Epilepsy support on the Camino Frances

[dirtydon123]

I have been planning my Camino this July for months now, departing St Jean PdP alone on July 4 and returning to the US from Santiago on August 9. However, a generalized seizure weeks ago is threatening my trip. I have had epilepsy for many years but was weaned off my medication due to not having a seizure for almost 3 years while medicated. Now I am back on my medication and my doctor recommends that I have someone who knows my condition to walk with. Would there be significant amounts of time that I could go without seeing anyone else? Also, would the "Camino Families" I have heard so much about provide a sufficient supportive community to help me in case of a seizure? Have you heard of people with epilepsy walking the Camino Frances without someone they knew beforehand?

There isn't high risk for me as almost all seizures of mine have been petit mal but I am still taking precautions such as wearing a medical ID and bringing other emergency information/medication. Any advice or insight into how much help other hikers would usually be willing to provide is greatly appreciated. Thank you for your help!

 

[SabsP]

I have been planning my Camino this July for months now, departing St Jean PdP alone on July 4 and returning to the US from Santiago on August 9. However, a generalized seizure weeks ago is threatening my trip. I have had epilepsy for many years but was weaned off my medication due to not having a seizure for almost 3 years while medicated. Now I am back on my medication and my doctor recommends that I have someone who knows my condition to walk with. Would there be significant amounts of time that I could go without seeing anyone else? Also, would the "Camino Families" I have heard so much about provide a sufficient supportive community to help me in case of a seizure? Have you heard of people with epilepsy walking the Camino Frances without someone they knew beforehand?

There isn't high risk for me as almost all seizures of mine have been petit mal but I am still taking precautions such as wearing a medical ID and bringing other emergency information/medication. Any advice or insight into how much help other hikers would usually be willing to provide is greatly appreciated. Thank you for your help!

First of all : this is not medical advice just some personal ideas. I know how some members can get aggrevated when we give some advice regarding health matters. Of course talk to you doctor/ GP for this.

Hi Don, yes I know someone who has epilepsy and walked the Frances. He is fluent in Spanish though which makes it easier to communicate with medical staff when needed. And he also had a very minor form, only had some small seizures 6 years before his first Camino.
I understand your doctor's concern.

Now, July is a busy month and you will certainly encounter lots of people. And yes there is a great possibility you will meet kind people and they will become a subsitute " Camino family " but the opposite might be true too.
Also take into consideration that not everyone will understand what epilepsy is and might panick when they hear of this, even though there is nothing to be afraid of!

Your general precautions , like the bracelet, are good.
Also take into account that Camino daily life can be tiring : long days walking, sweating ( important when taking meds ...fluids!! ) and sometimes noise at night ( lack of sleep...also not good for epilespy ).
And maybe farfetched : but ask a lower bed in the bunk , in the small chance of a grand seizure there is the possibility of falling.

Is there someone of your family/ friends who would like to walk with you? He or she could join you and sharing a private room would not break the bank more than a bedbunk in a common room.

I hope you get some more answers! Good luck!!

 

[Bradypus]

And maybe farfetched : but ask a lower bed in the bunk , in the small chance of a grand seizure there is the possibility of falling.

Not farfetched at all. My brother had epilepsy and chose a top bunk at a youth camp. In the middle of the night he crashed to the floor in a grand seizure. Surprisingly limited injuries in the circumstances but more by good luck than by design.

 

[scruffy1]

I have been envolved in the education of SE children with epilepsy most of my adult life and am not terribly disturbed when I witness a seizure since I know how to react. Most people do not, the event appears frightening, dangerous, and often the wrong sort of asisstence is offered and even coerced. YOU know your situation, be aware of any tell-tale first warning feelings or signs, all sorts of epilepsy bring on seizures steming from all sorts of stimuli - does heat or excessive humidity/aridity play a factor; during your sleep; perhaps stress or great exertion; a physical trigger, or an out of the blue shot-happens sort of thing? You know best what to avoid. I would also support and recommend your ID idea but wear a rather obvious "Medical Alert" badge not a bracelet or a neclace which might go un-noticed, one on your person another on your backpack. Most albergues have a sign on the bulletin board concerning nearest medical asisstence - may you never need it. The pharmacist in almost any pharamcy is t-h-e person to go to since they usually are very fluent in English should you go that way or should a fellow caminante seek help. I have had but few hestitations taking "my" kids on long walks in all sorts of weather, but we never walked for a month! Buen Camino and may your anxieties before walking be far greater than those on the Camino.

 

[natefaith]

Hola Don and welcome to the Forum! Sorry to hear you've been going through some physical stress and are worried about your upcoming trip.

Do you have seizures, then, when you're on your medication?

I don't know much about epilepsy and what your needs might be, but I think if you can think through some of these scenarios and see how you'll navigate them you may be better prepared for your Camino:

- Camino Families can form for sure, as you've read about on the Forum. One thing to keep in mind is that since people are walking at their own pace some will walk ahead to the next town if they have energy, or some might stay behind to keep exploring a town they like (or they might stay behind to rest, if they get injured). If you need more support than this kind of fluid community will provide, it may be better to invite someone from home along to walk with you so that you're not anxious about separating from your new Camino friends and not having the support you need. Most people will be very supportive if you're in need, but it may be hard for them to always be available to walk with you or give you constant company (I'm not sure if you're saying you need that, though?)

- In July and August, as @SabineP said, there should be plenty of people ahead and behind you on the trail (even if you can't always see them), even if you're not always walking with someone. Will something like that be OK?

- When you have a seizure, do you need an ambulance? At times the trail can be quite remote, so an ambulance could take a long time to arrive (to give you a real scenario, we saw a motorcycle crash once about 15 minutes away from Santiago, and the ambulance took about 30 minutes to arrive). Would this kind of medical response be OK for your condition?

Take care and may you have all the wisdom you need to make a great decision (whether you come in July or come later if that ends up being the best for you!). Cheering you on!
Faith

 

[clearskiescamino]

Hi Don.
Welcome to the forum.
I also have epilepsy and don't take generalised seizures, rather partial seizures. I act like I am in a trance and am very confused when it subsides. Luckily my meds are working and I haven't had a seizure in quite a while. I wear a bracelet and carry ID with me so medical people know I have the condition IF I have an episode.
I had a narrow escape in 2015 when I had an event while crossing a road walking into Astorga. Luckily a fellow pilgrim saw me acting strange and stayed with me until I became aware of my surroundings.
Stay strong, you will meet plenty of helpful people who will know what to do IF you take a seizure.

 

[FamPed]

I have been planning my Camino this July for months now, departing St Jean PdP alone on July 4 and returning to the US from Santiago on August 9. However..

Don, I´ll hope everything will turn out just fine. Buen Camino on your upcoming pilgrimmage/adventure.