father w/little kids/history of brain injury

[imaayafa]

hello. i am new here and have some questions. background:
my husband, 33, had a critical head injury at age 19 and a one-wk coma. since then he has memory and concentration problems, slowed comprehension in only certain subjects and at certain times, and a combo of other difficult to describe neuro / cognitive issues that are not always immediately apparant. we have 2 kids, 2 and 4 yrs old.
3 wks ago he woke up after 1 hour of sleep and came into the living rm to say hello to me in the way he does when he is half asleep. a few mins later i heard a huge bump-bump-bang....found him flat on his back, unconcious, eyes wide open and moving around...and he had an erection. when he came to he was very weak and confused and thirsty...drank 5 glasses of water. the ER doc said it was an epileptic seizure.
he also said that sometimes when i think he is flaking out in the middle of a conversation and when he drops the dishes while washing them that they might have been petite mals all the time.
he started him on tegretol and clomex. he is having headaches, dehydration, fatigue, mood swings and depression.
the dr says its too dangerous for him to be alone w/the kids until we figure all this out...he is having EEG tomorrow and MRI next week (middle of the night and i'm worried about him becoming overtired).
QUESTIONS: is there anyone out there who only started seizures many yrs after a head injury? is there anyone with similar background? are his neuro symptoms going to be worse now bc of episode(s )and meds?
and what about the kids? our whole life has changed...he can't drive and our little one is in preK 3kilometers from our home on foot or by bus i have to take him down 150 steps. twice a day. i'm losing a lot of work. my hub used to take the kids to the park every sat and be with them 2 nights a week so i could work....his family is not coming to help and mine live in a different country. will be happy to hear any advice from people in similar situations, either with a history of head injury/neuro problems and people with small children, etc. how do you handle the child care, what is permitted? and how do i know its really epilepsy if he only had one full on seizure? will the MRI give us answers?
thank you so much!

 

[Nakamova]

Hi, and welcome to CWE!

Good for you for looking for answers during what must be a scary and frustrating time for you. I hope you and your husband feel better soon.

I had a severe head injury at age 5, but I didn't have my first seizure until I was 35. In the 5 or so years preceding the seizure I had some vary infrequent warning signs -- brain skips, mild jerking of the hands once or twice -- but that was it. So there can be a delay. The head injury may have left him with a lowered seizure threshold and other triggers later may have put him over the tipping point.

The other symptoms you describe, like the flaking out, do sound like petit mal seizures, so it's likely that he's had the seizure disorder for a while. So even though he's had only one convulsive seizure, it's quite possible that he does have epilepsy. (Epilepsy is a loose term for over 50 kinds of seizure disorders. The majority of people with epilepsy don't have the kind with convulsions).

The MRI and EEG may help confirm a diagnosis, although its possible to have negative test results and still have epilepsy. If your husband's seizures can be controlled, there shouldn't be an issue with him being around kids. There are quiet a few anti-seizure meds out there, something isn't working, don't be shy about asking the neurologist about alternatives.

Best,
Nakamova

 

[imaayafa]

thanks for your message nakamova. i have add'l questions:
1) what happened after your first seizure...did you continue to get them on a regular basis?
2) did you have any neuro/cognitive affects from your injury at age 5, and if yes, were they worse after your seizure and after taking meds?
3) how long did it take you to get used to yr meds and get them to the right levels?
4) how long does a person have to be seizure-free in order for the epilepsy to be considered controlled, so that he can take the kids out or be alone with them at home? i know there are specific rules for driving but i'm curious about the larger picture.
thank you!

 

[Nakamova]

After my first seizure, I was put on medication right away. My seizures respond well to medication, so as long as I'm medicated I don't have seizures. Over the past ten years, there have been a few times when I've tried to go off meds (under doctor's supervision) and I've had seizures as a result. As long as I'm on the medication I'm seizure-free.

After my childhood head injury I suffered from very painful headaches from time to time, and later some infrequent migraine aura (scintillating lights in my field of vision).
But post-seizure/medication I haven't had the headaches or the aura.

