Epilepsy plus vertigo?

[Wobblez]

Hi all,


For about 4 months I had been taking 200mg Lamactil per day and doing really well. No seizures, no symptoms. I felt like a new person. I had my license and my life back.

However, in the last few weeks my seizures have come back. I've had what I think was one complex partial (witnessed by epilepsy-savvy friend) and two simple partials, plus the usual sensations, numbness in my tongue, lips and right arm, dizziness and lightheaded feelings. My neurologist had suggested I could up my medication slowly and responsibly within reason if this happened between our 6 monthly appointments. So I increased my meds by 100mg, over 3 weeks.

I finally got hold of him last week and he said he thinks something else may be going on. He said it's hard to know what's going on because "some symptoms are typical of epilepsy but others are not". I have a 15 year epilepsy childhood history but this time around it's a bit different. Apparently dizziness is not typical of epilepsy??? I tend to disagree but I'm not a doctor.

So here's my question. The first Neuro I saw diagnosed BBV, a form of vertigo. The symptoms are quite similar to simple partials but i'd like to hear what you guys think.

My symptoms generally start with feeling a bit off, then dizzy/lightheaded. Headache and aura. The aura involves a pain in my sinuses/head and the feeling that i'm falling backwards. My vision goes (sometimes) and I start feeling numb in my mouth/face and always my right arm (same as when I was a kid). I then get twitchy, can't talk or move. It usually only lasts a few minutes, then as I come out of it, my slurred speech improves and I'm left feeling a bit weak and wobbly, with a huge headache but otherwise ok.

Sometimes I can go through a period of 3 or 4 days where I feel dizzy a lot, have a strong headache and generally feel weak and wobbly. I have a lot of the same aura/sensations described above but nothing strong enough for me to say it's actually a seizure. Maybe really small ones?? I don't know. It's getting really confusing and frustrating.

I hope the Neuro will offer me something, whether its a change of medication or discuss possible triggers. After being on Lamactil for 6 months, should I be having relapses? Can anyone shed any light on this?

Best wishes to all and thank you for reading!

 

[Wobblez]

Bumping =)

 

[Starburst]

Hi,
I hope you find relief soon. You might want to check into something called MAV (migraine-associated vertigo). Migraine encompasses many things and not just headaches. Numbness, auras, vision issues, and nausea are all common with MAV. I am not sure, however, about the slurred speech and twitchiness. You might have more than one thing going on at a time. It could also be a reaction to the medication.

 

[Nakamova]

Hi Wobblez --

What kind of dizziness are you experiencing? I've found that whenever I've changed my Lamictal dosage up or down, I go through a period where I have fleeting moments of the kind of dizziness that's more like the spins (as opposed to the sensation of faintheadness you might get if you stand up suddenly.) I know your symptoms pre-dated the Lamictal increase, but the ramp-up may be exacerbating them -- 100mg in 3 weeks is actually a relatively fast pace of increase, so your brain and body may need some time to adjust.

 

[Wobblez]

Hi Nakamova ad Um-Adam.

Thank you for putting me on to MAV, i'll have a look at that. The first Neuro I saw did diagnose me with BBV, another form of vertigo. Back then I was having migraines that had me in tears. Thankfully they are very rare these days.

I get all sorts of dizziness, from that lightheaded feeling to such strong and sudden vertigo I've actually grabbed the desk while typing out assignments, thinking the room was being flipped upside down. That one was very sudden and probably fatigue-induced as I had been working on that assignment all day.

I also have the headspins when i'm lying in bed. I find myself gripping the bed with my hands because I feel like i'm rolling down a hill. They aren't very nice and can last up to 20mins on a bad day.

I wouldn't say the increase has caused it so much, because I increased the medication because of the headspins returning. I have heard Lamactil can cause dizziness though.

I saw a chiro and had a massage this week. My pelvis was out, which threw my neck out, causing a slight twist in my spine. I knew my pelvis was out, but I didn't know if it was my neck and/or epilepsy causing the constant dull headache. I'm glad I got it checked out because I feel so much better. Let's hope that's all it was. Although it doesn't explain the two partials I had before my hip problem started.

