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late onset epilepsy and in denial

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Posted 5/24/2008 3:23 AM (GMT 0)
 

Hi,

I am hoping someone out there might be going through a similar experience, or can give me some advice.  Almost 4 years ago (age 31), 1 week before the birth of my second child, I was told I had a seizure in my sleep.  The only indicator I had was bite marks on my tongue and a feeling of 'wrongness'.  The first doctor I saw told me I had the flu and needed vitamin C (!), but the second doctor said no, it was a seizure and so I went for the series of tests.  A couple of weeks after my baby was born, I had another seizure in my sleep which my husband witnessed.  After more CT scans and an MRI, still nothing obvious was found and I was put on Epilim.

My circumstances changed, and life was pretty hard for a while, and I suffered from post natal depression, chronic sleep deprivation, malnutrition and was a borderline alcoholic.  My stress levels were through the roof.  I had to wait 9 months to see the only neurologist in my area, and he gave me about 2 minutes of his time to state that if I've had more than 2 seizures, I am epileptic.  He refused to consider whether the personal hell I was going through at the time was a cause of my seizures, stating that "if stress was a cause, he would be epileptic".  His diagnosis just crushed me, as it also meant the end of my career which I had spent most of my life working towards.

Anyway, I managed to get through my slump, changed from Epilim to Lamictal(nasty stuff), as my hair was falling out, got a lot healthier, got some sleep, and sought a second and third opinion.  I saw a Professor who specialised in epilepsy research, and he gave me almost an hour of his time, listened to my concerns and basically said that pregnancy can sometimes cause seizures due to the hormone changes, stress, depression etc., and that after 12 months on lamictal, I could stop the meds and there would be a 99% chance of not having a seizure again - as long as I stayed healthy and didn't get pregnant again.

Well, I've been off the meds for nearly 2 years, and siezure free since August 2005 - well, that is until last Sunday night.

I am absolutely devastated, as I am the healthiest I have been for a very long time, getting more sleep than ever, able to work in my chosen career as I was 2 years seizure free/off meds, and now I go and have a fit.

Is it time for me to just accept the fact that I am epileptic, and move on, or do I keep on searching for an answer?  I suppose, I just can't understand how and why it has come on this late in my life.

I would love any comments or advice.

 

Posted 5/24/2008 10:52 AM (GMT 0)

Hi there Sand and Welcome to HealingWell,

Being diagnosed with Epilepsy (or any orther Chronic condition for that matter) is a hard blow to take... and if it means the end of your career then that would be even harder. 2+ seizures would normally mean you were epileptic and the fact that you had a seizure while you were not pregnant would indicate that it was not the hormones causing it (although they may have triggered anythe onset of the epilepsy). Epilepsy can strike anybody at any age. Its not racist or sexist... it is no more prevelant in white, black or asian people or in males / females. The thing is that if you accept you are epileptic, that doesnt mean that it should rule your life. As with any chronic condition: you rule it... not the other way around. You may have to make adjustments.

One thing that does surprise me (Bearing in mind that you have seen a doctor, a neurologist AND a professor) is that NOBODY has given you an EEG (ElectroEncephaloGram). They are usually the first thing that doctors use in the UK to diagnose epilepsy. You can do a short one (about half an hour I think) or you can do video EEG's, 24-Hour EEG's etc... I have to be honest and say it sounds like epilepsy but I am not a professional. I would ask for an EEG to be done before I resigned myself to anything, but be warned that epilepsy wont always show up on an EEG. (It does usually but if the "epi-centre" of the seizure is deep within the brain, it wont always pick it up).

Finally, can I ask what you career is? I am interested to know how epilepsy affects it. Whether you are epileptic or not, you are no less of a person and certainly not a freak as some people label us. Please keep talking to us and if you need to know anything... just ask. There is no such thing as a stupid question if you dont know the answer.

All the Best

Darren

Posted 5/24/2008 9:18 PM (GMT 0)
Hi Darren
Thankyou for your kind response. I did have one EEG way back at the start which showed nothing, so it was assumed that any others would also prove nothing(!).
At the moment I work in the marine industry in positions ranging from cruise attendant to master of various boats, undertaking trips to the Great Barrier Reef, where I also have to perform rescue duties. Needless to say, a vessel is a vehicle, and being unable to swim at the moment - or indefinitely - I am not much use as a rescuer! I had actually reached a point where I got to do a few expeditions to Antarctica, and long trips across the seas, and now I have a huge 'red cross' on my medical, I will never be able to achieve this again. The laws are very strict when it comes to crew members with a history of seizures.
I think the hardest part with the epilepsy is the unknown, and I am such a control freak that I need to know how, when and especially why. And with an illness that I did nothing to cause (like an accident or something) I'm going to always have a hard time accepting something that just snuck up on me and caught me when I was down.
I know to a lot of you out there I probably sound like a selfish little sook, as my circumstances are by no means as difficult as many people's, I just need a little help accepting the fact I am Epileptic, and some information, as I live in a rural area with very limited access to specialists or information.
Thanks again Darren.
Posted 5/26/2008 11:09 AM (GMT 0)

Hiya,

I dont think there is anything selfish in the way you are aproaching this. I think 95% of people who are diagnosed with epilepsy probably react in the same way. I can give you all the information in the world... I know quite a bit about epilepsy, medications and UK law etc... so if you want to know something, just ask (Or shoot me an email... my address is on my profile - just click my name). As for help accepting epilepsy, I can understand how difficult it is. I am a very organised person and the unknown still gets to me ocassionally (Even after nearly 8 years). Im not sure how I can help you do that. Its very much an individual thing. For me, knowledge helped me accept it. For others it is something different. If I can help in any way, please tell me. As for the career, I can see how it is causing a problem. I dont think there is going to be any way round it since (As you say) the law is very strict about such things. Perhaps there is another tangent you can go off into within the marine industry (Such as research). Obviously someone else sails the boat but there is nothing to stop you heading a research team as far as im aware. Thats just one idea. You know the industry far better than I do so perhaps there are other ideas out there too.

