Newly diagnosed and a little confused.

[Bindi]

Hi. :hello: Before I post this, let me first apologize because this is very long. I am soooo sorry but I do need help.

So I'm 38 years old and just diagnosed with epilepsy. Though I am a little confused about this whole thing.

I had two tonic clonic type seizures within a 4 week span. These are my first two ever. My neuro had me do a brain MRI, it was fine. She said I have epilepsy and put me on 500mgs of Keppra twice a day. After the initial week of side effects wore off (jeeze, that was fun) I'm doing pretty good on it. I will say though....I came here because my neuro is not very good at discussing this...she's pretty cut and dry, not a good bedside manner. I don't need my hand held but I also don't like to feel rushed as if she's in a hurry to get to the next patient. She pretty much talks very rushed and then says, 'Do you have any questions?' But looks as if she's about to dart out the door so she gets me all anxious, like I'm keeping her from something and I forget my questions. Oh, she also reported me to the DMV and now I can't drive for six months. Yay. Anyhoo I digress...

So here's what I'm confused about. How can I all of a sudden have epilepsy if I have A-only had two, and B-lived 38 years without ever having a seizure? I mean...why out of nowhere? And is it permanent??

Also, I think, I may be having simple partials. In between the first and second grand mals, I was not medicated. Over and over, this happened - I would be reading and all of a sudden everything went Greek on me, nothing made sense. It was like all of a sudden, I had no clue how to read. It would last a couple of minutes. I thought I was overtired. (I do have insomnia so this is why I thought this) So this happened 2 or 3 nights per week within the 4 week span of not being medicated. Once on Keppra, (and I've been on it now almost 4 weeks) it has only happened twice. Once while reading, the ole 'can't read or comprehend' thing...and then last week I believe it happened when I was talking to my teenage son. I think it was the same thing only I happen to not be in front of a book or the computer. I was talking to him, I knew exactly what I was meaning to say but I couldn't get it out. He said I was saying broken type words that didn't go together or make a lot of sense. It was very frustrating to me, as also the reading thing is as well because I am totally conscience that it's happening but I can't control it. Then poof....it's all over.

I started researching this because like I said, my neuro speaks two words and then rushes me out the door so I have to figure this out myself. The 'simple-partial psychic' seems to be maybe what it is, but I tell ya, before I researched this, I really and truly thought I was growing stupid! I literally feel dumber than a doornail when this happens. Now it's only happend twice since being on Keppra, before Keppra, like I said, it happend 2 or 3 times per week.

Does this sound at all like I may be right?
And then going back to my first question...Could I really have epilepsy after all of these years of...well not having it? Or could insomnia have caused this?

 

[Bindi]

Oh and a third question..sorry again..my memory has completely gone down the drain over the last couple of years but since the seizures...it has gotten absolutely horrible. Is this normal? Can seizures permanently cause memory loss??

 

[Meetz1064]

Hello and

how do you do?

First, sad to say, 2 seizures is what it takes to give you the diagnosis of E. And, so you have it. :S Especially when they're as blatantly obvious as the t/c's. (Tonic clonics aka as grand mals.)

OK, you spoke of words suddenly "Going Greek" on you. That's another type of seizure, unfortunately. And since that occurred while you in between the 2 t/c's, your brain was actually 'kindling' or seizing some more, and working its way up to another t/c. Yup, weird, but true.

The meds are designed to dampen the overexcitability of the neurons in our brains so that they don't kindle, and go into a seizure of any type--or if the med doesn't stop the seizure, limit the seizure to something much smaller. Which it is evidently doing for you.

Depending on what state you are in, it is perfectly within the doctor's rights to report you to the state DMV...and you'll face a license suspension of up to a year, depending on what state you're in. Some states are only 3 months. others 6 months, others 1 year. It just depends.

Some docs literally have the social skills of a sidewalk. If it really bothers you that much, consider doctor shopping. There are other doctors out there, really. And you're the one paying for their salary, remember. They're NOT paying you.

It's great that the side effects of Keppra didn't bother that long. Do keep in mind that sometimes there is one effect that some people can't get around--Keppra can affect personalities...so you may want to consider some B vitamins whilst you're on it, especially a bit of B6.

