Newbie greetings

[CapeMom]

Hi
I am an ex-ICU nurse practitioner (now SAHM)and my husband is an epileptic - had his first witnessed generalized seizure at the age of 17 after a surgery which was eventually dismissed as a "once off", and then again at age 29, recurring a few times in the last 10 years. It took a few years to realise/assume that he has most likely had abdominal epilepsy for many years prior to that ("IBS" that didn't respond to treatment, made him feel as if he would pass out, resolved on AE's, only experiences it now before a seizure).

He has been seizure free for just over a year now, previously seizure free for 4-7 months at a time (on Lamotrogine 200mg 2x day and fluoxetine (Prozac) daily). We have had to play around with his drugs a bit, but seem to have found the answer, and use Ativan rarely if he starts having any abdominal symptoms or deja vu, or if he is in a high stress situation (like slicing his leg open while mountain biking!!)

I have joined this forum as I have some questions regarding medication side effects. I'll be poking a bit around the forums and post in the relevant spot once I'm familiar.

Regards
CapeMom

 

[epileric]

Welcome to the site

You poke around all you want & feel free to ask questions.

The people here are pretty good at answering them.

 

[CapeMom]

You poke around all you want & feel free to ask questions.

The people here are pretty good at answering them.

Thank you

 

[Nakamova]

Hi CapeMom, welcome to CWE!

Make yourself at home, and help yourself to some coffee and donuts...

Best,
Nakamova

 

[Cardones]

Hi, welcome!

I've found people here to be v helpful, hope you find teh site as useful as I do.

Just regarding abdominal epilepsy, I've heard it's exceptionally rare. Did your husband have no other epilepsy symptoms between 17 and 29 other than assumed IBS? You mentioned deja vu so wondered if he had in fact been having more standard simple partials without realising. Otherwise going 12 years with no seizures after a first one is unusual. What was his original operation for?

 

[qtowngirl]

Welcome CapeMom,
I have never heard of this type of e, but after reading your post my first impression was the same as Cardones... simple partial seizures. One of the four main categories of simple partials is 'Autonomic,' which includes strange or unpleasant feelings in the stomach. It is explained by many as 'my stomach drops' or 'feels like it's flipping over.'
My experience is a dropping feeling and, as it comes on so fast and strong, can cause gas/bloat-type symptoms.
What other symptoms beside the stomach and deja vu does he have? Face flushing or feeling instantly hot? Goosebumps? These are other strong indicators.
I read up on it after reading your post and it sounds like their biggest indicator is the symptoms reacting to the AEDs. Good to hear Lamotrigine works for him.
Has he been medically diagnosed yet with abdominal epilepsy? If not I would suggest discussing simple partials with your neurologist.
All the best...

 

[CapeMom]

Thanks all for your replies. In all honesty, getting a medical history for the man prior to me knowing him is really difficult. He kept anything not "major" (in his eyes) from his parents, as he hates being fussed over, and has difficulty recalling specific nuances that occurred over 20 years ago!
So, I have been researching many things, and then going back to him and asking specific questions. Time consuming process that has taken 10 years so far.

Anyway - I just gave the short intro, as opposed to the detailed medical bio!

Deja vu has been a very rare phenomenon for him - and only once followed by a TC, but one we agree now to treat with Ativan if it does occur again.
I (and his neuro) am very sure he has had simple partials in the past, "weird spacey" feelings in his head, the abdominal stuff, goosebumps for sure with the abdominal symptoms, and in retrospect other autonomic nervous system things I noticed which led me to investigate abdominal epilepsy in the first place. He also really struggled with walking in a crowd for a while (walking from station to work) as looking at the road with all the legs streaming past made him feel strange. This does not bother him currently, since his last med adjustment. Going from a daily dose to a larger morning and smaller evening dose helped, and then going to an equal morning/evening dose was even better, esp since he now has an alarm and is punctual with his evening dose (morning is never a problem to remember). His seizures have always been at night.

The surgery long ago was arthroscopic for a knee injury, and the seizure, through a process of elimination, was eventually relegated to the "we don't know any more, but everyone is allowed one unexplained seizure in a lifetime" type diagnosis.
The neuro agrees that abdominal epilepsy is very possible, but it is not an official diagnosis. None of his EEG's, sleep EEG or MRI's have ever given us any solid info, including an EEG during a TC seizure.
Further investigations would require him stopping all meds to undergo further testing, which my dh is not willing to do (and having achieved a state of no symptoms what-so-ever, I'm with him on that for now). qtowngirl, you are correct in that the major indicator was that the abdominal symptoms, which occurred frequently, are no longer present since beginning Lamotrigine, except for the few breakthrough seizures he's had, which all bar one were preceded by abdominal symptoms. The lone other was after a different minor surgical procedure which resulted in a haematoma and bleeding - and this man and blood don't go well together! Hence the Ativan for stressful situations now added!

I am currently investigating biofeedback since meeting an OT who does it (she is new to my bookclub, and I had never heard of it before). Dh is actually a PT by training (but no longer practising - IT nerd now!) and is also interesting in finding out more. We plan to visit her soon for an info session.

One symptom I've recently become aware of after having my 8yo complain of this, and dh saying that he has experienced that, is a feeling of loosing balance to one side momentarily, but being able to catch oneself. I'm not sure what to make of that, but considering the child is suffering sinus issues at the moment, I'm leaning towards inner ear stuff. But I'm open to hearing other's experiences. Dh hasn't noted that for ages.

Anyhoo, that's it in more detail. I still need to get around to my main purpose for being here, but it is past my bedtime (different hemisphere and time zone to most of you, no doubt)!