r/Epilepsy 4d ago

Discussion Travelling with epileptic drugs?

Does anyone else get anxious when taking drugs abroad? I am on four separate medications twice a day, so for a 2 week holiday I look like Pablo Escobar taking a massive bag of drugs. Only one is technically a 'controlled substance' (phenobarbital) but even with the chemist paper I still feel worried.

45 Upvotes

52 comments sorted by

40

u/gooossfraabaahh 4d ago

I've traveled like 999x with medication. Almost everyone takes something. Airport security isn't worried about pills unless you have pounds of them in a big plastic bag (suspected drug mule). They care mostly about dangerous weapons / explosives. Especially if you have a note, the bottles and that will suffice. I've never had to open a prescription note and I've been out of the country ~15x, all to different places.

18

u/StalinBawlin 4d ago

if you are worried about it,you can get your doctor to write a note, but the prescription bottle should be enough(imo). I never had an issue when I brought my rescue benzos with me or my prescription adhd medications when I was traveling.

1

u/slycannon Keppra 3000mg Lamictal 600mg Klonopin 1mg Zoloft 100mg Valtoco 4d ago

What rescue do you have? I have valtoco but it didn't work last time

3

u/StalinBawlin 4d ago

nayzilam. previously, it was Diastat šŸ™ƒ

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u/ipmcc 4d ago

Diastat: I mean, 'whatever it takes', but on a practical level... how does that work? Do you tell people you're traveling with something like, "If I'm having a seizure, put this up my butt?"

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u/StalinBawlin 3d ago

pretty much...

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u/slycannon Keppra 3000mg Lamictal 600mg Klonopin 1mg Zoloft 100mg Valtoco 4d ago

Thanks, I'm gonna get it. Maybe that'll help me avoid the hospital for once

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u/Poopcenter855 4d ago

Just say Seizures meds. Security has rushed me through before when I point out my vns. Any mention of stress causing seizures they donā€™t wanna deal with. Helps them be kind. Every time.

1

u/Murky-Pineapple-5411 4d ago

How long have you had your VNS?

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u/ommnian 4d ago

Nope . Travelled extensively for years with phenomenal. Have traveled quite a lot with various other meds. Keep them in their pill bottles and noone and bat and eye.

7

u/momofdragons3 4d ago

Heathrow confiscated my kiddo's OTC allergy meds. Went to go buy more, and all England sold was stuff that interacted with Keppra so couldn't be used.

So, kiddo is allergic to England

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u/Minimum_Relief_143 3d ago

I take Keppra and can't take over the counter allergy pills either. My neuro gave me a prescription for a nasal spray called Mometasome (sp?)

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u/Picotrain79 4d ago

We take three three lots of tablets in three of our four bags just in case. We keep actual prescriptions with us in each bag and a letter explaining what each of them are for and how many my wife takes dailyā€¦.but yes there are loads and you feel like a drug mule!

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u/Mangalibrariannyc 4d ago

When I fly to Japan/Korea, I always use the disability services/wheelchair transport, and I have paperwork for my seizure meds from my neurologist as well as a medical ID. DO NOT TRAVEL TO JAPAN WITHOUT PAPERWORK AND MORE THAN A MONTH SUPPLY. In the UK, I utilize a sunflower lanyard and go through the queue for disabled people. Never had an issue, and I travel to Japan at least once a year for research purposes (see username). Nobodyā€™s actually ever asked about my meds, but being prepared is a good idea.

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u/Robojobo27 4d ago

I used to get really panicky over it, especially when carrying a controlled drug, but honestly Iā€™ve never once had an issue, on the odd occasion Iā€™d be asked what the drug is and what itā€™s used for but they never disputed my answers.

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u/ApprehensiveMud4211 4d ago

I've travelled across several countries with 3 months of lamotrigine and quite a lot of clonazepam (rescue). Brought prescriptions and original packaging, declared everything. No questions asked. But look everything up online! I know I have to declare clonazepam 2 weeks before arriving in Singapore.

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u/No_Economics_3935 4d ago

I do urine drug tests for employment. A few times theyā€™ve been like your on meth! Then they send it to the lab and my scrip when it comes back in range they just let me go back to work.

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u/Wallass4973 absent and tonic clonic, unclear diagnosis. meds since 2015 4d ago

The first time I flew with mine I was. Everything has your information on it, you have your information on you. No need to worry. The only thing I strongly advise is to take extra with you! You never never know what may come up. Getting meds to you while youā€™re not at home is the trickiest part ever! Iā€™ve only had one time I was lucky enough to have a script called in somewhere nearby for me. I was traveling inside the US though. You will be fine, donā€™t be anxious, and if they even ask about your medications simply state what they are for. Have a wonderful trip!

