CBD oil: Hi all does any one try CBD oil... - Epilepsy Action

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CBD oil

car67 profile image
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Hi all

does any one try CBD oil from over the counter. My seizures are bad at the moment and I am so desperate to feel normal again. I know or think it was passed for children who have Dravet syndrome and Lennox-Gastaut syndrome whose seizures are hard to control and I believe they have multiples.

I been trying to think what else I can do to try and make life bearable , as I’m really struggling and it’s really getting me down with heightened anxiety. I know they sell the oil at Holland Barents and other places but not sure what to do. I am going to contact my neurologist but wanted too see if anyone had tried it or knew someone that had, and do you continue with your usual medication.

Please can anyone advise. Thank you

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EpilepsyAction1 profile image
EpilepsyAction1PartnerEpilepsy Action

Hi Car67

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. If you don’t hear from others in a similar situation, you may wish to try our other services.

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

twitter.com/epilepsyaction

epilepsy.org.uk/newsletter

You are rights, at the moment, Epidyolex is only recommended as a treatment on the NHS for people with Dravet syndrome and Lennox-Gastaut syndrome. This is because there is good evidence that it reduces seizures for people with these syndromes.

There is some evidence that Epidyolex may be effective for other types of epilepsy, but the evidence is not as good as for the syndromes mentioned above. Specialists may prescribe it for people with other types of epilepsy, but this would be on a case-by-case basis. And it is likely it would only be in exceptional circumstances, where other treatments have not worked.

NICE has called for more research into using CBD medicines to treat other types of severe, treatment-resistant epilepsies. This means some people might be able to access Epidyolex by taking part in clinical trials. Your specialist will be able to tell you if there are any clinical trials you could take part in. epilepsy.org.uk/research/ta...

CBD products sold online and in health shops are not licensed as medicines. If you choose to use CBD products for yourself, it’s important to let your epilepsy specialist know. This is because the CBD product could affect the way your existing epilepsy medicines work.

Here is a link to our information on medical cannabis. epilepsy.org.uk/info/treatm...

As you are still having seizures, and if you have tried various medicines, may be your specialist could look into other treatment options for you.

epilepsy.org.uk/info/treatm...

epilepsy.org.uk/info/treatm...

Finally, I wonder if you will find our information on Wellbeing helpful. Anxiety and low mood are common when you have epilepsy, and it can be very difficult to live with. For this reason, we have information to help people with epilepsy look after their general wellbeing. You can either look at the webpages to read the information, or you can look at it on our interactive E learning website.

epilepsy.org.uk/info/wellbeing

learn.epilepsy.org.uk/?from...

Regards

Diane

Epilepsy Action Helpline Team

car67 profile image
car67 in reply toEpilepsyAction1

Hi Diane

Thank you for replying and taking time to send me the information. Much appreciated.

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