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Clomipramine for the treatment of cataplexy in narcolepsy

What is cataplexy in narcolepsy?

Narcolepsy is a long-term condition which causes excessive sleepiness during the day and may disrupt your sleep at night. You can also have sleep attacks where you fall asleep at inappropriate times during the day without any warning.

Cataplexy is a condition associated with narcolepsy that results in sudden muscle weakness. This can be triggered by strong emotions such as:

  • laughter
  • anger
  • fright
  • surprise

Muscle weakness can vary in severity, and cataplexy attacks can differ in both type and how long they last for.

What is clomipramine?

Clomipramine belongs to a group of medicines called anti-depressants. It can be used to treat cataplexy in narcolepsy. Clomipramine works by interfering with certain chemicals in the brain which may be involved in causing the symptoms of cataplexy.

How do I take the medicine?

For the treatment of cataplexy, clomipramine is taken 1 a day at bedtime. Clomipramine can be taken with or without food. Swallow the capsules whole with a drink of water.

Keep taking the capsules until your consultant tells you otherwise. Stopping suddenly can cause unwanted side effects and severe cataplexy attacks. Your consultant will want you to reduce your dose gradually if you need to stop treatment.

What should I do if I forget to take the medicine?

Don’t worry. Take the next dose when it is due.

Do not take an extra dose the following night to make up for the missed dose.

Are there any side effects?

Most medicines can cause unwanted side effects, although not everyone gets them. The unwanted effects often fade as your body adjusts to the new medicine, but speak with your GP or pharmacist if any of the following continue or become troublesome.

Side effect

What should I do if this happens?

Very common (10 percent)
Feeling or being sick

Diarrhoea

Stick to simple foods. Avoid rich or spicy foods. If you are sick or have diarrhoea, drink plenty of water to replace lost fluids.
Dry mouth Try chewing sugar-free gum or sucking
sugar-free sweets.
Constipation Try to eat a well-balanced diet containing plenty of fibre and drink plenty of water each day.
Headache Drink plenty of water and take your usual painkiller, such as paracetamol.
Feeling restless or shaky These usually settle within a few days. If any becomes troublesome or severe, speak with your consultant or GP.
Feeling dizzy, tired or weak.

Blurred vision

If this happens, do not drive or use tools or machinery until you feel better. Do not drink alcohol.
Common (between 1 percent to 10 percent)
Feeling faint or light-headed, especially when getting up from a sitting or lying position Getting up more slowly may help. If you begin to feel faint, sit down until the feeling passes.
Changes to blood test results and any changes to your heart rhythm Your consultant will monitor any changes and alter treatment accordingly.
Sweating or hot flushes

Difficulty in passing urine

Increased appetite

Feeling confused

Disturbed sleep, yawning

Lack of concentration

Feeling shaky

Muscle weakness

Itchy skin rash

Changes in weight, sexual function or taste

Breast tenderness

Ringing in ears

If any of these become troublesome, speak with your GP for advice.

For further information on side effects, please see the manufacturer’s leaflet that comes with the medicine.

Information:

If you experience any of the following symptoms, contact your GP for advice as soon as possible: any changes to your mood (such as feeling anxious, nervous or agitated), behaviour, or thinking (forgetful), any suicidal thoughts, or thoughts about harming yourself.

Can I take clomipramine with other medicines?

Clomipramine may interact with some medicines. It is important to let us know about any medicines that you are currently taking, so that we can check clomipramine is suitable for you.

If you are buying any medicines over the counter from a pharmacy always mention that you have been prescribed clomipramine. Although it is safe to take paracetamol with this medicine, ask for advice before buying any other painkillers, or any flu remedies or antihistamines.

You should also seek advice if you are thinking about buying herbal or homeopathic remedies.

How will my treatment be reviewed?

Your treatment will be reviewed regularly in the narcolepsy clinic. We can adjust your doses to help with your symptoms. Your consultant will want to check to make sure that the treatment is helping. You may need to have your blood pressure and heart rate checked regularly.

