Deja vu - how serious?

[tendencytodream]

Hi guys - I've been lurking for a while and wanted to ask a couple of questions about your experiences.

I've been taking lamotrigine for around 10 years and it has definitely reduced my generalized seizures but I've noticed a rise in partials in the last year or so. I started Keppra last May(ish) and was supposed to increase to 1000mg (am currently at 750mg/day). It seems to have banished any of the olfactory hallucinations I was having but I am still sometimes having deja vu episodes multiple times a week.
I'm *exhausted* on the meds combination atm, and I'm wondering like, how serious are the partials/deja vu episodes? I'm on a lot of other medications that interact and I'm always reluctant to increase doses, but don't want to go back to the neuro and seem non-compliant.
Do I need to be 100% seizure free? (obviously in an ideal world, yes). Are partials affecting my brain long-term?

I either have deja vu that feels more "normal" - like maybe 10-20 seconds of a familiarity that I've been somewhere/heard something before, or more extreme times when it's 30+ seconds where I have an intense feeling of power and premonition - like I'm in omniscient almost and aware of everything that's to come. Idk what is considered "normal" with regards to deja vu sensations.
I've never known if my generalized seizures start this way because I don't remember the time beforehand.

So I guess I have two questions:
1. How would you describe your deja vu experiences - if they're "normal" or seizure-related?
2. For partials, how many side effects would you put up with to reduce them?

Obviously I want to ask my neurologist these questions, but he's behind with his clinic so it could be a few months before I see him, and you guys seem like a good group to ask

Thanks in advance, and hope you all have a good weekend!

 

[knothing]

Welcome tendencytodream!!

Good questions. I take 3000mg Keppra and 400mg of Vimpat and it has been almost 7 years of that.
Deja vu and absence were my only types of seizures for over 30 years, it wasn't until a few grand mals did we discover I had Epilepsy. It was on this site I learned that deja vu's were a type of seizure and when I described a deja vu he said it was a seizure.
Here goes my description of how it feels. Imagine standing in an office looking out a window on a windy day. The leaves are turning, a plane is flying by, people are talking, typing and phones are ringing. Now imagine that for 20 to 30 seconds that everything has happened exactly identical as before, every key click, word, and leaf turning. All at once being the same it was before but while telling yourself that it is impossible. Almost like you are trapped in the unreality of it all. Best way I can explain it and obviously many people have asked since that is a bit rehearsed. Funny part is over a year ago I had a normal deja vu(one little item seemed like it happened before not the world) and I was so happy and excited....okay maybe that is sad.
I do have partials and the medications don't make them 100% go away but they are so rare and since I went to generic keppra the deja vu's have gone down. Don't know why but I imagine it is how my brain is reacting to the formulation. Are my side effects worth it, I think so since the grand mals haven't been around in a long time, plus I don't push myself. My side effects are some dizziness (depends on day), occasional anger issues that are all Keppra (I get angry but Keppra aka Kepprage is a bit different), and the worst side effect. Somehow the combination has made me allergic to oranges, tangerines and grapefruit in fact lemons and limes are the only citric I am not allergic to. So much stuff is made with oranges it is a tough change.

As for the increase it is best to work with your doctor on the interactions but if you had been on 750mg it is more likely that the increase of 250mg will not create issues with the interactions. That is just a thought since in the end you are the final decision maker with a doctor consulting you. As for how serious, whenever my deja vu's kick in I go take a nap because it is my brain telling me it is time to stop and sleep for an hour. I hate it but it always works for me. My smaller seizures are the warning to my body that if I push it I will get worse.

Good luck on that appointment and waiting is a hard thing to do with this.

 

[tendencytodream]

Thank you so much for your response - I have a lot of people I can talk to if I need to but no one that totally gets it, if you know what I mean.

I think I've been the same with the deja vu. I didn't realize it was an issue until the other issues (ie generalized seizures etc. were under control)

Your explanation makes so much sense to me. And for me there is a sense of excitement, or like, exhilaration. There's something magical about having seen everything before but feeling like what you're experiencing is impossible. In some ways I guess that's why I'm reluctant to give it up.

