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The ten most asked questions of 2011

As it’s the time of the year where people put together lists we thought you might be interested in the ten most asked questions from website, phone and email in 20111 – and the answers of course!

1. Does modafinil really affect my contraceptive pill?
Yes! Bo the oestrogen and progesterone metabolism is affected by Modafinil and their affects can be reduced. The full story is here.

2. I am going abroad on holiday and wonder if I can take my medication?
It varies from country to country – with problems the further east you go. For Europe it should be fairly straightforward. According to the EU you are able to ship up to 28 days supply of medication for your own use between member states. Check with us at least three months before you go and we will try to find out what you can and can’t do.

3. Is Dexedrine still available?
Yes, but now it is known by its generic name which might cause some problems for your pharmacist if your GP writes Dexedrine on the prescription. Just ask him to check his BNF and it should all make sense.

4. Can I still drive with Narcolepsy?
This is a perennial question, not helped by conflicting information from the DVLA, your GP and probably your consultant. When you are diagnosed with narcolepsy you should inform the DVLA and return your driving license. Once your consultant is convinced that your medication is controlling your condition and you are safe you can apply to have your license re-instated. This will take about three months, and you will probably be awarded a limited time license for one, two or three years. After a period of time with no trouble you will be allowed a 65 driving license again.

5. If I tell my employers I have narcolepsy could I get the sack?
No! You are covered by legislation and can’t be discriminated against in your job.

6. Can I claim Disability Living Allowance with Narcolepsy?
Yes you can but it isn’t easy and it is going to get more difficult as changes to measuring disability come in between now and 2015. However if you are under 65 and feel you need support do check out the area on the website for help.

7. How many people in the UK have narcolepsy?
As it is a hugely misdiagnosed condition that is difficult to say. Most people think the figure is 2 cases per 10,000 so that would mean about 30,000 in the UK have narcolepsy.

8. Should I tell my school I have narcolepsy?
Absolutely; again the Equality Act 2010 states that educational providers should make reasonable adjustments to ensure disabled students are not discriminated against. For narcolepsy this could include providing a place to nap or changes to the way you are marked or do exams. Narcolepsy is, under the act, a disability.

9. What are my chances of getting the wonder drug Xyrem?
Remote but not impossible. You will have had to have gone through other drugs first and they have not worked for you. You will then have to go through something called an IFR – Individual Funding Request. This is where your consultant makes a request of your local funding authority for the drug. A year’s supply costs about £13,000 which of course has nothing to do with the limited number of users. The chances are you will have to apply and appeal and possibly appeal again but if you persevere and have the full support of your consultant you are in with a chance. It isn’t a quick process though – expect it to take years rather than months.

10. Will they ever cure narcolepsy?
Probably, but not for a long time! I think what we will see first is better medication coming through – something like orexin/hypocretin sprays that can get through into the brain and actually replace lost orexin. Though this could be ten to fifteen years away it will come, or something like it.

News

Is narcolepsy a risk factor for narcolepsy?
Obesity is common in narcolepsy and an increased prevalence of Type 2 diabetes has also been reported.  However, a recent study has suggested that narcolepsy is not a risk factor per se for diabetes. (read more)

Does H1N1 influenza cause narcolepsy?
There is increasing information which suggests that infections with H1N1 'flu can trigger narcolepsy in some individuals. (read more)

Weekend get-together
The General Purpose sub-committee plans to organise a weekend get-together this summer for families of children with narcolepsy. The intention is to combine sessions on subjects of interest with opportunities to meet and share experiences with other families in a relaxed setting, as well as optional group activities. More details will be announced in the near future, but in the meantime the committee would like to hear from everyone who would be interested in participating: what would you like to see at the event, and is there anything that you can contribute towards making it a success?

Please email your comments and suggestions to info@narcolepsy.org.uk with the subject "Family Event".

Would you like to help in a study?
Not a clinical study for drugs, but something that will help determine if people with narcolepsy plan and majke decisons differently to the rest of us. Sophie is a student at Cambridge who is looking for help with her MSc project. She decided on narcolepsy due to personal experience of how debilitating the condition can be. This explains what she is looking for and we will be happy to pass on any comments.