could you help me understand my epilepsy?

[girlwithadog]

I'm on 1000mg of keppra twice daily. I have "complex partial epilepsy with secondary generalization", whatever that means, diagnosed after an EEG last April.
I started on the Keppra in November (I think) when I went into my second trimester. They had ti increase as I got further into my pregnancy because the extra blood volume diluted the Keppra.
Next month I will go in to have my mefication slowly reduced so I'm not on too much. My baby is now 2.5 months old and I have not had my levels checked since having her and losing all that blood volume. My OB last month said she believed I was on too high a dose which is what has been causing my episides.
Well yesterday I was leaving home and driving with my baby in the car. I pulled to the stop sign and about to make a right. I went to put the car in gear and nothing. I tried to move my gand to the stick shift and nothing. My head was full of pressure and although I knew what I was supposed to do, I felt as if I were somehow trapped by something. Something was stopping me from being able to move to do what I needed to do . I tried really hard to move anything but my body was stuck, there was no moving it. It only lasted about 7-10 seconds but now I'm spooked thinking about the possibilities of it happening while the vehicle is moving with my baby in the car.
Now I thought when you had dpisodes you did not remember them so would this have been a seizure, aura, or neither? Something similar has happened quite a vit but normally its talking. I sit there trying to say something but it just isn't working and nothing comes out. I try hard and can't even get a slight muffle. Nothing. I don't try to move even because I'm so focused on trying to talk. Its kind of like sleep paralysis but while awake. I don't know if this is seizure territory. When I go back to the neuro and he asks if/what episodes since my last visit, I never know what to tell him about and what's not important. All of my episodes can really vary depending on unknown factors. Sometimes I black out, sometimes I can't move or talk, sometimes I tingle and get anxious, sometimes I'm confused beyond nirmal where words all blend together and just don't make sense and I am so confused I can't put real words together when I try.. so many other examples and I just don't know what us seizure field. So do these sound seizure related and worth making an earlier appointment since it is getting to be more frequent and I stay home with my newborn alone all day? It sucks because since they started happening a lot I'm too nervous to hold my baby much and limit myself. I just want to freely hold her!
When I talk to my neuro about these things he just sits on his laptop nodding and typing. Never says much about the episodes and what they could be. Eck
Also could you help me in helping my husband understand? He is a phenominal guy and has supported me through everything but when we met neither of us knew I had epilepsy. He was there for my bad tonic clonic and experienced serious PTSD from it. As I said we didn't know I had epilepsy and experimented with magic mushrooms. He thought I died and it happened during the peak so he was traumatized. He prefers not to think about it or accept it and when I have episodes he thinks I'm mad or something not talking to him. When I try to explain I think its epilepsy related he looks at me confused and drops the subject. I know its hard for him to accept it and understand and see it. I don't want him to be afraid of it but he is. Any tips on this would also be greatly appreciated

 

[Nakamova]

I have "complex partial epilepsy with secondary generalization", whatever that means.

That means your seizures start as complex partials (where you are conscious but semi-impaired), and then can potentially generalize (spread to the entire brain) with loss of consciousness.

Now I thought when you had episodes you did not remember them so would this have been a seizure, aura, or neither?

Partial seizures are ones that you DO remember, because they are taking place in only "part" of the brain. Partial seizures that lead into generalized seizures are often called "auras". So in epilepsy, auras = partial seizures. What you experienced in the car and at work sounds like "complex partial" seizures, ones where you were aware but partially impaired (either in body or in speech).

The tingling/anxiety seizures are "simple partial seizures". They are "simple" because you are fully alert/aware for those.

Roughly speaking:
-- Simple partial = full consciousness, but unusual sensations
-- Complex partial = impaired consciousness/awareness, with some loss of control of speech or movement
-- Generalized seizure = full loss of consciousness, either very brief (absence seizure) or with convulsions (tonic-clonic).