The medication increase of 250mg makes sense - it's probably not a huge difference from what I'm already on, and I've had no problems with mood changes like I know a lot of people have had.

Thank you, again <3

 

[Topcat]

I've always had a lot of Deja Vu with the seizures. I know my epileptologist is concerned about the long term effects of partials but I doubt if that has anything to do with the Deja Vu experiences.

 

[Janus]

I've had deja Vu. Often with seizures. It's going usually as a deja Vu starts a partial.

 

[Porkette]

Hi tendencytodream,

I've had deja vu often before going into an absence or complex partial seizure. I will get a nervous feeling in my stomach and see colors flashing back and forth in my eyes, often that will go into a full seizure. I was told by my neuro back in the 1970's that the moment I got this feeling to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and if I did it quick enough it would stop the seizure and this has worked great for me many times. What's happening is the neuro transmitters in the temporal lobe are firing up and effecting the hippocampus of the brain which in turn triggers the deja vu and sometimes leads into a full seizure. Here's wishing you the best of luck and May God Bless You!

Sue

 

[N Sperlo]

I remember having deja vu since before I was diagnosed. Long ago I remember very short instances where a situation felt familiar. It would last a second or two. I consider that "normal" or similar to that a person who doesn't suffer from epilepsy would have.

As my seizures became worse, the deja vu would last longer and be more intense. I now know this was part of a simple partial seizure. At points it became so bad I was claiming to tell the future. Unfortunately for the side of me that believes in more than 5 senses, I was just speaking gibberish instead of telling the future.

I deal with constant sleepiness, rage, and dizziness. I'm ok with the side effects, but when I get a chance to use something else that I'm willing to try, I will.

 

[Autumn Breeze]

I either have deja vu that feels more "normal" - like maybe 10-20 seconds of a familiarity that I've been somewhere/heard something before, or more extreme times when it's 30+ seconds where I have an intense feeling of power and premonition - like I'm in omniscient almost and aware of everything that's to come.

So I guess I have two questions:
1. How would you describe your deja vu experiences - if they're "normal" or seizure-related?

Ok, first of all :hello:

As for your descriptions, I think they're perfect. My husband and I talked about this a number of times.

Normal is one of those, huh, I remember being in a place like this while this song was playing. It felt like ***insert a strong memory of a great high school memory or summer camp***that day and it was ***awesome/horrible***. And then there is... the phone is about to ring, she's about to ask me for a side of ranch dressing, my boss is about to call for food runners and I'm going to click my pen while closing my order book. Right then a co-worker is going to bump into me.

With that second one, my heart sometimes starts racing. I'm sure there's more but dinner is ready lol.

 

[tendencytodream]

:hello:
Thank you so much everyone. It's really reassuring to know people have similar experiences.
I haven't increased the Keppra again yet, I'm going to see a few more weeks if this tiredness eases at all in case it's just related to me being more stressed recently.



PS. Autumn Breeze - I forgot how much I love that Jason Mraz/James Morrison song in your signature!

 

[Autumn Breeze]

:hello:
Thank you so much everyone. It's really reassuring to know people have similar experiences.
I haven't increased the Keppra again yet, I'm going to see a few more weeks if this tiredness eases at all in case it's just related to me being more stressed recently.



PS. Autumn Breeze - I forgot how much I love that Jason Mraz/James Morrison song in your signature!

Aww thanks! It is definitely my one of my very favorite songs.

I'm on my phone. Expect typos.

 

[Autumn Breeze]

I don't remember does it link to a video or something? I can't see that signature on my phone :/

I'm on my phone. Expect typos.

 

[gymrat827]

i get it, mildly a good bit.

Never having a seizure, but here and there at odd times.

going to a new restaurant with the wife, seeing an old friend, when we went to the race track so i could just watch the cars ( use to race when i still had a DL )

again, odd times and infrequently but always 2-3 times per year.

 

[Ravensong]

I get just the opposite - jamais vu - where everything seems strange and unfamiliar. I've had these for years along with olfactory hallucinations. When I started gabapentin for pain, my olfactory seizures went away and the when I switched to Lamictal from Topamax, the jamais vu stopped. Or mostly.

