Visiting an Epileptologist for the 1st Time

[mikestightride]

:twocents:Hello everyone. I had my 5th T/C seizure last night which landed me in the emergency room...again. After meeting with my Neurologist yesterday, he suggested that I see a epileptologist to determine what additional AED I should take. I am currently taking 3,000mg of Keppra daily, but obviously it wasn't enough to do the trick.

Can any of you share ideas of which AED's go well with Keppra in your own experiences? I am worried about the side effects of other meds since I finally got adjusted to Keppra. Any advice would be appreciated. Thank you.

Michael

 

[epileric]

That's sort of a loaded question MTR. Everyone reacts differently to all medications so it really does depend on the person.

I reacted very badly to keppra so of course my opinion doesn't hold it in high esteem but if it's worked for you so far stay with it.

According to my neurologist Neurontin (gabapentin) seems to work well with other drugs but again, I'm sure that often depends on the person.

 

[Nakamova]

Hi Michael --

Do you necessarily need two meds to do the trick? If possible monotherapy would be great, but I guess your epileptologist will know the options.

 

[mikestightride]

I was told by my Neuro that since I was on the "max" dosage of Keppra and I still had a seizure we have to add another med into the picture. I told him that I heard of other people taking higher doses of Keppra, but he said 3,000mg is the max reccommended by the FDA.

I do hope that the epileptologist has some helpful information for me.

 

[epileric]

I was put on a dose of Tegretol higher than was the recommended maximum but that was after being on it for a few decades & building an immunity.

My understanding is that the FDA recommendation is really just that..... a recommendation.

However you should remember that the higher the dosage of any medication the higher the probability of adverse effects from that medication.

 

[Nakamova]

Make sure to ask the epileptologist a lot of questions. Even if he says no to monotherapy, it's worth hearing why. Ask about the potential side effects for any drugs he recommends, and why he recommends particular drugs over any others. Most of the newer AED meds out there interact fine with each other. Some are metabolized in different ways, so that can be a factor, and some work in complementary ways in the brain.

 

[Crystal11]

Hello- I take 3000mg of Keppra XR as well as 600mg of Tegretol XR daily and it helps quiet a bit. I'm not totally controlled though and probably will never be since I was untreated for such a long time. I have complex partial seizures and possible Atonic seizures. Waiting to see my new neurologist next month.
I didn't have any luck with Dilantin- no reaction, just did'nt work at all. Finding the right combination of medicaitons helps too- takes time as well.
An epileptologist is a neurologist that has an additional 4 years of training I believe. They would know all about the medications used and which ones can be use with which meds.
You would probably need a medication that is best used for generalized seizures. But most AEDs can be used for many types of seizures though.
I wish you luck with everything.

 

[Cint]

Hi Mike,

I'd say it is time to see an epileptologist since the Keppra isn't controlling the TC seizures.
According to the PDR, Keppra is used as adjunctive therapy in the treatment for partial seizures.
I have had CP and TC seizures and I take 3000 mgs of Keppra along with Topamax. I also have the VNS and see and epileptologist.
I hope you find a good dr. with answers .

 

[RobinN]

I would ask you if the seizures have increased while on Keppra. If so then perhaps the Keppra is what is not working. To add on top of that amount of Keppra seems a bit much. IMO

When my daughter was trying out meds, I asked the doctor to wean her slowly making sure the first med was out of her system, before trying another med. These are very powerful drugs, and to think that they can just load you up is crazy from my perspective. The meds my daughter tried ALL caused new types of seizure and increased the number of seizures over that period of time she was taking them.

But then I am a big believer in the quality of life question. I have moved to alternatives and found these therapies to help not only the seizures but also overall health. I hope you will consider them, because you will not learn about them from any conventional doctor.

