Lots and lots of questions -newly diagnosed

[greylostoffice]

Hello all,

I was diagnosed with epilepsy about three weeks ago. I had about 4 different episodes of seizures within about two months time. I had an EEG and my doctor called me to give me my diagnosis, offering basically no explanation whatsoever and telling me that I will have to go on Keppra for the rest of my life. But I will rant about my doctor later.

My seizures are very hard to describe. Out of the blue, I get a really fuzzy feeling where I can't focus on anything and I feel really groggy. I can feel my heart pacing, my head hurts, and I feel really dizzy. Then, I get waves of episodes where I slump to one side and my head drops several times. It's kind of like when you are nodding off, like your head drops but you can't control it, and this happens several times where I start to lose consciousness as my head drops down or to one side, and then I snap back to attention, and then it happens again. This happens about every 5-10 seconds as I am having my seizure. The seizures themselves actually last probably 10 minutes. Afterwards, I usually completely crash and sleep for hours and hours.

I also get absence seizures. My parents had noticed them a little bit growing up (I am 21 now), but they never thought that they were actually seizures. They aren't too bad, usually they are just a few split seconds where I get kind of glazed over and stare off into space. Sometimes I raise my eyebrows up and down or blink really hard, other times I will be paying attention in class and all of a sudden I can't understand a word that the teacher is saying. I can keep my eyes focused on him, but all of the words just don't make sense to me. Again, these only last a few seconds.

My neurologist is frankly not very nice. He is not personable at all, and is horrible at explaining things. I can't really vouch for his knowledge of neurology, other than that I know he conferred with his colleagues about my EEG and they all are certain that I do have epilepsy. I asked him what type of seizures he thinks I have, and he said that it looks like they start on the left side as simple partial seizures, and then they generalize. (I guess that's where the atonic, head-dropping comes in?) Are simple partial seizures the "absence" seizures that I mentioned before? And what does it mean for a seizure to start out as one thing, but then "generalize"? He did not mention anything about atonic seizures, in fact, he seems to totally ignore the fact that I kept losing muscle tone in my head and neck, and whenever I mention it again, he just kind of brushes is off as if to say "yeah, that too, whatever". Obviously this is of the greatest concern to me, because if that happened to me while I was driving or something, it could be dangerous. I also asked some other questions about diet, etc, and he literally ran out of the door as he was answering my question. Anyways, the point is - I am trying to find a new neuro.

I also have some questions about the Keppra. I started off taking 500 mg. Now that my doc knows that I can tolerate it well, he wants to up it to 1000 mg. On the 500 mg, I began feeling really really good. Like I could focus on things a lot better, my almost daily headaches completely disappeared, and I had a lot more energy during the day. On the downside, I was quite jittery and had a couple minor mood swings. Now that I am doubling the dose, will these things get worse? Has anyone else had these types of side-effects of keppra? My doc said that he thinks everything I am feeling is unrelated. I am not convinced.

Also, based on my history, do you think it would be a good idea to get a medalert ID Bracelet? I am just worried that I will have a worse seizure in the future.

Ok, so mostly this was a rant, I realize that now. But thanks in advance for any advice or related experiences that you can share with me!

 

[MAB]

Hello all,







My neurologist is frankly not very nice. He is not personable at all, and is horrible at explaining things. I can't really vouch for his knowledge of neurology, other than that I know he conferred with his colleagues about my EEG and they all are certain that I do have epilepsy. I asked him what type of seizures he thinks I have, and he said that it looks like they start on the left side as simple partial seizures, and then they generalize. (I guess that's where the atonic, head-dropping comes in?) Are simple partial seizures the "absence" seizures that I mentioned before? And what does it mean for a seizure to start out as one thing, but then "generalize"? He did not mention anything about atonic seizures, in fact, he seems to totally ignore the fact that I kept losing muscle tone in my head and neck, and whenever I mention it again, he just kind of brushes is off as if to say "yeah, that too, whatever". Obviously this is of the greatest concern to me, because if that happened to me while I was driving or something, it could be dangerous. I also asked some other questions about diet, etc, and he literally ran out of the door as he was answering my question. Anyways, the point is - I am trying to find a new neuro.

I also have some questions about the Keppra. I started off taking 500 mg. Now that my doc knows that I can tolerate it well, he wants to up it to 1000 mg. On the 500 mg, I began feeling really really good. Like I could focus on things a lot better, my almost daily headaches completely disappeared, and I had a lot more energy during the day. On the downside, I was quite jittery and had a couple minor mood swings. Now that I am doubling the dose, will these things get worse? Has anyone else had these types of side-effects of keppra? My doc said that he thinks everything I am feeling is unrelated. I am not convinced.

