Anyone dx with frontal lobe E?

[occb]

I'm curious to hear about what kinds of seizures and auras you experience, whether day or night. The reason is that I read this description of frontal lobe epilepsy, and pretty much describes what my partner experiences (So much so I actually yelled AHA! when I read it), and I was wondering how accurate a description it is.

I know dx by internet is a no-no -- I'm just preparing myself for the neuro appointment in 2 weeks, and I'd like to have something to say if, like the GP, he decides the weird activities at night don't mean anything, and the daytime ones are "nothing much", since he doesn't experience TCs. Yes, I can be a little obsessive about info and preparedness sometimes.

It's starting to get critical now. He's having a hard time functioning in the day because he wakes up feeling like garbage and can't muster the energy to move (unusual for him), and he's had a lot of time loss, memory loss, and unusual things happening while I'm at work.

 

[Rae1889]

I dont see anything wrong with internet Dx...I have done it with my E, and with several other ailments and have been spot on thanks to hours of research...Good on you for not giving up!

HUGS!

 

[occb]

Giving up is not an option.Too many already have, and I refuse to be one of them

Thanks for the support and hugs Rae. The closer we get to the neuro appointment, the more anxious I get, and the more prepared I want to be. I think by the date, I'll be so tightly wound that I'll cry, no matter what the neuro says. I don't do stress well. Thankfully my partner has a much calmer temperament.

 

[Rae1889]

No problem!

I will say this though. As much as it is going to stress you out. WRITE IT ALL DOWN! I didnt write things down on my first appointment and then had to wait 2 weeks to ask. Also make sure you ask ALL the questions you write down and write in his answers. Even if it seems like he already answered it. this way you can compare his previous answers *cuz that's what he's gonna do to your partner! this is to make sure he keeps his story straigh*

and dont let him intimidate you. Mine does and i can barely sweak out what i want to ask, so just ask and then write it down. get him to clarify if need be. ask about medications, side effects and when and how to take them. Tell him what YOU have noticed, because it might be hard for your partner to remember some events or how he acts after. Also don't tell him up front that you've done some research, but do speak in the terms you learned. this way he can't put anything past you and he knows that he cant just give one worded answers

If you catch something that seems different, question it. Like: there is no difference between generic or brand name seizure meds *my Neuro pulled this one on me* you can say that isnt what you heard because of the different fillers. etc etc

Also, ask him how long he has been a neuro, what he specializes in and how many patients he treats with Epilepsy etc. he wants all the background on you guys, he should fess up too. you have to be able to make an infomed descision as to whether he is the right doctor for you, and if not, ask if he knows of an Epileptolgoist and get a referal. I can garuntee you that if its harder to work with a patient that he doesnt understand all the ins and outs of disorder, he'd be happy to give you up for better care... *plus they have to refer you to another dr in Canada, if after a year, your results do not change. then yougo to a specialist in the disorder*

Hope that helps!!!

 

[occb]

Rae, you RAWK!:rock:

That sooooo helps soooooooo much -- you've given me many, many ideas on what to say and do while we're there. I'm already writing things down, and I will be quizzing him about how many E patients he treats. I know his specialty isn't epilepsy, it's stroke, but he was probably the first available neuro, since he's recently returned to practicing after doing a few years of research projects. Heh. I'm a research-a-holic and it's amazing what you can learn online.

 

[Rae1889]

yup.
you can google pretty much just about anything ow and get some pretty decent help. and then other times the help is sorta dangerous and sometimes silly

 

[occb]

yup.
you can google pretty much just about anything ow and get some pretty decent help. and then other times the help is sorta dangerous and sometimes silly

That's why I was hoping to hear about personal experiences from members with frontal lobe epilepsy -- people here are far more accurate when they describe their experiences than what I can find in a clinical description, and it's helped my partner and I a whole hekuva lot.

