Refractory Epilepsy and Controlling Seizures

[TKDTyler]

Hi, my name is Tyler, I'm 21 and I'm new to the forum. I was diagnosed with complex partial TLE over two years ago and am considered refractory. I have on average about 15-25 seizures a month. I've had two 15 min EEG's, a 3 hour EEG, and an overnight EEG with one abnormality on one of the test. I've also had a normal MRI with contrast. I've been on Ethosuximide, Topiramate, Tegratol, Vimpat, Depakote, and I am currently on Klonopin, Dilantin, and Zonisamide (Stay away! Horrible side effects, im tapering off now before he puts me in Lamictal.).

Now that my history is established, I am curious from personal experience what are the chances of medicine controlling my seizures after this time. We haven't noticed much change from any medicine throughout our trials and they have gotten worse; new symptoms and lack there of, have manifested recently, occasionally I've been told I have hallucinations and see things that arent there. I've recently had a seizure that lasted an hour long and sometimes I don't have an aura, so my concerns are getting these under control before they progress more. I am also getting multiple long episode of hiccups after my seizures which my physician said could be another seizure, a new characteristic of my seizure, of recovery from a seizure.

My other question is based off my symptoms which side would it seem my epilepsy is on. I am right dominant but my seizures consist of Deja Vu, altered state of consciousness but during so I might hallucinate and have slurred speech when I talk, cant find words and say "um" repeatedly or can't read simple words. Afterwards i have no recollection of what happened (these are told to me by my fiance), nausea (sometimes I vomit), dead tired, and headache. Outside of seizures my short term memory is horrible as expected with seizures, sometimes I stutter but not often or have a hard time finding a word.

I apologize for the long post but I appreciate any help or advice you can give me. I'm hoping if medication doesn't work I might have a chance to have a lobectomy if the focus is in the correct place.

 

[Frink]

Hi Tyler, welcome to CWE. I have right side TLE (complex and simple partial) with symptoms very similar to yours, I am also "medically refractory".

 

[seagull]

What you got not uncommon and hiccups can be sign of brain problems..
I go back to hospital kick some serious arse until get right treatment.have you had MRI

 

[Nakamova]

Hi TKDTyler, welcome!

My other question is based off my symptoms which side would it seem my epilepsy is on.

The specific symptoms you describe aren't limited to one side of the body or the other, so they don't point specifically to either the right or left temporal lobe as a point of origin. It's also possible to have TLE seizures that originate on both sides of the brain, or originate on one side and then spread to the other — so the symptoms alone aren't definitive of one side or another. Since your seizures are considered refractory, have you discussed the possibility of surgery with your neuro? If you are considering it, then you will undergo a detailed scan. The scan would indicate in which area or areas of the brain the seizures might be originating, and whether the areas are focused enough to make you a good candidate for surgery.

 

[CQ:)]

Hi Tyler

Welcome to the forum

I have left temporal lobe epilepsy & I've had epilepsy most of my life but had a few years breaks between seizures.

Had my 1st tonic clonic seizure when I was 9 months & took tonic clonics until I was 3. I went 21 years seizure free until my seizures returned in May 2002 when I was 24. After they returned I took auras, simple/complex partials with the odd tonic clonic. All MRIs I've had showed scarring on my left temporal lobe.

When my seizures returned my original neurologist (neuro i saw in my home town) tried me on a variety of meds, Tegretol, Lamictal, Topamax, Keppra & Neurontin. Meds weren't controlling my partials so in late 2009 the neurologist suggested I look into having brain surgery & referred me to a epiologist in the city.

I saw an epiologist in June 2010 who confirmed I was a good candidate for surgery, after that I had pre surgery tests then had my surgery in March 2011. I was 2 years seizure 3 & was able to go from 2 meds down to 1.
But in 2013 I started having funny feelings again which the neurologists I see now (at the epilepsy clinic at the hospital I had my surgery) confirmed were focal seizures (more like simple partials). I am currently on 3 meds Tegretol, Keppra & Zonegran but they aren't high doseages & although I still take the odd seizure they aren't as bad as they were pre surgery.

 

[acshuman]

! ! ! ! WELCOME TO CWE Tyler ! ! ! !

