Hello everyone, in February I was diagnosed with quite an unusual type of epilepsy called Transient Epileptic Amnesia.
It causes “lost time” incidents where I lose memory for about 10 minutes but stay conscious and can even walk and talk fairly normally, although in a subdued way. It’s just that I have no memory of it and am bewildered for a few minutes afterwards.
They are very scary and extremely disruptive, stopping me driving and making my current job impossible.
I am taking Lamotrigine, 350mg a day at the moment. The seizures (a type of temporal lobe epilepsy) did stop for a couple of months but have now restarted.
I was wondering if anyone here suffers from the same type of epilepsy or similar? If so have you had any luck with treatments? I am desperate now for anything that might help sort this.
Thanks for your time, Michael.
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Michael_M
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I have been on 200mg Lamotrogine twice a day for over 11 years. The seizures certainly decreased, but we did have some problems with generics. I am now prescribed the GSK manufacturer (Lamictal) which does have less side effects. However the seizures continued sporadically and my neurologist added Levetiracitam (Keppra) 500mg twice a day. This combination worked extremely well and I have been seizure free since June 2014 and with no noticeable side effects.
200 mg Lamotrigine is an extremely low dosage. Your neurologist is wrong in not upping the lamotrigin dosage on a monotherapy. Lamictal is definitly preferable. It's the original. The others are just watered down generics. It's more expensive which is why some NHS doctors are reluctant to prescribe it. You can take up to 700mg of Lamictal on a monotherapy. That's what it was designed for. Monotherapy is much more desirable as you grow older. You should try it. Keppra which hasn't stood the test of time. Lamictal has. It's had the highest success rate worldwide. You don't get Lamictal on the NHS in the UK because of the expense. Private patients do (I interpret worldwide for neurologists).
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 with Transient Epileptic Amnesia, you may wish to try our other services.
I was diagnosed with TEA some years ago following a nocturnal seizure. My wife thought I was having a heart attack and called an ambulance. The paramedic said it was a seizure and all tests in the following period proved him correct. I had no recollection of anything. A neurologist diagnosed TEA and MRI scans and CAT scans proved normal. I lost my driving licence fo 12 months as it had been a nocturnal seizure, I think it’s 4 years if it’s daytime seizure. I commenced Keppra (levetiracitam) two doses of 250mg spaced evenly over 24 hours increased to 500mg. I found the medication made me quite emotional initially. In the main it’s worked. I have short term memory loss, peoples names etc and I easily forget social events. However my brain seems to prioritise and I have detailed recall of what I consider important and have successfully involved myself in legal work of a complex nature supporting a friend, I could give other examples of detailed analysis easily recalled. I have coping strategies eg post it notes in my pocket plus my iPhone with its notes helps me to remember peoples names without embarrassment.
Hopes this helps. By the way (nearly forgot!) I’m 3 score yrs and ten.
Hia there, MRI was normal and EEG showed some epileptic activity. The doctors seem a bit baffled and my neurologist had never heard of TEA until I showed her information about it. She described it as a “mild form of epilepsy” but it has much more than “mild” effects on me and my family. Are you dealing with TEA too?
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Is kepra really for Epilepsy has my doctor say different.
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