 

[Rach_nc1984]

I have been diagnosed with frontal lobe epilepsy. I have multiple types of seizures. What kind of seizures does your partner have? I have absence, simple and complex partial, atonic and tonic clonic. My absence seizures are very short (about 2 seconds) and I am aware of them. Usually, absences last anywhere between 10-15 seconds and the person is normally UNAWARE of them. I also have simple and complex partial seizures though not as common. During my simple partials my mouth moves as if I am chewing something with my mouth open, and make a noise which I can't really describe. I am unsure of what I do during a complex partial. During atonics, I can be walking and then just fall straight down. These happen in under a second and can be very painful as you might imagine. Just recently, I had a tonic clonic seizure and felt very sick the night before. I have never experienced an aura before a tonic clonic, and in general it is pretty rare, so I dont know if it was coincidence or not. I have been told that at the end of my seizure I make bicycle movements (which I have heard is common for those with frontal lobe E) afterwards I moan every time I breathe as if I am trying to cry but cannot. I dont remember doing this at all. I have also been told that I ask the time a lot. Again, I have no memory of this. I hope this helps you. Let me know if you have any questions for me.

 

[occb]

Thank you so much for responding Rach! I really appreciate it.

My absence seizures are very short (about 2 seconds) and I am aware of them.

Ditto for my partner, and he'll get a lot of them clustered together. He says he has to "finish" the stare before responding, but he hears me if I talk to him.

I also have simple and complex partial seizures though not as common. During my simple partials my mouth moves as if I am chewing something with my mouth open, and make a noise which I can't really describe. I am unsure of what I do during a complex partial.

My partner does these things in his sleep. Last night, for example, he chomped and at the same time made grabbing/scratching motions with his hand. He tends to have a lot of these clustered together.

During atonics, I can be walking and then just fall straight down. These happen in under a second and can be very painful as you might imagine.

Ditto with my partner. He also has them isolated to just his hands, where whatever he's holding he'll just drop. Or just one leg, and he'll fall over, or into things.

He also gets the opposite -- these massive spasms out of the blue. He'll kick his leg, or throw a coffee mug, or smash his knee on the underside of the table.

Just recently, I had a tonic clonic seizure and felt very sick the night before. I have never experienced an aura before a tonic clonic, and in general it is pretty rare, so I dont know if it was coincidence or not.

TCs are something he hasn't had yet (thank the gods), but he does have almost daily nausea, usually at its worst just after waking up, but it can persist throughout the day.

I have been told that at the end of my seizure I make bicycle movements (which I have heard is common for those with frontal lobe E) afterwards I moan every time I breathe as if I am trying to cry but cannot.

My partner's only done the bicycle once. He tends toward the pelvic-thrusting motions. He moans loudly a lot -- sometimes before he does these things, and sometimes after. All of these happen in his sleep.

In the daytime, he tends to mostly space out, but sometimes he does really complex things, but has no memory of them.

Recently he's had more instances of "unexpected napping" and "waking" up to the front door being wide open, or the heat turned too high, or he's surprised that I'm home, because he thought it was still noon. These normally happen when I'm at work, so we don't know what actually goes on during these episodes.

I dont remember doing this at all. I have also been told that I ask the time a lot. Again, I have no memory of this.

When he has his bad days, he'll ask about the time a lot, or he'll ask me over and over what day it is. Eventually he'll remember, but it takes a few rounds.

I hope this helps you. Let me know if you have any questions for me.

It helps a massive amount, thank you Rach! I know everybody is different, but just seeing the number of similarities makes me more sure that we're on the right track.

I do have some questions -- do you ever experience pins and needles through your body? Or inappropriate laughing or crying?

 

[Rae1889]

Recently he's had more instances of "unexpected napping" and "waking" up to the front door being wide open, or the heat turned too high, or he's surprised that I'm home, because he thought it was still noon. These normally happen when I'm at work, so we don't know what actually goes on during these episodes.

I thinkt these might be tonic/clonics. He does not HAVE to bite his tongue to show he had one. if there is anyway that you can set up a video camera in your home, this way you can catch it. Usually after I have one and chad isnt home, after I wake up I do some pretty odd things and throw myself in bed or on the couch.

if not, these are complex partials, and if your not catching how many he has when your gone, he could go status.