 

[Starburst]

Do you have any sensations in the ear (such as tinnitus, pain, hearing loss, or fullness)? Many vertigo problems are related to the inner ear but there is also such a thing as epileptic vertigo:

dizziness-and-balance.com/disorders/central/epileptic.html

 

[PattyH]

Two of the last three days I have had the dizziness for the first 1/2 of the day. Had a pre-scheduled appt today. He says this is most likely a seizure but, I can't remember the name he gave it. I've never had this type before. Have had auras, grand mals and partials. Am currently on 150 mg of Vimpat twice a day and this was like the side effects of that when I started it a year ago. Dizzy to the point of having to balance on the walls for the first 1/2 of the day. Also taking Kepra and Lamatil. Have been on the Kepra for several years so I don't think it is related to that as some other posts I've seen here. Any ideas?

 

[Wobblez]

Um-adam, thank you for the link, I've read it and I'll take it along to my appointment with my Neuro next week. The nurse at the hospital checked my ears because we had wondered if it was an inner ear problem. No issues there and I've never had any pain, infections or fullness etc.

Pat, Thank you for your input. I know what you mean with holding on to furniture and walls! It's interesting that you only get that during the mornings? I assume if it's a side effect of the meds and you also take tablets at night, that maybe by the time it kicks in you're asleep and not aware of the dizziness? I can have it all day, for days on end, in varying degrees. It started long before I was put on to Epilim and then Lamactil so I know it's not the meds.

Do you ever have vertigo while you're laying in bed? I haven't had it for a few weeks but the room used to spin so badly that I found myself gripping the bed. It could even wake me up and make me feel like my head was being pulled down into the pillow. I couldn't move my head at all. I think it was a seizure but I don't know. It was different to dizziness because I was laying still and the environment around me moves. I've also had moments where i've been typing assignments and I felt like someone had picked up the room and tipped it over. It was so sudden, I grabbed the desk thinking I was falling. It's very powerful and often gets me up close and personal with the kitchen floor. I'm a bit of a kitchen floor harlet actually, I kiss everybody's floors lately!

 

[seanmalloy]

I am new here- my name is Charlene and my 16 year old son Sean has had seizures since he was 22 months. He has had all kinds- generalized, complex partial, simple etc. Has VNS, tried over 10 meds and combinations thereof, not a candidate for brain surgery via long term testing at 7 years old and again this past November. He has had vertigo seizures since he was 7 along with the other seizure types. For the past 5 years almost all seizures are vertigo and can last 5 plus hours. After our last hospitalization our neuro (who has treated this vertigo as seizures since Sean was 7 years old) washed her hands of us and now won't treat these vertigo episodes because she isn't certain they are seizures and has referred us back to the vertigo/dizziness specialist here at Emory. Sean recently had a complete evaluation with the dizziness specialist and no abnormalities with his inner ear or toehrwise were detected. All testing came back normal. The vertigo specialist suggested a low dose Klonopin that seems to stop vertigo with adults. It hasn't worked for Sean. she referred us back to neuro immediately ater our appointment. I am at my wits end but refuse to give up. This vertigo is debilitating. It lasts hours. He is exhausted and pupils are dilated during and post this event. Sean also suffers headaches post and during. He had visual disturbances this past fall that were assumed to be seizures but after not showing up on EEG were thought to be related to migraines. It was suggested he take Periactin to treat and this has resolved the visual disturbances. His vertigo is still very severe and uncontrolled. My gut is telling me they are truly seizures. I am an RN who has several years experience with medically fragile children...most of whom suffer a seizure disorder as an adjucnt to their illness or syndrome. I am very familiar withall seizure types. But vertigo seizures are very rare. If anyone has any experience with these type seizures a reply would be appreciated.
Thank you.

 

[Nakamova]

Hi Charlene, welcome to CWE.