As for WHY E strikes when it does? Who knows. For some reason your seizure threshold has been lowered. We all have one, trust me. So start keeping a journal. Document EVERYTHING. Sleep, TV, food, etc. There's a great thread in the forum about journals. Use it to find one that might be useful to use, or create your own if you want. Heck, you can be in your 80's and E can show up.

Look at this link:

Seizure Journals

As for memory loss....LOLOL. What's memory? j/k. Yes, seizures can cause memory loss, but.......you can work at getting it back to a certain extent.

I went through a bout of t/c's in (for me) what was a short period of time. My t/c's are particularly violent, and fairly long. I do a lot of damage--physically, and cognitively. I have found over the years that doing things like crosswords, word searches, sudokus, and the like--anything that will challenge my brain, and make me SERIOUSLY THINK--has helped. I am still missing chunks of memory, including large parts of my children's childhoods. But, other parts of my memory have returned that I never though I would get back.

Finally, welcome to CWE. I'm sure you're going to like it here. There's plenty of information to be had, and friends to make. Lots of nooks and crannies to check out, and fun to be had. So take the time to kick up your feet and relax. The dinner party is grand.

Mr B has built us an AWESOME home here......and hopefully someone else has made decent coffee--I made burnt sludge this time. I think I'd better stay away from the coffee maker. I wondered what that awful smell was!

Gotta go!

Meetz
:rock:

 

[Bindi]

Thanks so much for your response. I really appreciate it.
I haven't really had mood changes since being on Keppra, I am a perpetual optimist so that hasn't changed, thank God. The first week of taking it, I may as well have been a zombie. LOL I do get the extreme knee-dragging fatigues during the day but as I said, I have insomnia so I don't know if it's the medication or leftover tiredness. (Does feel more intense than it used to though)

So being that I'm having what appears to be the simple partials...does that mean I should get my dosage upped? Can you get acclimated to Keppra and it stop working?

That is it for now, I will try to keep my questions to a minimum so as to not take you away from others who need help.

Thank you so much. You've already helped a lot!

 

[Meetz1064]

Mmmm, don't

worry, there's plenty of me to go around, LOL.

And if you feel like there's a question you want to ask privately, just PM me. (Private message).

You CAN get acclimated to Keppra, and it not be quite effective. You may want to call your doctor's office, and mention what's going on to them. Then you'll be told whether or not to come in, the dosage will be upped--or whatever.

In the meantime, DO keep track of how often the simple partials are occurring so that you can tell the doctor--this is to validate what you're talking about.

As for the fatigue/insomnia issue.

Make sure that you have a regular sleep routine going--you don't drink caffeine 6 hours prior to bed (shouldn't drink it really at all with E, as it's a neurotoxin). Get a MINIMUM of 7 hours sleep. Relaxation CDs are great, and melatonin is quite useful as well.

You can do it. Oh, and keep in mind that sometimes our meds can do a bit in terms of keeping us awake.....Sweet, huh?

Take care.

 

[Nakamova]

Hi Bindi, welcome!

My seizures came out of nowhere when I was 35. It happens

I can think of some potential reason why I might have had a lower seizure threshold (concussion when I was 5) and why I might have gotten pushed over that threshold 30 years later (intense fatigue, lots of aspartame in my system and no food), but I won't ever know for sure.

I do wish my neurologist had mentioned potential nutritional triggers at the time, but she wasn't that interested in the "whys" and more interested in getting me on meds. I agree with Meetz above, tracking your seizures is a great idea that will benefit you and your neurologist. You might be able to identify at trigger for your simple partials,a nd you can track any side effects from your meds too. I'm glad the Keppra seems to be helping with the Simple Partials. If they increase in frequency then check in with your doc about possibly adjusting your dose slightly. Keep in mind that it takes a while for the brain to get used to meds, and every time there's a dosage change either up or down, the brain has to re-adapt.

Unfortunately, it is normal for memory to be affected by a seizure disorder. If your seizures originate near the hippocampus (where memories get processed and encoded) then memory can get disrupted. Meds can also affect cognitive ability. And being sleepy doesn't help either. Most of the AEDs have a sedating effect, and/or give you insomnia, so it can be tough to feel alert and focused, so as Meetz says aim on getting the best sleep you can.

