Temporal lobe epilepsy.

[Falcon]

I'd appreciate hearing from anyone about their experience of Temporal lobe epilepsy.

My mother is awaiting a diagnosis of epilepsy after having two grand mals, several partial complex, and numerous partial simple seizures.

She's only just told me about hallucinations that she has been having,and feelings of doom. She has so many symptoms of temporal lobe epilepsy that I'm almost positive that that's what her problem is.

We're going to see a neurologist next Wednesday and will hopefully be able to get a lot of information about temporal lobe epilepsy and an opinion on it but in the mean time it'd be helpful to hear from others who have it.

Thankyou in advance.

[Meetz1064]

don't have temporal lobe epilepsy, but there are a number of others on here that do. However, here is a link that will help you to better understand temporal lobe epilepsy in the meantime....

TEMPORAL LOBE EPILEPSY

The others should be around soon, just give them some time....

Take care.

Meetz

[Cint]

Hi Falcon,

I have temporal lobe epilepsy and have experienced simple partial, complex partial and tonic/clonic (grand mal) seizures. I usually have an aura, or a warning, feeling like the world is coming to an end-- gloom and doom! For me the world starts to slow down, everything is suddenly in slow motion, and the sounds get louder and louder to the point where I can't stand it and I know if it's going to go into a grand mal if I hallucinate or "hear" a voice. I usually don't remember a thing. If it's just a complex partial, the family says I just stare at them when they speak to me and mumble something that they can't understand.

[jimijimenez]

Hi Falcon Im a temporal lobe epilepsy, I hallucinate and have a "doom/impending death" aura, amongst other stuff
It took me 20 yrs to find temporal lobe epilepsy as a cause of my lifelong hallucinations, depression, anxiety and associated psychiatric problems. And once it was suggested by my GP, it seemed a rather obvious fit.
It might take a few EEG's to get a affirmative diagnosis, and i had to persist and get a 5 day eeg, in which three seizures were recorded, and i was subsequently officially diagnosed (although ofcourse it was obviously temporal lobe epilepsy to my GP and friends all along). This period can take a while, so hang in there!
temporal lobe epilepsy in particular is not always easy to diagnose and treat.
She might also have feelings of isolation, due to the nasty subjective experiences being just her own and not always tangible to others around her. Forums such as this can help, (I no longer feel the "freak" I did some time ago) and if you can coax her onto a site such as this it may help (or may not!)
anyways its a good forum here, and if your mum finds it hard to talk to you about her problems, we might be able to fill you in a bit on associated problems and treatment options,
Your a good son Falcon! any questions just ask.

[sicily726]

I have temporal lobe epilepsy, simple partial, complex partial and tonic/clonics. I've gone status twice. We have what is called, "familial temporal lobe epilepsy." This means it runs in my family. I am the eldest of 7, and I have 3 grown daughters and 4 grandsons. Three of my siblings and I have temporal lobe epilepsy; one of my daughters has temporal lobe epilepsy; and we now suspect another of my daughters has it, as she ended up in an ER recently with what they believe was a seizure. Needless to say, we're watching out for it in my grandsons. One of my daughters who does not have temporal lobe epilepsy has a little 2 year old who fell down while my daughter with temporal lobe epilepsy was babysitting him--out cold, just like that! So, my daughter took him to the ER and gave them the history of temporal lobe epilepsy in our family. They did the EEG and so far, they say he does not have it. I have "olfactory hallucinations" from my seizures--I smell stuff that simply is not there. My brother has visual hallucinations from his seizures, and my youngest sister has auditory hallucinations from her seizures. Everybody's seizure experience is a little different, although some things are common. And everybody's experience with various medicines and treatments are different. My brother, my daughter and I cannot take Tegretol, but my little sister can, for example. I, my brother and my daughter all stopped the drugs due to side effects and/or severe reactions. I, however, had to go back onto the drugs again because my seizures worsened, and became more severe and debilitating over the years. I don't know about your loved one, but I find my seizures to be terrifying experiences and I am even more afraid of the drugs. So, if your loved one is anything like me, she will need lots of love and support as she journeys through the experiences of seizures, diagnoses, treatments, etc. My little sis and my daughter also find their seizures to be terrifying; but my brother actually likes some of his seizures. So, you see, everyone is different. My little sis has great seizure control with Tegretol, and tolerates it well; whereas my brother, my daughter and I had to stop it due to severe reactions and debilitating side effects. In fact, the neurologists nearly killed my daughter when she was 4 with near-lethal doses of Tegretol and Dilantin. She got toxic levels of both drugs, and nearly died of liver failure from it! Needless to say, I flushed those drugs down the toilet, and refused to let them near my baby again for a long time thereafter. Years later, she took a very low dose of Tegretol again when she was pregnant with her second son (she has 3 boys now) because the hormonal changes of pregnancy made her have more seizures during that pregnancy (just like I had had during my pregnancies!). Again, she had to stop taking it due to side effects. She continues to suffer from untreated seizures to this day. I did, too, til taking the drugs again. Although I've better seizure control now than ever before, I want to stop the drug I'm on due to intolerable side effects. My brother continues to suffer seizures because, so far, he hasn't been able to tolerate any drugs they've tried. And so we all trudge this road. As I understand it, some people do swell after finding the right drug or drug cocktail. Others do not. No matter what, however, my and my family's experiences suggest that love and support from family and friends is the most potent treatment. And, frankly, this forum has helped me tremendously!

[stilldancing_98]

I have temporal epilepsy. I had it removed and the epilepsy moved to the other lobe. So, I have all the seizures thru the years. But I think what you should do is go to an epileptologist instead of a neurologist. That is just an opinion. I have had this since I was 10 from the chicken pox. My son has epilepsy also. I am 44 now. I think you will do fine. This is a great place to be. Epilepsy is like any thing else. Attitude is half the battle. If you keep a positive attitude you are already halfway there. Teresa

[Torak]

I've had temporal lobe epilepsy all my life.

The seizures fall into several groups.

First, there are simple partial seizures. These are generally only a very clear note ringing in my left ear (I tried and failed to find this note on my guitar). It breaks my concentration and is annoying but that's all, thankfully.

Complex Partial... First a buzzing inside my head like static from an old CRT tv screen, then confusion, inability to speak and patchy recollection of the events. I cannot undertstand what people say, and sometimes amnesia and panic attacks happen. I can't stand being touched when this happens, it makes me freak out. I'm uncertain of how long this takes. It also tends to distort my vision, I can't view distances correctly and this makes everything look really wrong.

I only have tonic clonic seizures in my sleep, apart from 2 times. Once at uni and once in the middle of the train station at Charing Cross in London.

I also have prodromes. One doctor at Kings College Hospital was doing some research and told me that only 1 in 20 epileptics have prodromes.

It starts between 2 minutes and 5 days before the seizure. It starts as a feeling of both lethargy and depression, getting more and more intense. My parents and sister notice this as I tend to get very irritable and stop talking to anyone.

Then I start to lose touch with the world a bit. Paranoia attacks, and I tend to turn nasty unless left alone.

TBH I find the prodromes worse than the seizures in some ways, as they tend to occur even before the really small seizures.

These mood problems are one of the reasons I've stayed a bachelor, I don't feel I have the right to place this problem on someones lap.

I'm hoping that VNS will fix this (waiting for my appointment to come through).