I firstly want to point out that I am talking about legal controlled drugs for my Narcolepsy and nothing else…don’t want to get myself in trouble particularly while I’m in a different country -;)
Getting enough medication
I take 400g of Modafinial a day and 40g of Clomipramine. Modafinil is a central nervous system stimulant and works by preventing excessive sleepiness during waking hours. Clomipramine works by repressing my REM sleep. Without these I would be sleeping my way around India and South East Asia.
Before developing narcolepsy I had always been healthy and had no need for any medication so I was completely ignorant to the complications that arise for those requiring medication abroad. Naively I thought it would be possible to get medication for a years travel. However the NHS guidelines dictate that 2 or 3 months is the longest prescription you can take, even in exceptional circumstances. This seems extremely unfair discriminating people with narcolepsy or other life long health conditions from going on holiday or travelling for more than 2 months.
Yes I have narcolepsy and yes it is a debilitating illness however with the right medication and lifestyle changes I can live a normal life (well just about).
My first hurdle was getting enough medication to last my travels. After being very persistent with my doctor he eventually agreed to give me 5 months of medication. Six months prior to flying I began re-ordering my medication a few weeks earlier each time. Altogether I had just under 2 months worth of additional medication. I was pretty happy with this and figured that I had plenty of time to plan for any additional medication that I may need.
With a sufficient amount of medication I then had to make sure it fitted in my bag (not an easy task).
Getting medication abroad
My options are to either get medication in India or to ask my parents to apply for my repeat prescription and get them to send it over.
Out of the two I think the first one will be the most likely as I don’t have a fixed address and I think it is likely that the package could be stopped at customs. I have been in India for 3 weeks but my first task was to go to a reputable pharmacist and request Modafinil. I showed the pharmacist my Doctors letter and within a day I had a packet of Modafinil. In the UK it costs 70 pounds I paid just over 1 pound.
A big worry was whether this medication is safe to take and if it actually works. With a friend I decided to try 2 tablets to see the effect, I have had no unusual side effects and it seemed to work fairly well. When I get to a bigger city I am gong to make an appointment with a Doctor to confirm that it is the right medication.
Getting through Customs safely
My next mission was to make sure I was be allowed to take it into India and avoid fines, prison and it being confiscated. I am predominately referring to the Modafinil as it is a controlled drug. However I took the same precautions for the Clomipramine given the quantity.
On the way to the airport I was feeling anxious about getting my medication through customs. To my surprise this was not a concern for the security staff who were only interested in ensuring that I had no liquids over 100ml. However to ease my anxiety and to justify my time spent preparing I demanded that they saw my medication and relevant documents. I got the feeling that they thought I was pretty odd as I’m guessing most people would be relieved….
With the UK customs going so smoothly I was convinced that I may have trouble getting into India. I had images of my face being in the Sun with the headlines ‘British Social Worker arrested for drug laundering’. However again I had no problems although with hindsight his is probably because I didn’t declare it. I planned to but was advised by security staff that I did not need to.
I have only been in India for 3 weeks and have further flights and border crossings to get through so I will keep you posted with any other issues that might come up on the way. Fingers crossed it will be fine.
My top tips for travelling abroad if you have Narcolepsy:
1). Always carry medication in the correct packaging with the prescription stapled to the side.
2). Have a multiple copies from your Doctor confirming your itinerary, what medication you take, how much and why.
3). Declare the medication when you go through customs.
4). Keep your medication in hand luggage and under your control during travel. Narcolepsy UK recommended that the medication could be damaged or lost if kept in the aircraft hold.
5). Ask your Doctor to write a letter explaining Narcolepsy and Cataplexy (keep lot of copies). My Doctor wrote that I may collapse suddenly. I also spoke to the air stewards to inform them about my health. I wasn’t too worried about my Cataplexy , however I was worried that I could miss meal times due to being asleep so I asked staff to make sure they wake me up when food comes.
6). Bring several leaflets explaining Narcolepsy from Narcolepsy UK. I gave some to give to the airport and security staff but I have also given it to people I have met along the way.
7). Licence from the home office confirming authoristation to import large medication of controlled drugs for my use only. I didn’t have this letter from the home office but I have now requested it and hope to have it with me for my next flight. The Home Office Drug Licensing and Compliance Unit or DLCU can be contacted on 0207 035 0792 for information on licenses for exporting medication for your use; a license costs up to £24.
8). Pre planning – I cannot stress this enough, it really reduce any worries.
(Please note my advice relates to my prescribed medications, refer to the websites below for advice about any other medication).
Information and advice from Narcolepsy UK and the Home Office has been invaluable. If you are considering going on a holiday or longer adventure check out the websites below:
Narcolepsy UK – http://www.narcolepsy.org.uk/living-with-it/holidays-with-narcolepsy
The Home Office website – https://www.gov.uk/travelling-controlled-drugs.