Your husband should definitely learn more about the different forms of epilepsy. Many people are aware of the tonic-clonic variety but have never heard of the other kinds of seizures. If you can't get your neuro to explain the distinctions to your husband, try printing out the information from these links:
http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures
http://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures
http://www.epilepsy.com/learn/types-seizures/secondarily-generalized-seizures

 

[Cint]

Hi girlwithadog,

Congrats on having your baby! Since you've had your baby, you need to see your neurologist and tell him/her what has been going on. If this neuro just sits there, typing without offering any advice, time for a new dr, one who will help you find what treatment will work for you. All of what you just described here definitely sounds like seizure activity and often times for women, hormonal changes can increase seizure activity. And please do not drive while experiencing these, especially if you black out during these episodes. Think of your newborn in the car with you.
And check out this website:
http://www.epilepsy.com/information/women/epilepsy-and-pregnancy/after-baby-born

Your husband needs to get in the same boat with you and think of you. How much have you been traumatized by all this? Have him think of the baby and how it will traumatize his child as the child grows. If he is a phenomenal guy, then he will do all he can to help his wife out with understanding epilepsy and seizures.
Have him check out these websites:

http://www.epilepsy.com/learn/about-epilepsy-basics
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy

or go to the neurologist with you and have the dr. speak to him about it.

Hope you find something that works! :hugs:

 

[girlwithadog]

Thank you all for your help. I've learned a lot from the links and think I havr a better understanding. If I'm having a partial I remember the event.
If it's simple I am more aware and more control of my body but when I lose control of my body it is complex? Like the episodes where I start to lose focus and my eyes roll back and my head falld backward. I remember it happening but I can't stop it from happening.
And the secondary would be the absent, drop, TC ones where I lose consciousness?
My neuro sucks big time. He never explains things and never listens to what I am saying. Problem is the only other neuro in my toen I already tried and he was worse. Sent me home saying I would likely not have another. On his notes though he wrote "informed patient of possible additionally seizures". Jerk.
The closest besides these two are over an hour away and I don't drive fast, long, or winding roads which would be the drive if I went out of town

 

[Nakamova]

If it's simple I am more aware and more control of my body but when I lose control of my body it is complex? Like the episodes where I start to lose focus and my eyes roll back and my head falld backward. I remember it happening but I can't stop it from happening.
And the secondary would be the absent, drop, tonic clonic ones where I lose consciousness?

Yup, you've got the gist of it. There's not a hard-and-fast line between simple and complex partials, but as you start to lose control and are only semi-aware of what's going on, then that's when a seizure is spreading and becoming complex.

Simple partials show up in a wide variety of ways, but a person tends to be fully alert and in control of their body when they happen. Simple partials take the form of things like distorted perceptions, phantom smells, odd feelings of anxiety/tingling/deja vu, garbled speech, etc.

Sometimes the person having a complex partial will be doing something like smacking their lips or picking at their clothing. They may be walking and talking but not in a controlled way. They are conscious, but it's closer to sleepwalking.

 

[Belinda5000]

girlwithadog

Just because you don't drive fast doesn't mean you can't injure yourself while your driving or someone else if you have a seizure.
I've never driven and there are alot of people that don't drive that have epilepsy.
Driving scares me to death with all the crazy drivers out there.I'm lucky enough to live in a city with public transit tso I can get around.

 

[Kgartner]

I highly highly recommend that you find another neurologist ASAP - preferably an "epileptologist", a neurologist who specializes in epilepsy - even if you need to drive an hour or longer to get there. In most cases you will only need to see them in person once or twice a year - the rest of the time you should be able to consult with them over the phone to get what you need. It will make a HUGE difference for you. Just the fact that you were sent on your way with a prescription and not even the most basic understanding of your condition is an indication that he is not the right neurologist for you. Honestly, I find that absolutely shocking.

In addition, your husband really needs to accompany you on the appointment, at least for the first one. He needs to understand your condition, and begin to learn how to deal with it and take care of you. I do understand his PTSD - I have seen my daughter have several seizures and at some level I know I was traumatized as well. It is a very difficult thing to see. However, and this is way more important, epilepsy is a complex and life-changing disease, and by being in denial about it he is putting your health at risk. He needs get over it, and help you understand and get control of your epilepsy, for your sake, for his sake and for your child's sake. He can also be the a very valuable source of information for the neurologist, particularly when you have seizures that cause you to lose consciousness. I know way more about my daughter's seizures than she does, mostly because (as she says) she's not "there" for them (she has the same seizure type as you).