Darren

Posted 6/3/2008 7:58 PM (GMT 0)
You say you are getting more sleep, but is it quality sleep?

Your story has some similarities to mine.  My own Nuerologist has never said I have Epilepsy, so I refuse to say I do on any paperwork I fill out.  The only person who have said I have Epilepsy was one of several Sleep doctors I have tried, and he was the only one who wasn't a Nuerolgoist and he tried to give me some pill for restless legs that my research said was a seizure drug. This was after spending 15 minutes with me on my first visit.  He also said "Dude, and "Whoa Dude" too many times for my liking so I left and never went back.

It SEEMS to me that most people who are classified as Epileptic continue to have occasional seizures even on medication.   I went 5 years after my initial siezure and was fine till I weened my self off Dilantin and then after several months I had another.  As long as I stay on the med I am fine. 

I am hoping my seizures are caused by Sleep Apnea, which I have. My Nuerologist is happy with the "crap happens" diagnosis.   Have you ever been tested?

Posted 6/3/2008 10:53 PM (GMT 0)

Sand1,

I think the best test for you to have done is the in-patient, 3-4 day EEG where you are videoed and monitored 24-7 the entire time you are there.  It doesn't hurt at all, it is just not any fun having all those wires stuck to your head and probably a few other places. After awhile, you forget you are being watched all the time.

You can pull your wires enough to go into the bathroom and that's about it.  You aren't able to take a shower while you are there.  You can take a sink bath.

I strongly encourage you to find a good neurologist and ask to have this done.  This should answer your questions once and for all and you will know what is going on.  Is there a teaching university  hospital near you?  That would be a great start.  My neurologist is at Vanderbilt University Hospital which is only a little over an hour away.

I hope you will consider having this done.  If you need to email me, feel free to.  If you do, put something about HW in the subject line.

Big Hugs!

Carla

Posted 6/4/2008 8:18 AM (GMT 0)
Hi guys!

Thanks for your responses. I am in Australia where our medical system is pretty crappy if you do not pay for private health cover. On top of that I live in a relatively rural area, and there is only one neurologist in the northern part of the state. The first time I saw him I had to wait 9 months, and then another 3 months for the follow up.
I have difinitely considered going to a sleep clinic, but I would have to take time off, as would my husband (to look after the kids), so we are a long way off being able to afford this. Let alone I may not get into the nearest clinic for months and months.
The professor I saw was at an epilepsy research centre, (but it is over 1000 miles away!) and I am going to see if I can do something with them in the future.
My only concern is does this test show you anything if you have no seizure activity while you are being monitored? Am I going to come out of it feeling like I learned nothing, and maybe even more disappointed than ever?

Thankyou all again for such kind words
Deb
Posted 6/4/2008 11:07 PM (GMT 0)

Sand1,

If you are having seizures, they will most likely show up on the 3-4 day in-patient monitored EEG.  They will even do things to try to bring them on, such as depriving you of sleep, making you wait later to have one of your meals, anything to put your body in stress.

I am sorry this type of treatment is not so readily available where you live.

Are they allowing you to continue to drive now?

Please keep us posted and let us know if there is anyway we can help you.  Darren should be back in a week or so and may have more answers for you.

Big Hugs!

Carla

Posted 6/9/2008 9:13 AM (GMT 0)

Hiya,

I think the 3-4 day EEG's are the best kind of EEG really since they catch you as close to real life as possible in a controlled manner. It is worth taking the time out of work to get it done. If they can find a specific trigger for you, then that might be an advantage for you so that you know how to avoid the seizures.

Darren

Posted 1/22/2009 6:30 PM (GMT 0)

I had at least three seizures while I slept (two were witnessed, the third I knew when I awoke). An overnight eeg sleep study was negative.  When I had my third seizure, I had a "sleep deprived" eeg where I had to stay awake the night before the test.  That test showed the seizure activity that was not detected with the sleep study.  My neurologist told me that it was not epilepsy but rather simply a seizure disorder; he prescribed lamictal, and I haven't had another seizure in my sleep of which I am aware.  He also said that I did not need to worry about seizures when I was awake.

When I had to change neurologist, he said that I could have seizures while I was awake, but in the five years since I have been on meds, that has never happened either.  He does not classify me as an epileptic either.  Hope that this helps.  I live in the USA, by the way.

Posted 1/22/2009 6:35 PM (GMT 0)

I should have also said that I suspected that the 1st test ordered, the sleep study, was done because he was the head of the sleep center and I guess that it detects problems for most people.  Based on what I know now, the considerably less expensive (to say the least) sleep-deprived eeg should have been recommended first.  This would be especially preferred when you don't have the funds or easy access to the sleep center.

Let us know how it is going.

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