Also, based on my history, do you think it would be a good idea to get a medalert ID Bracelet? I am just worried that I will have a worse seizure in the future.

Ok, so mostly this was a rant, I realize that now. But thanks in advance for any advice or related experiences that you can share with me!

Welcome greylostoffice.

It is my understanding that simple partial seizures are not absent seizures. A partial seizure just effects one side of your brain. When it generalizes, it crosses to the other side and involves both sides.

As for Keppra, I can't say much as I only took it for 4 days.

I don't wear a bracelet because I only have partials and no one is aware of them unless I tell them. Even then they don't see anything different about me, even while I am actively in the middle of a seizure.

 

[Belinda5000]

I'd first find another doc who listens to me.But I'd ask this guy first to explain what I didn't understand until I found one.I do it with my neuro all the time.If you don't want to go up on your Keppra tell him.Its up to you if you want a medic alert bracet I had a paramedic tell me they didn't even look at my medic alert necklace because I cam eout of my sz so fast so I don't wear one.

 

[valeriedl]

I would defiantly look for a new neuro! Yours sounds a lot like my neuro's nurse practitioner. She was horrible and didn't listen to anything I had to say or give me any advice. All she kept telling me was that I wasn't taking my meds (which I always do) and that's why I was having so many seizures. I told the office that I was only going to see my actual neuro for every visit and if this wasn't going to happen then I was going to find a new neuro. Haven't seen the nurse practitioner since.

I love my neuro and have never had any problems with him.

When you tell someone what's going on during a seizure I have a hard time describing it. It's hard to do when you tell people without epilepsy because it's not happening to them. When I try to describe to my neuro what's going on before, during or after a seizure he can usually finish the sentence for me. I can't believe it sometimes!

Meds are horrible to mess with. Not everyone reacts the same way to them. I might tell you one I take worked great for me - no side effects and it reduced my seizures. However if you started taking it the complete opposite might happen with you. I've taken a ton of different meds and dosages through the years, some did good some didn't.

As far as a medic alert bracelet I wear one. The main reason is because I'm allergic to a med and if I were to be taken to the ER I want to make sure I'm not given that med. I take it because I have epilepsy too. During a seizure I blank out for usually 5 minutes or more. I want people to know why I might be sitting there staring off into space - because I'm having a seizure, not drunk.

 

[kirsten]

As I understand it, when a seizure generalises it moves throughout the entire brain. To describe it differently, my seizures begin at the focus, somewhere in the temporil lobe, and then they radiate into the occipital lobe. Neurologists still call those generalised seizures, although as I understand it, generalised means involving the whole brain. The easiest metaphor is to understand it as a lightning bolt that sends electricity to other areas of the brain. It's like an electrical storm. For some, the storm is limited to one lobe, for others, all lobes. The focus is the scar tissue or what ever abnormal area in the brain triggering the seizure in the first place. If the 'electricity' did not spread to any other areas, there wouldn't be much of a seizure. It is the fact that it radiates that causes the problem.

I must tell you that I have never met a neurologist I didn't like. They seem to me to be the funniest, wackiest, kindest specialists in the medical community so I don't think it will be too difficult for you to track down one you can work with.

There is, of course, no way of knowing how you will respond to a higher keppra dose but your symptoms are extremely common for keppra and common sense would indicate that your side effects would worsen, at the very least to begin with. There is always a chance that, after a few months, they will completely disappear. Whether or not you can cope with that is entirely your decision--we all have different side effects that we are willing to handle and others that we are not. I couldn't cope with keppra's mood swings so I changed to something else. Rest assured, your mood swings are most likely directly related to the keppra--if you do a search of these forums you will find a bunch of threads by other posters having experienced exactly the same thing and if you read the Keppra package insert, you will find mood swings listed as a side effect. I must mention that it's very important, particularly for you, not to stop your meds without a neurologist's guidelines for tapering and replacing. Late onset epilepsy needs to be managed very well because every seizure increases your odds of more seizures later.

 

[N Sperlo]

Hey greylostoffice

Looks like these guys gave you a lot of good answers and I agree with them. Sometimes it is hard for doctors to get on the same level with people who are having a hard time understanding what is going on. I was 16 and confused when I was diagnosed.

I have been on Keppra for quite a while now and it does give me some pretty bad mood problems. Keppra doesn't fix my problems 100%, so I am also on Vimpat. I decided to stop taking my medication a few years back and the end result was not good. Don't change anything without your doctor knowing.

The rage issues are controlled. I take Vitamin B6 and B12 supplements and on days I don't take them, I can tell a HUGE difference especially if I get pissed off. I'll be taking medicine for the rest of my life, so I'm used to that.