Finally, as others have said, I do think that you need to stop driving for a time until you have a better handle on things. Based on what you are saying, I think you are lucky that nothing has happened so far. Each state has it's own rules about driving and seizures, so I'm not going to give you specific advice about that, but I'm very, very surprised that your neurologist has not discussed this with you already.

Finally, see if you can discover any patterns with your seizures. Do they happen more at certain times of the day? After less sleep? When you skip a meal? Any "triggers" or patterns that you see will help you to feel more comfortable with holding and being around your baby at other times. Also, based on what you have said it sounds to me like sitting, lying down or rocking with your child would be 100% OK. A 2 1/2 month old doesn't need very much! Try to relax and enjoy and KNOW that with the right care you can get a better handle on your seizures and start to feel more relaxed.

Good luck!

 

[girlwithadog]

Thanks again for all of the supportive replies. I want to clarify on the driving. I used to love driving and drove across the country fairly often before learning about my apilepsy. Once I had a tonic clonic the hospital told me they eere required to inform the DMV and my license would be suspended fpr three years. I stopped driving before that incident anyways because my car was totalled (my hisband was driving during the accident). I had my drop seizure while in the passenger seat since I wasn't able to drive and was under the impression that it eould be another three years.
It took a while for me to see the neurologist (I didn't have insurance at the time) and was only able tp afford three visits from the tonic clonic on. About a year after my drop seizure I was able to get insurance and have an EEG. I hadn't been driving for about three years at this point. When my eEG results came back I asked my neuro when I could drive again. He said our statr has no minimum time between seizures and that it is up to your neuro prettyuch. That the only thing that would happen is I could get sued if I hit domeone and the neuro told me I couldn't drive. So I asked when he thought I would be able to drive and he said a month after taking medicine that worked. I got on the meds and started driving when I stopped losing consciousness (absents) and each appointment I bring up these other episodes and he either appears to be ignoring me or often he looks at me and shrugs when I ask if it's related to the epilepsy. Like the visual distortions I get and had during the EEg. I adked if that was possibly the activity that was shown on the EEG and he said he didn't know. I know doctors are busy but maybe they should schedule less appointments so they can sit down and actually listen. I know I'm not the only one with these questions but these questions do pertain to my life and the wuality of it. Sorry for the mess of typos

 

[SayThatAgain?]

Congratulations on having a daughter! I certainly understand your reluctance to hold her, especially while walking (I was the same with my granddaughter). I would suggest a bassinet with wheels so you can move her from place to place while at home.

Others have given you great information and tips, so I won't expound much on those. One exception is your doctor's. You definitely need new ones! E is certainly not something a doctor should "blow off" like one of them appeared to have done. The other, well... It is good that he/she is taking good notes of what you are divulging about your seizures, not talking with you more in depth afterwards isn't good. One caveat though; I have found it easier to just give an average number of seizures a day then tell him about any that were "complex" or more serious as well as ones that really concern me and/or are something I have not experienced before. Basic and quick details. He can ask more details then if he wishes (and he usually does). Using "Seizure Tracker" or "My Epilepsy Diary" will help you and your doctor in a big way!

As for your husband... My best advice, beyond reading up and learning more about E, is to engage in some form of joint "therapy" sessions. Those can really help matters so long as he is open and willing to attend and do his part! I was fortunate that my wife was open and willing to do just that. What I did was individual sessions for a month or two then started bringing my wife in on nearly all sessions. I even brought my step - daughter in once in an effort to help her understand. Some therapists (or counselors) will only charge a small additional fee or non at all to do this. Shop around. Bottom line is that because of E, the nature of some of affects and Essential Tremor, both of us were having a really tough time keeping the marriage working. The therapy sessions essentially saved our marriage. I hope if you and your husband do the same that it will save yours as well!

Stay strong and don't give up!