I’m interested in finding others coping with Temporal Lobe Epilepsy…I received my diagnosis in the late 1990s and until fairly recently managed DeJa Vu episodes reasonably well without medication.
The first change was..sense of smell. For a while it disappeared completely, then for a while I experienced a constant unpleasant odour, very difficult to explain.
This has now turned to ‘a yeasty odour’……..and more worrying I’ve started to experience ‘drop attacks’ in conjunction with the DeJa Vu aura.
The ‘drop attacks’..have resulted in head injuries and treatment in A&E.
I already have a Neurologist (diagnosis of Cerebellar Ataxia) who I contacted last week after my recent admission to A&E…and I’m now waiting to be offered medication.
Written by
wobblybee
To view profiles and participate in discussions please or .
It’s quite some years since I was prescribed medication …this might be suggested. Have you found it controls ‘episodes’. Basically…it’s been occasional DeJa Vu for me…but head injuries have been traumatic.
Hi Wobblybee,So sorry to hear that you have had a number of a&e trips due to drop attacks. My hubby also has Ataxia with temporal lobe epilepsy diagnosis. His seizures are different in how they manifest, but has tried a number of different meds. He takes briviact, kepra and Cenobamate. The briviact has stopped his gran mals but experiences impaired awareness seizures hope you get some support soon
Decades ago…I tried different meds, Carbamazaphine -Lamotrigine - Sodium Vaplroate. None of these stopped the DeJa Vu sensation, but at the time it was mild and didn’t cause anything other than ‘recall, nausea and dizziness’….and eventually they tailed off after menopause.
But..unexpected falls and head injuries are significant. At my last review I spoke to my Neurologist about my concerns..and was told medication was optional since this wasn’t a regular occurrence…and at the time I decided against it. After my recent injury (December) …I had a telephone conversation with a Neurologist…and I’m still waiting for advice.
🤔 Newer medications may be more effective …I know Temporal Lobe can be difficult to treat, and I can well do without ‘having impaired awareness’ when I cope with worsening balance and mobility.
Had Temporal Lobe Seizures for 6.5yr's, on a periodic basis. Have tried Lacosamide, Brivaracetam, Lamotrigine. And
1. They're certainly effective in stopping seizures, when established at an appropriate dose
2. Brivaracetam July '24 onwards, Lacosamide '22 & '23. Both have had fewer side effects than Lamotrigine, Brivaracetam probably fewer than both
3. I'd try Brivaracetam as a 1st choice (Nb. Don't like taking any med's)
4. Brivaracetam is taken up remarkably quickly, the half life of the medication being very short, thus 2 doses daily are required
5. Have found Dr's prefer to dump bucket loads of drugs on the patient, without even speaking to the patient, indifferent to side effects causing horrific issues
6. Would absolutely insist trialling the lowest possible dose, allowing sufficient time for a "stability" of dose to be achieved, only increasing if it's obvious it's not sufficient
7. Worth bearing in mind that any withdrawal or missed doses can/will result in seizures 50 times worse than that you'd previously had, essential doses are taken and/or withdrawal taken over prolonged period
Obviously worth remembering that general Dr's know bugger all about seizures and/or medications - may have had a 1 Hr lecture as a 19yr old
Hi Wobblybee he like you tried all the meds you mentioned and a few besides. Briviact is a new med and he finds this the best and with the least side effects. Iike you he has eye and mobility problems and so Cenobamate might not be the best as can affect both of those. I do hope your neurologist is helpful in finding a solution for you
I’m so sorry.. has medication helped to control these. I realise what I contend with is minor in comparison to what some people have to cope with.
Decades ago, I’d been experiencing DeJa Vous episodes for a while but didn’t know what they were……then I had a seizure in my sleep (1990s) my husband thought it was a stroke and called an ambulance. Testing failed to ‘trigger’ reactions..but I was diagnosed with TLE based on symptoms. Further episodes didn’t progress to actual seizure activity, and I haven’t lost bladder control. But recently I’ve momentarily lost consciousness and had head injuries.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Grandmal epilepsy 
Temporal Lobe Seizures and loss of memory 
Epilepsy Surgery
Epilepsy?
New mum with epilepsy 
