Hi Everyone

[crazybarbie]

I have been noticing a trend throughout everyones posts and that is fatigue.

I'm on Trileptal twice a day and am tired all the time, everyday. I had mentioned it to my Family Doctor and it was then i learned that Trileptal is also a sedative. He suggested for me to drink coffee. First time doc has suggested upping caffine.lol I'm not a coffee drinker so I've been trying to drink at least one coffee a day. Flavoured is easier to choke down.

But I am also wondering if sometimes I could actually be having seizures through out the night. Because sometimes I am tired and SOMETIMES like this past weekend I am totally trashed. Shaky, exhausted, black rings under the eyes and wiped. That's how I usually how I feel after having a seizure so I'm thinking that perhaps that is what's going on.

 

[valeriedl]

I take Depakote, Tegretol, Keppra and Lamictal -all the generic versions.

I have to take a nap every afternoon. I basically pass out because I'm so tired. My neuro told me to stay away from cafine because it could trigger a seizure, I would ask your dr about that. Do you see a neurologist too?

I notice also that if I don't get my nap in, the next day I am gone and no good for anything because I'm so tired.

 

[crazybarbie]

Oh my gosh. That's all I would need. I definitely ask the Neurologist about the caffine then.

I definitely could take a nap every day if I had the time. It really is frustrating being so tired.

Thanks valeriedl.

 

[Endless]

Hi, Barbie,

Welcome to CWE!

You may be having seizures at night. Some people's seizures wake them up, some don't. What kind of seizures do you usually have? TC, SP, CP???

Valerie is right - caffeine can be a seizure trigger for some people, but not for all. Do you notice more seizures when you drink coffee?

Do you keep a seizure journal to help identify triggers, or other patterns around your seizures?

 

[Paul66]

sounds similar to my type of seizure episodes. you must sleep alone. I'm going to try and explain this using numbers. Its easier to use a graph, N/A here though. <p>
ok, imagine awake being (1) and (10) being deep sleep. That would mean that (5) would be the threshold point from laying down with your eyes closed to actual sleep itself. With my epilepsy, when I get to (5) and am crossing into (6) I have a seizure. Having that seizure wakes me back up to where I'm back fully awake(1) or somewhere in between(2-5). the thing is every time I get to(6) the whole episode repeats itself and falling into deep sleep is virtually impossible. This is why I take all my meds 45 minutes before I go to bed. I found that adding 1mg of Lorazepam takes me quickly across that threshold to where I'm at (7) and onto (10)
sleep threshold seizures are rare, but if you feel you are sleepy when you are getting up in the morning, its a good possibility. Keep in mind that your threshold could be at a (6-7-8) and the seizures aren't strong enough to wake you up to consciousness just to a low number like (2-3-4). If you never reach (10) you're body isnt really getting rested like it should and only leads to more problems later.
also keep in mind that there are a lot of neurologist that have never heard the term sleep threshold seizures. You may have to explain it to yours. I laugh even though it isnt funny. It just proves the point that epilepsy can be difficult to diagnose because there are so many variables.
Oh, I love coffee, but caffeine can be a trigger especially if your running a fever or suffering from a sunburn. good luck and I love the name. are you hot like Barbie..(-:?

 

[droolmonster]

Yeah, fatigue is a problem. All of the drugs make you tired. When I first got it, I would just go to sleep in school, and there was nothing I could do about it. Eventually I started drinking coffee in school, and that stopped the sleeping. I was also in high school, and they never ever teach you anything interesting in high school.

I don't think caffeine is a trigger...

Listen to me Barbie, all this stuff about triggers is purely hypothetical. If you want to stay awake, drink coffee. I love coffee. Espresso, Americanos, Turkish coffee, Greek coffee, Thai iced coffee, I love every kind of coffee in the world. I drink my coffee black. I like coffee I can chew.

I hate the tiredness. Sometimes though, I take advantage, and just sleep rather than think about problems. But don't do that. Drink buckets and buckets of coffee. It's a necessary part of life. As necessary as food.

I love coffee! I'm like too much coffee man. He's a comic book character.

 

[crazybarbie]

I wish I found this site years ago. It is so great to see/hear so many people coping with what I've been suffering through for years.

The whole threshold concept is very interesting. I know that many times I am awoken with seizures that ocurr just as I'm almost asleep. But perhaps I am having some that aren't quite enough to bring me fully awaken but enough to interrupt my sleep pattern.

I do have a couple more questions though. The first EEG I had immeditately showed seizure activity and every one since in fact. But my past MRI's were clear except for my most recent. It showed scarring on the brain as well as an "aritifact" on the spine. My neurologist didn't seemed overly concerned with this but just recommended I had a repeat scan to see if there are any further changes. Is scarring a common thing for epilepsy? Is it from the many seizures over the years? What happens after another five years from now, or ten? Will the scarring eventually damage the brain?

Another symptom I had and spoke to my family doc about because I don't have a Neurologist appointment for quite a while is sometimes while speaking, my mouth feels thick. Almost like my tongue is very thick and it takes more effort to speak around it. To my own ears my words sound fine but it just takes more effort. My fam doc thinks that it's just a side effect from the Trileptal.

