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epileptic seizures? what do you think?

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Posted 3/14/2008 4:28 PM (GMT 0)
I've been reading through these posts for the past few weeks. I've noticed several members have a lot of knowledge about seizures and I'm hoping to get an opinion.  Here is my story...

My daughter had her first episode when she was 15 (she's 19 now).  She had this episode when she was in bed.  She reported it to me, and we reported it to the doctor.  She had few details but mentioned she felt fear and felt her eyes being pulled down to the left.  The episode didn't repeat itself and it was written off as a one time thing and all but forgotten.  Then, 3 years later, she had a similar episode.  That was October of 2006.  Since that time she has had many more episodes, averaging about 2/month and they are for the most part quite similar.  A typical episode would be my daughter waking up in the morning (between 6 - 9 am) and feeling dizzy.  She immediately sits up and feels paniced.  She calls to me and in a fearful voice says to me "talk to me, talk to me". At the same time her head and eyes are jerking to the left, she's aware of this and tries to control it but can't.  She wants me to talk to her b/c she believes if she's thinking of something besides how she feels, the episode will go away.  In fact, about 1/2 the time the episode will end at that.  But the other half of the time, it gets worse.  I will see her struggling to stop her head from jerking and a grimace will come over her face.  Picture it as if there's a hook pulling her mouth to the left side, against her will.  Then she passes out.  In this phase she stiffens up (she doesn't jerk) and doesn't breath. This lasts approx 30-45 seconds (but feels like hours).  After this she takes a deep breath and falls into a deep sleep.  She won't respond to me at all for a couple of minutes.  After that she slowly comes around.  I ask her a simple question every minute or so until she's lucid.  It's usually about 10 minutes before she responds/talks normally.  Often time she cries when coming around.  And she will have bitten her tongue.

Our family doctor sent her to a neurologist.  The neurologist sent her for an EEG (one normal and one sleep deprived) and a cat scan.  All results were normal.  The neurologist wasn't sure about the diagnosis but started my daughter on tegretol and set her up to see an epilepsy specialist.  The epilepsy specialist sent her for another EEG and and MRI and results came back normal again.  He spent a lot of time with my daughter on several different visits and also had her seen by a neuropsychiatrist.  In the end, he disagreed with the epilepsy diagnosis.  In the meantime my daughter developed Steven Johnson syndrome and was taken off tegretol.  The epilepsy specialist referred her to to an anxiety clinic and she's been seeing them for the last year.

Here are my questions -

1) I have noticed a marked decrease in the amount of anxiety she suffers from (she's always been what I would describe as a shy and anxious girl) and I am grateful for the improvement BUT the number of "seizures" hasn't decreased.  She is still averaging about 2 a month and they're usually during or right before her period.  If the "seizures" were caused or related to the anxiety, wouldn't she be having fewer??

2) do you agree with the diagnosis?? they have never considered having one of the video EEG's done. I'm guessing at this point she would have to see an epilepsy specialist to have that done. do you think I should push for that or am I being over anxious myself? (i tend to be like that too)

3) I worry about my daughter a lot.  She has put off university b/c of this health problem.  She doesn't want to be away from home until this condition is controlled.  She was accustomed to a certain amount of independence but now I find myself never leaving her alone.  I don't know how to deal with this.  I think she resents being babied at the same times appreciates my love and concern for her.  is there a right or wrong way to deal with this?? the anxiety clinic people tell me that I shouldn't worry when she's home alone.  their opinion is that she'll come to and be fine and i have to let her learn how to deal with this herself.  that's a tall order for a mom.

I thank all of you that managed to get through this long post.  Any advice would be welcome.  I want to do what's best for her.

Worried Mom

 

Posted 3/14/2008 8:30 PM (GMT 0)
It does sound like it could be related to epilepsy, but if tests are pointing away from that I think it's worth considering other options. Have you or your daughter ever talked to a Gyn about this? If these things are occurring around the time of menstruation, I would wonder about the potential of there being a hormonal factor in the episodes, and a Gyn would probably be the best place to start asking those kinds of questions.

