Seizures

[TheDag]

Hi all
Thought I should put my little blurb on here. I have had grand mal seizures, partial complex and absence seizures. I don't know the general medication names but rather the brand names so maybe someone can help with the generic names. I started on a very high dose of Epilim of 1000mg (I was 14 at the time and 1000mg was the top limit of the reccomended adult dosage. When I got to 3000mg I had a change to Lamictal but had breathing problems which is a known side effect. I was then moved to Dilantin which did nothing before starting on Neurontin. i did have immeadiate improvements on Neurontin and my fits were less frquent but more severe. My bible study group got a real scare one night. I cut my head open when I fell onto the corner of a very solid coffee table. The group prayed very hard for me that night. I left hospital 8am the following morning had a job interview at 9:30am which I got and settled out of court in the legal action I was taking against a company at 3:30pm. It is great that God looked after me in that situation and in others situations when I've had fits.

Recently my fits became very frequent. I had three in seven months. I had never had more than one within one and half years before. Yet another EEG was done (I've had a dozen over the years) which on this occasion showed something that has never showed up before. This enabled the specialist to actually diagnose what kind of epilepsy I have which previously they could only narrow down to three categories (out of four!). Neurontin is known to make that kind of Epilepsy worse. So while I was more coherant in speech and other little things it didn't really help over all.

I am thankful that I have been able to help other people who have epilepsy both here and in real life by giving them support. I knew one person who was hoping to grow out of their eplilepsy and were quite upset when they found out they wouldn't. I hope God continues to use me to help others. Of course my wife would be alot more at ease if my epilepsy wasn't a problem. She does feel a bit uncomfortable leaving me to look after our young baby especially when she knows I'm tired. (sleep deprevation is my main trigger) I take sleeping tablets every now and then to make sure I get a good nights sleep although the other week I didn't take one and apparently our son woke up screaming in the middle of the night and I didn't even stir.

 

[EbonNelumbo]

I was on 3,000 mg of Keppra daily (1,500 in the morning, and 1,500 at night.) I was also on two other things, though I don't recall.

Once I started taking steroids, they have almost subsided...I don't get extremely bad seizures as I used to, though I will often completely space.

 

[Perhaps Today]

I have had a few grand mall seizures, and I take 180mg of Phenobarbital every night. I haven't had a seizure since 1991, but every EEG I have had since then still show seizure activity.

 

[Luther073082]

Currently on 300 mg of Dilantin. The seizures seem to be treated.

 

[Hawk007]

Hi all,

It is good to hear that there are others like ourselves, I get petty malls with the medicine, but fortunately very rarely grand malls........
I believe we need to make a choice, is the promises of Jesus the truth or is it substitute to man's diagnoses? We need to make decrees, even though the seen is telling us we are sick we need to live by the unseen which promises us that we are healed by His stripes. The righteous live by faith.
Everyday we must say out loud "in the name of Jesus, epilepsy I curse you and command you to LEAVE! my body! Right now! Amen, thank you Jesus that we are HEALED by Your stripes when you sacrificed yourself for us!" doing it until we receive our healing.
We all know our time is not God's time, so we need to stand strong and evil will flee from us, never give up my dear friends.

All the best!

 

[Darling Deedee]

Hello!

I've been having tonic-clonic (GM) seizures since I was 19 (I'm 25 now).

I'm on 600mg Gabapentin (Neurontin), 400mg carbmazepine (tegretol) and 75mg Lamotrigine (Lamictal).

I've managed to move away from home into my own apartment and so long as I'm careful about where I go and what I do (I'm a photosensitive epileptic) I can usually keep my seizure to one every three or four months. Sure beats the pants off having six or seven a day like I did when I first started having them!

So glad there are other people with seizures here!

-Deedee

 

[RuthD]

I am happy for you all getting better on medicine and having less seizures. God bless you.

 

[JesusChristFan]

If someone could tell me from the description I am about to give what type they are, I would appreciate it: I have the kind where I wake up, and, scream for someone, and, one time I was in the bathroom, and, I wanted to sleep on the floor. I did not know I was in there. I usually have 2-3 at a time for about 30-45 seonds. WHat kind are they? I am on Tegratol. They are controlled too. I had my last one at the end of March 2008, while I was being weaned off the pills after not having one for maybe 10 years. Don't remember. May never be weaned totally off them for life.

 

[flowerforever7]

Questions..

I saw this post and thought I would post a question here since it is about seizures.

When I was little my mom said I use to have absence seizures.
When I was in my early 20s I had a bizzare episode (never experienced anything like this before in my life), where I was sobbing for a long time do not remember it being for any particular reason, anyway, while I was sobbing one of my hands was bent over and my arm kept repeatedly moving up and down for a long time. some people nearby took me to the ER, as time progessed I was having lots of trouble being able to speak. People were asking me questions and it was like I didn't know words to answer them. They thought it was psychological and admitted me to psych; later when I guess I had recovered I was called into a room by one of the doctors who told me they believe that I was having a partial (it sounded like he said ipclectic?) seizure. I have never had an episode like that since then.
However, repeatedly over the past 1-3 years, sometimes I experience jerking movements while sleeping and upon waking where my head jerks and my arms flail repeatedly and intensly. I have woken up exhausted from this. I decided to get this checked out and went to a neurologist. They did some sort of test where they put stickies on my head and the test came back normal. They wanted me to get an mri but I couldn't do it when they wanted me to as I was moving out of state. I still have not gotten the mri.

Does this latest stuff the jerking movements while sleeping and upon waking sound like possible night seizures? Is it possible to be having seizures even if the test (the one with the stickies on my head they took- can't remember the name of it, sorry), comes back clear?

Thanks.

