One time seizure.. sleep and meds?

[kmilliken]

4 months ago while sleeping I had a seizure, the bed shook woke up my boyfriend, I was unconscious for at least 30 minutes. Saw the doctor they found a small 'calcium deposit' brain tumor. Not sure if this is the cause of the seizure or not, it's not large enough to need to remove I am just being medicated with dilantin for seizures.

I have not had any major side effects from dilatin BUT.. I started on 300mg before bed, got my blood tested and it was too low so they upped me to 400mg. Then it was slightly high.. now I am being told different things by the nuerologist, neurosurgeon and general doctor, its diving me nuts! Today the nuerologist recommended Keppra as an alternative med. Any thoughts on that?

Also.. I would like to just get off of the meds! I dislike being medicated and who knows, was it a one time thing? I want to know this... I understand the risks, trying to decide if (with 2 months left till I can drive.. is it worth it?) I am 25 years old and other than this very very healthy!!

If anyone can relate, or has any useful info it'd be appreciated! Thanks!

 

[qtowngirl]

Welcome!
First off, are they trying to tell you you have epilepsy, or just giving you seizure meds? If they're saying you have e I would highly question it as ONE seizure does not indicate epilepsy. It takes two seizures before that diagnosis, and even that is just a general rule, depends on if there is an exact cause such as a head injury, tumor, etc.
Second, when you say 'not sure if this is the cause' referring to the small tumor, do you mean you're not sure, or docs are unsure as in waiting for test results? I would sincerely hope they're doing a number of tests to see if the two are linked.
Third, Keppra?!?! I myself have never been on it, and wouldn't, but I would suggest the best way to get the answer you're looking for is start a post on here called something like, 'Who's taken Keppra? I need advice.' ... or something similar, and see how you feel about the responses. I have read many posts on here about it and majority of them give me the shivers. Six months ago my epileptologist was talking drugs and mentioned keppra and I gave her a flat out 'No.' She said 'Okay... moving on then...' It sounds like a lot of people like it at first and then after a while can't wait to get off it.

I really relate to you as well, my first happened exactly the same. In my sleep, the shaking woke up my boyfriend. I was out for a while and by the time I opened my eyes there was already cops in my room (it was middle of the night and they got there first).
Didn't get the e diagnosis until the second grand-mal three months later, which is when they did testing and found a cyst on my left temporal lobe.

Question: when you say it's not small enough to remove, I'm wondering what you mean exactly? Usually the smaller it is the less around it it's interfering with so I'm thinking you meant it's not big enough to remove?
But it's always good to learn other stories, pls, let me know. They've tried to avoid my cyst for years because it's small, but my new doc says it's time to investigate as we're on med three and still having them.

 

[kmilliken]

I have not been diagnosed with epilepsy. Thank you for the info about Keppra!

Have you had all of your seizures while on meds? How many have you had? Have you had them all in your sleep?

Mixed up my words, deposit is too small! whoops

Thank you!

 

[qtowngirl]

Wow, I just put two and two together... you've only had one and they took your license for six months? Very curious where you live (but not my business), however I haven't heard of that just with one. Usually an e diagnosis is the deal first, or at least an issue with seizures that's in the midst of being figured out. So sorry.

Nope, as for mine, didn't get a diagnosis until after the second grand-mal, and since:
third grand-mal on carbamazepine (tegretol), fourth and fifth on carb and topamax.
Have had simple partials on all of them, that's why they're looking at possibility of surgery. However, I do have a cyst and possibility of Mesial Temporal Sclerosis from the years and years (18) of SP's (the repetitiveness can cause buildup of scar tissue).
And the only grand-mal in my sleep was the first one; a lot of the partials are when I start falling asleep though, or they wake me up, these days about 90 per cent or better.

 

[kmilliken]

Yes, I live in Kansas. Where are you from that it is different? (if you dont mind..) Not driving is the worse! Thank you for sharing! Very helpful

 

[qtowngirl]

Canada. And yes, every time I lose my license I lose control over my life, esp. due to the fact that I need it for my job. I think if I were to be asked what I hate most about having e it would be not being able to live normally/fear of never knowing 'when's the next?'... and after that the driving. AWFUL. I'm grateful however that you don't lose it until diagnosed and even then you get it back after three months (sometimes six if things are really shaky but again, this is if you HAVE epilepsy).

 

[valeriedl]

I've had epilepsy for about 8 years now and I do take meds and I have seizures while I'm on them.

At first I was having around 3 a week. It took a few years to get the meds worked out (if you want to call it that) but now I'm having about 3 a month.

I live in PA and it's 6 months seizure free here before you can drive. I haven't gone that long since I've been diagnosed. I know it's hard. Good luck!

 

[Nakamova]

Hi kmilliken, welcome to CWE!

They usually don't make an epilepsy diagnosis after just one seizure, but it sounds like there were extenuating circumstances (i.e. the tumor) that pointed to a conservative treatment approach with anti-seizure meds. I'm puzzled as to why they upped your Dilantin dose -- clearly you weren't having seizures. If your docs "go by the book", your blood serum levels may have been too low, but plenty of folks (myself included) have seizure control with levels of meds that are considered "subtherapeutic.". When I was on Dilantin, I had a seizure control at 100mg/day. My blood serum levels were low, but it didn't matter because because in terms of seizure control, they were plenty high. It took awhile to get my neurologist to accept this, but after a few years, she saw the light.

I would ask about the possibility of backing off of your Dilantin dose slightly. If you weren't having any problems at 300mg, then that was probably fine. If you are going to be medicated for longer than a year or so, Dilantin can be problematic though. It can affect your gums and cause bone problems with long-term use. So at some point you may or may not need to look at other meds. Keppra is often recommended because you can ramp up on it relatively quickly, making for a fast transition from one med to another. For some folks it's a fine med, but as with all the AEDs it has the potential for a range of less-than-pleasant side effects. I'm on Lamictal, another AED popular with neurologists. The transition period is much slower than with Keppra, because Lamictal requires a "low and slow" ramp-up in order to minimize allergic reactions.

I hope this info helps. Feel free to check in here at CWE with any questions. And good luck, I hope you can drive soon.

Best,
Nakamova