Tyler,
You have made a good decision in joining CWE!
You will find that you will get an answer to any question you ask! That is the most important part of being a member of CWE(You can't get an answer if you don't ask a question).
Each case of E is different, so you will hear many different ways that people have dealt with problems that have taken place because of their E.
You have to learn to read each of these different answers and choose the ones that you feel are the most similar to what may help you. onder:

acshuman

 

[Porkette]

Hi Tyler,
Welcome to CWE! Just like you I have temporal lobe epilepsy along with complex partial and absence seizures. I've been on over 13 different seizure meds and nothing worked so I began to see an Epileptologist who did a DNA test on me and found I was drug resistant. If you haven't seen a Epileptologist you may want to consider seeing one they are very well educated in epilepsy and keep a person on the least amount of seizure med.
You may also want the see a neuropshycologist these Drs. do tests on a person and can see what side of the brain is being effected when it comes to speech and memory. A person speech is on the left side of the brain but after I had my test done I found out my speech was split on both sides of the brain. Look into having brain surgery done I used to have as many as 300 seizures a yr. but I had the surgery and I was told it would only reduce the seizures and this past yr. I had only 65 seizures and many of them were aura seizures where I remained conscious. One thing that has really helped me a lot is the medical marijuana that has cut my seizures down a lot. I get it in a mouth spray and squirt it in my mouth once a day. If you are interested check out healthy hemp oil you can buy it on line and they will delivery it to you by mail. If you don't like it you get your money back in 90 days. Also vitamin b12 and folic acid have helped reduce my seizures also. Cut back on the carbs and starch foods that also helps. I wish you the best of luck and May God Bless You!

Sue

 

[valeriedl]

When I was first diagnosed with epilepsy I was having a ton of very bad seizures, over 15 a month, and my neuro couldn't find any meds that were really helping. Some I couldn't take the side effects of, some made things worse and others didn't work at all. I'm unable to have surgery and my neuro suggested getting a VNS and it has helped me a ton.

I am still taking meds and having seizures but not nearly as many as either. On average I have about 4 seizures a month. I'm usually able to stop the seizure from coming on, as long as I can feel it, by using the VNS magnet or someone will use it on me while I'm having a seizure and I'll come out of it pretty quickly.

 

[seagull]

Now I lean something my left temporal lobe is all temporal lobe now i never had doc explain to me that to me you get answer from peronel experience of others or others who explain it in words you understand.
I made deliberate chose years go not wanting to know about myself and e mainly bad experience of others and daughter had it rathe nasty form of e that required her going to a hospital school.I come to a point in life know you enemy because your body changes and medical treatment getting better.i once had someone say women like me with e should not have children because they come into world as retards and my daughter turned out be born brain damage it was nothing to do with my e it was terrible bad luck...
That attitude is changing but unless I in company of othe people with e I never talk of it.My son and daughter in law never leave me on own with there kids it huts drdfully and my son a doctor so even today attitudes slow to change and I one of the causality of that thinking but I digress you take all information digest it then you on level playing field with doc and you not taking shit you need all the tests going unless you in uk then you whisle for them.it can along time to know which med or combination that suitable.sooner started sooner mended

 

[seagull]

Also learned my spelling and grammar is crap after just reading that post.That also down to e but only little bit

 

[350spider]

Hi TKD,

First off, it's nice to meet you. I joined the forum a little while ago, and have learned more from the people here in my lifetime of epilepsy (36 years). Sometimes, there are questions we don't quite feel comfortable asking our doctors (we should though!), and sometimes we just don't think of them at the time of the appointment. CWE is a great place to get many answers to your questions.

As for your specific situation - epilepsy is so varied it can come from many different parts of the brain. For example, I have some seizures that originate from the left lobe, down by my speech center, and that affect my emotions, motor functions, memories, etc. However, another person might have some similar seizures, but which might originate from somewhere else.

I think it's a good idea to sit with your neurologist and ask him to explain not just where your kind of seizures can come from, but others too, so that you can feel more informed (and notice any changes).

I'm sorry to hear you're suffering so much. I'm on another med trial at the moment (after adding Clonotril to my Vimpat and Lamictal), and it didn't quite work, so at least know you're not alone!

 

[valeriedl]

Also learned my spelling and grammar is crap after just reading that post.That also down to e but only little bit

That's ok, English is your second language isn't it? :roflmao:

 

[TKDTyler]

Im sorry you're having so much trouble and for people to say things like that to you about birthing children is wrong. I'm sure you're a proud mother and won't let anyone take that away.

 

[TKDTyler]

Also learned my spelling and grammar is crap after just reading that post.That also down to e but only little bit

Im sorry you're having so much trouble and for people to say things like that to you about birthing children is wrong. I'm sure you're a proud mother and won't let anyone take that away.

 

[TKDTyler]

Hi TKD,

First off, it's nice to meet you. I joined the forum a little while ago, and have learned more from the people here in my lifetime of epilepsy (36 years). Sometimes, there are questions we don't quite feel comfortable asking our doctors (we should though!), and sometimes we just don't think of them at the time of the appointment. CWE is a great place to get many answers to your questions.

As for your specific situation - epilepsy is so varied it can come from many different parts of the brain. For example, I have some seizures that originate from the left lobe, down by my speech center, and that affect my emotions, motor functions, memories, etc. However, another person might have some similar seizures, but which might originate from somewhere else.

