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.
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wobblybee
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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
So glad you have had a response from neurology and there is a plan to introduce meds. Lamotrigine is often prescribed for temporal lobe seizures. I would keep a diary of your symptoms on taking it if you have any side effects so you can keep nurse specialist advised. Hubby was on it for a long time his biggest side effect was sleep problems. Hopefully you'll be well on it but if not after some time let them know so can consider something that suits you. All the best
The speed of your Neurology Service, is incredible ! I'm hoping to have April 2024's consultation during 2025, was notable that on seeking Private Medical Care in 2024, they may have moved 2024's appointment forward to spring, 2025. Have been trying via GP's & above, to have a change to medication for about 4 months.
Would you ensure you insist on tapering Lamotrigine from a very low dose etc, etc. Personally I've found that the medical belief that medications are adjusted to in days, on uptake and/or withdrawal, has been nonsense, it's worth taking it slowly
🙂 I’m already a ‘longstanding patient with Neurology ..re Cerebellar Ataxia. My next review is 2025. I’d had a serious fall in December 2024..linked to a DeJa Vous episode…so I contacted the relevant Neurologist Secretary and requested a ‘call-back’. At my last review (2023)..I’d been given the option of restarting Epilepsy medication..I was undecided at the time.
I’m advised to start Lamotrigine…25mg od for 2wks..increasing to 50mg bd..if no rash develops.
Levetiracetam…had been considered..but dismissed because it can trigger depression.
Carbamazaphine Retard..had triggered Iritis and chronic eye problems for me.
Sodium Valproate..didn’t agree with me, can’t recall why.
🤔In my experience..it’s always worth contacting the Appointment Line, and saying you can take a cancellation at short notice.
🙄I’ve been trying to contact my GP re the copy letter..and (surprise surprise) no reply from the Health Centre.
Only a recorded message saying put any request online via ‘Anima’…….but it won’t accept my ‘user name’….🤯😤
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.
Out of interest, what medications have you tried ? Would be particularly interested in any experience with Lamotrigine, Brivaracetam and Lacosamide. I'm lucky, tend to black out for Hr's, but only periodically. Having szr's on an irregular basis, must be incredibly limiting (Nb. Had this months batch, this week, nothing more than Hr's asleep ! Hope last night the last for next 20 days !)
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