New here - hopefully someone has the same kind of seizures I do

[annietn41]

I was diagnosed with simple partial seizures when I was pregnant with my son - he is 18 now. I take 600mg of Lamictal daily. I have never been able to find anyone with the same kind of seizures that I have and it would be wonderful if I could!

When I get a seizure I get confused - I cannot read words or spell them. I cannot say a lot of words - words like the, a, but, etc. are very easy but get beyond that and I"m lost. It's like I've never been able to read. I love to read and read upwards of 100 books a year and I love to write too. During these seizures I can't spell/write either. One morning I had to write a note to school for my child who was out sick the day before. I started writing it - Please excuse Jessi from........ the next word was school and I couldn't say it or spell it. From that point on I couldn't even say the words and very confused about what I needed to write Sometimes I can say the word but still couldn't spell it then if someone told me - S C H O O L - I would have to tell them to slow down and say one letter at a time very slowly. I am SO CONFUSED during these times that everything just feels wrong - all messed up. During these times I couldn't even tell you what my kids' names are, etc. I went on every seizure medication known to man until finally Lamictal helps. I hate the side effects (memory, blurred vision) but it takes the simple partials away except I still get them once or twice a day. My doctor told me "you are as good as you are going to get". I can't work outside of the house because I never know when I will have one. I couldn't imagine being on the phone and have this hit and all of a sudden not be able to understand what they were saying. I have never met anyone who has these types of seizures and I would love to! I also have abdominal seizures but Lamictal has wiped them out entirely.

Sorry if this is too long!! I have a lot of other symptoms but these are the ones that bother me the most.

Rita

[epileric]

Actually what you described is exactly what sometimes happens to me after a seizure. Sometimes I can't even talk, I'll try to say something (& I hear myself say it) but I"m told it's garbled & makes no sense.

2 days ago I called a cab but forgot where I lived. Thank g-d I remembered my phone number because they then told me where I was. Then I couldn't remember the address I was going to, I just told the cabby there & told him where to turn (ironically I was going to a lecture on epilepsy).

Also, don't worry about your post being long, it's not. I also moved it to the foyer so everyone can welcome you.

[morgan86]

hey, im so sorry to hear how this has troubled u. i dont think i have the same thing. to tell u the truth i dunno WHAT kind i have haha. but i do know i'll go to say a word and the wrong one will come out. random. like i'll say "car" instead of "chair"... or i repeat myself. often dunno whether or not i've said something to my husband so im afraid to ask. then i get the "u already told me that"hahaha isnt having e wonderful (sarcasm). its all a buncha bull but i love this site cuz everyone is so helpful. i hope u can find the same kinda help as well. together we'll figure u out .hehe or atleast point u in the right direction. best of luck
-morgan :-)

[C0urt]

happens to a lot of us.

[Nakamova]

Welcome Rita!

There are folks here on CWE who have simple partials -- I'm sure they'll chime in. I'm not one of them (tonic-clonics are my thing), but I'm sympathetic to the Lamictal side effects. I've got the blurry vision, and memory stuff too, along with a few other annoyances. One thing you might try is keeping a seizure journal. If you can track things like sleep, diet, metabolism, stress, activity, hormones, etc., you may be able to isolate and avoid potential seizure triggers, and perhaps reduce your medication dosage.

Best,
Nakamova

[gigi]

Hi Rita-

well you have come to the right place to help solve some of your brain dilemmas. Welcome to the site, and I hope this helps you with answers. With there being over 40 different types of seizures, we need all the answers we can get! This is the only web site I go to for my epilepsy, I have put the others aside for this one. Good luck!

[Chris515]

Hi Rita,

Yeah I have had that happen to me. For a few months whenever I had a simple partial I wouldn't be able to speak properly afterwards, comprehend what people were saying or even read properly. But after that, my simple partials went back to how they were before - memory problems afterwards.

So I can relate to what you are going through... and the lamictal side effects. They are annoying but not as bad as tegretol was for me.

Well welcome to the site!

Chris

[alivenwell]

Welcome! I've had excellent results with Lamictal as well. I'm on a lower dosage though. Did you recently switch back and forth between the brand name Lamictal and generic Lamotrigine? That can cause breakthrough seizures.

For me, stress is a really big factor. And, lack of sleep or any illness can cause a seizure. I totally agree with the journal.

I walk my border collie several miles every evening to keep stress away. It helps me.

[Deb]

Hi Rita-

well you have come to the right place to help solve some of your brain dilemmas. Welcome to the site, and I hope this helps you with answers. With there being over 40 different types of seizures, we need all the answers we can get! This is the only web site I go to for my epilepsy, I have put the others aside for this one. Good luck!

wow, I didn't know there are forty different kinds of seizures. i have been trying to a get a descriptive answer of what kind of seizures there are, and how they make you behave. I have a good doc, but he is not the kind that describes well. hopefully by joining this site, i can learn a lot about this condition.

[RobinN]

Hi Rita - I do know there is some confusion for my daughter though her issues for the most part is memory loss. She can't remember what occurred hours before the seizure happened. Makes school difficult. Luckily now that she is med free and her nutrition is much better , we are seeing far fewer seizures.

Types of seizures are listed here:
http://www.epilepsyontario.org/clien...f/web/Seizures
left hand side of the page.

