New, ADVICE PLEASE

[tinklestarling]

Hi Everyone

I'm new to this and i'm going out of my mind

My husband had his first EVER seizure on july 5th, no family history, no injury, nothing, it just happened out of the blue. He had all the tests done and they all came back clear. The doctors told him it was probably a one off and would never happen again......

WELL...He had his 2nd seizure on the 27th october at 10:45pm, i called the EMS again and we went off to the emergency room, while in the emergency room waiting for a bed he had another seizure. I feel so sorry for him as he always bites his tongue and can't eat for days.

Anyway, the said it was generalized siezures and they gave him all the tests again and everything came back normal so far (waiting on eeg results).

They started him on 500ml x 2 of keppra a day. I have done all the research i can on this drug. Don't knowif i like it....

I was wondering if anyone on this medication or has a loved one on this medication notices that they have jerks or twitches while they are sleeping. My husband, since the last seizures and/or starting keppra has weird movements on the left side of his body, particularly in his arm along with some face twitching, he doesnt feel them and they don't wake him, but im very concerned incase he is having seizures while he is sleeping.

Any help would be very much appriecated as i have not had a night sleep since october 27th, i have to sleep once my husband goes to work, its not good.

Thanks

Denise

 

[RobinN]

So sorry you both are dealing with this.
I know how difficult it is to watch a loved one have a seizure. My 16 yr old has them.

My daughter tried four different meds, and the side effects were awful and none of them eliminated seizure activity. I read that if the first few don't help the % chance of others helping goes down. I am disenchanted by the med route.

I got to thinking that my daughter was fine for 14 yrs. What changed....
So I changed her nutrition, added some supplements to support brain health, talked to a doctor about bio identical progesterone to help with hormonal imbalances, and for the kindling effect of her seizures we are doing neurofeedback. All med free.

You might look immediately at dietary changes. Meds are a bandaid for the symptoms. It is my opinion that they mask the cause. Especially if he has no history or injury.

 

[Crazy Monkey]

Hi Denise

I have generalised absence seizures, I get a lot of myoclonic jerks/twitches, I take Lamictal and it only partly controls my seizures, the jerks I get are not down to the meds but down to the epilepsy, they happen all day long as well as in bed and I am aware that they are happening as they can wake me.

You really need to check out the side effects of Keppra to see if the jerks/twitches are listed and you need to speak to your husbands neuro about it, he/she is in the best position to advise you to what they are.

 

[Nancy]

Hi Denise ... I'm sorry this is happening to you and your husband. It's such difficult stuff.

Keppra and any epilepsy drug take time - maybe 6 weeks - to start working completley.
And I'm far from being an expert but I have some sort of memory that Keppra was one of the meds that is usually used with another ?? But, like the others have said - the jerks and twitches you husband is having at night are probably not side effects -- they are seizures.

And - did your husband receive and MRI? IMHO that's the most important test.

 

[ziggidypoo]

Welcome and sorry about your husband's new E prob.

I'm glad you have come here because everyone is very supportive and knowledgeable.

I have really been helped here.

I'm so sorry about your husband's new situation.

I have taken Keppra for I think, not sure (memory problems), for about 6 months. As it has been increased, my seizure frequency has dropped to about 1/mo or 2 @ most and usually around the same time - 1 mo span.

For me this is awesome.

I get "twitchy" sometimes, but not sure if it is Keppra related.

Was taken off of Triliptal due to low blood sodium levels and grandmal status eleptus???? (had a whole slew of tonic-clonics and coma one after another until my blood sodium level was elevated to normal - my neuro said this was not E but, strictly my blood sodium depletion)

Keppra seems to deal w/ my CP seizures (TLE) very well.

Glad you are here, come on in and settle down and get comfy-cosey - you are welcomed. Hope your husband is much better.

GL

 

[ziggidypoo]

Ps: Question??

twitches can be actual seizures???

shows how new I am, hanging head in embarressment.

honestly and seriously though, totally alert muscle twitching can be actual seizures???

Thanks,
GL

 

[Crazy Monkey]

Hi Gail Lynn

I get Myoclonic jerks and as far as I aware this is a form of generalised seizure, I will be sitting at home minding my own business and all of a sudden my leg will kick out like a reflex jerk. I get these jerks all over my body.

 

[ziggidypoo]

can it be a single jerk?? None that day before the single jerk and no other symptoms with or after for the rest of the day??

