Subclinical seizure activity

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
4
Reaction score
0
Points
6
A few weeks ago I went to see a neurologist bc I take adderall and my PCP wanted me to have a clearance bc I'm over 60. Made the appointment and talked about sleep issues bc of something like sleep apnea but more subtle (Upper Airway Resistance Syndrome). When that wakes me it takes at least an hour to get back to sleep and that happens several times a night. The neuro suggested Wellbutrin but bc it lowers the seizure threshold I had an EEG in the office. It came back w/ a spike which he said was some kind of subclinical activity. Did he say seizure activity? I think so. I've never had anything that sounded like a small or Grand seizure. So then he set me up w/ a 48 hour EEG.

But thinking about this, I'm thinking what could be the outcome other than taking medication preventively. The nurse said it would be Lamictal if they saw more seizure activity. I take no meds except for low thyroid and Addderall 3 times a week on a toddler's dose bc I'm that sensitive. Also I'm queen of the Side Effects. I'm trying to get my life and career back bc of lack of sleep so adding something like lamictal I'm guessing would put me in a terrible place when I haven't even had a seizure that I know of. The nurse said it would be like seeing something on an EKG that could spell the possibility of a stroke. But the chance of a stroke increases w/ age. I'm not aware that a seizure does too.

I canceled the EEG and will make a follow up appointment to speak to the neuro but hope to get some perspective about this. I understand this forum most likely is people who experience seizures and aren't like me but maybe not. Or maybe someone knows of a more appropriate place to ask this. Thanks!
ps Can someone tell me how to delete my photo. I didn't put it up for this forum but at some point for something I added it and can't find the source of that so it keeps popping up.
 
A longer EEG is probably the right call. Seizure meds are nasty, so you don't want to be on them unless you really need them, even at a low dose.

Epilepsy tends to develop on both ends - when you are younger, and then again when you are older.

You should probably see another neurologist for a second opinion before taking seizure meds, and maybe about your Adderall. I suppose you have ADHD? Stimulant medication alone could cause weird things to go on in your brain, so I would bring that up with your doctor. I'm surprised they didn't discuss that, and that's really what concerns me. Adderall is amphetamines, which absolutely lower your seizure threshold - and probably give you insomnia, or problems sleeping. Lack of sleep is also a seizure trigger, and probably causes other weird things to happen in your brain. It just sounds like one med is may be giving you problems, and they are trying to cover it up with another med, without thinking through all the options.

I would feel more comfortable getting the test. More tests are generally better. There's no such thing as an "unnecessary" test. A negative result is positive knowledge. The worst thing is not knowing, or being unsure. However, I would make sure that the doctor interpreting the results really knows their stuff. Once-off-in-the-office EEGs are not the best diagnostic tool. It's only a place to start. "Spiking" is not only caused by seizures. A longer EEG will tell them a lot more. Did they want an inpatient VEEG, or outpatient Ambulatory EEG? Inpatient is probably "easier", unless you really don't like being in the hospital.

It might be a good idea to get an MRI if you have spiking, especially if your insurance covers it. That's another reason for considering a second opinion.

Consider seeing an epileptologist (a neurologist who specialized in epilepsy). Epileptologists are generally much better at diagnosing epilepsy. They would be better at interpreting the EEG results (either way), and much better with medication (including how other medications can affect you).
 
@Matthew74 Taking adderall and insomnia has been discussed many many times. Had insomnia before taking adderall. Stopped taking adderall for years. Still had insomnia. Much of the insomnia is related to UARS which I"m dealing with. If I couldn't take adderall, I couldn't manage to do, ya know, things. Still I'm taking 5 mg which as I said is a toddler's dose. sad that toddlers take this but I'm not concerned because the dose is so low.This isn't the point of my post though

And I appreciate all you've written but how does it make sense to do the test if I'm not going to take any medication? That is what I'm asking. Maybe that idea is foreign so you can't address that and I get it if that's the case. I understand the idea of information is power but how does that stand up in the I'm not going to do anything regardless of what's found on the EEG. I was asking in case there was something else that might be found that would be good to know. still not taking any medication though

Yes, it's an at home EEG.

