Temporal lobe epilepsy (family first)

amother

Lime

Sun, Jul 05 2020, 12:41 am

amother [ OP ] wrote:

How was she able to be diagnosed? What symptoms did she give off? I always wonder how my symptoms went unnoticed

For a long time it did go unnoticed. We thought she was ignoring us, being poorly behaved etc. after some time they all of a sudden became worse and quite obvious. Only in retrospect do I realize that she was having them for a few months at least, or maybe a year before we realized. This type of epilepsy is often misdiagnosed as ADD, so I’m glad that it did get worse so that we were able to recognize that something was really wrong. After achieving seizure control with the medication, her behavior turned around completely for the better and I feel like I got my daughter back.

amother

Amber

Sun, Jul 05 2020, 12:44 am

I had childhood epilepsy, one petit mal seizure every few months. Abnormal EEG, normal MRI.

Wasn't diagnosed until I was a teen and had my first grand mal.

I was allergic to two of the meds I tried and considering I had seizures very rarely (still once every few months, although usually grand mal) I didn't want to try a third.

I have an aura before so I was always able to get myself out of a dangerous situation (I.e. in the shower, I was able to turn off the shower and lie down on the floor so I wouldn't be seriously injured, I had a scare once while I was driving and was able to pull over and put my head down (it didn't turn into a full blown seizure BH), etc).

I saw that lack of sleep and food triggered them, so I was more careful since then. I have been married for well over a decade and had one grand mal during that period, not planning on going on medication.

amother

Lime

Sun, Jul 05 2020, 12:45 am

amother [ Sienna ] wrote:

Yes EEG as well. Both came up clear although he had an episode while the test was taken!

He had a seizure during the eeg and it didn’t show up on the eeg. How did the dr explain that? How did the dr make the diagnosis if the tests came back clear? Perhaps something else is going on with your husband.

amother

Sienna

Sun, Jul 05 2020, 12:46 am

amother [ Amber ] wrote:

My husband has an aura as well.
Refuah sheleima to you.
Makes me feel better to hear that others are not on meds either.

amother

Sienna

Sun, Jul 05 2020, 12:48 am

amother [ Lime ] wrote:

The Dr was not surprised, he said it’s pretty common with petit mal seizures not to show. He has every symptom of petit mal I guess the dr was comfortable enough to diagnose just from both of us explaining what it looks and feels like.

amother

Red

Sun, Jul 05 2020, 12:59 am

amother [ Sienna ] wrote:

The medication had equally scary side effects. Crying

I wonder if I should try any of these naturopath ideas out there. Wonder if anyone cured adult epilepsy through a special diet. Heard that the ketogenic diet is supposed to be helpful but can’t imagine my husband should cooperate with that. It’s hell hard.

Going anon because I'm a neurologist.

First meds used include levetiracetam (keppra) and lamotrigine (lamictal) for generalized epilepsy. Carbamazepine, oxcarbazepine, and others are used for focal seizure disorders. Side effects are not universal across the board, and people respond differently. I treat many epileptic patients who do very well.

See above about the risks of untreated seizure disorders. Side effects are often mild. Death and brain damage from untreated seizures are permanent.

The ketogenic diet doesn't work for everyone; it is often tried in refractory epilepsy in children (meaning kids who still have seizures despite many medications).

THC (pot or marijuana) is also NOT a cure or definitive treatment.

It is also important to know that sometimes epilepsy is a chronic disease like diabetes. If the MRI is normal and EEG is consistent with a particular seizure disorder, then medication will be indicated.

Epileptic patients need to find an epileptologist who will instill confidence, be able to answer questions at the outset and with every follow-up. You need to build a relationship and partnership with your neurologist.

Frumwithallergies

Sun, Jul 05 2020, 1:03 am

amother [ Amber ] wrote:

Please get informed. In some jurisdictions, if you are a known epileptic and have a car accident, you can lose your license and have your car impounded. But more importantly, uncontrolled seizures increases your risk of SUDEP. Please consider another medication or a lower dose.

amother

Sienna

Sun, Jul 05 2020, 1:05 am

amother [ Red ] wrote:

Thanks so much.
Regarding the bolded, what if the EEG showed nothing even though he had one while it was taken?

amother

Amber

Sun, Jul 05 2020, 1:09 am

Frumwithallergies wrote:

I haven't had a seizure in many years. I doubt I am considered a "known epileptic" at this point.

Considering that I was allergic to two of the most common medications (and had to discontinue them obviously) I was not so eager to try out some more. They definitely affected my thinking and made me pretty out of it.

