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New Here-Daughter has NES-anxiety triggered

Tue, 08/15/2006 - 17:06
Hello, My daughter has had seizures since age of two. She had a normal EEG and they only happen sometimes when she is stressed/anxious over pain..such as a blood test or dental visit or even a small paper cut has set it off. The doctors said she "would grow out of it" Well sometimes she is fine and seems to control it... but other times she goes into a seizure and lasts several minutes! She loses her bladder and once seemed to quit breathing! She has gone years without an episode and then all of a sudden she will have one again. She is 25 now and really discouraged and worried and so am I. I am afraid she may have one while alone or while drving! I cant see her going into using meds when these episodes can be years in between. I know this isnt epilepsy because it only happens in trigger situations and not always. Anyone else here heard of this... advice? Thank You, Karin

Comments

Re: New Here-Daughter has NES-anxiety triggered

Submitted by Karen Jeffress on Tue, 2006-08-15 - 21:08
Hi KarinasMom, My daughter is in the same situation. She is 21 and has had four seizures in four years (three were in the first year) All seizures were triggered by extreme fatigue (i.e. coming home at 4am) and getting up normal time, combined with stress and/or low blood sugar. When you read people's comments on this site about issues with meds and tolerances changing over the years, it is really difficult to decide to go down the medication road when it appears that you can control the triggers with lifestyle changes. As a parent I am freaked out by the fact that sooner or later they will find themselves with a series of events, putting them at risk of a seizure. Whilst they can easily not drive and endanger others, they can injure themselves (we have had a dislocated shoulder and black eye so far...and that was landing on a relatively soft surface with no sharp corners etc.) We have chosen to give it a go one more time without meds. The last seizure was two weeks ago (provoked) and the one before was 18months prior. I think she has had enough of a scare now to really not put herself in the position again. But whether she will feel the same in three years...who knows. Because she is a professional recording artist/singer this could be a big ask given the irregular hours they lead. Good luck. Maybe we just need to keep strong lines of communication with our daughters to keep our voice in their ear. And we as parents need to listen to our instincts and respond to warning bells in our head. Our children still need us even if they are all grown up. I am particularly vocal when Peta has friends who are self centred and dumb, because these people are the ones who coerce her and help her to forget the reality of her condition and encourage a lifestyle of risk. Luckily she is open to my remarks and takes them on board. Keep in touch Karen (funny coincidence!)

Re: Re: New Here-Daughter has NES-anxiety triggered

Submitted by KarinasMom on Wed, 2006-08-16 - 09:48
Hi Karen, Thank You so much for taking the time to tell me about your story! Now that you mention the fatigue and general emotional stress it may explain why Karina has reaction in one instance but not another even though the "trigger" was the same. For instance ..she has had several blood tests over the last years and no problem ...then two months ago that set her off! Dental work... fine with it until two days ago getting the shot set her off. Now I remember her complaining last week about being very tired and stressed before this happened so it is probably the combination of factors that makes the difference. She works full time during day and is going to college full time some nights and weekends. I constantly try to encourage her to take care of herself and cut down on some of her schedule but she is a very busy young lady. Like your Peta she ends up pushing herself to exhaustion! Was Peta diagnosed as stress, fatigue and low blood sugar being the triggers for her or did you just have to figure it out? Did her doctor ever reccomend meds? Is she allowed to drive or been told not to drive? Karina is driving. I am so glad you responded because most of the people on here seem to have a diagnosis of some type of epiplepsy and even though we are dealing with the same serious seizures the treatments are not geared for the "once in a while" episodes and different triggers. I will keep in touch Karen! Karin

Re: Re: Re: New Here-Daughter has NES-anxiety triggered

Submitted by Karen Jeffress on Wed, 2006-08-16 - 18:23
Hi Karin It is nice to find someone with similar issues. When I read some of the other tragic stories it tears at the heart and makes me realise that we are actually lucky in some respects. Peta's first couple of seizures were explained as 1. Alcohol and night clubbing; then 2. working all day, performing at night and topping it off with a girlfriends birthday party. Both extreme situations. The specialists always maintained that fatigue was the contributor and did not diagnose epilepsy. After the third episode, she modified her life socially and started working on her music album for twelve months. The working sessions often went through the night until 4-5am and she didn't drive home until the next day. She had no seizures. Her third seizure was after a long flight home to Australia from London. The London trip was her first and somewhat stressful with many highs and lows. On her return, a girlfriend insisted on visiting and sitting up with her talking half the night...consequence a seizure resulting in a dislocated shoulder! The most recent seizure two weeks ago was after a long anticipated photo shoot for her publicity. There was a lot of drama, cancellations, rebooking and tension all around. A couple of days after the shoot, after working her gig at night, she was coerced into doing another photo shoot for her stylist the next morning, (home at 4am, up again at 8am). She seizured at the studio at 11am whilst quietly sitting in a chair resulting in a black eye. When she left that morning, I said to her that she shouldn't be doing this to which she replied, "I'm ok mum, gee I feel nauseous, can't eat anything, I'll get something later"....she never did. I should have listened to my little voice more! To answer your question. Yes the doctor warned us about fatigue. He has not recommended meds, however we have a mri next monday with a follow up with him. He may recommend meds then pending results. I think in our case the combination of at least two factors greatly increases the risk of seizure and that one factor is probably not enough to cause too many problems. I think emotions and adrenalin may cloud our judgement as to whether we actually feel tired, stressed, underfed etc. Perhaps we just need to do the sums, i.e. if we have done this, this and this, we may seizure. Cheers, Karen

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