GL

 

[Crazy Monkey]

I am not an expert on this subject but, but people who do not have epilepsy get jerks as well and I don't know officially how to tell the difference between the 2, I believe this is to do with when the nerves start to relax.

In my case it is myoclonic as generalised absences and myoclonic seizures go hand in hand and I get them very regularly.

 

[ziggidypoo]

I am not an expert on this subject but, but people who do not have epilepsy get jerks as well and I don't know officially how to tell the difference between the 2, I believe this is to do with when the nerves start to relax.

In my case it is myoclonic as generalised absences and myoclonic seizures go hand in hand and I get them very regularly.

thanks - just trying to learn - i figured some things are just the body responding NORMALLY to muscle usage - such as when I have sat all day ( A BIG improvement for someone who was bedridden 24/7/365) and then lay down - my whole body goes rigid for just a second as every muscle contracts and I may moan as my lungs get in on the act - lasts only 1 second - then, total relaxation. I don't think that is seizure related just exhaustion. But, at this point, I know nothing!! haha!!

Better to laugh as to cry!!
Thanks again,
GL

 

[Kathie]

Gail, This scares the life out of me, my stomach dropped when I read about your experience with Trileptal. My son Alex has started haveing seizures after a 6 year absence, he has been on Trileptal since he was sixteen, he is now 22.
The neurol. figured he needed the Trileptal increased since he has grown alot over the years, she increased his dose about a month ago, he has felt really tired basically exhausted for the past few weeks. He has had to withdraw from College, it's a 30 min. drive for him, he lives at home, misssed too much time, (we where all taking turns driving him) now with the new meds he doesn't have the energy to do much. He's been cleaning up my house and gardens like you wouldn't believe though and he was going to start working with me tomorrow, my company is wonderful and very supportive of Alex. Alex can't go back to school until next september now. Sorry to ramble.

Friday night around 7:30pm he had just finished dinner but was feeling really tired doing lots of eye twitching, in the middle of a sentence he just went into a tonic clonic, we called 911, after he got to the hosp. he had another tonic clonic, I was terrified. I am so afraid of him not coming out, the staff where great running around, they where getting Ativan ready, (I guess that's what they use)??? Once he came around they gave him some Dilantin and kept in him over night for observation, my husband stayed with him and I came home. None of us got much sleep. I wanted to stay but I am no use to anyone when he goes into a seizure because I am so terrified, just like the other lady who says she has'nt slept for a month, we have kept a monitor in our room in case he goes into a seizure in the night, which has happened recently, I heard him by some miracle.
The Dr's sent him home with Dilantin he is to take this along with the Trileptal.
I am going to call his neurologist tomorrow and I am going to take him for his blood test for the sodium levels you mentioned, this was a reminder that it is due, Thank you!!!
I cannot believe what people with Epilepsy have to suffer with, there is such divided information from all the Dr's we have seen. I feel like we are grasping at straws all the time. Alex has cleaned his diet up and is glutten free because that was causing him alot of issues, migraines etc.
Robin, I would really like to get more information on the supplements your daughter is taking, can you remind me how we can look into this? Alex was to see a Naturopath back in June, but she didn't really have many suggestions.

Doe's anyone know know if they have very similar days before they actually have the tonic clonic seizures. Like are you exhausted or have a migraine, eye twitching. Is there something we could have done to help prevent him seizing, like if it is a low sodium level, getting him to drink Gatoraide, or something hi in salt? Does this sound stupid?
I had a dream Thursday night that my mother, (who has passed) was laying beside me in bed holding my hand praying with me, it scared me so much because when I woke up it felt like she had been there in the room, to real a dream.
Now I feel she was there to comfort me because of what was to come the next evening.
Sorry to ramble, there is so much emotion involved that only all of you who are living with this every day can understand. I have read so many stores here and I have cried and taken your pain into my heart.
Thank you all for being the connection my family needs!!!!
Kathie

 

[ziggidypoo]

Gail, This scares the life out of me, my stomach dropped when I read about your experience with Trileptal. My son Alex has started haveing seizures after a 6 year absence, he has been on Trileptal since he was sixteen, he is now 22.
The neurol. figured he needed the Trileptal increased since he has grown alot over the years, she increased his dose about a month ago, he has felt really tired basically exhausted for the past few weeks. He has had to withdraw from College, it's a 30 min. drive for him, he lives at home, misssed too much time, (we where all taking turns driving him) now with the new meds he doesn't have the energy to do much. He's been cleaning up my house and gardens like you wouldn't believe though and he was going to start working with me tomorrow, my company is wonderful and very supportive of Alex. Alex can't go back to school until next september now. Sorry to ramble.

