New! And need some advice :) nocturnal seizures

[Nikki1122x]

Hello! I'm new here and just wanted some insight. I had a seizure that I was hospitalized for on march 31st (grand mal maybe?) and then another small one three days later. Both nocturnal. I'm finally on a medicine that doesn't give me crazy side effects or that I'm allergic to and going well. Throughout all this medicine changes I haven't had a seizure since that second one. I'm currently on 600 mg of time release trileptal (600mg before I go to bed). Although I haven't had a vivid seizure, since it's nocturnal I don't know if there are subliminal seizures going on that I don't know about. I sleep with my fiancé and he says nothing that he's witnessed. All my tests came back good except my EEG that showed two little spikes once in it. I go for a 24hour EEG next month. Anyway, I'm 22 years old and starting law school in the fall and am wondering two things!

1) any words of advice on getting off medication in 2 years as long as I don't have a seizure in those two years?

2) anyone here have solely nocturnal seizures that I can maybe talk to and get some advice. The doctors I've seen don't know a whole lot about them and are a bit unexplainable a lot of the times.

 

[Dignan]

Can't help with personal experience on nocturnal seizures, as I don't have those, but if you remain seizure free for two years your doc should allow you to try and get off medication if there are no other issues.

However, before they do that, the doc would want to do another EEG and/or MRI to look for E-related brain waves or a seizure focus. Even if you aren't having a seizure, they can see if a person might be "prone" to having one based on the EEG, along with the fact that you've already had seizures.

That said, if all that checks out, and you and your doc trust one another, then you can wean off meds and give it a shot. I tried this a few times, but they kept detecting the E waves on my EEG. But, my doc knew me and trusted me and allowed me to get off of my main med (I was on two). I stayed in contact and he checked on me every few months. I made it a year and then had a big one, so it was back on regular meds for me.

If you are fortunate enough to be a person who responds well to medication and achieve seizure control, then you can have a very normal life, only you will take a medication. There are certainly worse things.

Good luck! I hope things turn out they way you want!

 

[mom1]

Are you sure they are not parasomnias? Our son had those a few times and his E Dr. said they were not seizures but parasomnias. They pronounce differently on an EEG. Yes we have had good results with Trileptal and were off of meds for a while after being 2 years seizure free, so it is something to look forward to! Praying this will happen for you. And that is so awesome you are going to law school. Please keep us posted how you are doing in school.

 

[Nikki1122x]

Thanks for the input everyone!

I always thought of the great possibility of parasomnias, but wouldn't the doctor that read the EEG that showed the "two spikes" would have been able to see the difference? Or am I putting too much faith in them LOL

I come from a job that consistently deals with doctors' malpractice, so I've been to three different neurologists. I assume ONE of them would have known?

 

[Dignan]

You'd think the doc would be able to tell the difference, but you should ask the question anyway, if for no other reason than to let the doc know you have that question and put it to rest in your mind.

They may know to look, but may not always communicate it properly. Or, if they aren't considering all options, then you can find out and take that as an indicator to find another doc. BTW, you should try to find a neuro who is an epileptologist as well. They specialize in E and seizure disorders.

You definitely need to be your own advocate.

 

[masterjen]

I agree that ruling in or out the possibility of parasomnia(s) may be helpful. A doctor who specializes in sleep medicine would be who to consult. There are several features about seizures that help distinguish them from parasomnias, for instance nocturnal seizures are very stereotyped in nature, typically last less than 10 seconds, occur multiple times per night, are frequently recalled by the patient, and typically occur during non-REM sleep stages 1 or 2. A polysomnogram is typically done to help determine the sleep stage the patient is in when the night events occur, and it will also determine if there are any other sleep disorders present such as restless legs, periodic limb movement disorder, sleep apnea, etc.

 

[Berlinomatt]

I had an episode of God knows how many seizures in a single night but it was violent enough that the contractions in my back and chest muscles broke both my shoulders in multiple places requiring extensive reconstruction surgery and plates and screws. I've not had one since and am on a very low dose of Keppra (500mg before bed). Its been nearly 18 months and I'm also considering coming off it when the two years is up but obviously there is quite a high risk involved if indeed another quite so violent seizure occurred. Once or twice in the 18 months I have noticed very small bite marks on the inside of my mouth but have never woken up feeling dazed and confused or the typical feeling associated with a seizure so not sure if these are indications of a seizure or maybe just stress. If anyone has any advice about coming off medications or on the effect Keppra has on reducing the intensity I'd be really happy to hear it

 

[Nakamova]

Hey Berlinomatt, sometimes biting the inside of the mouth can be related to jaw/bite issues, might be worth checking with your dntist for input. As for tapering off of keppra, your neuro will have relevant advice. "Low and slow" is a good general rule for tapering on or off brain meds. Small increments with a decent amount of time at each increment give your brain time to adjust to the changes, and can minimize withdrawal side effects. Keppra has a short half-life so the recommended taper period will probably be relatively brief (depending on your current dosage); it can't hurt -- and may help -- to go even slower than recommended.

 

[Berlinomatt]

Thanks very much for the info and I will definitely speak with my neurologist. Regarding Keppra, does it either stop seizures completely or not at all, or does it have the potential to dampen them if the dose is not quite high enough?
Thanks again.

 

[Nakamova]

Regarding Keppra, does it either stop seizures completely or not at all, or does it have the potential to dampen them if the dose is not quite high enough?

It varies -- some people may get total seizure control with Keppra, while others may not. For some, increasing the dosage will help, while in others that may be ineffective. Just to make things extra-complicated, seizures and medication-response can change over time as well.

If you're concerned that you may be having small breakthrough seizures at night, it may help to keep a journal recording any suspicious symptoms (such as the mouth bites). This may help you and your neuro determine if there's any cause for concern. You will also get a sense if the symptoms are connected to particular stressors, and/or are escalating or changing in any way.

 

[Berlinomatt]

Thank you. Once again thats very helpful. I was thinking of trying to set up my computer with a web cam and trying to find a way to record myself as I sleep as I live alone. I don't suppose you also know of possibilities there as well?

Again many many thanks for the help!

 

[Nakamova]

I haven't tried a webcam myself, but I think some CWE members may have. If you have a mac you can use iSight and iMove to do it. You'll probably need to do a few tests to see if the lighting will be sufficient.

Another possibility: Some fitness monitors track movement and heart rate -- one of those might show if your sleep is being unusually disrupted.

 

[masterjen]

I live alone also, and I purchased a "mydlink" camera for $150 (Canadian) about 3 months ago upon the advice of one specialist. It has the ability to record in both day and night, so no need to try to sleep with the lights on (!). It proved a vital role in helping to more conclusively diagnose nocturnal (complex partial) seizures, as there was debate amongst specialists whether I was having episodes of dystonia at night (a condition I do have during the day), some form of parasomnia, or seizures.

 

[Skywalker]

Hi, well I have been having only nocturnal epilepsy for the last 30 years. I would like to help you in any way I can.