in need of advice

[wants2know]

About three months ago I had my first seizure. It was in my sleep and thought to be related to low potassium. Had a normal eeg. Changed a blood pressure med. Became increasingly depressed and started lexapro a month ago. Last week I had another tonic clonic in my sleep. Neuro started me on keppra 500/500 and other than being tired and insomniac no other problems. I'm seeing the neuro on Friday. What should I be asking? No personal or family history of seizures. I'm afraid of meds and I'm afraid of seizures.

 

[wants2know]

I should add I had a small stroke five years ago I fully recovered from that was due to a steroid reaction. Do I ask for certain tests? I'm not sure what to do....

 

[Cint]

Since your neuro started you on Keppra, make sure you tell him/her about your depression and that you're taking Lexapro. A side effect of Keppra for a lot of is depression/anxiety/rage, thus the name Kepprage. And some of the SSRI's can lower the seizure threshold. You may want to ask to be put on a different AED. Some AED are also used for bipolar disorder, too: Trileptal, Topamax, Tegretol, Depakote, to name a few. But there are side effects to all.

 

[wants2know]

Thank you Cint. I did not realize that about the seizure threshold. I was told to never take wellbutrin for that reason however. I am trying to make sure I make the most out of this neuro visit since my copay is 140 dollars!! I don't care if I keep her for two hours with my questions and I want a plan! I'm terrified of having more seizures....

 

[Belinda5000]

you can have a normal eeg.depresion meds can cause seizures.You don't have to have family history of seizure to have seizures if they don't know what causes your seizures it's called idiopathic.Anyone can have a seizure.Ask what the side eeffect of medication is and what type of epilepsy you have?

 

[Nakamova]

As Belinda says, you might never find out the exact primary cause of your seizures -- the majority of seizure disorders are of unknown origin -- but it sounds like some of your other health issues (stroke, potassium imbalance, blood pressure), might be playing a secondary role. Did they do an MRI after the initial seizure? If not, you could ask your neuro whether it would be worth having one to look for structural/vascular issues.

I hope the Keppra does the trick. As with all the seizure meds, it can have side effects. Everyone reacts differently, but if you find your side effects to be problematic or intolerable, let your neuro know, as there are other meds to try. Per Cint's advice, pay close attention to how you are feeling emotionally, since Keppra can cause serious mood swings. A B6 supplement can help with Keppra's mood-related side effects, so you should ask the neuro or your regular doc about that option.

One more thing: Ask your neuro how to get in touch between appointments if you have problems with the medication or questions. It's definitely a plus if your neuro responds to email.

 

[wants2know]

I had an mri after the stroke. A different neurologist in The same practice told me at the time there were vascular abnormalities that were congenital but innocuous. I am going to ask about it again. I have to say that I have not felt right all week. Today I took a tumble in my driveway for no reason. I felt very confused after. I don't know what is happening to me but it's getting to the point I'm terrified to go to sleep, fearing I won't wake up. My anxiety is through the roof. I'm not sleeping well and I know that can trigger seizures. I will inquire about the email. That's a great idea. Thanks for the responses. I'm at a loss with all this.

 

[Nakamova]

It can be helpful to keep a seizure/symptom/side effect journal -- that way you can track any new or unusual sensations or symptoms (like losing your balance or sudden weakness), and see if they are changing or progressing. It can be useful for you and your doctor in sorting out what's causing what. The tumble sounds pretty scary. Since you've only just started the Keppra it might be connected.

Below are some of the common Keppra side effects to keep an eye out for:

Very common (affect more than 1 in 10 people)
Sleepiness.
Feeling weak or fatigued.

Common (affect between 1 in 10 and 1 in 100 people)
Dizziness or loss of balance.
Shaky movements and unsteady walk (ataxia).
Headache.
Problems with attention or memory.
Hyperactivity.
Shaking, usually of the hands (tremor).
Depression.
Unstable moods (emotional lability).
Difficulty sleeping (insomnia).
Nervousness, agitation.
Hostility, irritability, aggression.
Personality disorders.
Gut disturbances such as abdominal pain, diarrhoea, nausea, vomiting, indigestion.
Loss of appetite.
Double or blurred vision.
Rash or itching.

 

[wants2know]

Diagnosed with generalized convulsive epilepsy without intractable epilepsy. Seems to feel an Mri and new eeg may help be more specific, though the last eeg showed nothing abnormal. I really like this neurologist. She is very responsive and seems thorough. Hopefully these tests show something that helps. In any case, she is likely to increase my keppra and change it to the xr.

 

[SlimBlue]

XR variant (extended release) is definitely better for reducing side effects slightly, and also usually better for people with epilepsy as it helps maintain a consistent chemical balance over a long time period.