I'm on my third medication now. But in each case I had seizure control right away. With the first med I was put on (Dilantin) I was over-medicated at first -- the side effects made me dopey and clumsy and out-of it. Since I was new to epilepsy then, I didn't realize that the meds were the problem rather than the seizure, and I didn't have the experience to know how I was "supposed to feel." But my neurologist eventually realized what was going on, and I tapered down to a dose where the side effects were less, but I still had seizure control. My neuro didn't like the potential long-term effects of Dilantin (it can drain calcium from the body), so she had me switch to another med, Zonisamide. But Zonisamide gave me low blood sugar which in turn affected my mood, and made me more vulnerable to seizures. So I switched then to Lamictal which I'm on now. The first few months on Lamictal the side effects were more pronounced. Some of them -- hair loss, insomnia -- have gone away. Others -- dry mouth and eyes, occasional blurry vision -- seem here to stay. In each case, while I had seizure control right away, it took me a few months to get "used to" my med, and get a handle on what the side effects were, and whether they were tolerable. However, it's important to remember that it's different for every person. Not everyone gets the same side effects. A med that works for one person might not work for another. A dose that works for one person may not work for another.

If your husband isn't having seizures, then he's seizure-free. As to whether and when he's controlled enough to be alone with the kids -- that's a judgement call you and your husband will have to make. Since you're in the early stages of the diagnosis, it's probably too soon to know for sure whether a seizure-free week will turn into a seizure-free month and then a seizure-free year. A part of epilepsy is learning to gauge how the body responds.

Since your children are young, you might want to wait awhile before having your husband go solo with the kids. It's worth trying to explain to the 4-year old what to do in the event of an emergency. It's good to have cellphones handy, and perhaps have your husband wear a card or carry a bracelet that contains information about his epilepsy and medication.

 

[Bernard]

Hi imaayafa, welcome to the forum. :hello:

... QUESTIONS: is there anyone out there who only started seizures many yrs after a head injury?

There are several members here who have indicated that history in their case.

When I was researching information on brain surgeries (used to treat epilepsy by removing scar tissue that was identified as a focal point for the origin os seizures in the brain), I learned that the brain heals very slowly. It can take two years for the brain to heal from the surgery - forming cleaner surgical scars where before there was other scar tissue.

... are his neuro symptoms going to be worse now bc of episode(s )and meds?

It's impossible to divine the future with regards to epilepsy. He could find an AED that works like magic, struggle with the "AED carousel" - trying one med after another without acceptable results or find some other combination of treatment options (including diet, neurobehavioral therapy, EEG neurofeedback, etc.) that help.

I recommend this: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

My wife has epilepsy - I don't. We've gone through good times (seizures well controlled) and bad (multiple seizures every day, meds not working). When things are bad, it's really hard to see any light at the end of the tunnel. The key is to keep searching for answers to improve the seizure control.

Kids are resilient, and they are also sponges - adopting attitudes and behavior/reactions from cues from mommy and daddy. Be honest with them. :twocents:

... how do i know its really epilepsy if he only had one full on seizure? will the MRI give us answers?

You described enough episodes to reasonably believe that he's had multiple complex partial seizures. An MRI can confirm scar tissue in the brain from any head trauma, but won't give conclusive proof that one has epilepsy. It can help pinpoint a focal area in the brain where seizure activity may be originating (which might also be corroborated/confirmed with an EEG test). If identified, he might be a candidate for a brain surgery (to excise the offending scar tissue).

Some good general info: http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

 

[skillefer]

Hi! Welcome to CWE. Brain injuries can cause seizures. They are a primary cause for mine. I however, was diagnosed soon after my TBI. As for your hubby,you might find the medication might help. Especially if he ever had any staring off into space episodes. AS for the kids. I find that kids are actually pretty good about it. Just remember that they take their cues on how to react from the people around them. So if they see you panic and get scared, they are more likely to react paniced and scared.

 

[imaayafa]

thank you all for the feedback, it's helpful to hear other people's stories.

figuring this out is slow...3.5 weeks later we are still waiting for the results of the eeg...and he is first having his MRI two days from now in the middle of the night...his meds have some bad side effects and the blood tests showed him low in sevl vitamins and liver enzymes look borderline low....but he says the meds also prevent him from having sudden catastrophic feelings....i don't remember him having such feelings before the seizure, except when people were dismissive of his neurological problems (he says having a brain injury is horrible bc you can't see that the person is injured so people are less patient with limitations) he says a few times he forgot the meds he would have these waves of darkness that don't happen with the meds...so i'm wondering also what this is about.
we see the family doctor tomorrow to discuss the blood results. he eats so well so i was suprised to see his blood results and am wondering if you have to be on vitamins and minerals and other supplements with the meds? i am also thinking about omega 3s, not necessarily as seizure prevention but for brain power overall...

