[Phidippus]

This past year I started developing some very strange headaches and have had two seizures. During the headaches I will experience strange thoughts and changes in affect. I have had EEG on 3 separate occasions and nothing has been found. My neuropsychiatrist suspects tle/fle and so far, both of my seizures this past year have been very FLE in nature - limbs flailing about and everything.

So far I've gotten psycho on most of the anticonvulsants they've given me - Lamictal, Trileptal, Lyrica, Benzodiazapines, Topemax...Should I even be on an anticonvulsant if I've only had two seizures?

My concern is that I have TLE and that somehow my thinking is affected. Does anyone here have temporal lobe epilepsy and what are the differences in your thinking on and off medication?

[RhiannonsMoon]

Hi Phidippus,

I have TLE and I have more physical symptoms than psychiatric. However at onset stage when I was really bad, I did get quite annoyed with people because I thought I was speaking quite normally, and behaving normally, when in fact I was staggering round like a drunk on pay day, and slurring my speech.

Then I would pass out, especially when at the computer. My head would bang into the monitor, desk, wall then floor, and I'd wake up there some time later. After that I would sleep for up to 12 hours (and called lazy by my ex husband, another reason he's an ex).

I don't go off the medication now because I just get too unwell and have too many sz's, it's just not worth it. I used to miss doses at the beginning and I would have quite strange things happening. I couldn't even take multi-vitamins without having problems.

I still have sz, though they're not as bad as they were when they came back (head injury as a child sz, then 2 more episodes and full onset in my 40's).

Once you get the right medication (that can take quite a while to work out), things will settle and you'll be glad that you are on the medication.

Hope all goes well, keep us posted,

Rhiannon

[Porkette]

Hi Phidippus,
Welcome to the forum! I've had TLE for 37 yrs. and just like you I started out by having bad migraine headaches. This in turn lead to absence, and complex partial sz. for me for many yrs. Then about 2 yrs. ago I started to have clonic sz. where I would fall, hit the floor and thrash around. This past August my neuro put me on Keppra and I haven't had a single clonic sz. since then. Often times people who have epilepsy will have an e.e.g. and it will show nothing and that's because the brain damage or scar tissue is to deep in the brain for the e.e.g. to pick up. Your thinking may be affected by the AED's (sz. meds) or it could very well be that the hippocampus of your brain has gotten hard and begun to shrink this in turn will cause short term memory problems. Also if you use a cell phone this will surely shrink the hippocampus and cause many problems for anyone with neurology problems of any kind. I've been told to stay away from cell phones no matter what. If the sz. are coming from the right TL this is an area that shows a lot of emotions and this could also be another reason why you have the problems with memory and thinking. Here's wishing you well and May God Bless You!

Sue

[waves]

With only two seizures behind you, and "going psycho" when on medication, your question regarding whether to medicate AT THIS POINT is certainly a valid one.

A few considerations:

people who do not have epilepsy can have one or more seizures, and in general do not require medication. However, if you have epileptic seizures, they can be expected to recur, and medication is generally recommended, but not mandatory.

Consider the possibility that you could be having seizures you are unaware of. For instance, suppose you had an absence seizure while driving you blank out for 15 seconds - nothing might happen on a straight road with no lights and no traffic... on the other hand 15 seconds is long enough to drive through an intersection on red and... kersplat. trying more meds would be preferable.

Have you had an MRI? This could help the docs locate any possible lesions or scar tissue that could be causing seizures... and depending on the location, it could help explain your symptoms and get a little closer to what is going on.

Triggers: Can you remember any common elements to your circumstances when you had the seizures, or when you get the headaches? Specific type of lighting/location? food you ate? after physical activity?

the "strange headaches with strange thoughts and changes in affect" could themselves be simple partial seizures. no two simple partials are alike. On the other hand, they could be migraines or other types of headache, which can come with quite a few side dishes, including emotional changes and fatigue. transient changes in cognition occur in some cases.

could you describe your headaches more?
- do you get emotional first - during - after? (or tired)
- how long does the pain last, and would you rate it as mild, moderate, severe?
- does the pain get worse when you move around, or change the orientation of your head?
- does the pain have a throbbing characteristic?
- are they unilateral, bilateral (or describe what part of your head is affected)
- are they accompanied by any changes in your limbs (again one side or both?) - examples numbness, tingling, weakness, limpness.
- changes in vision? (describe)
- droopy eyelid and or tearing?
- speech difficulties? (describe)
- do you get nauseous?
- can you give an example as to how your thinking is "strange" during these episodes?

I do not have epilepsy but i have taken various anticonvulsants... i have had migraines since adolescence and bipolar disorder. I had to do a bit of a merrygoround of AEDs for the Bipolar and now take Depakote which, in the higher doses, helps prevent the migraines but not completely. I notice it is not among the meds you tried. I have had different kinds of migraines including a really wild one where i almost passed out. I also have photosensitive reactions. I have read a lot on migraines, so i might be able to give you some feedback there.

I have had bad reactions with some meds - not so much AEDs, nonetheless i can sympathise. But there are a fair few options out there.

The place to start though is really to try and narrow down as much as possible what is happening to you, as that will also determine which medications might be most helpful. All AEDs are not created equal, and neither are seizures.

One final thing on EEGs - did you have a simple one, one during sleep, one with flashing lights? the flashing lights one might turn up something since, if the headaches you are having are in fact migraines, you are most likely somewhat photosensitive and with any "luck" have a seizure on EEG if you did that type.

i know, i asked more than i answered. but i think there are many possibilities and i feel that further investigation is needed for you to make a safe and informed choice.



~ waves ~ wishing you well.