Epilepsy, riding bikes and bike packing.

[Loki]

Hey forum dwellers, it has been some time since I last posted here, suffice to say I am having a pretty crap time of late. After popping a disc in my back I am currently I am on the cusp of being diagnosed with Epilepsy, I am presently off work long term sick, some how my head is not going to dark places but is actually trying to work the problem and being positive and trying to look past the possible diagnosis outcomes and looking forward to life and how I can still do the stuff I love doing, does anyone out there have a similar issue if so how do you live with it, what do you do, safeguards to minimise risk. Thanks in advance.

[faustus]

Sorry to all hear that - I can't help personally, but from what I've seen on Instagram I think Matt Page of this parish might be able to share his experiences. He seems to get out a great deal so might be able to offer some insight into continuing with doing the things you love. Sounds like you have the right mindset already, which must count for a lot.

[Ferretdiver]

Likewise, sorry to hear about your diagnosis. I have medical issue but not comparable to yours. I contracted covid start of 2021 & ended up in hospital. Previously 12 stone, fit & healthy but came out with diabetes, which resolved but then came back. It presented a few problems, which I had to work at to overcome. I remember feeling quite low for a while after diagnosis, but now very positive in my attitude.

My wife was concerned about me out on my adventures alone, so to mitigate some risk, I purchased a Garmin Inreach Satellite tracker, so that she could monitor/track me, should something happen, doesn’t prevent the dangers but helps with the worry side of things for her.

I also try & ride with others but this is not always that easy to do. I think you have a good positive attitude, that certainly helps with maintaining mental well-being & keeping one on track so to speak.

I wish you all the best.

Ian

[Bearbonesnorm]

Sounds like you have the right mindset already, which must count for a lot.

Just thought the same.

Kind of related but perhaps doesn't really help. Many years ago I was tested for various things including epilepsy following what I can best describe as a 'blackout' while riding along the M62 at considerably more than the allocated speed limit. The tests were inconclusive but over the years I've learnt to limit those situations where a repeat (it has happened since) could end badly for me or someone else. I suppose what I'm trying to say is, try not to stop doing things, just try and 'manage' it as best you can ... see, no help.

[ton]

hello Loki, my wife has a serious epilepsy problem. she has been in hospital many times with it after serious seizures. she i now on a set of meds that are working.
all through her problems she has kept cycling. we cycle most days, and spend holidays cycle touring.
so if you have a good mindset and a good meds program you can keep on doing what you love no problem.

good luck getting it sorted mate.

[In Reverse]

Hi Loki

A former Mrs Reverse had an epilepsy diagnosis in her twenties. It took a year or two for the docs to find the perfect medication and dosage (during which time her seizures were reduced to milder and more occasional night-time episodes) but once the meds were sorted she was fine. She's had her driving licence back for at least 10 years now and other than taking the meds she's completed unaffected - she's travelled solo around Central and South America in the last year. I also have a colleague with epilepsy which I'd never have known if she hadn't told me - she drives etc. and leads a normal life. Both these people take Tegretol if that has any relevance to your situation.

Obviously people will have different experiences but from what I've seen it's somethign to be aware of and respect but not to fear. Good luck with everything.

[Loki]

Thanks for all the comments and advice all, it is really appreciated, I am glad it shouldn’t affect life too seriously once managed, seizures are short but can be brutal, thankfully I am fully aware when they to occur, going to look into an incident tracker for solo rides.

[barney]

Hi Loki, I too have been diagnosed with epilepsy, I'm now 53.

I went through a phase of losing confidence over all sorts of issues including should I ride alone or is it fair to ride with others etc.

I've been bike-packing for over 10 years now and reckon I have a good balance and management. I make sure I always take my meds and stick to what works for me (obviously everyone is different). Having a Spot tracker helps as well as it gives my wife a bit of peace of mind as well as does being open with people I ride with.

One thing to remember is that a key contributory factor to seizures can be stress, my doctor once told me that from his perspective bike-packing is a perfect de-stressing tool.

I'll never proclaim to be an elite rider, I'm definitely more of a plodder but I've never let it hold me back.

Happy to have an off-line chat if you want mate.