Here's a great CWE thread to check out:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[Bindi]

Thanks to both of you. I will check out both threads. Already started keeping a journal. Thanks so much!!

 

[Endless]

Hi, Bindi,

Welcome! Ask all the questions you need to. This is such a great place for information and support. We are all here to help each other.

Your doctor sounds like a real peach. If you need one that has better people skills you may want to look for a new one. There are a few regional epilepsy centers near you, and that's a good place to find a doctor. Go here to see a list of centers in your area: National Association of Epilepy Centers

You can also look here for a new doc: Epilepsy.com - Find a Doctor

If you want to see other people's comments and ratings on your doctor (or another doctor) or post feedback for her online, go here: Healthgrades

Yes, seizures can make your memory really bad over time. It usually takes a lot of seizure activity over a prolonged period, or a few realliy BAD seizures, though.

Keppra can make your memory bad, too. It did me. Here are a couple of great resource to look up the side effects of medications:
Drugs.com
Ask A Patient
Epilepsy.com

Did your doctor say where your simple partial seizures are located in the brain? Once you learn about the symptoms of seizures that originate there, you may discover you've been having seizures for years and didn't know it. I was diagnosed late in life, but after learning about the types of temporal lobe seizures (where my seizure are) I think I've been having them since I was a kid. When you described your seizures they sound like Temporal Lobe seizures to me, but it will take a description of more of them to really have a good guess.

About your doctor reporting you to the DMV - it looks like doctors in Florida are not required to report you to the state licensing agency. She put you in a tougher position by doing that. It's hard to get the license back, and there's lots of reports and bureaucracy required. And if you cancel your insurance that may be hard to get back, too. Not being reported, just keeping the license in a drawer, and voluntarily not driving for the required amount of time is a lot easier.

Someone in here said when they changed their insurance they didn't cancel it, they just changed it to a status of a permanently parked and not used car - he told them he was taking public transit. Then when he can drive again he'll change the status back. He said that inactive status was realliy cheap. That would avoid the problem of getting the insurance company to take you again.

Anyway, your doc put you in a pickle. I'm sure she did it for reasons she thought were in your best interests or the interests of the public, but in my opinion it is another of her patient relations issues.

Go here to see the driving laws for each state: http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm

Hang in there. Coming to grips with a diagnosis of epilepsy is really hard at first. At least it was for me. But it gets better.

<<<hugs>>>

 

[Bindi]

SORRY FOR THE SPEAKING IN CAPS...I'M ONLY DOING IT TO DIFFERENTIATE BETWEEN MY RESPONSES AND YOUR'S. I'M HAVING A HECK OF A TIME QUOTING YOU. IT KEPT GIVING ME ERROR MESSAGES THAT I DON'T HAVE PERMISSION TO POST LINKS. MANY ATTEMPTS TO USE THE QUOTE FUNCTION BUT IT WAS NOT WORKING. I TOOK OUT YOUR LINKS, DIDN'T WORK....FINALLY, ONCE I REMOVED ALL BRACKETS, IT'S ALLOWING ME. *I DON'T KNOW IF IT'S A TEMPORARY FORUM GLITCH OR WHAT. ALSO...IT KEEPS POPPING IN ASTERISKS WHEN I'M NOT DOING IT. LOL **

Hi, Bindi,

Welcome! Ask all the questions you need to. This is such a great place for information and support. We are all here to help each other.

Your doctor sounds like a real peach. If you need one that has better people skills you may want to look for a new one. There are a few regional epilepsy centers near you, and that's a good place to find a doctor. Go here to see a list of centers in your area: (REMOVED LINK PER ERROR MESSAGE, IT TOLD ME I WAS TOO NEW TO POST LIKS)

THANK YOU! I MOST CERTAINLY WILL TRY TO FIND A NEW ONE. I'M SURE MY DOCTOR SEES SO MANY PEOPLE THAT I'M JUST A NUMBER TO HER BUT I THINK DOCTORS FORGET THAT WHEN THIS IS A NEW THING FOR THE PATIENT, IT IS SCARY AND CONFUSING. I GUESS THEY FORGET HOW TO PUT THEMSELVES IN THE PATIENT'S SHOES.