Good luck

 

[mikestightride]

Update - A Month Later

I met with my epileptologist a couple weeks ago. He turned out to be the best Dr I have seen so far. He actually took the time to listen to my opinions and answer all of my questions thoroughly. He was able to figure out that all of my seizures (After the 1st onset seizure, when I was not medicated) were nocturnal. He feels that the Keppra may be working to keep my seizures nocturnal. He believes that I may have a lower threshold for seizures when I sleep so he prescribed me 0.5 mg of Clonazepam at bedtime to protect me at nighttime.

In theory this treatment option sounds great, but I won't know for sure unless he is wrong and I have another episode. No matter how many tests they run, all the results come out Normal. The Dr told me that without an abnormal EEG reading, it is very difficult to find the right medication to control my seizures.

Has anyone ever heard of this treatment option? What do you think?

 

[Meetz1064]

Yes, I've

heard of it. It's perfectly normal, and I have been through the same type of regimen, although mine was added to later on....

 

[RobinN]

I see that you are practically a neighbor. I am in Sierra Madre. Rebecca sees a neurologist at USC. May I ask where you are going?
You are very close to the EEG Institute. If you ever have an inclination to learn about neurofeedback, they are the best people to work with. At least I thought so (but then I have never been to any other office ;o] They do free consultations if you are interested. Plus you get a 10% discount for being a member of CWE... how cool is that?
Hope your new med works for you.

 

[Crystal11]

I just saw my neurologist who specializes in Epilepsy on the 19th. I was taking Tegretol XR 600mg and Keppra XR 3000mg a day for my complex partial seizures. I found that I never liked Tegretol XR and told my doctor I would like to be on something else. So he said the Keppra XR and Lamictal go really well together. I now am taking Keppra XR, Tegretol XR and Lamictal until I can get off Tegretol slowly. I get atonic seizures if I try to lower Tegretol.

He told me I also had migraines and migraines associated with after a seizure or postictal phase. I believe we will talk about PRN meds next visit.
I would ask about newer meds that can be paired with Keppra. Keppra is one of few that doesn't interact, as in reducing or increasing effectivness in other AED/seizure meds.

It also depends on how many seizures you have during a month, what type they are and how long they last- the neuro/dr will decide on which medicine to try. I would actually ask for Lamictal and Keppra together- or Keppra XR to maintain steady state longer- no peaks and valleys in your med serum/blood level.

Wish you luck,
Crystal

 

[Bernard]

Hi mikestightride, belated welcome to the forum. :hello:

... He was able to figure out that all of my seizures (After the 1st onset seizure, when I was not medicated) were nocturnal. He feels that the Keppra may be working to keep my seizures nocturnal. He believes that I may have a lower threshold for seizures when I sleep so he prescribed me 0.5 mg of Clonazepam at bedtime to protect me at nighttime.

Well, that sounds like a start. Are you keeping a seizure diary/journal? It might help you identify other factors related to diet, sleep, etc. that might be contributing to a lower seizure threshold at night.

There are other things you can try (or research) to help mitigate nocturnal seizures too:

http://www.coping-with-epilepsy.com/forums/f23/maybe-help-nocturnal-seizures-8024/

http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-neurofeedback-seizures-1625/

http://www.coping-with-epilepsy.com/forums/f23/night-sweats-sleep-apnea-799/index2.html#post9468

 

[mikestightride]

Thank you all for the replies.

RobinN: I checked into the EEG Institute and live 5 minutes from there, but I am unsure if biofeedback will be effective for my seizures. The challenge is that it is very expensive (over $3K) and I will have no way of knowing if it is working for me or not. I only get 1-2 random "nocturnal" seizures per year. The only way I could prove the effectiveness of this treatment would be if a year or more pass without any new episodes. It's an expensive (and time consuming) chance to take. I guess if it did work, it would be well worth it. That leaves me unsure which way to go with this option.

Bernard: I have an iPhone and downloaded a couple of apps to log my sleep patterns along with a meal diary and emotional stresses that occur daily. So far, I cannot find any obvious triggers. Thanks for the links... they were informative.

I will continue to pray that this new combination of meds will help keep my seizures under control. I am so happy to have found a place where people actually understand me. Thanks again.