General advice :)

[dwilliams1]

Hello!

I have been having seizures often for the past two weeks. My grandad and uncle both have epilepsy but they are no longer around. I had some questions and queries, just as it is a few things that I am worried about and I wondered if anyone has any experience with it?

Firstly, I am a horse rider, I do a course where there is lots of horse riding, my whole life practically revolved around horses. I was just wondering if anyone here does ride and how they cope with their epilepsy while doing so? Obviously whilst I have been referred to a specialist, it is a big no on it. Which I am okay with!

Secondly, I have had seizures towards the end of class, but I have had aura like moments where I can feel something coming, which gives the teacher time to clear out the class. But what if they do not clear it out? I am just a bit worried about what others might think of it or do if it happens. I have anxiety in general, and adding to the 'what do I do if people find me like that' just makes me a tad worried.

Thirdly, I am a keen runner, I love to run early in the mornings before my lessons. Are there any support groups or things you would suggest for a runner with epilepsy or seizures?

So far, I have been having seizures often. I used to pass out, but I was alone, I would wake up feeling tired but never knew what was actually happening. At the time of writing this, I have had 3 periods of seizures where people have seen it happening. I have been referred to a specialist, but they are saying it might take 2/3 weeks!

Any help, advice, or past experiences would be great to know!

I look forward to reading your comments,

Daisy

[EpilepsyAction1 Partner Epilepsy Action]

Hi Daisy - It can be really helpful to share support and information so I hope you hear from others here.

It must be a worry that these seizures have started. And there must be a lot to think about while you wait for your appointment.

As you mention it may be best not to do activities that can put you at risk while you are waiting for your appointment. But we have some safety advice about sport and leisure activities including horse riding and running that you might find helpful: epilepsy.org.uk/info/daily-...

Its understandable that you feel anxious about having a seizure when others are around and getting the right help. It can really help to have a plan and think about what help you might need and how to explain what's happening to others in advance.

I'm not sure if school have put a support plan together for you but we have a toolkit and other information that might be helpful for school: epilepsy.org.uk/training/fo...

Managing other people's responses can feel a challenge. We have some information about telling others about epilepsy which may be helpful: epilepsy.org.uk/info/childr....

If people don't know about how to help someone when they have a seizure it can make them worry about how to respond. We have some first aid information (epilepsy.org.uk/info/firsta... ) and a first aid video ( learn.epilepsy.org.uk/what-... ) that you could share with people.

We also have booklets that explain epilepsy and first aid cards we can send from the Helpline if you need these.

We don't have any specific running groups but we have an active Facebook page which you might like to explore: facebook.com/epilepsyaction/

I'm also linking you to our information about diagnosing epilepsy. This explains what information can be helpful and what to expect at your appointment: epilepsy.org.uk/info/diagno...

I hope this information is useful for you. Please contact us at the Helpline if we can be of any more help: epilepsy.org.uk/info/suppor...

Regards

Mags

Epilepsy Helpline Team.

[dwilliams1 in reply to EpilepsyAction1]

Thank you so much for your response!

[LDAutie]

Hi @dwilliams1, I used to ride before I became physically disabled at 28 (now to overweight to ride due to being on over six weight gaining meds and being a wheelchair user with severe muscle weakness).I have had severe epilepsy since a baby/toddler.I am guessing I pssoibly may have had a different experience to you with riding-I’m non verbal autistic with mild intellectual disability as well so from age 10 I used to attend disabled friendly mainstream or riding for the disabled association (RDA is the term if you want to look up a RDA riding school near you) private riding sessions.

Two riding school staff woud be at my side (one on each side) in case I had a seizure or behavior and the beautiful 15.2hh skewbald cob I rode as an adult was both epilepsy and challenging behavior trained,she used to stop and stand there without lifting her feet if I was lying on the floor next to her waiting to come round.

I rode bareback as well or with a bareback pad, I was one of the few people allowed to ride fully bareback there because I was advanced in riding and I was being put forward for the paras and special olympics at one point but my life took quite a bad turn due to severe online bullying.

Not every RDA centre has an epilepsy trained horse though sadly,I mean Jasmine was my first and only ever experience of a horse being trained to this level so this is the only unfortunate thing, you coud I suppose ask for two volunteers to be at your side when you ride,but if your doing things like cross country it might be to impossible to do with support.

You coud always try RDA driving which you woud get an assistant with,there are quite a few schools all over the country who offer driving as well as riding.

Just a thought, but some mainstream riding schools (ones with a heck of a lot more money than ones I’ve rode at)have the motorised/robotic horses, these coud be an option for you to ride whilst your working out what’s going on,I know as a ex rider also though that it really isn’t the same, but they’re widely used now and it might be safer temporary option.

Don’t let epilepsy put you off riding, it just needs adapting for your needs and risks,there are ways and means of doing it.

If your into hacking for example,it might mean having to go hacking with close by helpers or at the worst-on a lead rein, I know it’s a pain when your intermediate or advanced,it just depends how bad your seizures coud be, you need to carry out a risk assessment really.

I’m sorry for the length of this post,it’s nice to speak to another rider online (well ex in my case) I haven’t for years.

Best wishes.