To ask about petite mal seizures.

[Elmo27]

About 9 years ago I had around 30 petite mal seizures (or temporal lobe seizures) over the space of a year. They stopped suddenly, but since then I’ve had maybe 1 a year. Recently I’ve had them more frequently and today I’ve had 2. I was referred 9 years ago to a neurologist and had an MRI scan, EEG’s (a normal and a sleep deprived one), CCG’s and all looked normal. I was told it was possible I was epileptic, but that unless they caught me having a seizure it was impossible to tell, and the doctor was reluctant to diagnose me as of the repercussions of such a diagnosis. I’m not sure why the episodes stopped coming so frequently but they did, and in all honesty I gave up battling trying to find out what they are. I have never had a grand mal seizure.

What happens usually does so in the shower, or just after I’ve gotten out. Although sometimes they happen randomly in other places and the one I’ve had this evening was sat downstairs on the couch. First I feel a very intense and intrusive sudden feeling of deja vu; like I’m trying to remember what film I’m thinking of or somewhere I’ve been, but I can’t put my finger on it. The more I try to remember the further it fades, and I’m filled with this absolutely awful feeling of dread and fear. I also smell a very strong chemical/burning smell that I can’t place what it is l, but smells familiar. As the fear and the smell fades I’m then left retching and feeling very weak with a stomach like a washing machine. I then feel very tired and drained. The whole experience is absolutely terrifying and leaves me feeling very shaken.

I'm just interested to know if anyone else has had or knows anyone who’s had anything similar. I feel like I’m starting to get them more often again but don’t have it in me to try and fight to find out what it is.

I have also in the last year (aged 32) been diagnosed with ADHD, although I’m not sure this would have any connection to be honest.

Any experiences would be appreciated! Thanks

I have temporal lobe epilepsy and my petit mal seizures are exactly the same as yours. Intense deva ju, feeling of impending doom, cannot speak or understand what anyone else is saying if they’re talking to me, can’t understand the thoughts in my own head. They would usually last around a minute and then I’d have a headache for a few hours. Sleep would help as would a sugar kick! My last one was around 8 years ago. Alcohol definitely made them worse and more frequently as would stress. They were generally just before my period and I would have about 2 a month before I was medicated. I have been on my current medication since then and fingers crossed remain seizure free! I am glad I was diagnosed because I needed medication to stop them. The neurologist said they most likely were the result of scarring I have across my temporal lobe from a number of convulsions I had as child when I had a temperature. I would push for a diagnosis if were you x

i don’t have epilepsy but used to work with people who did and your experience sounds classic of this type of seizure. I’d definitely suggest revisiting a diagnosis as meditation could help.

I have temporal lobe epilepsy. This is exactly what seizures are like.

Also - sorry to say this - you really, really can't drive. You need to be seizure free (I'm on Tegretol) for at least a year first.

I was just going to ask about driving! It doesn’t sound safe if you could just blank out like that.

Thank you! It’s really interesting to hear this experience is exactly the same as people who have been diagnosed epileptic. When I was having lots of tests it was so frustrating as all of them just kept coming back normal and I felt like I was going mad. I think the stress of it was making them come far more often and once a brain tumour was ruled out they stopped coming so thick and fast.

For me to have 2 in one day is extremely unusual for me and I’m wondering if my ADHD meds which I’ve been taking for a month now possibly have had an effect or if this is just a coincidence.

Also, luckily I’ve never actually managed to pass my driving test so no danger of me driving at the moment!

I didn't have tests. I described what had happened to a consultant and was diagnosed on the spot. They did a MRI, but acknowledged it was pointless unless I had a seizure in the 30 mins it took.

I also have ADHD. I am not medicated for the same. A lot of meds are incompatible with epilepsy.

I experienced the same thing a few years ago for about 6 months. The deja vu and then just feeling a bit lost and sad in a strange way. I lost my driving license. But I decided not to go on medication and they just stopped and I have never experienced it again. I am really interested that some of you are mentioning ADHD as I have started to wonder whether I might have it.

