Confused about epilepsy

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Hi,
I have not been on for a few weeks- background-15 year old daughter started having TC seizures out of nowhere in the end of October. No cause identified. She has since had 4- all at school. MRI normal, 30 eeg showed a slowing in the left frontal temporal lobe. She is diagnosed epiliptic. Shes on generic keppra 1250 a day and folic acid. Her last TC was this wednesday. Anyhow, here's whats confusing me- we are doing a 24 ambulatory eeg next week. What are we going to get out of this? I just do not understand how any of this will help? Will it put a name to her type of seizures and maybe indicate a defferent med or something?
I am sad, I am confused and I just dont understand if any answers will ever come which will change anything?
Sorry if this seems pathetic or dumb...
Jennifer
 
You're not being dumb.

A 24 hour EEG, I think is what this will be. More time hooked up means there is more of an opportunity to catch irregularities. This may pinpoint an issue, but it may not. I have had up to 72 hours and there is still no known reason that I have had seizures. It DID help diagnose more issues, though.
 
Hi Jennifer --

The longer EEG may be used to confirm the findings of the first one (if it was all ambiguous), to look for nocturnal seizures or other sleep quality issues, and/or to see if the medication is effective. And in some cases, having a more precise sense of where the seizures are originating can help determine what medication may work best.

However... if none of the above reasons apply, the additional EEG could be completely unnecessary or of limited value. You should definitely contact your daughter's neurologist to have them clarify what they hope to find. That's their job! Be persistent until you are satisfied with the information they give you.

And please feel free to ask questions here as well! Neither dumb nor pathetic, trust me. This must be a very tough time for you. Gathering information (and support!) can help.

Best,
Nakamova
 
Thanks! This is such a frustrating condition as you all know. I think I spent the last few weeks thinking everything was going to go away but the seizure this week really hit home that we may be in this for the long haul and the reality of that is frightening. The lack of progress, answers and solutions for epilepsy is mind boggling. She may be stuck with this for life and I am so worried for her safety and ability to have a "normal" life. It just seems that unless there is an abnormality in the brain which can be operated on- the odds of this going away seem dismal.
 
Epilepsy may be unpredictable, but in the majority of cases (70%) it is entirely treatable with medication, especially if you get the seizures under control soon after onset. Yes, it can affect a person's life -- but that doesn't meant that it will define it. Though everyone's definition is different, I think I enjoy what many would consider a "normal" life: I live independently, drive, swim alone, and am gainfully employed. I am "stuck with epilepsy for life" but it barely figures in my daily existence, and many of my friends and acquaintances have no idea that I have a seizure disorder.

I absolutely understand your fears and concerns for your daughter -- you're her mother, that's your job! :) -- but try not to fixate on the worst-case scenario. Take heart from all the amazing CWE members who are living with epilepsy in creative and inspiring ways.
 
Hi. I second what Nakamova says about being able to have a normal life with epilepsy. I was officially diagnosed when I was 23, but had almost certainly been having partial seizures, and maybe even some tonic clonics, for years and years before that. I've been on meds now for 32 years, drive, ride bikes, climb rocks, play the piano, have gotten two college degrees, have had a couple of careers, am active in all sorts of things, etc. My tonic clonics are pretty much totally controlled with meds but I have several hundred partials a year, which have not really affected my day-to-day life too much. Sometimes I think that my epilepsy is in some ways harder on my wife than it is on me. I get frustrated and discouraged sometimes, and I'm currently looking into some other treatment options, but on the whole I want you to know that people with epilepsy can and do have very normal, productive and high-functioning lives. I'm glad I was not diagnosed until I was older and away from home so I was never stigmatized or overly protected by my parents or teachers.
I have no brain abnormalities that can be found, which is not unusual. Keep involved with forums like this, learn what you can about epilepsy, be proactive in working with your docs, and don't treat your daughter like she is "different". Try to be as normal as you can around her so she doesn't think that she is somehow at fault for causing you distress. Does that make sense? You can vent to us all you want here, either on the forums or in a PM, and that can help you to be more relaxed around her. You will all handle this!

One other thing: My daughter is 33 now and she had a tonic clonic seizure shortly after the birth of her first child almost 10 years ago. At first the docs thought it might have been hormonal, but she had more and has been on meds ever since then. I'm the only one she can really comfortably talk to about her epilepsy since I don't get bothered by it at all. It just is what it is. She handles it well, and I'm sure that a big part of that is that she grew up seeing that I had it and did just fine.

Best to you and your family!
 
If there is even a remote chance that the 24 hour ambulatory EEG might be helpful, I'd say go for it. 24-hours isn't very long, especially as there quite a spread between them, but as Nakamova says, maybe they want an evaluation of her EEG during her sleep.
The reason I say go for it is the importance of getting all the answers you can in an effort to get the best control possible. I went almost 2 years with a general neurologist who didn't believe they were seizures (they were thought to be a form of night-time paroxysmal dyskinetic dystonia of some sort). It wasn't until a doctor I was seeing for an unrelated reason referred me to a seizure specialist that I was properly diagnosed (frontal lobe seizures) and medicated. Control is far from perfect but it is felt that if I was properly diagnosed from the beginning that I would have much better control. Not to scare you at all, but from experience I know the importance of getting to the right specialist and getting all tests possible that might clarify the picture.
 
As always, I am hearing much of what I need to. I just referred my sis in law to this site. I hope she comes but she is much further down this path than I am.
I am trying to treat her as normal as possible- of course some rules have changed but I want her to know an believe she owns epilepsy - not the other way around. I think a lot if things I probably would never tell her. Perhaps we will get some good info from this 24 hour EEG. I am willing to try anything. I just have the suspicion that there will never be really good answers for her.
One question- would it be over the top if I got those faucet covers for her shower? Just in case she has a tc in there? I really don't want her to feel like a baby but I really don't want her hitting her head in those.
 
There can be a fine line between "being safe" and treating someone (or yourself, in the case of us adults here) like a baby, and it is very difficult to know where to draw that line. I would discuss the different issues with your daughter in order that she knows where you are coming from with your concerns, as you may have more concerns than just with the shower. Tap covers are a great idea, and also related to the shower is water temperature: should she fall in the shower you don't want her to get burned so you may want to consider lowering the temperature of the water.

Unfortunately not every corner of the world can be padded, but I see nothing wrong with at least making the home safe, esp. if someone has no warning prior to a seizure. Another consideration is nailing bookshelves or other tall cabinets to the wall.
 
Auctions said:
One question- would it be over the top if I got those faucet covers for her shower? Just in case she has a tc in there? I really don't want her to feel like a baby but I really don't want her hitting her head in those.
Click to expand...

IMO, it definitely wouldn't be over the top to get a faucet cover. But as mastejen said, even better, is making sure the water temperature is set a safe temp, usually 95 F (35 C). I had my 1st Tonic/Clonic on my way out of the shower while home visiting my parents and suffered 2nd and 3rd degree burns on my back and right arm. I was 22 years old at the time. I wasn't diagnosed at the time and wasn't taking meds yet, so don't mean to scare you.
 
Thank you again! Checking the temp in our water heater and am covering faucets. I will discuss this with her. To me it's just a safety thing- like wearing a seatbelt. That's all- there's a chance of ceasing in there and under my watch it's going to be the sofetest fall possible. Sure- most people don't require this but here we are and lets just be safe. I so hope I'm not suffocating her!
 
asking questions is never dumb.Ambulatory EEG will help answer docs questions about were here seizures are coming from.:twocents:
 
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