Hi, I'm new and it'd be great to speak to people who know what's going on

m1987

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Morning,

My name is Mark and I've joined this forum because it seems to be good at understanding and giving helpful answers.

My history is:

I'm on 6 seizures now. I had one at the back end of 09 and one in mid 2010 followed by a 2 year break and I've had 4 (plus some mornings of myoclonic jerks) in the last 3.5 months.

At first I thought it was alcohol related as the first 4 times were all after heavy drinking (you can see I learned from my mistakes), but the last 2 have been after no alcohol.

The common theme in these is having a bad night's sleep one night and then the next night waking up during the night (usually to go to the toilet). I start having jerks around the time I get back to bed and then it leads to a seizure. Even with sleep deprivation, it doesn't happen if I wake up more naturally. Perhaps something to do with which sleep cycle I have woken up in? I've been to music festivals for 6 days where it was about 4-5 hours sleep a night with heavy drinking and everything was fin


I know I need to give up alcohol, but it's not that easy. I haven't got the highest self esteem and to be honest, the way people treat you when they think you might have a seizure makes me not want to open up about it (continuing to drink makes things feel normal which is nice). Don't get me wrong, my friends are great. Lovely people and they'd never say a bad word about it, but (some of you have probably experienced this) they just don't understand so it's hard.

Anyway, once my work health insurance goes through (next week or two), I'm going to get myself to a neurologist and get this all sorted out. I've already had a CT scan, ECG, chest x ray, blood and urine tests, 2 MRIs and 3 EEGs (1 was a sleep deprived one). The only thing to show any abnormality was the sleep deprived EEG. To be honest, I can't see what any more of those tests could teach anyone, especially as there is a clear pattern developing. I really didn't want to go on medication, but it looks like I won't have much of a choice.

Also, another reason i can't open up too much about it is that I would be worried about losing my job. I'm a civil engineer and while I sit in an office most of the day (my days of being on site from 7-7 are behind me), construction firms are always going to worry about epileptics (I'm assuming I have epilepsy) so I'm going to wait until I can get a letter from a neurologist saying I'm safe to work before I come out with all the info. I have one from my previous neurologist (I've moved countries), but that was after 1 seizure when we though it was all because I drank too much.

Has anyone else got similar worries or a similar experience with epilepsy. If you had any advice, that would be great!
 

valeriedl

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Not getting enough sleep is a pretty good seizure trigger for me. If I go a few days in a row not on my usual sleep schedule isn't good for me. I take a nap in the afternoon too and if I miss that it's not good.

As far as not drinking it's just something that you just need to stop doing if you think it's setting off your seizures. Think about it - Would you rather get drunk and have a seizure or not get durnk and not have a seizure? When I go out I might have one drink, nothing that's strong enough to get me even close to drunk or giving me that drunk feeling. I was never a big drinker to begin with. I was the one that always drove so everyone else could drink their heads off.

I can't give you any job advice however. Other's on here should beable to help you out with this. I don't know how bad your seizures are but when I was first diagnosed with epilepsy I had to stop working, but at that time I was having around 5 bad seizures a week. I'm down to about 5 a month with a few auras here and there, but I still can't work.
 
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I do understand feeling alone as I now sit on a couch most days sleeping or in very bad head pain where I used to play with my two darling daughters along with taking them to play dates.. no more of any of that.. no one to talk to but all you wonderful folks. I'm sorry I can't 100% relate, but I understand to a degree. I also used to drink.. I'm allergic to most alcohol now :( probably a good thing.. (it was a bad bad thing for me.. I had to clean it up before we had kids). Wish I could hug you in person.
All my best,
Abi
 

SAF

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Sleep is very important to me too, and alcohol will affect your sleep. I know don't want anymore test, I would get a sleep study done. I had two and found that there is a good chance I could be having seizures at night and I have mild sleep apnea. I stopped breathing 9 times durning my first study. Both seizures and sleep apnea disrupt your sleep cycle, which can cause seizures the next day. Any I have a cpac and I think it has really helped.
 
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There's not always a "clear pattern" with epilepsy. There's not much rhyme or reason with mine. I've had them after being sleep deprived and I've NOT had them after staying up all night. I've had them after skipping my meds and not had them after doing that. It's a complex thing the brain :) The best you can do is go see a neuro like you said and get some meds to help you control it. And if it's any consolation, I drink way too much too and my neuro advises against it but agrees it doesn't always cause a problem too.
Good luck :)
 

qtowngirl

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(continuing to drink makes things feel normal which is nice)
:agree:


Well maybe not 'normal,' but a lot easier to cope with. Epilepsy has 180'd my life enough, if I was to become a non-drinker it would again make me feel so un-like myself that with everything else it would be too overwhelming. That would stress me out and stress is one of my main triggers. Alcohol has been too, but they're so interconnected that it's easier just to leave be rather than try to separate. I can't see anyone in my life (no one with E and no one that would even try to say they understand) bringing down the hammer on me b/c I enjoy some wine at the end of the week. And if they did my answer would simply be 'You sit and consider having to have brain surgery and then we'll talk about it.'
 