Thanks!
 
If a second EEG showed seizure activity, it might be worth knowing even if you aren't planning on taking a seizure medicine. But in the absence of any precipitating symptoms, it's your call to make, especially since EEGs can have both false negatives and false positives.
 
p.s. I deleted your photo for you. :)
 
You may want to have a sleep study along with an video e.e.g. and e.k.g all at the same time. This is what my Epileptologist had me do and they
found out I had sleep apnea and I was also having seizures in my sleep about 1-2 hrs. before I woke up. These seizures are called
myoclonic seizures. I then started taking vimpat and the seizures stopped but I still deal with absence and complex partial
seizures.
To find the best seizure med for you ask the Dr. to do a DNA test on you. They will just take some blood and get some salvia
from your mouth all of that is sent to the lab where they will be able to see the amount of enzymes in your liver along with
your body chemistry and they will be able to match all of that up to the best seizure med if needed with the least side effect.
I had this done and found out I was drug resistant so my Dr. told me to start using cbd oil and that has helped me more than
any seizure med in the world.

If you are having seizures be sure to write down on a calendar what time you had the seizure and they type of seizure you had
by doing this the Dr. may see a pattern in your seizures. I always have them the 1st and 3rd week of the month and when there's
a low pressure in the weather.

Wishing You Only the Best of Luck and May God Bless You,

Sue
 
@Nakamova thanks so much for your response. I didn't know about false positives and negatives. I will though proceed w/ the information that that might be true for me. I made a follow up appointment to discuss further although it's not until Oct!. Busy guy I guess.

p.s. Wow! Thanks so much for deleting the photo!
 
@Porkette thanks for your thoughts. Thing is I'm not going to go on any meds. I've had 4 sleep studies. One in house and the others at home. But same thing w/ that. I'm not interested in pursuing this if the only answer would be to take medication. I already have been diagnosed w/ something similar to sleep apnea and am in the process of sorting that out
 
I was saying that it's possible that the Adderall is contributing to the spiking. A lot of people with epilepsy have problems with stimulants. I feel A LOT better when I get a little caffeine in my system, because I'm not so tired and can think straight, but later I can get seizures because of it. I'm not saying that you should not take Adderall. It's only a consideration.

An EEG is done to identify whether or not you are having "epileptiform" activity, or having seizures. If you are having seizures you REALLY want to know, completely apart from the question of meds. Also, before they had CTs and MRIs, EEGs were used to identify brain tumors or other abnormalities. So, anything out of the ordinary is worth looking at more closely.

Whether or not you need, or want to take meds is it's own question. If the EEG shows that you are having seizures, then your doctor would want you to take meds, but it's ultimately your decision.

The reason they might want to prescribe meds is that seizures have a "kindling" effect. Every seizure you have, even tiny ones, make it more likely that you will have more seizures and worse seizures. A person can go on for years just fine, and then the seizures they can suddenly snowball out of control. The person can end up in a very bad state - permanently. A person could be ok, and then get a bad fever (which lowers your seizure threshold) and end up in the emergency room with seizures that won't stop. They can then have uncontrollable seizures for the rest of their lives. That's for real. I'm not saying that you do, only that's what the concern would be. Low level seizures can also cause cognitive issues, like executive function, concentration, and memory problems, as well as fatigue. They can even wake you up at night. They don't always "look" like seizures, and can be mistaken for other things. Again, I'm not saying anything about your case, only that these things do happen.

It's also your choice about what tests to have. However, if you are having tiny seizures, it really would be a good idea to know. It's not just about knowing something for the sake of knowing, it's about the possible implications for your life, so that you can make better decisions, and maybe even feel better.
 
Back
Top Bottom