 

[TheDag]

Does this latest stuff the jerking movements while sleeping and upon waking sound like possible night seizures? Is it possible to be having seizures even if the test (the one with the stickies on my head they took- can't remember the name of it, sorry), comes back clear?

Thanks.

The test sounds like an EEG. In an EEG from what I can tell they basically seem to try and get you to do things that will get your brain waves acting as if your having a seizure. This means things don't always show up so it is not conclusive. However it is cheaper than getting an mri and saves time if things do show up. In my last one stuff showed up that had never shown up before in the last twenty years.

It is possible to have seizures even if you don't have epilepsy. There are different things that cause seizures. So I strongly reccomend getting an mri as soon as you can.

 

[flowerforever7]

Bizare development... I recently learned how to work my webcam and decided to make a video to post on youtube. I believe I witnessed myself having an absence seizure when I played the video back! I was talking all normal and then my eyes went over to the side and started doing this odd far away movement and and I was repeatedly smacking my lips at the same time, and then I went right back to talking. Wow. It was like I was having trouble at first when I started talking again, like I sounded sensical but I was stumbling over my words and it looked like it took several seconds for me to become "with it" while I was speaking. This is really interesting. A few times people have looked at me funny and asked dramatically "Are you okay??" And I always wondered why people were asking me that, maybe I was having an absence seizure without realizing it and because I looked abnormal during it they were prompted to ask. hmm.

 

[TheDag]

Bizare development... I recently learned how to work my webcam and decided to make a video to post on youtube. I believe I witnessed myself having an absence seizure when I played the video back! I was talking all normal and then my eyes went over to the side and started doing this odd far away movement and and I was repeatedly smacking my lips at the same time, and then I went right back to talking. Wow. It was like I was having trouble at first when I started talking again, like I sounded sensical but I was stumbling over my words and it looked like it took several seconds for me to become "with it" while I was speaking. This is really interesting. A few times people have looked at me funny and asked dramatically "Are you okay??" And I always wondered why people were asking me that, maybe I was having an absence seizure without realizing it and because I looked abnormal during it they were prompted to ask. hmm.

if you can show a copy of that to your specialist or at least your GP is my suggestion.

 

[flowerforever7]

yeah, I am definately going to save it to show to a dr in the future when I get insurance again. thanks.

 

[flowerforever7]

New development: since having what looked like an absence or partial seizure, during this week dreams that I had years ago are randomly popping into my mind while I'm going about my regular day, not even thinking about dreams. I have never experienced this before, and have had quick flashes of 3 or 4 different dreams at random; could this be seizure related? Anyone else with a similar experience???

 

[RuthD]

If someone could tell me from the description I am about to give what type they are, I would appreciate it: I have the kind where I wake up, and, scream for someone, and, one time I was in the bathroom, and, I wanted to sleep on the floor. I did not know I was in there. I usually have 2-3 at a time for about 30-45 seonds. WHat kind are they? I am on Tegratol. They are controlled too. I had my last one at the end of March 2008, while I was being weaned off the pills after not having one for maybe 10 years. Don't remember. May never be weaned totally off them for life.

I'm sorry you have these. I don't know what they might be but I thought maybe someone else would.

 

[xDirtx]

I have junior myoclonic epiplepsy.
I was diagnosed when I was 15.My dad has the same epilepsy as me.
I have Tonic Clonic (Grand Mal),Simple Partial (Petit Mal) and Absence seizures.Here in Ireland we use different terms.I'm taking Tegretol and Topamax and they're quite well controlled.
Unfortunately I have simple partial's and absences a lot....but they're controlled well compared to when I was first diagnosed.

 

[Mountain_Girl]

I've been having complex partial seizures since July or August of last year. some of them, I have to say, were demonic in some ways (a lot of stuff was going on and it was a pretty bad ending of the year). It was weird because I could tell if it was Satan or if it was just a regular seizure ( with the satan one I would feel afraid, remember some of it and also see things).
When the regular ones started I hide them, didn't want anyone to know but that ended when the started to get worse. It became to where I was having 10 to 20 a day, mostly small but some very long ones.
Right now I'm on 400mg of Lamictal and 1000mg of Keppra daily which is 200mg twice a day of Lamictal and 500mg twice a day for Keppra.
for a while I was on 100mg of lamictal, but it wasn't working and I also had a doctor who didn't care, told me not to call him or anything if something wasn't right (apparently I was in the way of his other patients). He had me on Dilantin for a few weeks, along with the lamictal, but it didn't work. Then he introduced Keppra, still didn't work. Finally I had enough and switched doctors (I'm with Kaiser) and the guy upped my dosage of lamictal and it stopped them! Don't know what the other guy was thinking....oh well.
I scared a lot of my friends, but they were very supportive. Especially two friends, they were so supportive of my husband and I in that time.

 

[ju1ie]

I used to have seizures since i was 2 months? i believe....It has destroyed my life. It was due to a rare genetic disease called Tuberous Sclerosis but ever since I aceepted Jesus inside my heart when I was 18 years old, HE has set me free from them. I still take medicine, but I have beens seizure free for 11-12 years now.

 

[TheDag]

I used to have seizures since i was 2 months? i believe....It has destroyed my life. It was due to a rare genetic disease called Tuberous Sclerosis but ever since I aceepted Jesus inside my heart when I was 18 years old, HE has set me free from them. I still take medicine, but I have beens seizure free for 11-12 years now.

great to hear

 

[vortext]

I was just hospitalized for having a seizure on Tuesday, so this is all interesting to me. I was so embarrassed by having a seizure in public!

I'm currently taking Levetiracetam at the moment, which says that it's used to treat epilepsy. It's funny to me because just five days ago, I had no idea that I had epilepsy!