Yes, seizures can make your memory really bad over time. It usually takes a lot of seizure activity over a prolonged period, or a few realliy BAD seizures, though.

APPARENTLY THEY WERE PRETTY BAD, PRETTY VIOLENT. *THE FIRST ONE HAPPENED ON MY BACK PORCH AROUND MY ROCK BED WHICH CAUSED ME TO BE BLACK AND BLUE (MORE BLACK THAN BLUE) IN MANY PLACES THAT LASTED OVER A WEEK. *THE SECOND ONE HAPPENED WHILE ON MY COUCH, WATCHING A MOVIE SO THAT WAS SOFT. LOL BOTH TIMES, I CHOMPED MY TOUNGE PRETTY BADLY.*

Did your doctor say where your simple partial seizures are located in the brain? Once you learn about the symptoms of seizures that originate there, you may discover you've been having seizures for years and didn't know it. I was diagnosed late in life, but after learning about the types of temporal lobe seizures (where my seizure are) I think I've been having them since I was a kid. *When you described your seizures they sound like Temporal Lobe seizures to me, but it will take a description of more of them to really have a good guess.

WELL WHEN I TOLD HER WHAT WAS HAPPENING, SHE'D JUST LOOK AT ME AND NOD HER HEAD SO I'D SAY, 'DO YOU THINK IT'S SLEEP DEPRIVATION??' *THEN SHE'D SAY, 'IT COULD BE.' *AND THAT WAS THAT. *SHE NEVER ONCE BROUGHT UP THE POSSIBILITY THAT IT COULD BE ANYTHING MORE. *MY GUT FEELING TOLD ME TO START RESEARCHING ON MY OWN AFTER I STARTED PUTTING TWO AND TWO TOGETHER. *THE NUMBER OF TIMES IT WAS HAPPENING LESSONED ONCE BEING ON KEPPRA SO I FIGURED IT HAD TO BE MORE THAN SLEEP DEPRIVATION. *SO I HAVE NO IDEA ABOUT TEMPORAL LOBE SEIZURES....I DO KNOW THAT I HAD A CONCUSSION YEARS AGO FROM BREAKING THE WINDSHIELD WITH MY HEAD IN A CAR ACCIDENT. *BUT LIKE I SAID, THAT WAS YEARS AGO, MAYBE 7 OR 8. *I DID HIT MY HEAD MORE TOWARDS THE LEFT, IN FACT, I STILL HAVE THE BUMP UP THERE.

Hang in there. *Coming to grips with a diagnosis of epilepsy is really hard at first. *At least it was for me. *But it gets better.

WELL I'M GLAD I CAME HERE, I HAVEN'T WANTED TO MAKE IT A 'FOCUS' HERE AT HOME OR TO BECOME ONE OF THOSE 'COMPLAINERS' BUT REALLY, I HAVE BEEN HYPER-THINKING ABOUT IT, ONLY HIDING IT SO AS NOT TO MAKE MY HUSBAND FEEL LIKE IT'S THE CENTER OF THINGS. *IT REALLY IS WEIRD TO HAVE THIS POP UP OUT OF THE BLUE THOUGH. IT'S JUST STILL A FRESH SHOCK SORT OF. I'M SURE IT WILL LESSON WITH TIME.

 

[Endless]

Did they do an EEG? That might answer some of your questions.

Oh! Almost forgot. If you want to quote someone, cut and paste their post manually in the reply box. Remove the links in it. Then highlight it and click the "Quote" box in the editing tools at the top of the reply box (it is the little yellow box at the end)

 

[Bindi]

Is that when they hook up little things to your head? Yes she did that but too long after the first seizure, she said the time lapse had been too long. The second seizure, I wound up in the ER....they didn't do that but hooked things up to my chest. They also took lots of blood. I hardly remember this, I was still out of it, this is according to my husband. They said they were sending all results to the neuro but when I got to the neuro's office (four days later as she was out of town) she said she hadn't received it. Never heard anything since then...the neuro said to come back in three months.

 

[Endless]

Call and ask for your test results - specifically, the level of prolactin in the blood and whether that was elevated. The prolactin level is usually elevated after a TC seizure.

 

[Bindi]

I will absolutely do that tomorrow. Actually, I'll try it now since it was the ER, maybe I'll be able to get someone. Thanks again.