I think it's a good idea to sit with your neurologist and ask him to explain not just where your kind of seizures can come from, but others too, so that you can feel more informed (and notice any changes).

I'm sorry to hear you're suffering so much. I'm on another med trial at the moment (after adding Clonotril to my Vimpat and Lamictal), and it didn't quite work, so at least know you're not alone!

Thank you and everyone else so much for the reply. I know it is tough for all of us but I always try to remember in the back of my mind someone is always much worse off. Coming to epilepsy forums is a huge help, I had no idea when I was diagnosed just how supportive and what a close knit community E patients were. Everyone is always trying to help each other and we're in this together; it's overwhelming.

 

[arnie]

Hi and welcome! Something that strikes me as kind of odd is that in just over 2 years you have been on 9 different medications, and apparently on combinations of meds as well. Since it can take, in some cases (such as Lamictal), to get things up to a therapeutic level, and then several more weeks to see if the meds are having an effect, it seems that your docs are maybe being a little hasty with the med changes. Also, most often they will start with drugs as a monotherapy and move into combinations of drugs if you're not getting good results. With some meds you can tell pretty quicly if you're going to have bad side-effects, but even then it's usually at least a few weeks. YOu might want to think about getting a second opinion on the med issues. At your age, and with relatively "safe" seizures (I was having poorly controlled complex partial szs to the tune of several hundred a year for over thirty years with no really dramatic influence on my life) I wouldn't even consider having your head cut open and your brain messed with!
Again, I'd sure wonder why you've been on such a huge number of meds in such a short time. Onward!

 

[seagull]

That's ok, English is your second language isn't it? :roflmao:

Lol some would say twaddle first language

 

[TKDTyler]

My physician started me on monotherapy and we slowly worked through different meds to see what worked and upped them to therapeutic level, always doing blood work periodically to maintain a check on those levels. After one and two meds together didnt help we started three at a time. So it's not an issue of not having long enough time for the medicine to start working in between.

Also you mentioned you had a few hundred a year and had no issues with daily life. How is that? My doctor highly recommended me not to work and I've still tried anyway so I'm not stuck in a house but no one will hire me with my condition. They obviously don't say that due to equal opportunity laws set in place but what type of place do you or others with complex partial TLE recommend work?

 

[TKDTyler]

Hi and welcome! Something that strikes me as kind of odd is that in just over 2 years you have been on 9 different medications, and apparently on combinations of meds as well. Since it can take, in some cases (such as Lamictal), to get things up to a therapeutic level, and then several more weeks to see if the meds are having an effect, it seems that your docs are maybe being a little hasty with the med changes. Also, most often they will start with drugs as a monotherapy and move into combinations of drugs if you're not getting good results. With some meds you can tell pretty quicly if you're going to have bad side-effects, but even then it's usually at least a few weeks. YOu might want to think about getting a second opinion on the med issues. At your age, and with relatively "safe" seizures (I was having poorly controlled complex partial szs to the tune of several hundred a year for over thirty years with no really dramatic influence on my life) I wouldn't even consider having your head cut open and your brain messed with!
Again, I'd sure wonder why you've been on such a huge number of meds in such a short time. Onward!

My physician started me on monotherapy and we slowly worked through different meds to see what worked and upped them to therapeutic level, always doing blood work periodically to maintain a check on those levels. After one and two meds together didnt help we started three at a time. So it's not an issue of not having long enough time for the medicine to start working in between.

Also you mentioned you had a few hundred a year and had no issues with daily life. How is that? My doctor highly recommended me not to work and I've still tried anyway so I'm not stuck in a house but no one will hire me with my condition. They obviously don't say that due to equal opportunity laws set in place but what type of place do you or others with complex partial TLE recommend work?

 

[arnie]

That still seems like an inordinate amount of meds in a very short time, but I won't belabor that. As for working while having that many seizures, my seizures never lasted very long, probably 10 seconds to a minute, and when I had them I might get pale, smack my lips a little, and pause or get a bit confused about what I was saying, but I always knew what was going on and got pretty good at being able to carry on during and after the seizure. Lots of people wouldn't necessarily notice much, or would just think I was thinking about what I wanted to say. People who knew me well could always tell. I would have them occasionally when walking or riding my bicycle or even driving and never had any issues. They definitely took a toll on me, though, and on days when I would have 8 or 10 or more I would be pretty beat by the end of the day. I had seizures while I was in college getting a BA, while I studied for my Master's and while I worked for 15 years as a social worker and 15 as the owner of a bicycle shop. I've been seizure free for almost 3 years now. That has been mostly due to tracking and then graphing my seizures which enabled me to find a pattern and adjust my meds to stop the seizures. Click on the seizure tracker link by my sig and try it for yourself. It's always a good idea to keep a record of your seizures, but unless you have the numbers in a visual form it's hard to detect any pattern. Best of luck to you.