Understanding Specialist Treatments
Vitamins, Hormones and Amino Acids
Some vitamins, hormone-based treatments and related substances have specific roles in epilepsy care. Their use depends on the diagnosis and individual clinical needs.
These treatments should not be confused with taking general supplements to prevent seizures.
About this information
Epilepsy Ontario regularly reviews this educational material. It does not replace professional medical advice, diagnosis or treatment. Ask your healthcare team about your own circumstances.
Do not start, stop or change prescribed treatment independently. Check with your pharmacist or prescriber before adding supplements.
Specific Clinical Uses
Different treatments serve different purposes.
Hormone-based treatment: ACTH and corticosteroids
Adrenocorticotropic hormone, usually called ACTH, and corticosteroids such as prednisolone may be used in specialist treatment of infantile spasms.
The choice depends on the child’s diagnosis and circumstances. These are prescribed treatments requiring careful instructions and monitoring, including attention to infection risk and other side effects.
Suspected infantile spasms need urgent medical assessment. Do not try supplements or wait to see whether the movements stop on their own.
Vitamin B6: pyridoxine
Pyridoxine has an essential treatment role in certain rare conditions, including pyridoxine-dependent epilepsy. This requires specialist assessment and a prescribed treatment plan.
This does not mean vitamin B6 supplements will control seizures in epilepsy generally. Excessive supplemental B6 can cause nerve damage.
If B6 is prescribed, follow the specialist’s instructions. Do not replace medical treatment with a shop-bought supplement or alter the dose yourself.
Carnitine: levocarnitine
Carnitine helps the body use energy. Levocarnitine may be prescribed to treat or prevent low carnitine levels, including in selected people receiving valproic acid.
It is not a routine seizure treatment or a supplement everyone taking valproate needs.
Use the name carnitine or levocarnitine rather than “vitamin B13.” Ask the healthcare team whether treatment is indicated and which preparation is appropriate.
Before Adding a Product
Check the purpose, dose and interactions.
A product being labelled “natural” or sold without a prescription does not establish that it is suitable for someone with epilepsy.
- Show your pharmacist or prescriber the exact product and ingredient list.
- Explain which prescribed medicines and other supplements you take.
- Ask whether there is a clinical reason to use it.
- Check the dose, potential side effects and interactions.
- Do not substitute a supplement for prescribed anti-seizure medication.
Carnitine products also need review: Health Canada advises people with a seizure disorder to consult a healthcare professional before using L-carnitine supplements.
What about bone health?
Some anti-seizure medications can affect bone health. Ask whether your overall risk warrants assessment, dietary changes or calcium and vitamin D supplementation.
Recommendations should reflect your medicine, diet and health needs. There is no single supplement plan appropriate for everyone with epilepsy.
Questions for your healthcare team
- What condition or deficiency is this treatment addressing?
- Is it part of seizure treatment or support for another health need?
- Which preparation and dose should I use?
- What monitoring is needed?
- Which symptoms should prompt medical advice?
Further reading:
SickKids: levocarnitine
·
GeneReviews: pyridoxine-dependent epilepsy
·
NICE: childhood epilepsy treatment.
