Traveling With Epilepsy!

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Now, travelling with epilepsy: heaps of us, if not the majority of our listeners, do value travelling! It can be one of the most enjoyable and educational things to do in life. But, what happens when you have an epilepsy? How do you prepare? What do you do if you have a seizure overseas? All of these things can be worrisome for the person with the epilepsy - and for their family or caregivers! So, today we cover all of these things with star epileptologist Manuel Toledo who shares his experiences with us.

01:28 Manuel Toledo
I'm a neurologist, epileptologist in Barcelona with a large experience treating patients with epilepsy and I've been involved in different fields of epilepsy (I think almost all the fields!) and it's something that I have a big interest [in]; just to treating patients and [improving their] quality of life. So, that's something that I will remark from myself, like, pretty much in the last few years, I pretty much focused on that.

01:59 Torie Robinson
I like that you say “quality of life” because that's the important bit, I think, when seeing a clinician, it’s about quality of life, not just about drugs or minimising seizures or whatever; it's about how they feel and how their life is, right?

02:13 Manuel Toledo
Sure. Basically, when you're an epileptologist… I don't expect myself to be treating patients that they just take medications and they remain seizure free and they don't have to… any further problems across their lives. Even when we control seizures, they need further information and we need to be there. And it's not about seizures, it's about quality of life; that means: pregnancies, that means mood, family, many things… that it's important to be supporting or giving some advice to patients.

02:48 Torie Robinson
Thank you for saying that. So, we were nattering about this before we started, but you mentioned… so I asked you: “What's the most challenging thing that you come across or that you… what you find to be the most challenging topic with epilepsy?”. And you mentioned their leisure and things like travelling. Tell us about that.

03:09 Manuel Toledo
Well, yes, we were talking about that and then… many of the questions that I have to my patients are relatively easy for me, like “Doctor, can I drink, doctor, should I sleep, how many hours?” - those for me, it's like, I have, like, an automatic response and [it’s] not easy, but when they say leisure “I like to travel [or do] some sports” - but travel is a big issue because I think the most common hobby of everyone around the world is travelling. Nowadays everyone travels and it's something that when they come to me (my patients and my families), it's always "Oooo, let's see what can I recommend [to] them!".

03:51 Torie Robinson

Do you find often that the people with the epilepsy are often quite nervous? And if you see their parents or carers as well, they're often quite nervous? How does it work?

04:01 Manuel Toledo

Of course. Overall, think when patients become teenagers and they want to make their first travel outside the borders of the UK or Spain, maybe to Paris; it's when parents come to me blank and say “Doctor, my son or my daughter wants to travel abroad…

04:25 Torie Robinson
Hmm, on their own!

04:25 Manuel Toledo
What do we do?! Yeah! And they are going to be with friends…mmmm [I’ll have] no control for first time, medications, sleep times!”, and so on. And the big question for me is that I guess that if you travel from London to Berlin or to Paris it’s not a big issue. But the problem is when you move into Congo or to countries where I don't really manage what is the health system status in those countries or where is even the medications that they have in those countries - that, that's when, when the big question for me [is]: what to do if my relative has a seizure in whatever country that I don't know nothing [about] even sometimes the name!

05:14 Torie Robinson
Yeah, and actually there even some countries they don't have a name for epilepsy, right? Or they don't… or the drugs might be something completely different, or the drugs might not be available!

05:24 Manuel Toledo
Yes, yes, yes, I mean, if you move to Africa, to South America, I will say that according to my experience from the 25 anti-seizure medications that we have available nowadays in the world, maybe you get 2 or 3 of them and that's it. And yeah, and that's a big issue.

05:47 Torie Robinson
And another issue, do you find… So, when I go travelling, I'm really ordered, okay, I’m like “boom, boom, boom, boom”; here's my drugs, I take loads more with me than I think I probably need, and in long-haul, I worry about sleep a lot. Well, I don't worry now, because I know how to deal with it. But, like, for instance, I'll take a drug to make me sleep if I'm travelling to Australia or somewhere else long haul. If I don't do that, I will be inviting at least 1 seizure. So, do you talk about sleeping patterns and managing, like, time differences with people? Is that something to consider?