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Well I know I can't drink without waking up the next in all sorts of trouble. But I've seen people close to me try to get of addictive substances, myself included. It is no easy path. I know you will get some solace and comfort from the people on this forum. Healthy people may never understand, but people on here do. I wish you the best and hope that this all gets on the right track so you don't have to worry about any job issues.
 
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I know you will get some solace and comfort from the people on this forum. Healthy people may never understand, but people on here do.
I used to think I was healthy.. then I remind myself I'm still fighting anorexia.. for the last 20 years... just because I "look" healthy doesn't mean I am!! So glad to be in this basket with all the mixed nuts! :D I love it here!!
All my best,
Abi
 

Eve

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I have simple partial nocturnal seizures. It was years before I got diagnosed and by then I was 36 yrs old. I had many tests for years and the only test that diagnosed me was the sleep deprived EEG. They started me off with Tegretol then Carbatrol then Topomax and no0w I am on Keppra. The sleep seizures were weird I would get jerk like electrocuted feeling and always have to go to the bathroom and than I'd be wide awake and could not get back to sleep.

Be careful on over drinking. I myself enjoy a glass of red wine everyday for health benefits. LOL. But still if you're waking up with a headache and hungover you are over-drinking.

As for the job I wouldn't even tell them. You have them at night right? I only have mine at night . The seizure med have been good at keeping them away....Tegretol worked and Keppra worked I think Carbatrol was the best though.:e:
 

m1987

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Cheers guys, that's brightened up my day a bit anyway.

All of you have made some quite interesting points, especially with regards to drinking. I tend to agree with the "easier to cope with" line

I'd also agree on the not telling work thing. I'm not putting anyone (including myself) in danger so I'm not overly concerned in that regard. The worst that could happen really is that I'd have a seizure in the morning and be late for work. Hardly the end of the world. Although of course the seizure is quite annoying. I'm pretty sure my tongue hates me now.

Actually, on that note, how do you guys deal with the tongue biting? I can put up with it now and again but some of them have done some serious (short term) damage to my tongue. If this starts to become more regular then I'd be a bit worried about that.

But yeah, if I can get an all clear letter from a neurologist and if I'm put on medication, I think I'd start telling people a little more.

Again, thanks guys, I think I might just stay around here a while longer with this kind of support! :tup:
 

Eve

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Fortunately I don't have tongue biting. Most people by looking at me think I look healthy and they would never guess I have a seizure disorder. I don't usually tell people because they give me a weird look and they take a couple steps back from me. But if you tell your friends they should be your friend and be nice about it.

Good luck I hope you get the answers . I know its tough.
 

qtowngirl

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Fortunately I don't have tongue biting. Most people by looking at me think I look healthy and they would never guess I have a seizure disorder.
I'm sure most of us look healthy, that's one of, if not the, main reason why epilepsy is so misunderstood. It's one of the rare diseases where on a daily basis one doesn't act sick, look sick, or a lot of the time even feel sick.
And then BAM!
But unless those around you have seen that moment in time then to them you're just like everyone else - fine. Almost impossible to 'guess' that someone has a seizure disorder. It's such a catch 22, I prefer to walk around in society like a normal-looking girl in her 30's, but at the same time I feel foreign when I need help and few people can because nobody understands what I'm going through, not even most doctors.
If people with E walked around looking sick there's no doubt more effort would be put into scientific research as well as educating society. Yay for us!
 

m1987

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So my last TC was nearly a week ago and it came about from waking up in the middle of the night to go to the toilet. I train late on a Thursday so end up replenishing all my fluids close to midnight. This means I needed to go to the toilet around 2am and when I got back to bed I had (or assume I had based on the preceding jerks and the state of my tongue the next morning) the seizure then.

Last night I had to get up again around 4am and I felt fine once I got back to bed, but I knew from experience that it would be at least 10 minutes until I had the "all clear". During that time I was pretty worried. I know that it doesn't help to get stressed out and it only succeeded in delaying when I could go back to sleep, but I couldn't stop being worried about it.

Does anyone else get this when they think they might have a TC? No aura or anything, just worried that all the conditions that normally set me off were perfectly in place...

And if anyone else gets this, have you got any effective ways of de-stressing?
 

Nakamova

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One of the best ways to de-stress is to do progressive relaxation: Lie down, and slowly tense and release your muscles, starting at your toes and working your way up to your head. The key is go slowly, and try to match your breathing to the tensing and relaxing.