Friday night around 7:30pm he had just finished dinner but was feeling really tired doing lots of eye twitching, in the middle of a sentence he just went into a tonic clonic, we called 911, after he got to the hosp. he had another tonic clonic, I was terrified. I am so afraid of him not coming out, the staff where great running around, they where getting Ativan ready, (I guess that's what they use)??? Once he came around they gave him some Dilantin and kept in him over night for observation, my husband stayed with him and I came home. None of us got much sleep. I wanted to stay but I am no use to anyone when he goes into a seizure because I am so terrified, just like the other lady who says she has'nt slept for a month, we have kept a monitor in our room in case he goes into a seizure in the night, which has happened recently, I heard him by some miracle.
The Dr's sent him home with Dilantin he is to take this along with the Trileptal.
I am going to call his neurologist tomorrow and I am going to take him for his blood test for the sodium levels you mentioned, this was a reminder that it is due, Thank you!!!
I cannot believe what people with Epilepsy have to suffer with, there is such divided information from all the Dr's we have seen. I feel like we are grasping at straws all the time. Alex has cleaned his diet up and is glutten free because that was causing him alot of issues, migraines etc.
Robin, I would really like to get more information on the supplements your daughter is taking, can you remind me how we can look into this? Alex was to see a Naturopath back in June, but she didn't really have many suggestions.

Doe's anyone know know if they have very similar days before they actually have the tonic clonic seizures. Like are you exhausted or have a migraine, eye twitching. Is there something we could have done to help prevent him seizing, like if it is a low sodium level, getting him to drink Gatoraide, or something hi in salt? Does this sound stupid?
I had a dream Thursday night that my mother, (who has passed) was laying beside me in bed holding my hand praying with me, it scared me so much because when I woke up it felt like she had been there in the room, to real a dream.
Now I feel she was there to comfort me because of what was to come the next evening.
Sorry to ramble, there is so much emotion involved that only all of you who are living with this every day can understand. I have read so many stores here and I have cried and taken your pain into my heart.
Thank you all for being the connection my family needs!!!!
Kathie

Please remember, I am new too, and can only tell what is happening with me.

Yes, my neurologist who is also a neurodiagnostician, did take me off of the Triliptel / Triliptal ?? because of the side-effect it CAN have but does not always have of LOW BLOOD SODIUM Levels. Every time I see her, monthly, I have to have all of my med levels checked in my blood and other blood tests. She is very thorough with that. AND, very observant. I have never been to what others talk about an EPIDEMEOLOGIST - ??? It is a dr who specializes only in Epilepsy, I think.

However, in the late 1980's, I did go to a specialist at the EPI-CARE CENTER in Tennessee. He's the 1st one who said I had (at that time it was called) Temporal Lobe Syndrome????

Then, TLE, now Complex Partial Seizures.

Who knows what medical science will discover in years to come.

I firmly believe as we in the forum discuss things and we take such things back to our own neurologists, they may also learn a thing or two!!

I hope everything works out for your son. Wouldn't it be great if the tonic clonic was only due to the sodium levels??

But, Honey, don't get your hopes up.

Each of our bodies work differently.

GL

 

[Cint]

Hi Denise & Kathie

I was once taking Trileptal and my dr. had to take me off that medication also because of the low sodium level. I'm currently taking 3000 mgs. of Keppra daily along with a low dose of Topomax. I don't recall having any jerks, etc. while sleeping while taking Keppra, although I have had a few nocturnal complex partial/tonic clonic seizures since
taking it.

If one is exhausted, it can bring on a seizure, but for me the meds make me tired all the time. And it is certainly understandable that your so emotional under the circumstances. We all know it isn't a pleasant sight at all. I have two grown children, but when they were young, they witnessed their mother having many CP & tonic/clonic seizures. They thought they were losing they're mother.

I sure hope you both find something that works for your loved ones.

Hang in there.

Cindy

 

[Cint]

Hey Gail,
Did you go to the Epi-Care Center in Memphis? Just wondering. That is where I used to live and saw an epileptologist (one who specializes in epilepsy) there, plus that is where I had my lobectomy. I only lived there because my husband (at the time) is a FedEx pilot.