Your neurologist sounds like one of the good ones. EEGs are very often 'normal', mine only shows slight epileptic possibility although I've been having full tonic clonics for 20 odd years. It's also sods law that you wont have a seizure during the test but maybe after lol.

There is some excellent information in the above posts, the side effects listed by Cint and Nak may be a cause of your tumble- just being newly introduced to a med can definitely increase the chance of it's side effects until you get used to it.

I realise it's very scary and only natural to worry about it, but you need to eventually come to terms with it, as the worry will only increase your side effects and seizure frequency

There are many other meds, and a lot of us take a combination. Lamotrigine- which is also used as a mood stabilizer- can be a good partner to Keppra for some people. The big problem with epilepsy is that a lot of us have vary different types and triggers, and we react differently to various meds as well.

Unfortunately it can be a long game of wack-a-mole to find the correct combination/balance for us, but during that journey it's essential we stay strong and focused on reducing it's effects on us as much as possible.

 

[wants2know]

I'm going to have another sleep deprived eeg. I'm told to stay on the Keppra for the test, but should I question that? I thought the point was to see seizure activity?

 

[SlimBlue]

It does seem like no meds would help increase the potential of them, but there are 2 problems with that:

1) We have to wean off the meds very slowly over a long period as stopping them instantly usually causes a massive increase in violent seizure activity and can cause major problems they wouldn't want to be medically liable for (and those wouldn't be your usual seizures in any case, but caused by going cold turkey and may not provide the information they're looking for about your usual ones) this also leads on to the next one-

2) Part of the Hippocratic oath is to do no harm, so for just an EEG test they wouldn't want to put you through that to cause you to have seizures (and don't forget the liability lol)- they can only measure ones that occur by themselves (hence having an extended test to increase the possibility of 'catching you' during a test). Flashing lights and sleep deprivation is about as far as they will go to help induce the seizures for these tests..

 

[Nakamova]

An EEG can potentially show abnormal brainwaves even when you're NOT having a seizure. In some cases, there are "interictal" (i.e. between seizure) patterns that are considered characteristic of epilepsy.

I had a sleep-deprived EEG a year ago, and even though I was on meds and had been fully-controlled for more than 5 years, the EEG still showed abnormal brainwaves. It was helpful in deciding whether or not reduce my medication a bit. (I opted not to).

 

[wants2know]

Very helpful information about the eegs. Thank you.

 

[SlimBlue]

Listen to Nak- that's real been there done that advice, mine was just logic working out.

 

[wants2know]

So here's a question, although I've had two tonic colonic seizures and a questionable atonic, what else might I be aware of and is it usual to have various types of seizures?

 

[Nakamova]

although I've had two tonic colonic seizures and a questionable atonic, what else might I be aware of?

There many seizure types, and they are classified in inconsistent ways (just to make it confusing.) You can get a pretty good rundown from wikipedia: http://en.wikipedia.org/wiki/Seizure_types

The ones that are often hardest to notice and/or diagnose are the ones that don't tend to produce dramatic or highly-visible symptoms. These are called Absences, and Partial Seizures.

Absences are a kind of generalized seizure (meaning that the whole brain is involved), but they are so brief (a few seconds) that the person doesn't realize that a seizure has occurred. To the observer it may seem that the person is daydreaming or inattentive. It's as if the on/off switch in the brain is flipped very quickly.

Partial seizures involve only "part" of the brain. They are also called "focal" seizures since they start in a specific "focused" area. With "simple partials" the person remains fully conscious and aware and has a memory of the event. Simple partials can take a wide variety of forms, mostly involving some kind of sensory disturbance -- things like perceptual distortions, sensations of fear/nausea, phantom smells/sounds, etc. If a simple partial progresses into a seizure involving full loss of consciousness, then it is called an "aura".

"Complex Partials" are partial seizures that have spread to include wider area of the brain. The person is still conscious, but their awareness is impaired. The person may show "automatic' behaviors -- things like smacking the lips, or picking with their hands. They may have trouble speaking. They may say or do strange things. Think of it as a bit like sleepwalking.

is it usual to have various types of seizures?

I'm not sure if there's a "usual" in epilepsy. In my case, I've never had absences or partial seizures -- I just launch right into a tonic-clonic. Other people might have only myoclonic seizures (which consist of jerks and twitches). Others might start out with one kind of seizure (partials) and over time have them progress into a different kind (tonic-clonics). I think that different prognoses have to do with a variety of factors including the primary cause of the seizures (e.g. genetic/brain trauma/lesions/vascular problems/unknown), the area of the brain involved, the age of the person, how quickly the seizures are diagnosed and treated and how well they respond to treatment. There can be secondary triggers and lifestyle factors that can play a role as well.

 

[Belinda5000]

it's not unusual to have a lot of different types of seizures.I have absence,tonic-clonics,complexpartial,simple partial and generalized sz's.
my seizures can last from a few seconds to 5 minutes.