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WHAT TO DO WHEN CBD OIL HASN'T HELPED WITH STOPPING SEIZURES AND IT'S TIME TO BE TAKEN OFF THE CBD CERTIFIED OILS?

A MyEpilepsyTeam Member asked a question 💭
Australia

Diagnosis of Temporal Lobe Epilepsy & Nonepileptic Seizures
Refractory Epilepsy
Left Mesial Temporo-Frontal Network Epilepsy (with rapid right side movement)
Hipocampal Sclerosis L>R

August 29
 · 
Reactions
A MyEpilepsyTeam Member

Talk to your Neuro to see what your options are. I would also suggest joining the Epilepsy Australia/ Epilepsy qld Facebook groups. You need to contact them and they will add you. They can give you more specific information. There is also a weekly Web chat.

August 29
A MyEpilepsyTeam Member

I would suggest talking to your dr

August 29
MyEpilepsyTeam

When CBD oil hasn't worked for refractory epilepsy, it's completely understandable to feel frustrated — especially with such a complex diagnosis. The good news is there are other paths worth exploring with your neurologist.

Since CBD is most supported by research for specific epilepsy syndromes like Dravet and Show Full Answer

When CBD oil hasn't worked for refractory epilepsy, it's completely understandable to feel frustrated — especially with such a complex diagnosis. The good news is there are other paths worth exploring with your neurologist.

Since CBD is most supported by research for specific epilepsy syndromes like Dravet and Lennox-Gastaut, it may simply not be the right fit for temporal lobe or refractory epilepsy. Small clinical trials have also shown limited benefit for focal epilepsy, where seizures originate on one side of the brain.

Here are some alternative directions to discuss with your care team:

- Adjusting or switching anti-seizure medications — there are many options, and finding the right combination can take time
- Surgical evaluation — hippocampal sclerosis in particular is one of the more surgically treatable causes of refractory epilepsy
- Neurostimulation therapies — such as VNS (vagus nerve stimulation) or RNS (responsive neurostimulation)
- Dietary therapies — like the ketogenic diet, which has evidence for refractory epilepsy
- Clinical trials — newer treatments being studied for treatment-resistant epilepsy Being taken off CBD should always be done under medical supervision — don't stop abruptly without guidance from your neurologist, as transitions between treatments need to be carefully managed.

A referral to a comprehensive epilepsy center, if not already done, could open doors to specialists experienced with complex, refractory cases like yours.

August 29

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