Should anyone happen to know anything about epilepsy...

[AntiLove_SuperStar]

...I do too, but I have a new related problem. I've put this on a specialised forum and I've seen my Dr recently as I've included, but on the offchance anyone here knows anything...I figured I could try!

 

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I had a all-out, tonic clonic when I was 14. However, I was exercising in a hot room and it was my first, so it was written off as one of *those things*.

 

I had a lot of depersonalization and deja vu in my early teen years, which I only JUST recently realised may have been epilepsy related..I thought it was a psychiatric disorder. However I also have Bipolar I (diagnosed at 17, declined meds) and had anorexia (no longer, recovered at 15..now recovering from ED-NOS! I have a few things wrong in the top storey.)..so who knows?!

 

ANYWAY.... Later, when I was 18, I had 3 more tonic clonics in a year, unprovoked, approx every 4 months.

 

I went on Lamictal July 2007. I had racing thoughts and extreme anxiety as intial side effects but it settled. Everything was ok. I have had NO TCs since, touchwood, so thats good.

 

December 2007..my Dr and I talk about the deja vus I have, several a week, and wants to up my dose to 150mgs/day from 100mg. On HER ADVICE (gosh, I should have researched) I went up 50mg overnight. Bad bad idea. I got intrusive/rushing thoughts, gained 7lbs in a week. Dropped back down to 100mgs again promptly, vowed to try again in 2008.

 

March 2008...I increase it to 125mg/day in another anti-deja-vu attempt. I can't cope with the same side effects as ^, so keep it to 125mg/alternate days, 100mg alternate days. Seems good, okay.

 

April 2008...find out I shouldn't be taking TWO Yasmin BC Pills a day as advised by another doctor, because it interferes with Lamictal, not other way round, as was previously told. So I take 1 pill a day.

 

May 2008 (sorry for length)...have bleeding as hormones iron themselves out, yuk (tmi, apologies). HOWEVER..the big issue is that as soon as Yasmin levels even out, Lamictal in bloodstream appears to rise, because I now have the *thought side effects* again.

 

The real problem...is this a side effect, a variation on what happened the previous times I increased the dosages, or is it seizure activity? My Dr doesn't know, and if it doesn't resolve in 2 wks its back to the neuro for me.

 

At least I'm not having the deja vus anymore! (And they were much more frequent/intense than any neurotypical person I've ever heard describe, ie they were seizure activity). This Lamictal is doing SOMEthing, for sure.

 

But what happens right now is this:

 

Usually when I'm tired or anxous in the evenings, most days right now, I'll be going along happily/normally enough, then a scene from my childhood memory store (always my childhood, 90% time, childhood holidays, mostly neutral/happyish memories) will flash through my brain for a couple of seconds. It freaks me out. It is totally random. Sometimes I panic about it which does me no good, because then its like my brain fishes for more. When I get a few in quick succession I think its because I subconsiously trigger it by worrying about it.

 

But when I'm not worrying about it, they crop up anyway. This is not great. Its sort of disturbing. Sometimes my thoughts race but I'm used to that, this is new. I don't have any emotional flashbacks, its just pictures. I get worried afterwards though, I'm a major hypochondriac.

 

I'm tired of it, I feel like having gotten rid of the TCs I have to sort out the Deja Vus, and NOW I've got this to kick in the butt?

 

I'm dropping my Lamictal back to 100mg/day again which was fine before. Hopefully thatll do something?

 

Any anecdotal input? Simple Partial or side effect? or ..?

 

I had a EEG last year and an MRI...latter was clear, EEG showed photosensitivity/activity. My diagnosis is Generalized Primary Idiopathic Epilepsy, which seems to mean based on conversations with my neuro that *your brain is screwy for no tangible physical reason, and you've had some big fits and could have some small ones too...you're just quite epileptic really*. Well, true.

 

 

Anything anecdotal is appreciated. Or minor internet links of a very niche nature - I have read just about everything accessible through major search engines on temporal lobe epilepsy. And other epilepsies.

 

Thank you all.

[Nixee]

Oh dear...

