will not be automatically diagnosed after just witnessed seizure. Everyone has there own seizure threshold some are higher than others.

Following a seizure you are not allowed to drive for a year and you should inform the DVLA. However after 9 months free of seizures you can re apply for a drivers license (presume same rules apply to provisional license) so that you are ready with a license as soon as you reach the 12 month seizure free stage.

In the meantime, apply for a bus pass. A companion pass will allow someone else to travel for free with your daughter

Also apply for disabled rail card. They are not free but its a small fee , gives third off travel for card holder and carer.

If medications are prescribed be sure to apply for free prescriptions. The card will cover all medicine prescribed not just those relating to epilepsy.

Work out the triggers. Fatigue, head cold, stress light strobing through trees are all common ones. For me weather can be a factor, I can predict a thunder storm (there’s a talent 😉) smells can trigger some people. Avoid St Johns wort and rosemary.

Epilepsy Action can advise on safety products such as special mattress or pillow that can detect seizure activity. If there is a land line in the halls of residence an aid call pendant could be used . They are not just for old people. i’ve had mine over 10 years.

People with epilepsy can get a degree and career in medicine its just that much harder to do.

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

Hello OP. I am epileptic. Yes seizures can be caused by sleep deprivation in some cases and for myself that’s one of the factors that increases the risk of seizures along with alcohol intake, and stress as well as if I’ve had a tummy bug and not been able to keep my medication down

In regards to the medication, I take tablets morning and night. I’ve gone from 2/3 seizures a day to maybe 1/2 a year. I work full time. (Although term time only)

Hi OP, I’m epileptic and at uni. My advice would be to make sure that your daughter speaks to Wellbeing and gets support in place, works out her triggers (stress, lack of sleep, alcohol are mine) and if she’s doing medicine speak to OH who may be able to stop her doing night shifts. She also needs to ensure her flatmates know and I’d advise showers not baths if possible. She may wish to take a year out if she is doing medicine as doing nursing sent my epilepsy nuts and I had to withdraw; I am now studying in a non medical field. Also medication can take awhile to get right but it works best if taken at the same time everyday
Best wishes to your daughter 😊 I’m now three years seizure free and driving so it is possible

Best wishes to your daughter. It must be a real shock and worry.

Not epilepsy, but DD is a med student who had health issues in her first year. First priority is to fill out the extenuating circumstances form. You don’t know what might be needed, so it is best to flag up early that there may be problems.

She will almost certainly need to go though occupational health and the Fitness to Practice process, especially if she has placements. She should ask her tutor and/or the medical schools welfare department. The Occupational Health comes first. In DD’s case it was effectively attaching her doctors report (worth flagging up to her doctors that this may be needed) where he outlined restrictions on what she could do. Then an examination/interview which effectively confirmed her doctors view. Which then went to Fitness to Practice.

Needless to say paperwork did not join up smoothly so she got reprimanded for missing placements the Fitness to Practice Panel told her she could not attend. I would therefore recommend that she has an early conversation with her tutor, if she has one, or the medical schools welfare, to discuss options, in part to ensure she has an advocate within the systemshould she need it.

I would also suggest seeing if you can find a medic with epilepsy who would mentor. Perhaps her doctors know someone, or an Epilepsy Society, or the BMA Doctors with Disability. Someone who has been through the system and can encourage and suggest solutions.

Look also at triggers. If she needs quieter accommodation,! for the next term, perhaps she might advertise on senior years medic Facebook pages in case anyone would let her take up a room when they are on placements. Or speak to the accommodation office. If she gets through next term, taking a year out to stabilise will be easier, and she has the summer to decide.

I hope it goes well.