Epileptologist today: You've been misdiagnosed

[lindsayschu2]

I finally had my long-awaited appointment with an epileptologist, and she told me that after 35 years of having epilepsy, I have been misdiagnosed as having temporal lobe epilepsy, when I have generalized epilepsy, and probably both. I have a family history of epilepsy and have been having myclonic seizures and she is the first of 5 neurologist to piece those together into a complete diagnosis. (Temporal lobe epilepsy doesn't include myclonic seizures, which has confused me to no end.) This may not help me get control but I am hoping. Seems like the drugs that help with one exacerbate the other but we are trying a new combination. Arnie is right--seeing an epileptologist is a whole new world.

 

[arnie]

I'm glad you were able to see one and get some new insights on your epilepsy. It is kind of discouraging, though, to realize that for years, or decades in our cases, there have been major gaps, to put it politely, in your care and treatment.

Here's hoping things get better!

Cheers!

 

[masterjen]

I'm glad the visit to the epileptologist was so helpful. What new medication regime will be tried? Keeping my fingers crossed that it will lead to better seizure control for you!

 

[lindsayschu2]

I'm going back on Tegretol, and leaving Topamax in place. In a way it's a bummer because I am in a very rare group that has both TLE and generalized epilepsy (I read the discharge sheet and she definitely concluded I have both). Tegretol can make GE worse, but I did well on it for a long time--but the GE symptoms have been much worse since my car accident. We are going to see how that works, and if it doesn't, then Keppra it is. If that doesnt work, then a one-week Video EEG is the next step (I wanted to try the med change approach first because I'm not wild about going off meds for a week and risking having a TC--I bit my tongue almost in half with the one I did have, and I know that sounds really wimpy to so many who have them a lot but it really scared me, plus it's a whole week off of work). Thanks for all your support over these months, I really don't know what I would have done without this forum and all the truly awesome people here.

 

[Cint]

Glad you got in to see an epileptologist, plus a female one at that. Having E is one difficult illness to diagnose, so glad you finally found someone who finally got it right.

 

[lindsayschu2]

Here is an important question: With my change in diagnosis, it's more possible that my son may develop seizures later in life, since he had two when he was an infant and this is genetic. What do I tell him? Do I tell him about this change in diagnosis? Do I tell his dad instead (we are divorced)? If he gets seizures a later, the typical type for the generalized epilepsy that he would have inherited are absence and myclonic, and they would not recognize absences if I were dead, since my primary types they are used to seeing from me are SPs and CPs (from the TLE) and myclonics. This is confusing.

 

[masterjen]

How old is your son? What does he know so far about his risk of having seizures?

 

[lindsayschu2]

My son is 17 and has seen me go through all of this in the past year. He knows all about it. He is unlikely to have seizures after 17 years, but we all know there are no guarantees and since he had two when he was an infant it is possible. He is very familiar with simple and complex partials and saw me have myclonics. He would not know about absences and that is a common part of the generalized that he would have inherited if he were to ever suddenly get seizures. I guess I'm inclined to just tell him and tell him the risk is super low. He's pretty mature. Oh and yes, he knows he had two as an infant and there is a possibility he could have more, but we thought it was super unlikely and that it was because he was premature and that it was because he had low oxygen saturation (he came home on oxygen)--this diagnosis makes it more likely he could have seizures down the road.

 

[masterjen]

I would explain it just as you did to me above - that after 17 years he is unlikely to develop seizures; that while there is no guarantee he won't, the risk is very low.

I don't know much about absence seizures, but could abnormal brain waves - such as those indicative of subclinical seizures, show up now that would indicate he is at risk of developing this type of seizure (or any other type for that matter)?

 

[lindsayschu2]

Geez I don't know--but I think it would freak him out completely to hook him up to an EEG after seeing what I've gone through this past year. I think she said something about how my TLE sharp waves show up more easily than generalized waves and how they would need the longer video EEG to see the interictal blah blah blah to see the generalized pattern. I didn't get everything she said aside of how the EEG didn't impress her much aside of the fact that it just showed the focal stuff and how the generalized was harder to get, so I'm not sure if an EEG would help much in his case. But I'm not sure, she was too smart for me

 

[Cint]

Here is an important question: With my change in diagnosis, it's more possible that my son may develop seizures later in life, since he had two when he was an infant and this is genetic. What do I tell him?

If he starts complaining of some seizure-like symptoms, then you tell him. But according to your previous posts, I'd say you've told your son enough. An EEG probably would freak him out.

http://www.epilepsy.com/learn/epilepsy-101/epilepsy-inherited

If I have epilepsy, will my children also have it?

Most children of people with epilepsy do not develop seizures or epilepsy. However, since genes are passed down through families, it is possible. Here are a few general points to remember.

~Less than 2 people out of every 100 develop epilepsy at some point during their lifetime.
~The risk for children whose father has epilepsy is only slightly higher.
~If the mother has epilepsy and the father does not, the risk is still less than 5 in 100.
~If both parents have epilepsy, the risk is a bit higher. Most children will not inherit epilepsy from a parent, but the chance of inheriting some types of epilepsy is higher.

 

[lindsayschu2]

Thank you Cint!!

 

[N Sperlo]

What a conclusion. Glad that was able to be cleared up.

When it comes to your son, you just said he was mature. I doubt it would freak him out much. He already knows of the minor possibility of having seizures. The facts should only make him passively cautious.

Don't sugarcoat it.