 

[occb]

I thinkt these might be tonic/clonics. He does not HAVE to bite his tongue to show he had one. if there is anyway that you can set up a video camera in your home, this way you can catch it. Usually after I have one and chad isnt home, after I wake up I do some pretty odd things and throw myself in bed or on the couch.

if not, these are complex partials, and if your not catching how many he has when your gone, he could go status.

That's my worry. I call him a few times a day, just to make sure he's okay. He's very dutiful in answering, because he knows I fret. The video cam is a great idea. I wonder if I can set the web cam on my laptop to continuous record? Does anyone know?

It's not just that he hasn't bit his tongue, he also doesn't have any mystery bruises or injuries at the moment either (to both our relief), so I'm more inclined to believe they're complex partials instead of TCs, but, honestly, who knows.

 

[Crystal11]

Has a neurologist seen your husband?
Has an EEG, MRI, CT and other tests been done to give a definate diagnosis of Epilepsy?
Does he take medicaion of any kind to help with his seizures?

It is always good to video tape a seizure if you're not sure what it is. A neurologist could look it over and tell you what they think as far as behavior/ symptoms.

When you mentioned that he needs to "finish a stare"- is he able to understand you during the whole thing? During the Absence type seizure?

Take care
Crystal

 

[occb]

Has a neurologist seen your husband?
Has an EEG, MRI, CT and other tests been done to give a definate diagnosis of Epilepsy?
Does he take medicaion of any kind to help with his seizures?

We have an appointment with a neuro on Monday morning. It took us 3 months to get in. Hopefully he will schedule all of that. He's on lamotrigine which was prescribed by a psychiatrist for a mood disorder, but the psych suspected he may have seizures. He's on xanax too, because he couldn't get them to prescribe clonazepam, which he's always found way more effective.

It is always good to video tape a seizure if you're not sure what it is. A neurologist could look it over and tell you what they think as far as behavior/ symptoms.

We will definitely try to do that.

When you mentioned that he needs to "finish a stare"- is he able to understand you during the whole thing? During the Absence type seizure?

Usually he can hear me but can't repsond, because he is driven to finish the stare. Sometimes though he isn't conscious of what's going on, but that's less common. They're not classic absence seizures which is what confused me for a while, until I read the description of frontal lobe E, and it all fell into place.

Take care
Crystal

Thank you Crystal, you too!

 

[tam bam]

Wow Occb! I just read your thread and I am amazed by your courage for sticking by your partner. I was just diagnosed with frontal lobe epilepsy this week. It has been a long and hard journey for me but my neurolgist finally looked over my VEEG twice and found the abnormality that was 3 seconds long. He missed it the first time around. Word of advise do not get discouraged if the neurologist does not find it the first time around make him/her go back and either re-do the test or look over the the EEG again because frontal lobe epilepsy when is shows up on EEG is usually less than a minute from what my neuro said. He suspected this and that is why he went back and looked at it again.

I am no doctor by all means but your partner and I have a lot in common with the seizure types. I too experience the stomach aches (nausea & vomiting, sometimes projectile), screaming and yelling profanities for no reason at all. I will run out of the house for no apparent reason and start walking down the road (sometimes run), make odd mouth movements that flow into the neck, memory problems, absence seizures, drop seizures, complex partial seizures (sometimes these generalize), simple partial siezures, I will throw objects for no reason, I have been known to get violent and hit people for no reason, cannot talk at times, cannot move body parts at times, weakness in body parts at times, I get this intense fear, I will start crying for no apparent reason, repeat words, say words that don't make sense at all, I sometimes see hallucinations, have headaches, and the list goes on. Oh yeah the waking up in the morning a feeling like crap thing, I know how your partner feels there as well. I used to get that a lot and still do from time to time. I used to stay out of work a lot with that. It is very hard to describe but I would stay in bed for most of the day and if I did get up I felt as if my head was going to explode and I felt an outter body experience.