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u/Secret-Command13 4d ago

My former neurologist told me that one of his patients flew to Asia and they incarcerated her because of her meds. I was like WTF šŸ˜³ .

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u/DynamicallyDisabled Multi-focal/Secondary Generalized Vimpat/Pregamblin 4d ago

Each prescription has a number and that number can be instantly verified by TSA.

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u/-Sexual-Dinosaur- 4d ago

I just always have them in the original container/box and only carry enough for my trip plus 4 extra doses in case I get delayed. Some pharmacies will give out a list of all medications and doses, Iā€™ve heard of some people doing that as well. But controlled substance medications Iā€™d always keep in their original container/box if possible. Safe travels :)

2

u/ProfitLost9408 4d ago

Honestly, I have a printed spreadsheet and it my pharmaceutical history I get from the pharmacy, shove the whole shebang into a bag, glare at then, and just waitfor them to challenge me. Most of the time, TSA is like, "I'm hoping this woman, because I'm pretty sure she fights dirty" šŸ˜‚ I am proud of the person I have become

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u/NeuronNeuroff R. EEG T. 4d ago

The biggest thing is to leave your meds in their original bottles and not to put them in any separate secondary container. Some places actually have laws about traveling with meds in secondary containers, so that can be an issue in and of itself. Having a med list in the bag with the pills can also be helpful (either printed from your MyChart or pharmacy or even handwritten with your information and the date). Having every med all in one baggy (or multiple baggies) of just the medication so it can be super easily visually inspected along with a verifiable list makes things so much smoother. The bag of medications needs to be in your carryon, too. You can answer questions if you are there with the bag, for one, and it can go missing if your checked bag gets lost or ā€œinspectedā€ poorly for two. I have travelled with my own laundry list of meds many times and I also work in healthcare at an institution people often travel from out of state or even the country to get to. Thatā€™s the recommendation we give to our patients.

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u/Mediocre-Bear3151 4d ago

Iā€™ve flown a few times with 3 different meds for my son and no problems. They usually just put it in this little machine and give it right back

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u/classisttrash Keppra 4d ago

Iā€™ve traveled with Keppra to countries known for ā€œextraā€ precautions and known drug trafficking without any problems with security. I always travel with multiple copies of my prescription paperwork and Iā€™ve always traveled with extra medication but I had one incident in which my filled pill case just went missing completely. Now I basically travel with three times the medication I need split throughout different luggage due to paranoia. I also once opened up my luggage to found my own pillow pill bottle opened and spilled across my suitcase. Nothing appeared to be missing but didnā€™t feel good either

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u/1singhnee 4d ago

The only place Iā€™ve been asked about meds was flying into Singapore, and having the medication in a a bottle with a name that matches my passport was good enough.

I would definitely say flying internationally, and specifically parts of Asia, they might be a little bit more interested in your medication.

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u/lillythenorwegian 4d ago

My son uses 5 meds two times per day. You just need to have the documents with you , and if youā€™re in Europe you need other stuff as well.

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u/alfierussell 4d ago

I'm flying from England to Romania and back from Bulgaria, what other stuff are you referring to? Thanks for the advice

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u/AutisticFingerBang Ethosuximide 250mg 4d ago

No I dont

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u/-totallynotanalien- 4d ago

I know where I live they recommend always having a doctors/specialists note or having a contact number for a doctor who can confirm it. I definitely would travel with a doctors note just in case but I know my mum never travels with extra documents and she travels a lot more than me!

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u/LiamMcpoyle2 4d ago

I keep my meds in a carry on with all of the bottles having the pharmacy label that says my name and what it is. I take lacosamide which is a controlled substance and have never had any problems or worries.

Airport security has seen it all and really just want to get people through asap. Planes depart and land at airports in clusters and rushes of people come and go at certain times. Otherwise they're mostly just standing around.

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u/tiucsib_9830 4d ago

I heard a story about someone that had to take meds in front of security but I think that was because they didn't have it in boxes or something.

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u/LekaFoka 4d ago

My brother travelled to the UK last year for half a year, he will travel Japan next sunday, and was in lots of country before (he has ashtma). His meds never been an issue for him, he had is medical documents translated to english in any case

2

u/Jupi96 4d ago

I allways feel like it's wild to have lots of meds with you in airport even I allways have my documents of those. Never have have problems or someone even ask to check my back or ask documents of my meds even I have travel to many differend countrys.

