← Return to Rapid detox of cannabis medicine to treat refractory epilepsy

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@santosha

Hi @lhoward, Good Afternoon
I take pure CBD 200 mg/ml (Purodiol – Farma USA) together with a low dosage of carbamazepine to treat my epilepsy (also refractory). I feel much better with CBD than with AEDs (I could not tolerate the side effects and/or did not control my seizures). Though I am not yet seizure-free, I am living again and much better off with my current CBD treatment than with the five previous ones (Lamotrigine, Oxcarbazepine, Lacosamide, Gabapentin, and Carbamazepine) I have tried.
When I have a seizure I take a rescue spray of CBD together with THC. It immediately interrupts my seizure. I have shared this experience here at Mayo Connect some months ago.
If I can be of any help, let me know.
All the best!
Santosha

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Replies to "Hi @lhoward, Good Afternoon I take pure CBD 200 mg/ml (Purodiol – Farma USA) together with..."

Yes!!
When my friends daughter starts to have a seizure, she runs a pea size amount of concentrated cannabis medicine (which is like a thick, dark paste) on her daughters gum’s, and her seizure immediately stops and doesn’t go into full tonic clonic seizure…

Her daughter is non verbal - you are the first person I have ever heard actually speak about their own experience, using cannabis medicine …….. I’m so excited to make contact with you Santosha!

May I ask, is the medicine you use prescribed by a Dr or is it privately made?

The children’s hospital in Brisbane (where my friend lives) refuses to acknowledge this medicine with THC works (many of the doctors do but the hospital executive and state health Dept refuse to) so every time she has to go to hospital, they threaten to stop her being administered it.
As she takes a more diluted version of the medicine everyday (which has dramatically reduced frequency of seizures) if they were to prevent her being given it, it would cause her to go into a rapid detox which we have been advised could be fatal in itself.

But the biggest issue is, she is allergic to Gabapentin and Medazolam, so if she has a big seizure and is prevented from having cannabis medicine, and Keppra doesn’t stop it (it has only worked 50% of time) she could become status epileptus and she could die……

So - long story short; I’m trying to find any studies or anything formally documented that shows that THC does work to stop seizures and also, the same kind of documented information stating rapid detox a child off cannabis med is dangerous …….