I have recently come across a great article on frontal lobe epilepsy that I would like to share with you. I will private message you the article and I hope it helps you and your partner. Please keep me updated on how it goes with the doctor visit.

tam bam

 

[occb]

Wow Occb! I just read your thread and I am amazed by your courage for sticking by your partner. I was just diagnosed with frontal lobe epilepsy this week. It has been a long and hard journey for me but my neurolgist finally looked over my VEEG twice and found the abnormality that was 3 seconds long. He missed it the first time around. Word of advise do not get discouraged if the neurologist does not find it the first time around make him/her go back and either re-do the test or look over the the EEG again because frontal lobe epilepsy when is shows up on EEG is usually less than a minute from what my neuro said. He suspected this and that is why he went back and looked at it again.

Aw, thank you tam bam. I am a bulldog when I have to be -- and I will make sure he gets the medical attention he deserves. He's been blown off by docs and others all of his life, and that's not going to happen on my watch. I'll find a way to point the neuro in the right direction, should it come to it.

I am no doctor by all means but your partner and I have a lot in common with the seizure types. I too experience the stomach aches (nausea & vomiting, sometimes projectile), screaming and yelling profanities for no reason at all. I will run out of the house for no apparent reason and start walking down the road (sometimes run), make odd mouth movements that flow into the neck, memory problems, absence seizures, drop seizures, complex partial seizures (sometimes these generalize), simple partial siezures, I will throw objects for no reason, I have been known to get violent and hit people for no reason, cannot talk at times, cannot move body parts at times, weakness in body parts at times, I get this intense fear, I will start crying for no apparent reason, repeat words, say words that don't make sense at all, I sometimes see hallucinations, have headaches, and the list goes on. Oh yeah the waking up in the morning a feeling like crap thing, I know how your partner feels there as well. I used to get that a lot and still do from time to time. I used to stay out of work a lot with that. It is very hard to describe but I would stay in bed for most of the day and if I did get up I felt as if my head was going to explode and I felt an outter body experience.

I am so sorry you suffer from these issues too tam bam -- they can be so debilitating, and people just don't understand. His family is the worst. They have no sympathy or understanding for what he's going through, and have treated him like he's dumb and delinquent since he was a little boy. I have such a desire to punch them in the mouth every time I see them (which, fortunately, is not often). My mom is really the most supportive person we both have in our lives. She's my back-up bulldog.

I almost started to cry when I read your long list of symptoms, because they are like what my partner experiences. The fear, nonsense words, visual hallucinations of squirmy colours, out-of-body feelings, raging temper flare-ups, needing to wander around and not knowing why (to the point of running away from home many times when he was a teen), amongst many others.

I have recently come across a great article on frontal lobe epilepsy that I would like to share with you. I will private message you the article and I hope it helps you and your partner. Please keep me updated on how it goes with the doctor visit.

tam bam

tam bam -- you're a godsend. Thankyouthankyouthankyouthankyou!

 

[tam bam]

Occb,

Your post touched me(I am in tears at the moment). I think God has lead me to you. It is funny how things turn out that way. Your partner is very lucky to have you. Keep being a bulldog, please do. I had to be the bulldog for myself. I almost gave up many, many times but after being knocked off my horse many, many times I got back on with my head held high and finally found that doctor who believes in me now and I am going to get that help I finally deserve, I just know it!! Keep at it and don't ever, ever give up. I know your partner will find the help he deserves. I just know it! I just hate reading that he has to suffer with this disorder and being accused of everything else underneath the sun until he gets that final diagnosis. Take care and keep me posted.

tam bam

 

[occb]

*Big Hug*

I'll be your electronic bulldog tam bam: I'll spam your doctors into submission :lol: You're so strong to have persevered on your own, and to remain so positive. Be proud of yourself.

So I read the description of your seizures to him, and he nodded at everything. At the point where you wrote about the screaming and yelling profanities and needing to walk, he exclaimed "that's a panic attack." I've never seen him have one of his panic attacks (or seizures like that. Hopefully we'll know which it is soon), so I never knew the screaming and yelling profanities were familiar experiences for him