I am going to take everyone's advice and write down every weird and wonderful (and not so wonderful) thing that happens and share it with my Neurologist in our next appointment.

To be honest, I think a lot of the weird stuff I have kept to myself because I have been burying my head in the sand. I don't want this condition and I guess I hoped I could will it away. But it's not getting any better, and really it only seems to be getting worse the older I get.

And Paul, no I don't sleep alone, but hubby would sleep through an earthquake. LOL

 

[crazybarbie]

I drink my coffee black. I like coffee I can chew.

That cracked me up. :woot: Thanks Droolmonster.

 

[Paul66]

what state do you live in? If I were in your shoes, I'd get my neurologist to sign off on temporary disability/medicare. Then I'd be paying a visit to my local university medical center.
I did this in 03' and went through a series of tests at Wake Forest. They did every test in the book including to see if the epilepsy was OPERABLE. With the scaring they can pin point where the activity is coming from and possibly remove it. If you get the Temp disability this will all be paid for by the state. At least that's how it works in NC.
I wouldn't have to think twice about it. Like you said the older you've gotten the worse it has gotten. What does the future hold for you?

 

[crazybarbie]

Well actually I live in Canada so I'm not sure how it works here. The idea of surgury terrify's me.

 

[Nakamova]

Hi crazybarbie, welcome!

Regarding the scarring that showed up on a recent MRI test -- It's possible that the scarring was there all along, but that the MRI machine used for your newest scan is more sensitive than machines that were used in the past. They keep coming out with better and better machines.

It is also possible that repeated seizures could cause scarring, so check in with your neurologist for his take on the MRI results. The "artifact" that showed up your spine may just be an error on the MRI (like EEGs, MRIs scans can pick up random "noise"). My first MRI showed I had "chronic dissection of the jugular vein" -- meaning that blood was leaking out of my neck vein. But a subsequent MRI showed that the first one was incorrect.

 

[crazybarbie]

Okay, Thanks so much Nakamova.

There is going to be a lot I'll be going over with my Neurologist. Perhaps all it was is a better scan, as I said Dr. Lee didn't seem overly concerned what so ever.

Everyone has been so welcoming here and so full of info. Thank you everyone.

 

[skillefer]

hello!

I have been noticing a trend throughout everyones posts and that is fatigue.

I'm on Trileptal twice a day and am tired all the time, everyday. I had mentioned it to my Family Doctor and it was then i learned that Trileptal is also a sedative. He suggested for me to drink coffee. First time doc has suggested upping caffine.lol I'm not a coffee drinker so I've been trying to drink at least one coffee a day. Flavoured is easier to choke down.

But I am also wondering if sometimes I could actually be having seizures through out the night. Because sometimes I am tired and SOMETIMES like this past weekend I am totally trashed. Shaky, exhausted, black rings under the eyes and wiped. That's how I usually how I feel after having a seizure so I'm thinking that perhaps that is what's going on.

Hi! Welcome to cwe. my suggestion would be to get your blood sugar and thyroid levels checked. Also, take your temp @ your underarm first thing...before even getting out of bed

 

[Endless]

Skillifer,

Interesting... Why take the temp? What would it indicate?

I'm on triletpal, too, and I'm just beat. I sleep 10 hours every night, and take two 2-3 hour naps per day. That leaves about 8 hours of awake time. And that time is spent feeling absolutely exhausted. Not enough to live life.

P.S. My blood sugar is fine, and so is my thyroid. both have been checked multiple times.

 

[crazybarbie]

Well, I haven't taken my temp yet but I have just recently had my thyroid and blood sugar levels tested and both were fine.

I know exactly what you mean Endless. I feel like I'm draggin myself through life. For example yesterday it was all I could do to get through my workday and my home stuff I had to do and finally I gave in by 8:30 at night. Pretty sad that I have to go to bed so early. Slept right through until the morning too.

 

[Endless]

Phoebe,

I'm the same... I go to bed at 8pm, my dog wakes me up briefly at 10pm to take my meds then back to sleep. My dog wakes me up at 6am to take my morning meds. Then I'm up for a few hours, then back to sleep for a nap. The up for a few hours, then back down for another nap.

It stinks. We need something else!

 

[valeriedl]

Another symptom I had and spoke to my family doc about because I don't have a Neurologist appointment for quite a while is sometimes while speaking, my mouth feels thick. Almost like my tongue is very thick and it takes more effort to speak around it. To my own ears my words sound fine but it just takes more effort. My fam doc thinks that it's just a side effect from the Trileptal.

I don't know if this is quite like what you are talking about, but sometimes when I will have a seizure I'll be talking during it. I'm thinking that I know what is coming out of my mouth but what I'm actually saying are slur words and the words that I think I'm saying aren't those words. For example I may think I'm saying that I'm laying in bed but what will come out might be something like "back yard, going to store", all slured and making no sense.

Defently keep a diary of what's going on. As someone said even if it's something wierd that you know isn't right but not sure what it is. This will help your neuro out alot.

 

[Endless]

Thank you for that, Valerie. That explains one type I have, too, exactly. I think I remember exactly what I said, but it isn't what I said at all.

It works the other way for me, too. I think I remember exactly what someone else said, but it's not what they said at all.