For the anxiety question, it's hard to say. Panic attacks can come on even when a person seems not to be stressed or anxious under normal conditions. There can be triggers for that sort of thing that are so subtle that it can take a lot of investigation to find out what they are.

Otherwise, it really wouldn't be appropriate for us to say we agree or disagree with the diagnosis, since we (or at least most of us) are not doctors, and even if we were, we've not met with your daughter. It's always worth getting second opinions from other doctors when possible, however.

Ultimately, it sounds like your daughter has a wonderful and supportive mother, but I think it's a good idea to be aware of your level of care and attempts to "push" her to do more. The by-product of that sort of thing can be that she climbs deeper into her shell, and it sounds like that could be particularly detrimental for her. That doesn't mean, however, that you need to stop worrying or encouraging her. You are her mom, and she needs you to be there and supportive of her. There's really no right or wrong, but ultimately you do what you do out of love and concern, and there's nothing wrong with that. I hope everything works out ok for you both. Let us know if there are any new discoveries or changes.
Posted 3/14/2008 9:26 PM (GMT 0)
Thank you for your response. Your advice sounds logical to me. At the anxiety clinic she visits, I've asked for her to see a hormone specialist (would that be a gyn?) because I've seen the correlation between episodes and hormones from the onset. They've considered it but want to give their approach more time to work. I'm maybe impatient but I see everyday that she's dealing with this and it's not getting better as not good enough. If these are in fact nonepileptic seizures/panic attacks depending on which specialist you ask, the longer the "habit" of them continues, the harder to turn things around. She's been receiving treatment from the anxiety clinic for a year now; I believe I've given their method a reasonable chance. She sees her doctor again next week, I will try to push for additional treatment. I still would like her to continue at the anxiety clinic too; at least until she feels ready to leave.

And, fyi, there's no doubt in my mind she suffers from anxiety. And there's also no doubt in my mind that the anxiety clinic has helped her dramatically with the generalized anxiety she suffers from. It's these other "attacks" that cause her and myself huge amounts of stress. It was just a month ago that she had an "attack" that lasted longer than the others and I became scared so I called the ambulance. She was coming around when they arrived (they arrived in about 10 minutes, i was impressed) but the paramedics said regardless of the cause, her doctors should be finding some way to control the problem.

I have another question for you....how common is it to have 3 eegs, an mri and 2 cat scans come back normal but still have epilepsy?? If this, in fact, is rare I will stop barking up this tree. I'd just hate to see her dealing with all of this if there were meds to treat it.

Thanks again for your help.
Posted 3/15/2008 3:51 AM (GMT 0)
Sorry I should have been cleared. By Gyn I just meant a gynecologist. Because they specialize in treatment in and around the vagina and menstruation, they seemed like a good candidate for such a thing. If someone else specializes in hormonal related issues, even better!

When I was growing up, I had a seizure disorder. Mine was hereditary, and one that I grew out of as an adult. My onset occurred in the moments between the asleep and waking state. Because of that, my scans were often relatively normal. Part of the eeg involved flashing lights at me to try and induce seizures (and thus the brain wave issues) but there was rarely anything that out of place in my scans. This is not to say there were not irregularities, because there were.

Panic attacks are a very complicated thing, unfortunately. It definitely sounds like that could be a possibility, but until a solid reason is identified, I don't think there's anything wrong with keeping all the possibilities open.
Posted 3/15/2008 4:58 AM (GMT 0)

If it were my daughter, I would insist on the in-patient EEG, which sometimes takes 3-4 days.  I am 57 years old and was diagnosed less than two years ago.

She needs to be able to get on with her life and to do that she needs the right diagnosis and medication.  Learning to live with epilepsy has not been easy for me, but I'm learning.  This forum has been so helpful for me.

I can't say enough good things about Darren, our moderator and he is a college student himself.  He can probably give you much better advice.  He lives "across the big pond" as we call it, so we are usually on at different times.

Please let this forum be a good resource and support system for you and your daughter.