Be sure to communicate any problems you have with the Keppra weather they be the side effects or the facts such as not wanting to change the dosage. Your doctor may have a reason he wants to get you on a higher dosage.

I'm happy to discuss any issues you have with the Keppra. Best of luck.

 

[Cint]

Hi lostgreyoffice,

I've had E for over 30 years and had SP, CP and TC seizures which were actually secondary generalized TC seizures, meaning they started out as a CP and went into a TC seizure (grand mal). I've tried many meds over the years and currently am taking 3000 mgs of Keppra and have been for 12 years. As mentioned before, Keppra can cause rage and depression, so beware.

Here is a great website that explains different seizures:
http://www.epilepsy.com/epilepsy/types_seizures

And I do wear a MedicAlert bracelet because on several occasions 911 has been called. It has the meds listed, plus other conditions and phone #'s.

 

[giveasmile]

Hello and welcome!

I'm really happy to hear that the 500mg Keppra made you feel better already. Doubling the dose doesn't necessarily mean double the side effects but if you are worried about it you can always go up more slowly. Speak to your doctor about it. Ask him maybe for a 250 increase at a time or if you can try to stay at the 500 and see if that's enough, or stay on it a little longer before the next increase. Everyone reacts differently to every drug and dose increase/decrease so it's important to find a Neurologist you feel comfortable communicating with.

Absence seizures are a type of generalized seizure. I got frustrated with my doctor, too, because she wouldn't tell me exactly what kind of seizures I am diagnosed with and just wanted to talk about medicine. After pressing her at other visists she just keeps saying that they don't always know where they start, or what is causing them, and that many people have multiple types of seizures and I am one of them. I didn't even know what that meant but this page helped me. http://www.epilepsyfoundation.org/aboutepilepsy/causes/partialgeneralized.cfm

Talk to your doctor about it if you are concerned about driving. Or just use your judgement and don't drive until you are sure the medication is working.

I wear a medical alert bracelet for another life threatening condition but didn't add "seizures" to the bracelet. I never really thought about it to be honest.

 

[Cint]

Absence seizures are a type of generalized seizure. I got frustrated with my doctor, too, because she wouldn't tell me exactly what kind of seizures I am diagnosed with and just wanted to talk about medicine. After pressing her at other visists she just keeps saying that they don't always know where they start, or what is causing them, and that many people have multiple types of seizures and I am one of them. I didn't even know what that meant but this page helped me.

Sounds like you need to see a different dr.,perhaps an epileptologist. I am one of those that have different types of seizures, also, but I don't experience absence seizures. Here is an excellent explanation of these type of seizures: (from www.epilepsy.com)

ABSENCE SEIZURES

How long do they last?

Usually less than 10 seconds, but it can be as long as 20. They begin and end suddenly.

Tell me more

Absence seizures are brief episodes of staring. (Although the name looks like a regular English word, your neurologist may pronounce it ab-SAWNTZ.) Another name for them is petit mal (PET-ee mahl). During the seizure, awareness and responsiveness are impaired. People who have them usually don't realize when they've had one. There is no warning before a seizure, and the person is completely alert immediately afterward.

Simple absence seizures are just stares. Many absence seizures are considered complex absence seizures, which means that they include a change in muscle activity. The most common movements are eye blinks. Other movements include slight tasting movements of the mouth, hand movements such as rubbing the fingers together, and contraction or relaxation of the muscles. Complex absence seizures are often more than 10 seconds long.

Who gets them?

Absence seizures usually begin between ages 4 and 14. The children who get them usually have normal development and intelligence.

What's the outlook?

In nearly 70% of cases, absence seizures stop by age 18. Children who develop absence seizures before age 9 are much more likely to outgrow them than children whose absence seizures start after age 10.

Children with absence seizures do have higher rates of behavioral, educational, and social problems.

And generalized seizures:

Rapidly involve both sides of the brain and different ‘networks’ or areas of the brain. The networks can be on the surface of the brain or involve deeper areas. Generalized seizures don’t need to involve the entire brain, just part of both sides. Sometimes seizures may look like they start on one side but spread so quickly to involve both sides of the brain.

Talk to your doctor about it if you are concerned about driving. Or just use your judgement and don't drive until you are sure the medication is working.

You should be very concerned about driving and your seizures, especially since you were just recently diagnosed. I had a CP while driving and hit a tree about a year ago. Totaled my car, but thankfully no one was injured. Sometimes our judgement isn't reliable. And we may not know for sure if the med really works for a while (efficacy of drug). Driving laws vary state to state. Don't drive until seizures are under control!