How do I get a repeat prescription?

Your GP will give you a repeat prescription for clomipramine. Please make sure you request your repeat prescription early to prevent you running out or risk missing any doses of your medication.

Is there anything else I need to know?

This medication needs to be taken regularly. It can take 1 or 2 weeks after starting this treatment before the effect builds up, and up to 4 weeks before you feel the full benefit. It is important that you continue taking it, even if you think it is not helping. The dose of clomipramine may need to be increased over time.

Sunlight

Clomipramine can make your skin more sensitive to sunlight. You should try to avoid exposure to strong sunlight, and use a sun cream with a high protection factor.

❌ Do not use sunbeds.

Diabetes

Clomipramine can alter the levels of sugar in your blood. If you have diabetes you may need to check your blood sugar more regularly. Your GP can advise you about this.

Alcohol

❌ Do not drink alcohol while you are taking clomipramine. Mixing alcohol with clomipramine may increase the risk of other side effects such as drowsiness, confusion, and blurred vision.

Sleep routines

Taking clomipramine is not a replacement for a good sleep routine. It is still important to aim to get around 9 to 11 hours of sleep at night, depending on your age. You should go to bed when you’re tired and get up at about the same time each day. 

Pregnancy and breastfeeding

We do not recommend the use of this medicine if you are pregnant or breastfeeding. You should let your consultant know if you are planning a pregnancy, so that a management plan can be agreed. If you discover that you are pregnant, please contact your consultant for advice as soon as possible.

Driving

If you are old enough to drive, you must let the Driver and Vehicle Licensing Authority (DVLA) know if you are diagnosed with narcolepsy.

You may be allowed to drive again when your symptoms are well controlled with medication, but you will need to have regular reviews. Your consultant will advise you about this.

If you are a driver, please be aware that clomipramine may affect your reactions and ability to drive. It is an offence to drive while your reactions are impaired. Even if your driving ability is not impaired, if you drive, you should carry some evidence with you which shows that the medicine has been prescribed for you. A repeat prescription form or the patient information leaflet from the packet is generally enough.

Other medical procedures

If you are due to have any medical treatment, tell the person carrying out the treatment that you are taking this medicine, as it can interfere with some anaesthetics.

Clomipramine should be kept out of reach of children. If anyone other than you takes this medicine, you, they, or their parent or carer should contact NHS 111 for advice. If they are unwell then they should call for an ambulance.

Expiry

Do not use the medicine after the expiry date.

The expiry date is printed on the container. Any that have gone out of date should be returned to your local pharmacy to be properly disposed of.

Contact us

Medicines Helpline

If you have any questions or concerns about your medicines, please speak to the staff caring for you or call our pharmacy helpline.

Narcolepsy team secretaries

0114 271 7400 between 9am to 5pm, Monday to Friday.

Rowland’s Outpatient pharmacy

0114 305 3367 between 9am to 5pm, Monday to Friday.

Your comments and concerns

For advice, support or to raise a concern, contact our Patient Advice and Liaison Service (PALS) on 0114 271 7594 or email scn-tr.pals@nhs.net.
To make a complaint, contact the complaints department on 0114 271 7194.

Other resources

Narcolepsy UK
You might find this charity’s website useful for connecting with patients who suffer from the same condition as you, but any information found should not alter your current treatment. You should discuss any new advice with the doctor caring for your condition.

NHS 111
Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day on 111.

NHS.uk
Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health.

Information:

Reproduced with the kind permission of Guy’s and St Thomas’ NHS Foundation Trust.

Is something missing from this resource that you think should be included? Please let us know

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Disclaimer

Please note this is a generic information sheet relating to care at Sheffield Children’s. The details in this resource may not necessarily reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If you have specific questions about how this resource relates to your child, please ask your doctor.

Resource number: SLP29

Resource Type: Article

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United Kingdom

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