Cindy

 

[ziggidypoo]

Hey Gail,
Did you go to the Epi-Care Center in Memphis? Just wondering. That is where I used to live and saw an epileptologist (one who specializes in epilepsy) there, plus that is where I had my lobectomy. I only lived there because my husband (at the time) is a FedEx pilot.

Cindy

Yes, I saw Dr. Deitrich Blumer - at that time he was called a NEUROPSYCHIATRIST. Central FLA at that time had no answers or treatments for me, so we gave up jobs and home and took our 2 kids and all we could load in the car and a tent and moved at first to SHELBY FOREST STATE PARK until a church loaned us a camper and then we got a tiny cottage to rent - it took Dr. Blumer 1 1/2 yrs of experimenting w/ med and levels to stabilize me - while living near Jackson, MS in my parent's tiny camper, then, moved to TN to in-law's property still in the camper. Then, the seizures stopped for about 20 yrs.

Now, why they came back?? Who knows. Or did I have forms of the seizures and did not know, Who knows.

Triliptel was bad news for me.

I currently take 1,000 mg Keppra a.m. and 1,500 mg Keppra p.m. / about I think 600 mg 2 or 3 times day of Gabapentin/Neurontin ( first took it for spinal pain - it's gone since I can walk and have changed diet so my colon is never overly full and pushing against the anterior buldge of a spinal disk) - and 1 mg Klonapin/Klonazapin 3x day for seizures and anxiety. I think I also take something for seizures and something for depression, I don't know - the nursing staff handles it. I have the list somewhere. This forum has helped teach me, and comfort and strengthen me. On my myspace site I am blogging about Epilepsy Awareness. All my life, I've rambled, as has my mom, and her mom - haha - if that's a symptom - it's inherited!!

 

[stilldancing_98]

I have myoclonic seizures that came on with a brain infection as an adult. My son also has them. I have been on keppra for years and it never caused me to have them. Remember for info. Myoclonic jerks come from the spine. Those are what you get when you are falling asleep and you are tired. The others are myoclonic seizures. They can happen day or night in clusters, (groups where they won't stop) or they can wake you up. I'm sorry, welcome tinklestarling.This is my opinion only and that is it really sounds more like seizures to me. Watch when the seizures happen. Like when he is really tired and just going to sleep. Or just in deep sleep. and write it down.And I would call the doc about it soon.Good luck with this and I am sorry it all started now.

 

[sixpack]

tinklestarling,

I know you are scared. My daughter has taken trileptal (1800mg)for atleast 6yrs. She's not had anything scary happen as a result. In August she had bloodwork done and her sodium levels were in the normal range.

Like Gail Lynn said everyone is different. People react differently to medications. Some meds work very well for one and miserably for another. In my daughter's case her epilepsy is caused a brain malformation called unilateral schizencephaly.

I think the best thing to do is discuss your concerns with the neuro. If you want to try nutritional and supplemental route, run that passed the doc too. Diet has helped some with E.

 

[skillefer]

Hello tinkle and Kathie! Welcome to CWE. As you can see, a friendly group. So feel free to keep the questions coming. As for whether seizures can just suddenly start up after a long period of no seizures, the unfortunate answer is yes. Growth spurts, hormone shifts, and sometimes just the med no longer working are the usual reasons, or the meds levels needing to be upped. Also, make sure that you take into account his blood sugar levels. I found out the hard way that I was hypoglycemic. I didn't eat breakfast (back then I didn't), and ended up having a seizure while driving. Since then, I make sure that I eat 5 times a day, and if I have a carb, I make sure to have some protein. I know that you're scared. But the best thing you can do is get informed and then be supportive. E is not a death sentence. Your kids can still go on to have happy productive lives. This is just a small detour. So feel free to ask questions, check out the Epilepsy 101 threads in the llink in my signature, and if you need to vent, check out the padded room. You aren't alone in this.

 

[Bernard]

Hi Denise, welcome to the forum. :hello:

Keppra is well tolerated by many people. For those who don't tolerate it well, vitamin B6 can sometimes help curb the moodiness side effects. Beware skin rashes though. That can be serious (ie. life threatening).

Educating yourself about epilepsy can help a little bit with the anxiety, but getting the seizures under control is the only real solution. Have a look around here:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[walksalot]

myoclonic jerks

Some days I have lots of myoclonic jerks and that involve any part of my body they want to. Some parts more than others, though. When I'm sitting in a public place with my legs crossed and one of my legs kicks up real high, I get really funny looks from the people around me. It's good to come here and talk about it and not get a smirk from somebody who thinks you're not normal. :0) Jan