A.I.B.U to ask g.p if i have temporal lobe epilepsy?

[Thinkyoung]

Just feel i need to remain calm over this but after a quick google may need to ask Mumsnet opinion in case i am being over dramatic. That is not my style normally. I have had about 20 'episodes' in the last year ,as i call them , lasting for a few minutes of very intense, frightening daja vous that i can only explain as reliving a nightmare (but obviously i can not remember the nightmare and at the same time the activity that i am experiencing in real life feels extremely related , and is equally then unsettling too ) . I feel so sick at this point and am convinced that i will throw up in the toilet but never have. I then feel weak for the rest of the day and very tired.

I used to get deja vous a lot as a child but it pitterered out. I never ffelt rough with it though, just wierded out.

Other than that i am generally well. My 40s health check was good. Let me know if i would just need to get on with it- or if g.p would dismiss.

I don't know what it is but I had the exact same thing. About 7 or 8 years ago. It happened maybe 10 times or so over a few months and stopped. Hasn't happened since. I found it really hard to explain what was happening.
A bit like a deja-vu out of body experience and a burst of really bad nausea but no sickness. I would feel odd for several hours, on some occasions I felt like I was 'tapping back in' to the deja-vu and almost voluntarily brought it back on but to a lesser degree.

Sorry, I know this isn't helpful to you!

I have temporal lobe epilepsy and when I have partial seizures, they are very similar to what you describe. I would definitely speak to your GP although unfortunately you might have to push quite hard for a diagnosis - it took me 10 years! happily I’m now taking medication and haven’t had a seizure since.

Yes. I have TLE and it is exactly as you describe - deja vu with panic attacks. I had a big fit coming out of a long brain op and in one of the reviews, was asked if I ever had deja vu. I said I had, like everyone does and wham - you have TLE. Still wasn’t happy to accept it (I felt tricked into saying yes!) but since meds dose age has been sorted, I have only had one episode and that’s when I forgot my meds. That’s the point I accepted it. Be aware you won’t be able to drive for a year after your last episode. (I now don’t pay for any prescriptions - a useful piece of info that I discovered by accident a year later!)

I think you should press your GP to refer you to a neurologist for a diagnosis. (I am a medical secretary and have worked for a neurologist in private practice as a locum secretary for decades). GPs are sometimes not very good at epilepsy or epilepsy diagnoses. If you get to see a neurologist (v long wait on NHS) and they find it is epilepsy (normally would do an EEG and possibly an MRI head to check nothing else going on), they will also advise about whether medication is indicated and what they recommend.

My DH has recently been diagnosed with temporal lobe epilepsy (after having been misdiagnosed over ten years ago and taking the wrong medication for all that time!). It’s well worth speaking to your gp, DH got referred to a neurologist who made the diagnosis and put him on medication. He hasn’t had a seizure for a month now - he was getting them every day! Epilepsy Action is a great website for information and support.

If you've had 20 or so episodes like this in the past year, you should see your GP, regardless of what you think it's likely to be.

Unlike PPs I have no knowledge of TLE so have nothing useful to add on that score, but the fact that you feel weak and unwell for the whole day after it happens, and the deja vu element, certainly suggests to me that it's not an ordinary panic attack and if it happens 20 times a year, that's pretty debilitating and distressing for you, overall.

Might also be worth keeping a diary of any episodes so you've got a record of what you were doing/how you were feeling before it happened? Then you'd have an idea of whether it happens completely randomly or whether there might be some kind of trigger.

Yes, I have this condition also, and my symptoms are very similar to what you describe. I would get this looked into, you might need to get an EEG done. Mine is very well controlled with medication now and does not cause too much disruption to my life.

I would also suggest keeping a "diary" for eg. Every time you have an episode, can you pinpoint a trigger; what had you been doing that day, what time of day did it happen, are you over tired, drunk any alcohol, stressed etc. As a consultant may ask you to do this.

Thank you all ! I keep doubting myself , thinking that it is literally all in my head so i should make that call really but put it off in fear of sounding hypercondriac.

Hi @Thinkyoung did you manage to contact your GP to ask? My history is a bit all over the place but the gist is that I was diagnosed with TLE 2 years ago, it presented very strangely and sort of backwards that I had some generalised seizures which then settled & then started having partial seizures almost daily. Exactly what you described with the feeling of dread, it's like knowing something absolutely awful is about to happen & really exhausting, the sick feeling too. I had a CT scan & was also put on meds which instantly made a difference. I had a bit of a challenge being put on an additional med when my first stopped working & paid for a private consultation (best £150 I've EVER spent), but I know that isn't an option for everyone.

Push your GP for some action, it is a really horrible experience & I don't think people realise how overpowering it is until you experience it. Best of luck.

YABU to ask your GP if you have temporal lobe epilepsy. It needs to be diagnosed by a neurologist - your GP isn't qualified or trained sufficiently to diagnose this. YANBU to go to your GP and ask for a neurology referral (and you should).

I have it, definitely sounds like what you are describing. I never bothered going to the GP though. I didn’t want medication and didn’t want to have to declare it on every travel and life insurance policy application I made and pay extra.

It’s not true that you won’t be able to drive for a year though. Check the DVLA website but if you don’t lose consciousness and your seizure pattern doesn’t change then you should be ok.

DVLA guidance:

OP, it sounds like Déjà-rêvé. I have this, but I have never been diagnosed. My episodes last only 5 seconds but they are often followed by a headache. I don’t get them very often, not even once a year.

www.ncbi.nlm.nih.gov/pmc/articles/PMC6028740/