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Epilepsy Research UK
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Falls

My daughter is 31 now and has had epilepsy - probably frontal lobe - since her teenage yrs. Her first symptom noticed was falling possibly caused by atonic seizure and in response to unexpected noise. She went on to have tonic clonic seizures which were eventually mostly controlled with lamotrogine 225 twice a day. The problem now is she has myocyclonic jerks a few times a day. These only last a second of two. If she is standing or walking these may cause her to fall and has led to fractures and other injuries. She is being investigated by a good neurologist at the moment but it seems that her symptoms are not common and difficult to control. Her epilepsy causes many problems but the falling is the worst. I wondered if anyone else had a similar problem?

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Hi, it must also be very stressful for you. When on I was lamotrogine it didn’t do anything for me & I was having random partial complex’s seizures but couldn’t be controlled.

But am now on Zonisamide, Keppra & Clobazam (more for anxiety) & have been seizure free 18 months 👍

Keppra is a horrible drug but it works - I take vitamin B6 to help & yoga 🧘‍♀️.

Maybe your daughter should discuss trying a combination with her neurologist. It is trial & error in finding the right drug/s & balance. X SJ

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Hi, My daughter have myoclonic absence. Now she's absence more better with two medication. It's levetiracetam 10ml twice a day and zonisamide mylan 150ml twice a day. So, Speak to neurologist about this medication. My opinion it's very good. Good luck and god bless your daughter.

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It makes me grieve. For someone so young and send my hope and wishes. My life has been restricted yet lucky. Sincerely hope the neurologist can help.

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I've had epilepsy for 45 years now and my pattern of seizures has changed in the last 2 years also. It's a long story but feel free to message or email if needing to chat further.

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I work for a shop that has been selling cbd for a number of years. The stories I hear of it eliminating seizures and muscle spasms are somewhat legendary. People are using cbd oils, usually a 5% strength a few drops morning and night, if a seizure happens some cbd paste generally stops it instantly. It's not a medical product in the UK yet so I can't tell people how well it works and sell it, so I come to forums so I can let people know. As I said it would be illegal for me to sell cbd after making these claims so please don't ask. I can point you toward a decent brand with good quality products though, the market is full of poor products and it's taken 100's of hours of research to sift through and find the good ones. Cbd life are a reputable company with good products, website here cbdlifeuk.com?ref=1011886

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Hi

I am sorry to hear that about your daughter..! I hope doctors can help with something, I am 35. I have been having seizures for 2years now under neurologist and been to rehabilitation centre however still cannot find out the cause of seizures .

I have found it easier to manage with help or behavioural therapy and in terms of falls I have had plenty especially when it’s tonic clonic. But cbd oil in hot water 3 times a day helps ..

You can get good brand from health store .

Hope this helps.

Thanks

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