A few questions: Is you rson on other meds too? Any chance they are making the vertigo worse? Is he on any AEDs? I think Tegretol is supposed to be helpful for epileptic vertigo, but other meds not so much. Valium can sometimes help too, on a short-term basis.

Has he been tested for cardiac/vascular issues that might be contributing to the vertigo?
Is he photosensitive -- that can sometimes play a role in triggering epileptic vertigo. If so, you might look into getting special tinted lenses for him that would minimize particular light-related triggers.

 

[jyearta]

My symptoms generally start with feeling a bit off, then dizzy/lightheaded. Headache and aura. The aura involves a pain in my sinuses/head and the feeling that i'm falling backwards. My vision goes (sometimes) and I start feeling numb in my mouth/face and always my right arm (same as when I was a kid). I then get twitchy, can't talk or move. It usually only lasts a few minutes, then as I come out of it, my slurred speech improves and I'm left feeling a bit weak and wobbly, with a huge headache but otherwise ok.

Sometimes I can go through a period of 3 or 4 days where I feel dizzy a lot, have a strong headache and generally feel weak and wobbly. I have a lot of the same aura/sensations described above but nothing strong enough for me to say it's actually a seizure. Maybe really small ones?? I don't know. It's getting really confusing and frustrating.

Are you taking any thing else? I ask this because I had all the symptoms for years when I was on celexa.

 

[LJ-Bain]

When my partials began four years ago they started with vertigo, plus convulsions and a wicked facial grimace. I also had a sinus infection at the time too though.
When I started my Keppra (and I still do to a lesser extent) get dizzy when I first get up in the morning. I find that I have to take my time waking up and only lying on my side helps it go away. Lying on my back first thing in the morning is a big no can do.

Your partials sound VERY similar to mine. With my body it's the right side of my face and left side of my body. I get tingles, twitching, weakness and then afterwards I can't talk or move for about 5 - 10 minutes unless I'm stuck in a cluster. I get slurred speech too. I always wonder if people think I'm drunk!
You really are on quite the roller coaster ride these days!
I hope they can put all of your pieces together and get a proper diagnosis.

 

[seanmalloy]

Thank you for your response. Sean is not on any other medications. We have virtually tried them all (including Tegretol) and combinations thereof...being on up to 3 at one time. This past fall he was enrolled in a drug study for his seizure type but because he required Valium/Versed so frequently as a rescue med we were no longer eligible to be part of the study (only 3 treatments allowed, Sean's: VNS,Depakote ER and Valium) This seizure type started several years ago when he was placed on Keppra. Up until that point he had complex partial and generalized seizures. The more we increased the dose the worse the vertigo episodes became. We were originally told the vertigo was a side effect of the medication and he would adjust. Not so. He was dizzy and wandering out of the classroom at school up to 6 times/day. After being seen in Boston we were properly diagnosed and as we weaned off the Keppra the vertigo seizures decreased in number but have never gone away. As he has grown older the vertigo can sometimes last hours. Sometimes it is so severe he has to hold onto the wall to walk to the clinic at school or even just sit or lay down immediately.

He is not sensative to light and this has never been a trigger for him that we have noted. Thank you so much for the suggestions. I am hoping someone has had a very similar experience and can share their experience and treatment plan.

As for cardiac/vascular issues his vertigo is very long lasting unlike you might see with a cardiac/orthostatic hyposension type issue which lasts only moments. Good thought though. It is always well worth exploring all potential causitive factors.
Well for now we'll live one day at a time and keep the faith!
Thanks again.

 

[Wobblez]

Jyearta, I'm also taking 10mg Lexapro daily. My doctor put me on it back in early 2010 to rule out anxiety. I'd had a very rough 2009 so it helped. I no longer feel the need to take it but i've been advised not to "rock the boat" by changing anything, medication wise. I had these symptoms before I started the Lexapro. It was suggested I might be having anxiety attacks. I've had one or two in the past and I can tell they are definitely NOT anxiety attacks this time around = totally different.

Thanks for your suggestions though.