06:22 Manuel Toledo
Yes, yes, that's basic and it's something that even I know many of the countries of the world and the time difference because my patients say “I'm going to travel to Australia.” and then I have to ask them “What part of Australia?”, you know?!

06:34 Torie Robinson
Right! Hahaha!

06:34 Manuel Toledo
…Hahaha! Or “The US, okay, US, what do you mean, East or West Coast?

06:39 Torie Robinson
Yep!

06:39 Manuel Toledo
Because I think the strategy to face that is different! But in general, my recommendation is: sleep more than you used to.

06:50 Torie Robinson
Mm-hmm.

06:50 Manuel Toledo
Take 1 day extra in your travel to rest and sleep. Just don't land on the country and just drive! Just stay 1 night wherever you land and take your medication initially according to your pattern in your country of origin and then you adjust, little by little, like 2 hours every day, and then usually in 2 or 3 days you can be adjusted. And in case of hesitation I always recommend to take extra.

07:26 Torie Robinson
Extra dosage?

07:28 Manuel Toledo
I mean, yeah, if you hesitate… don't run out of medication, just take a little bit extra. So, take your medication in advance if you need [to], because we don't want you to be in the low doses. So, extra doses of any anti-seizure medication usually can lead you to have some more somnolence or dizziness, but not, like, a severe adverse event, so, and however, running out of medication, have the consequence of a… may have the consequence of a seizure. So, I always recommend: if you hesitate where to take, when to take it, advance a little bit. So, a little bit of extra medication is not that bad.

08:11 Torie Robinson
You made me think of a time I was like, don't know what I was thinking. Or I wasn't thinking. Ages ago, like 8 years ago, I went to Perth in Australia, which at the time wasn't too far away from us in time (it was only 7 hours/7- 8 hours at the time) but I was so excited. Excitement can bring on seizures for me. And then, also, not enough sleep, especially on the way back, I couldn't sleep at all. And I stopped in Qatar and I [had] basically gone about 20 hours without sleep. And then, it was the following day; I had a really bad tonic-clonic seizure, really bad. It was my most recent one actually, because this taught me: don't be an idiot. So now I'm going to Canada in January (I can't wait for the epilepsy conference) and I've got an extra day at the beginning and an extra day at the end where I can recover and prepare. So, basically chill out each day. And I'm so glad I do that now because it is really preventing me from having, it is preventing me from having seizures. So yeah, I just agree completely with what you said.

09:13 Manuel Toledo
Yeah, an extra day, I think it's for your safety, for your wellbeing. It's an extra day. It's very important. Sometimes I (depending on each one [(person)], I help with some kind of hypnotic meds, you know, natural remedies…melatonin

09:35 Torie Robinson 
Oh yes, of course, yes!

09:37 Manuel Toledo
…you know, Valeriana [(Valerian )], which is like...…herb remedies to have a longer sleep or to [enter] deep sleep to prevent seizures. Whatever strategy is helpful and it's very, very important.

09:55 Torie Robinson
And it's not just about sleep, is it? Sometimes, I think it's like calming down, just chilling, preparing for when you are actually travelling so it's as, you know, as smooth as possible. And yeah… ‘cause you can have as much sleep as you want, but if you're stressed, that could be another seizure trigger.

10:12 Manuel Toledo
Yeah, yeah, take your time. That's a recommendation for everyone, but we have to assume that… you know, when… I travel quite often and I place myself before travelling in the worst-case scenario. 

10:26 Torie Robinson
Yes, same!

10:27 Manuel Toledo
“I'm going to be delayed. I'm going to miss my flight. My suitcase isn’t going to arrive on time.! Because I put myself in that scenario in advance… things usually don't go that bad and I say “Well, you know, it wasn't that bad. It was just a delay, not that bad. I got my suitcase, you know!” It's like every time we travel and it's something that we like very much, and particularly if you have epilepsy and you need to rest and so on: don't get stressed, don't get upset, try to calm down, and assume that leisure time you have, you are not clever if you are not having fun, you know, if you when you travel that's, that's what I think!