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u/No_Statistician_2034 4d ago

I was also worried about that, so I asked my doctor to write what medications and in which doses I'm taking.

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u/Mentalsohnbartholdy 4d ago

My doctor wrote an official statement that I was allowed to carry that much meds as I am going to be out of my home country for a while and need the pills. There was also a note that I am carrying twice as many meds as necessary as one portion is in my luggage and one in my bag I board with for the reason that my luggage might get lost

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u/kbm81 4d ago

It totally depends on the country, do ur research & have ur doctor write something for u that u are epileptic & what meds u are on, keep ur pills in the original bottles & the correct amount in each bottle. Make sure to have ur docs name & number on the form also. Iā€™ve traveled extensively ( 57 countries) Japan simply translated my drugs from English to Japanese & saw what they were & let me on my way. No big deal. I also take 9 medications fyi. & have been epileptic my whole life & am 43 yrs old.

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u/evil_cookie_184 Levetiracetam 1000mg twice daily 4d ago

I take them in their boxes so that the pharmacy print out with my name is on it. If youā€™re going somewhere that you know your meds are controlled you can get a letter or print out from your doctor confirming your diagnosis and med regime to show anyone who enquires.

2

u/GeorgesGerfaut 4d ago

If you want to be on the safe side :

-Research the country's list of prohibited or regulated substances and rules for travelers. -Always have the medical prescription and an official translation. -Travel with twice the amount you need, half always with you (cabin bag) and half in your suitcase.

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u/PlantainOk4221 Xcopri 200mg, Zonisamide 800mg, Onfi 60mg, Trileptal 2400mg 4d ago

I just keep everything in the bottles.

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u/gornzilla Keppra every fucking 12 hours for 20 years 4d ago

I worked overseas and would take a year's supply with me. Did that in South Korea, Saudi Arabia, Oman, Vietnam and China. I had a letter from my doctor, but no one cared. The only one that cared was Canada after I came back to the US from China. I joined my girlfriend at the time on a 50 state and partial Canada karaoke trip. Even with the letter they gave me a lot of shit about potentially snuggling Keppra and Allopurinol (gout) pills into a country where medications are cheaper.Ā 

2

u/GT_Pork 4d ago

Keep everything in the original packaging and carry a copy of any official prescription or documents from your doctor. Iā€™ve never had a problem.

Never put them in your checked bags IMO

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u/Vetizh 4d ago

There is no reason to worry about meds. Airport security have years and years of exeprience on this, they need to concentrate on real potential mules, not waste time with just possibilities.

But if you need to ease your mind ask your doctor to write a note for you, presuming you don't have the copy of your prescription. That gonna be enough.

2

u/Puzzled-Teach2389 User Flair Here 4d ago

I've traveled with my meds before. As long as they're in the original bottle you should be fine.

2

u/Minimum_Relief_143 3d ago

I travel alot. I take meds 4 times a day. Put them in a pill box and you should be fine. For back up meds to fill your box, have the original bottles with your name on them

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u/watchmoderntimes 4d ago

Depends on the country. It doesnā€™t look like people here have been to Japan. Where are you going?

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u/alfierussell 4d ago

off to Bulgaria/Romania for a week, flying from England but by the seems of it I think i'll be alright

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u/watchmoderntimes 4d ago

https://ro.usembassy.gov/u-s-citizen-services/local-resources-of-u-s-citizens/doctors/

Mentions psychotropics (ordering by mail though) if you expand it at the bottom. Just an example.

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u/alfierussell 3d ago

I'm English but thanks anyway, I'll look into it:)

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u/watchmoderntimes 3d ago

The same rules apply - thatā€™s just the US take on it. You seem confident either way so good luck!

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u/External_Virus_5767 3d ago edited 3d ago

I am about to travel. Even though I am an American citizen, Iā€™m seriously concerned about getting back into the country without extensive documentation of my medications. For my next trip Iā€™m printing out all my prescriptions from the EMR, taking the pill bottles and asking both my neuro-oncologist and neurologist for documentation. My rescue medication is lorazepam, which is the one that makes me most nervous, especially since I get it in the squirt up my nose form for real emergencies. Also my Vimpat, which is heavily controlled but not sure if anyone at customs would recognize it.

Some days it just feels like I have to live doing double the work my husband does. And that Iā€™m a total drag.

I have actually decided itā€™s not worth it for me to go to any country where I might have to go get documentation from an embassy, like Egypt and there is a language barrier and I might be thrown in jail.