 

Your post really hits home with me AntiLove, as I feel like I've been in exactly your shoes many times over the past 4 years of my life.

 

I also have epilepsy... TLE precisely, with a couple tonic-clonics in the mix, and primarily simple partials. The deja-vu feeling... the racing thoughts... I get visuals as well... shaky vision, outer body experiences, feel like I'm breaking into a cold sweat, going into a panic, which caused me to intially get diagnosed as everything from bipolar to ADHD until I finally had a big ol nasty seizure and then subsequent EEGs showed nasty temporal lobe activity... followed by more seizures.

 

I can't tell you a whole lot about lamictal, as unfortunately when my neuro tried me on it, I showed signs of a rash right away and was taken off. I have been on Tegretol previously, and I now take Topamax though.. and I can tell you a bit about those.

 

Going through constant simple partials is no walk in the park, and it can make you feel like you are going crazy. Not to mention the looming fear that you could go down at any moment... particularly if you are someone who is a driver, or just if you are in any situation where you are alone or it could be dangerous to you.

 

THEN, on top of that... side effects do come into play.. and living with epilepsy is a constant balancing act... finding the right medication for you, and figuring out which side effects you can live with (because to face facts... all medications have them).

 

It kinda sounds to me like you might need to have a talk with your neuro and let him or her know what you are going through and maybe even talk about a med change (which I know can be terrifying), or at least a dosage change. If you are still having that many breakthroughs, something isn't working right for you, and I am betting your doc will want to either switch, or add something new to the mix. You really should be feeling better than this.

 

As far as the racing thoughts and anxious feelings go... I know when I was on Tegretol, that was never much of a problem for me because it had a pretty good mood stabilizing effect. But on the downside of things, it made me very dizzy and gave me constant headaches, which is why we eventually switched to the Topamax, which is a good one indicated for Temporal Lobe issues. Of course... downsides for that one exist as well.

 

I feel for you... hopefully a medication adjustment will help you soon. Feel free to PM me if you like.

[AntiLove_SuperStar]

I cannot express how grateful I am for your thorough and well thought out response....I'm going to save it to my documents I think.

 

It's always good (well not GOOD...thats not the right word. A relief?) to hear other peoples' stories, feel less like I'm crazy.

 

Have you ever had days when you feel on/off all day..not "out of it", exactly, but like you MIGHT have simple partials at any minute? Like..something underneath the surface of your consciousness?

 

Apologies for making no sense.

 

Back to Dr shortly, probably.

[Nixee]

 

It's always good (well not GOOD...thats not the right word. A relief?) to hear other peoples' stories, feel less like I'm crazy.

 

Have you ever had days when you feel on/off all day..not "out of it", exactly, but like you MIGHT have simple partials at any minute? Like..something underneath the surface of your consciousness?

 

Apologies for making no sense.

 

Back to Dr shortly, probably.

 

 

I know exactly what you mean about it being a relief to hear other peoples' stories... sort of how I felt reading your post this morning to tell the truth, though my heart goes out to you. I hate anyone having to go through this... yet when I describe it, it is nice to know there are others who "get it" at least.

 

And yes... I've had so many off days. Thankfully I don't have as many anymore now that I'm on a medication and stable at a dosage that seems to be ok for me. Mostly I've noticed problems like that when either a) my medication isn't right for me or b) I'm switching meds/dosages. But sometimes... yeah, sometimes things just happen.... hormones go all wonky and weird, diet is poor, just feeling "off" and on come the dizzies.

 

My co-workers are aware of my condition and probably think I'm a bit nutty for the random things I complain about sometimes... but one thing that is a trigger for me is the heater in our building. When it comes on sometimes there is a distinct smell (at least to me), and sometimes it makes my head feel rather dizzy and puts me on edge.

 

Or if I'm having a stressful day in general, that can and will sometimes trigger a small seizure (had a nasty one as I was rushing to get to the airport a couple months back.. ugh).

 

So yeah... sometimes you just KNOW... "today... is NOT going to be a good brain day... "

 

... but still... with the proper medication and dosage, I know you can be feeling better than you have been.

 

Good luck at the doc... please keep me posted.