11:12 Torie Robinson
Thank you! And that's the important thing I think. So, say if somebody speaks to you about “Okay I want to go and travel to the other side of the world” and you might feel “Oh god, I don't know what to say - I… like… I'm yes I want you to be able to travel but okay you need to prepare” - you don't want to hold them back right?

11:29 Manuel Toledo
Yeah, yeah, yeah, sure, sure, sure. Yeah, it's very important. I mean, wherever you go, it's really exciting for every one of us. Probably because you travelled last month to Mallorca is because we meet each other, you know?! And yeah, it's travelling and you get great experience and it's pretty good for our brain/our mind to see different cultures and in the epilepsy world to going into the pro-doctoral; I have learned a lot just by travelling and sharing experiences from different places around the world, and that’s, yeah.

12:06 Torie Robinson
I think it's the best form of education…

12:06Manuel Toledo
Yeah.

12:06 Torie Robinson
…ever is travelling. Just a quick one: what would you say for people who are worried about things like insurance or being in a country where if they do become unwell, it may cost them an absolute fortune mentioning no names?

12:24 Manuel Toledo
Well, it's something very important. I think that no one assumes that the things can go wrong until they go wrong! But in the case you have epilepsy (or whatever… or any other chronic disease), you have to ask before you go! And it's not all the insurance, but what is the healthcare system in the country - which is important because you may assume that in, I don't know, in South America, you have very excellent hospitals, you know, but they can be extremely expensive if you move down there.

13:08 Torie Robinson 
And North America as well, I think.

13:09 Manuel Toledo
Yeah, in North America; we are not going to talk about that… if something goes wrong there and you have to be admitted into the hospital just for taking 1 medication that will be, probably, the cost of half of the budget of your life. It's very bad. So, the insurances are basic and important and then if you have to shorten a little bit the days of your travel or whatever, make it. Otherwise, you can have a very tough time at that time.

13:40 Torie Robinson
Brilliant tips. Thank you so much, Manuel. It's brilliant. So: travelling is amazing and really important for your quality of life and educating yourself and contradicting yourself, but also, we've got to play it safe as well, right?

13:55  Manuel Toledo
Yes, very good. And I need your feedback for you and my patients to see what their experiences travelling and what deprivations they take and what they do for me to give recommendations to the next ones trying to travel around the world

14:15 Torie Robinson
Ah, okay, brilliant! So, for people listening or viewing, please contact us with tips or… and, also things that haven't worked, I think as well. 

14:23 Manuel Toledo
For sure.

14:23 Torie Robinson
And also, if you've made any “mistakes” or haven't done something and you're like “I feel like an idiot, I should have done that” or, you know, or “I wish that I'd had a certain care in this country, but it wasn't what I expected”. That would be really useful too!

14:40 Manuel Toledo
Very useful. And say the country, say the country, you know, that's important for me when… because I have patients that go [to] Burkina Faso; I don't know what is the health system there, what to do if someone had an experience, good or bad, in Burkina Faso, please tell us.

14:58 Torie Robinson
Yeah!

14:58 Manuel Toledo
That's the way for me to recommend [to] my patients what to do if they like to travel over there.

15:03 Torie Robinson
If you're a clinician, if you have an interest, maybe, in helping us form a network of clinicians, globally, of people that with an epilepsy who… that they could contact in a certain country, please let us know, right? Cause that would be… this was your idea, Manuel.

15:19 Manuel Toledo
Yeah.

15:19 Torie Robinson
I think it's an amazing idea.

15:20 Manuel Toledo
Yeah.

15:20 Torie Robinson
Because just knowing we have somebody to contact in an emergency situation (or, if we just need someone to talk to, because let's face it, epilepsy is more than seizures, right), it would be amazing.

15:32 Manuel Toledo
Thank you, Torie!

15:33 Torie Robinson
Thank you so much to Manuel for being so candid on his thoughts on travelling when you have an epilepsy, seeing things also from the perspectives of loved ones as well as the people with the epilepsy, and for the cool idea about an international network of people who can help those travelling if they have an epilepsy! 

Check out all of our Epilepsy Sparks Insights episodes on YouTube, Spotify, Apple Podcasts, Amazon Music, or your favourite podcast provider.

Featuring Manuel Toledo. Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.

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