 

[salsa-mad]

I get both deja vu and jamais vu, but only in flashes. I always say “deja vu” out loud so whoever is around is aware that something is happening, even if nothing comes of it. It rarely leads to anything now, thankfully.

Before I was diagnosed I used to quite like the experience, but now it comes with a feeling of dread and foreboding. I get it a couple of times a month but I haven’t had a seizure (simple-partial / complex-partial) since December *touch wood*


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[Ravensong]

I get both deja vu and jamais vu, but only in flashes. I always say “deja vu” out loud so whoever is around is aware that something is happening, even if nothing comes of it. It rarely leads to anything now, thankfully.

Before I was diagnosed I used to quite like the experience, but now it comes with a feeling of dread and foreboding. I get it a couple of times a month but I haven’t had a seizure (simple-partial / complex-partial) since December *touch wood*


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I get the same feeling of dread/foreboding with the jamais vu. I just thought the whole thing was related to my depression. It's really disturbing for me...

 

[slobbering at night]

Hello Tendencytodream, strangely enough I was coming here today to look for the same info that you just asked about. I've had my deja vu since I was in the 4th grade but didn't have my first grand until a few years back. My nuro tried out a few drugs before finally putting me on Lamotrigine, which seems to have stopped my grands, but sadly enough my deja vu and partials at night seem to be getting worse. I've tried all forms of natural stuff to stop them, including hemp oil, but nothing seems to be doing the trick. I've wondered about the long term effects and my nuro says that they're not going to destroy my memory any worse but I really have my doubts. Right now my nuro seems totally fine with me having these other issues as long as I'm not having any grands, but I'm not good with that because I'll have weeks where I'll get that feeling like the deja vu is going to happen (kind of a mini deja vu or a feeling like something just isn't right) and I'll have it off an on for an entire day for a few days in a row. I've actually had a few episodes get so bad that they lead into what I'd have to say is a partial seizure and this really has me freaked because I'm only supposed to have nocturnal seizures. So I'm at the point where I'm thinking about going to another Nuro or at least asking my current one if I can try another drug out. I'd love to know if you come up with a solution. Thanks!

 

[salsa-mad]

My nuro tried out a few drugs before finally putting me on Lamotrigine, which seems to have stopped my grands, but sadly enough my deja vu and partials at night seem to be getting worse... Right now my nuro seems totally fine with me having these other issues as long as I'm not having any grands

Unfortunately sometimes we have to put up with the ‘other issues’ if it means getting rid of the big issues. If you are that concerned talk to your neuro about changing meds. There are loads of different types out there. I have been told I will never be 100% seizure free, but I can hope for as few ‘issues’ as possible. Right now I’m going through a phase of partials and am changing from Lamotrigine to Lacosamide (already on Zonisamide for migraines).

Sometimes it’s a case of weighing up prose and cons of risking more grands to get rid of other problems, or putting up with those problems to prevent grands. Sorry I couldn’t give better advice. K


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[slobbering at night]

Yeah Salsa-mad the fear of having another grand is what's keeping me from insisting on something new right now but I think that I've reached the point where I want to try and see if something else will work better. Plus I'm not sure if the seizures have made my memory this bad, I've had less than 10 grands in my life, or if it's the Lamotrigine??? The funny thing about memory is that you can't remember what your memory was like before so it can be really hard to tell just how bad it's gotten. :/

 

[salsa-mad]

I know what you mean - since I decided to change meds (two weeks ago) my auras and absences have increased and I haven’t even changed my prescription yet!

The line between neurological and psychological can become very blurred and it’s so frustrating! I was diagnosed ten years ago and it’s difficult to remember life before.


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[slobbering at night]

And to think at one time my wife thought that I was way over exaggerating my lack of memory. She'd do the normal "I just told you that" and then go on to assume that I wasn't listening. I think that the big shock for her was when I went to get some light text done for my seizures and about 30 days later I saw a $700 charge on our insurance. Me: What's that all about? Her: Uh that's the test that you took a while back. Me: Uh what test? Of course this goes back and forth for a few and with each new question the concern on her face builds, but hey I was finally able to piece the whole event together but it had her freaked for a bit. She doesn't use the "I just told you that" line very much anymore. LOL