Prayers,

Carla

Posted 3/15/2008 7:49 PM (GMT 0)

Hello Riggs and Welcome to the Epilepsy forum.  I am Kitt.  You have received some very good advice and I will not try to make any gueses re the CT's/EEG questions.

I think Carla has a valid point as inpatient monitoring may be the answer to picking up what is happening with your daughter.

It does feel like you have done a wondeful job as a Mother getting her the medical care she has needed.  I wish for both of you only the  best.

Take care and again welcome

Kitt

Posted 3/17/2008 1:52 PM (GMT 0)
Carla - You've hit the nail on the head. My daughter and I feel we're in limbo. We don't know how to proceed. It's hard to manage a health issue when we're not convinced we know what the issue really is. We see her specialist tomorrow and I will push hard for the inpatient EEG. What, exactly, does this consist of?? The EEG's she's had have shown no abnormalities at all. I want to believe she doens't have epilepsy (the anxiety people said I must have faith in their diagnosis) but when I see these attacks it's so hard to believe a psychological issue could do this to her body. I've experienced panic attacks in my life but nothing like these. I never lost consciousness. They were debilitating until I learned to cope and control my anxiety but I was conscious and able to talk myself down...if ya know what I mean.

And kitt....thank you so much for your kind words. I want to do the right thing for my daughter but I often struggle with what's right. I tend to be over protective which may have contributed to her anxiety level today. I'm working on it...

I'm so glad to have found this place.
Posted 3/17/2008 11:48 PM (GMT 0)

riggs confused confused

A couple of things came to mind as I read your story.

You might also want to think about having a sleep study done on her.

1) It's very common for the tests (EEG,CAT scan, MRI, VEEG etc.) to come back normal.           That usually indicates that the "seizure activity" is located DEEP within the brain so most tests will not pick it up.

2) You mentioned in your first post that your daughter's first seizure came at night when she was 15yo. and was totally out of it for about 10 mins.when she woke up. (post ictal state)

 Is it possible that she could have some sort of airway obstruction during her sleep? Such as lying on her back, snoring etc. She could have a form of Sleep Apnia causing a lack of oxygen to her brain, combined with starting puberty (hormonal changes)

Here's my case, you might find it interesting as it relates to Sleep Apnea and night seizures.

I was diagnosed about a year ago with Chronic Obstructive Sleep Apnia.
After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out)
I have recently purchased a CPAP machine which provides constant air pressure and have noticed a vast improvement.
No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES.

yeah  Good Luck

Randy

Posted 3/18/2008 1:35 PM (GMT 0)
Hi Randy - Thanks for the info. One thing I should have added to my original post is that on the few occassions I've seen her sleeping prior to the seizure, she hyperventilates very heavily. Her chest and abdomen heave quite hard in the 30 seconds or so prior to her waking up and having the "seizure". It appears as though she's having a very upsetting dream. She's never been what I would call a good sleeper. Her sleep was always light and she never slept as as much as my other 3 children. She snores lightly on occassion. And, one other thing, most (90%) of her episodes have occured in the early morning from sleep; a few have been while she's awake. Do you still think it could be sleep related??

Because it's important for me to have faith in the diagnosis, I need to understand the diagnosis. I've read a lot of the posts here and what my daughter describes to me, along with what I see, seems to be a real seizure. I'm not sure what the doctors see that leads them away from epilepsy. There must be something, I just wish I knew. I will ask more questions when we see the specialist today.

I'm glad that you've been able to get your night seizures under control. My heart goes out to anyone who is enduring this health problem.

Thanks again.
Posted 3/18/2008 6:19 PM (GMT 0)

riggs,

Now I definately think it's sleep related.

Lack of oxygen during sleep and wake up in a post ictal state.

Think of it like you're drinking a lot of liquor and you're sitting in one spot ~ you feel fine. then you get up and try to walk.

Randy 

Posted 3/19/2008 3:17 PM (GMT 0)
We saw my daughters specialist again yesterday. They don't think the "seizures" stem from a sleeping problem. They still believe it's anxiety related. They see the hyperventilation as a symptom of her anxiety which leads to the episodes. They have agreed to send her to an ob/gyn to investigate the correlation between these episodes and her cycle.