If you're somewhere where you can't lie down, just try focusing on your breathing: Breathe from the diaphragm, with long slow exhales.
 

Eve

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It seems almost every night I wake up between 2 and 4 am feeling off and tensed and always have to go to the bathroom and then I feel wounded up and cant get back to sleep. Sometimes Ill even get a migraine too. I take a cloenzapem about once or twice a week and I don't want to take more than that cause its addictive.

Sometimes I just go to the living room and lie on the couch with a neck pillow under my neck and a big pillow under my knees and put some yoga type meditative music on an that helps and then Ill use body lotion with lavender and chamomile and the smells will tend to unstressed me a little.
 

stacey

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hi,

from what I've heard stress, sleep and temperature changes can be triggers which to watch out for and I dont think alcohol is a trigger based on what you have mentioned. one thing to keep in mind when you go to a neuologist is a few things:

>do you drive- you may be able to keep your license with monitoring and doctors reviews
>some meds can cause drowsiness(tegretol CR- MY PERSONAL EXPERIENCE :))
if there is any depression in your life as some have a higher risk of suicidal thoughts then others.

i hope that helps :)

STACEY
 

m1987

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hi,

from what I've heard stress, sleep and temperature changes can be triggers which to watch out for and I dont think alcohol is a trigger based on what you have mentioned. one thing to keep in mind when you go to a neuologist is a few things:

>do you drive- you may be able to keep your license with monitoring and doctors reviews
>some meds can cause drowsiness(tegretol CR- MY PERSONAL EXPERIENCE :))
if there is any depression in your life as some have a higher risk of suicidal thoughts then others.

i hope that helps :)

STACEY
You raise some interesting points alright.

June (when it all started up again) was about a month before I was due to quit my job. I've just moved to Asia from the UK. So I suppose there was a decent amount of not stress, but trepidation and anxiety going around in the last couple of months.

In terms of temperature changes, do you mean climate or just going from a hot room to a cold or something like that? Because the climate here is much hotter than anything I've lived in before. Like the average daily temperature is hotter than the max one off temperature ever back home.

Sleep - I know it's up to me, but sometimes you just don't get enough sleep.

Driving - I don't need to drive here, public transport is pretty good, but I have had my licence revoked in the past. In my experience, they never let you drive unless you are 12 months seizure free (6 months if it's your first and and epilepsy is 100% ruled out)

Depression - That's in the past, thankfully
 

Janus

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Good points, all; I found that alcohol is a trigger to me and I had to give it up entirely, with other help :). I found kind, understanding people with seizures in AA and its been a great community to hang with. Outside of that, it can a lonesome world of people who can not comprehend what its like for you (me) living with this condition. I know for me, its compounded by being eccentric also. Even in the best situation I am an artist before I am a socialite. It has taken a while to find my niche. Best of luck.
 

Cint

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I'm sure most of us look healthy, that's one of, if not the, main reason why epilepsy is so misunderstood. It's one of the rare diseases where on a daily basis one doesn't act sick, look sick, or a lot of the time even feel sick.
:agree: Once when I was in getting geared up for an EEG, the tech said to me, "You don't look like you have epilepsy." My 1st thought was, you don't look stupid, either, although I didn't say anything. And I've had E for over 30 years, had the T/C seizures in my sleep, and some 1st thing in the morning, afternoon, evening, whenever. But now I only have CP's (knock on wood). I've had them at the gym several times, and when out walking.

from what I've heard stress, sleep and temperature changes can be triggers which to watch out for and I dont think alcohol is a trigger based on what you have mentioned. one thing to keep in mind when you go to a neuologist is a few things:

>do you drive- you may be able to keep your license with monitoring and doctors reviews
>some meds can cause drowsiness(tegretol CR- MY PERSONAL EXPERIENCE )
if there is any depression in your life as some have a higher risk of suicidal thoughts then others.
I used to live in a humid part of the U.S. and moved out west to the mile high city were it is much drier, but that really didn't make a difference in my seizures.

Alcohol could be a trigger for some, depending on the type of seizure(s) and med(s) one is taking. I occasionally drink a glass of wine on holidays.

And with TLE, depression does go hand in hand with it. Some of the medications used for E are also used for mood disorders. Many of the medications have a risk of suicide if already depressed.
 

stacey

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hi

to reply to your earlier post, i have found that when my kids start to get sick and they get a fever that can be when to watch out because that can be when a seizure can be more likely to happen.

If you have recently moved to a hotter area then maybe all that means is you just be aware that your body has to learn to adapt to the new situation and that you keep a water bottle nearby that might be all you need to do.

I hope that helps :)

Stacey
 
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