Combined with the fact that my seizures were so rare it would be hard to measure the effectiveness of the medication (if I have a seizure once every 3 months, is it a "breakthrough" seizure or is the medication completely ineffective?), I made the informed decision to discontinue it altogether.

amother

Red

Sun, Jul 05 2020, 1:14 am

EEG can be normal in a few types of epilepsy ( including some types of temporal lobe epilepsy). Often I order a sleep-deprived EEG.

When there is a doubt about epilepsy, sometimes I send the patient for EEG monitoring (we don't do it at our site). It happens that people sometimes have other problems such as Sleep apnea and fall asleep often; narcolepsy and cataplexy can sometimes mimic seizure disorders. And ADD, as another amother mentioned. Finally, there is PNES (paroxystic non-epileptic seizures), previously known as pseudo-seizures, which are a diagnosis of exclusion.

Hope this helps.

amother

Sienna

Sun, Jul 05 2020, 1:47 am

amother [ Red ] wrote:

I read up on all you mentioned. The only thing that’s possible is PNES since it says it can mimic every symptom of epilepsy and even doctors sometimes have a hard time distinguishing between the two. Plus you can have both diagnoses at the same time.
But thanks for your input.

amother

Chocolate

Sun, Jul 05 2020, 1:48 am

amother [ Sienna ] wrote:

The medication had equally scary side effects. Crying

So curious what the Dr. told you that scared you so much! I can't imagine anything as scary as SUDEP. Are you reffering to the rare allergic reaction that some people have when starting the meds?

amother

Slategray

Sun, Jul 05 2020, 4:15 am

For what it's worth, magnesium supplements and a keto diet have been shown to reduce seizures in people with epilepsy.

I had one grand mal, out of the blue, a few months ago. Hopefully it was just a one off, which apparently isn't so uncommon, so I didn't feel and need to take meds, and the neurologists were okay with that.

I've been taking magnesium and keeping very low carb since then and bH been fine. Obviously that doesn't count as evidence it works, but there's nothing to lose, you'll only feel better. Plus it makes me feel like I'm doing something proactive😊

FranticFrummie

Sun, Jul 05 2020, 10:23 am

I grew up having absence seizures, and no one ever knew. I didn't get diagnosed until I was 28. All through school my report cards said "Doesn't pay attention in class, daydreams too much, not focusing", etc. It was never ADD, because I didn't bother anyone. I just looked like I was in my own world. I had no memory of being "out of it", so I was always very confused when the teacher was mad at me.

The only way I figured it out, was one day I went out to get the mail, and sat down on the sofa to open it. Then I blinked and it was dark outside, and the mail was still in my lap, unopened. That scared the heck out of me. I'd lost 4 hours!

Eventually I was put on Depakote, and the absence seizures went away. Then suddenly, 15 years ago, I started have occasional grand mal seizures. I'd get them out of the blue, about 3 or 4 a year. I'd wake up on the floor black and blue from thrashing around and hitting the furniture. I'd also be so weak that I couldn't talk at first, and it would take me a good hour to be able to get up off of the floor.

The last seizure I had, I got DD to call an ambulance and get me to the ER. After being held for 12 hours observation, I was discharged with a diagnosis of "atypical migraine"! Banging head

All my EEGs have always been frustratingly normal. I hate it when doctors think I'm making things up just for attention. The only thing I can do is to make sure that I don't get overtired, don't overwork, and keep my blood sugar normal.

amother

Sienna

Sun, Jul 05 2020, 2:12 pm

amother [ Chocolate ] wrote:

So curious what the Dr. told you that scared you so much! I can't imagine anything as scary as SUDEP. Are you reffering to the rare allergic reaction that some people have when starting the meds?

No, it wasn’t just an allergic reaction that scared my husband off to the point of not taking it. This goes back a few years so I’m not 100% sure what it was but it might’ve been something like a sudden stroke or in that category.

amother

Blonde

Sun, Jul 05 2020, 3:12 pm

I don’t get the family first magazine and I never heard of this form of epilepsy. I googled it out of curiosity and now I wonder if my husband has something similar!

Anxiety runs in his family. A couple years ago he mentioned to me that he sometimes has these random “panic attacks” (his words) that last 30 seconds or so. He feel unexplainable panic and like his stomach drops away. It doesn’t occur frequently (maybe a couple times a year?) and he gets back to normal soon after. He also randomly one time had one where he was shaking uncontrollably and had a tightness in his chest . I was with him at the time and we called Hatzalah, went to the ER, etc. At the time they couldn’t find a source and said it seemed random. He also has frequent deja vu feelings, which according to google is also a symptom.

What do you think?

amother

Sienna

Sun, Jul 05 2020, 3:18 pm

amother [ Blonde ] wrote:

The symptoms are very similar to my husbands petit mal seizures. Comes along with deja vu and stomach turning.