[Loudmouth]

HI! I know exactly what you mean, my kids call them my 'brain farts'. Not very polite, but it explains it to a 'T'. It's the most frustrating feeling in the world, knowing that you SHOULD know the word you're trying to get out, but it just won't show it's face from where it's hiding in my brain....I often get so angry at myself because of it. I usually end up saying errr...thingmyjig, and the kids have to play 'let's guess what word mum means'...

On a more serious note, I think it's just connected to having complex partial seizures, I've kind of learnt to live with it over the last 6 yrs (TODAY!!!) since my diagnosis.

[fifi74]

Hi Rita,

I think I am having very similar symptoms to you, but I am still undergoing testing for epilepsy at the moment so don't have a definitive diagnosis as yet.

For a year or two now, I had occasionally (say once or twice a week) been having trouble reading something. It could be something I had written, or was trying to write, or just something I was reading. The experience is that I look at the sentence and I know it's words but it doesn't make any sense to me. I try and sound it out but I just can't. It's like my brain is frozen, but I am lucid enough to say to someone I can't read this or spell it out. It might last for as little as 15 seconds or it might last for a minute or so. More recently I am having one to a few of these per day, they certainly seem to be increasing! If I think about it I think I may have been having even smaller versions of these for years, but in that case it was just single words and usually very common ones (eg. "and" or "the") that I couldn't understand. But I just put all of these language issues down to being tired, not in my wildest dreams did I think it could be epilepsy!! Like you I'm a voracious reader and my work involves qualitative research and writing activities, so the loss of language at times is quite frustrating and becoming increasingly worrying.

More recently, I have had two tonic-clonic (grand mal) seizures (they happened a little over a month ago) where I lost total consciousness and behaved very typically for that kind of seizure. These landed me in hospital, and from that I have now just started to see a neurologist and am having various tests performed. I've had an EEG, which apparently showed alot of epileptic activity in my left temporal lobe and last Friday I had an MRI, the results of which I'll get when I see my neurologist this week. Prior to that I had a CT scan and blood work checked in hospital, which showed nothing.

Since I had the tonic-clonic seizures and have been put on medication (epilim and tegretol x 400mg each per day) I have also been experiencing other language issues that weren't occurring prior. A few times a week I struggle to understand what someone is saying to me. Again that can last from around 15 seconds to a minute, and while it is happening I can say to them "I don't understand you, keep saying what you're saying because I will in a moment", and sure enough it passes and I can understand them again. More infrequently I am unable to say something to someone. It could be a word or a sentence but at times my brain just can't spit out what I know I need/want to say.

I'm hoping my visit with the neurologist this week will shed more light on this, and I'd be happy to post what I learn here for you in case it helps.

On a different note, this site has been fantastic for information, advice and peer support. I've been a little reticent to offer up my experiences to others as I really don't know much about my condition as yet. But when I saw your post I just had to as what you are experiencing seems so similar to what I've been experiencing.

Anyway, best of luck and I'll provide more info after I see my specialist this week.

Cheers,
Fiona

[occb]

Hi Rita,

Welcome to the forum!

My partner is awaiting a neurologist appointment where, hopefully, we'll get an answer as to if it's epilepsy or not. He experiences what you do -- at first we thought he might have a form of dyslexia that got worse when he was tired, but as time went on, we discovered that his symptoms didn't really fit with that, and sometimes come in conjunction with other things like laughing or crying at inappropriate times, mysterious abdominal pain and other bodily/sensory sensations.

Despite these symptoms, he has worked out of the home, but has had to deal with disparaging remarks about his intelligence People can be so horrible. On the plus side, he always found physical jobs, like landscaping, gardening, or working in a warehouse to be the most flexible with his condition -- the pace of work was less hectic, and there were always long periods of no discussions with other people.

[Bernard]

Hi Rita,

We have another member here who was diagnosed with dysgraphia and that sounds like what you are experiencing when you are post ictal. Have you mentioned the dysgraphia to your neurologist?

Dyslexia and dysgraphia of various kinds are recognized sequelae of cerebral lesions. Although refusal to read or write may occur in a number of psychiatric disorders, to our knowledge dyslexia and dysgraphia as the sole manifestations of a psychogenic disorder have not previously been reported. Our patient had psychogenic symptoms, initially including seizures but subsequently consisting solely of dyslexia and dysgraphia.

Seizures, dyslexia, and dysgraphia of psychogenic origin

Emphasis mine:

A male presenting with benign partial epilepsy with rolandic spikes from the age of 7 years was evaluated at age 11 years for worsening of his epilepsy associated with a specific regression of graphomotor skills. A longitudinal study over nearly 2 years showed an improvement in handwriting to an almost normal level under modified antiepileptic therapy. A detailed analysis with a computer-monitored graphics table showed at first a rapid improvement of skills followed by protracted slower progress. We argue that the initial rapid recovery of skills was directly linked to the improvement of his epilepsy. The slower late acquisition of motor programmes that had never been fully established was due to long-standing interference by his epilepsy. The specificity of the deficit within the graphomotor system and its possible neurobiological basis are also discussed. The analytical method and approach used in a single patient might provide an example for other patients in whom epilepsy can interfere in the acquisition, progress, and maintenance of new skills and can be responsible for selective deficits.

Acquired epileptic dysgraphia: a longitudinal study