That’s interesting they didn’t need to catch any unusual brain activity to diagnose you. I remember feeling like the odds were against me that I was actually going to have one whilst these tests were taking place.

I a reading now there does appear to be a link between ADHD and epilepsy but I don’t know much about this at all.

In the first instance, you need a diagnosis for the epilepsy. Whatever 'repercussions' envisioned are redundant; you need medication.

When I was having seizures, if I took a different medication I’d not taken before or if I was ill that would often cause more seizures too.

I had never heard of petit male seizures until about 5-6 years ago. I am pretty sure I had these for years but never thought they were a thing. I haven't had them for over a decade or maybe two decades.

Intense deja vu. A sort of sound in my head like many many voices. Some slow some fast. I could never catch what the words were. Somewhere between sound and feeling. They came with a sense of having done this before. Sort of zoning out for those moments. They would come in clusters and then none for months.

Does this sound like petit mal?

They don't necessarily need to catch you randomly having a seizure. They can (sometimes) induce them during testing, if you're prone to them. Or they can diagnose on a case history.

I would push for testing or medication.

Yes, could be.

They tend to call them partial or focal aware seizures these days, in case you want to Google, and there are many possible symptoms. Deja vu, zoning out, and any form of hallucination/ distorted sensory feedback are classic.

ADHD and epilepsy often occur together. There are safe combinations of medication. So keep investigating

A friend suffers from these. If you fancy a read about his experiences then I highly recommend his book:
Small Malcolm Grows Up amzn.eu/d/0XODhS5
It's a mixture of sad, funny, and informative. He's a really lovely person, so his seizures can be very surprising to people who witness them and he is understandably horrified when he learns what has happened afterwards. I knew a bit about petit mal from things he had told me, but I still learnt a lot from his book.

My son (3) is epileptic and he has all different seizures. He is always worse when he has cold/cough/flu type things. Have u been feeling run down?

Its difficult to know how he feels before and after as he cant tell me but he is always shattered and often vomits straight after these type.of seizures.

Yes I have epilepsy and they sound exactly how I experienced petits mal seizures.

I would push for a diagnosis as the seizures can/may keep getting worse until you have grand mal.

I was never diagnosed by scans or EEG but have had a seizure in front of my neuro, though after I was on meds.

It can take some time to find the right medication.

Also if you haven't completed your family there are a limiter amount of drugs that are safe to use so make sure to talk that through with the consultant.

I'm now 6 years seizure free so it can be medicated

@Westenra if I haven't had any for well over a decade would that mean anything? Can you out grow them? Can they be triggered by hormonal changes like menopause?

Medical secretary here. You need to be referred to a neurologist for a diagnosis and advice on medication . Either get your GP to refer you to NHS one (which may be a very long wait) or see one privately (though look for one that includes epilepsy as one of his special interests).

And, as others have said, the DVLA say you must not drive until you have been seizure free for one year. You then have to apply for your licence back and your treating doctor has to complete a form that the DVLA sends him before they let you have it back.

Sounds like the same auras I get, a distinct deja vu feeling and to me it's like I'm flipping through the racks they display posters in looking desperately for something I can't find. Unfortunately for me it's then it's usually lights out and I come around a short while feeling very disoriented.

I've been seizure free for 5 years now and take Keppra twice a day. I do sometimes get the creeping sensation that used to happen first and occasional waves of euphoria.

Yes - they can be triggered by hormones.

They can also (focal) fall off as you come into your twenties, or intensify/ appear for the first time around your forties. Other patterns perfectly possible, but these two aren't unusual.

Once you are two years seizure free I don't think anyone would investigate unless they start up again.

Thanks for all your responses. I am going to make a doctors appointment and ask to be referred again about these. Hopefully can try and get a diagnosis even if tests come back normal (or perhaps without them at all!)