our kids were sleeping when he had his seizure so they have no idea anything has changed for us. our concern was only what would happen if he was alone with one of the kids, especially the younger, and blacked out...bc the younger is only 2 and can easily get hurt if he is unsupervised, and of course is too young to provide help...the 4.5 yr old can understand better, but i'm afraid to teach him to call emergency in case he has a seizure, in the case that he might pick up the phone and call sometimes as a joke or when his father falls asleep, that it might confuse him....we are going to delay any decisions until all the tests are in.

my husband's initial brain injury was so long and i'm not sure anyone knows where his records are...so we don't even know what areas of his brain were injured...i'm praying the MRI will not only give us info about his seizure(s) but about what has been going on with him all these years, where the damage is, to help explain the major changes in his personality and skills since then...but i have been told not to have hopes bc often the tests don't give any information...

 

[Nakamova]

Some of the seizure meds can drain the body of vitamins, and in addition some brain problems can be caused or exacerbated by being low in certain nutrients. So unless the doctor objects, it's a good idea for your husband to take a multivitamin with B-Vitamins, Calcium, Magnesium and D. Omega 3s are also an excellent idea. (I take a flax oil supplement for this). It's also important to take the meds consistently.

The catastrophic feelings could be related to the area of the brain that's been injured. Injury to the temporal lobe area especially can produce odd sensations, including feeling of anxiety and fear. Make sure to let the doctor know about everything that's going on, and ask questions about everything too -- medications, side effects, what the tests might show or suggest, etc. -- until you're satisfied with the answers.

 

[imaayafa]

thank you. i will ask the docs about this.
are the vitamins you list typically in a multi vitamin?
when we saw the neurologist i told her that my husband had severe headache one night and it scared me so i started reading about the meds (tegretol and clomex)...found on the internet it said not to mix with grapefruit...he had drunk grapefruit juice thta morning...i asked her about it and she said "i don't know anything about that."

 

[Nakamova]

There are different multivitamins out there, but most of them have the Bs plus calcium, magnesium, zinc, and trace elements like manganese and selenium.

You're absolutely right about the grapefruit, and I'm surprised your neurologist wasn't aware of it. Grapefruit affects some of the anti-epileptic meds by messing with the way they are absorbed by the stomach.

 

[Nakamova]

In the case of AEDs, grapefruit tends to substantially increase the amount of med in the blood, although it can vary from person to person as to how much. The grapefruit effect can last up to 24 hours, so it's not just a matter of taking the meds at a different time. Best bet is to skip grapefruit altogether.

 

[imaayafa]

i am feeling upset that neither neurologist nor the family doc mentioned avoiding grapefruit. it was the first time i'd bought gf juice in years, what a fluke.
also when i told one of the neurologists that my husband has suffered many short-term memory problems since his injury, she gave him a word test, she said "chair, table, carpet" then she changed the subject, then she said one minute later, what 3 words did i ask you? this is not the kind of memory problem he has. those 3 words were related and the sentence was simple not complex. if i tell him to go to the store and buy milk, broccoli and paper towels, he has to write it down. if i ask him to make me hot cocoa and there are 3 step instructions, he can't remember all of them. or if we have a conversation and 3 days pass he might forget it. but one minute later a string of 3 related words? she also gave him a simple math test. and i tried to explain to her that he wasn't injured in the part of his brain related to math...it reminded me of the time he went to a neurologist and complained about his memory and she asked him to touch his nose with both fingers and hop on one leg and sent him home. i feel like these doctors are not seeing the extent of my husband's neurological symptoms because they are subtle...even though widespread...what should i expect of a good neurologist in such a case of seizures with TBI history?

 

[skillefer]

A good neurologist will listen to what you are saying. After all, you see your hubby everyday and may notice little things that even he doesn't. You live with the TBI...you know what you see. My suggestion, is to have your hubby keep a daily log. The reason, so that your neuro can see what your hubby deals with on a daily basis.

PS....if your hubby doesn't mind, you might want to video tape him for 36 hours and let the doc see the videotape...