And I need to clarify something.....she doesn't wake up in a post ictal type state. She wakes up pacnicked, then has a "seizure" immediately and seems post ictal after the seizure event.

I hope the doctors are correct in their thinking. I worry sometimes that doctors become more stubborn than anything. I don't want my daughter to pay for her doctors large ego. Again, I just want her to receive proper treatment. It's been over a year and the episodes are still happening at the same rate.

We will keep sluggin along. Thanks again.
Posted 3/22/2008 2:48 AM (GMT 0)
I developed seizures when I was about 12. I still remember the first one the best. But, I wanted to mention it just because it sounds a lot like your daughter's seizures. My first seizure ever was exactly what you described except I was at the breakfast table eating breakfast. Hook in my mouth pulled me to the left, etc, etc. Don't know if that means anything though, because I have never had another one like that.

Dealing with seizures in life:
I was unable to drive for all but the last two weeks of high school because of seizures. It was a pain to see all my friends doing it and I can't. So, I don't know about your daughter, but I really grew to hate leaning on people for help. I had to ask people to drive me everywhere to work to school etc etc. I don't think I would have ever survived without my Mom being there to support me every step of the way. So, please do not give up, and encourage her to go out with friends and not hide in the house. I would recommend pushing towards continuing school. The way I survived the first year was going to a school with friends that I already knew from high school. I could hang out with them, they already knew the condition and they were willing to be there when I needed them.

Suggestions:
1) Has your daughter done an in-home EEG? It has been a long time since I have had one or talked about it, but I am pretty sure they still do those tests. I would suggest to the doctor that maybe a week before her period to try out one of those tests for a few days. I don't know if its possible or don't know much about them right now.

2) I definitely agree with the sleep study idea. Just plan to put this about the time they most appear (close to her period).

3) I don't know how many different doctors you have seen, but if you are anything like my Mom it is probably a lot. If you live in or around Atlanta, GA area I would offer a great neurologist that I just started seeing when my situation with seizures popped up for the first time in a long time. His first question after I told him a quick summary of my life (first appointment) was to first ask if I have any questions.

4) This is possibly a down the road suggestion, but make sure she plans for this issue causing other problems in life. For instance, I am currently 26 in my first job, and moving here we looked at several apartment complexes (2 years ago). I ended up moving to an apartment complex that is literally right across the street from where I live (closer then I was to classes in college). I also picked it because I have reasonable access to the Atlanta mass transit system, a grocery store, and a Walmart. So, if something happened like it did 3 months ago to restart my seizure issues, that I am prepared to handle it now and will not totally interrupt my life.

Also, from me to you, I don't know anything about your daughter, but when I first started the whole seizure thing with my parents I hated everything about it. The drugs, the tests, the disruptions in my "normal" life, everything... So, I just wanted to say that if she ever responds with all the hating about this and hating you or whatever, I just wanted to let you know that the tides turned when I got older. I look back and all I think about is the support that my Mom gave me whenever I needed it. She was always there for me, and I never showed her the proper appreciation. So even if she is not showing it now, I would bet on it that a few years down the road that she will come back with new thank yous.
Posted 3/24/2008 5:55 PM (GMT 0)
Hi Zonne - Thank you for my reply. Tell me more about yourself. How many seizures/doctors did you see before getting your seizures under control? Are your seizures considered epileptic in nature? I was surprised to read that only your first seizures was like the "fish hook" in the mouth thing. What are your others like?? Do you feel a rush of terror when yours start?

I'm sure your mom knows how much you appreciate her. My daughter doesn't always show her appreciation but I know it's there. Besides, it's my job to look after her whether she appreciates it or not. he he

Riggs
Posted 9/5/2008 5:03 PM (GMT 0)
riggs Your daughter and I have a lot in common. Pull up Dystonia on the computer. I have this disorder. It may be the answers your looking for? hugalot
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