Hello everyone!

[Jenwah]

Hi Everyone.

I am Jenny. Although I don't have epilepsy, I have joined this forum on behalf of my Dad. He has Complex Seizures of the Temporal Lobe and has been struggling to control it for over 6 years now.
He has been on 5 different types of tablets:
1. Epilim
2. Epilim & Keppra
3. Eplim & Tegretol
4. Lamotrigine
5. Current on, Lamotrigine & Zonisamide.

When he was Epilim, it didn't really do anything. Turns out he shouldn't have been given this - it's for a different type of epilepsy.
Keppra made his personality aggressive and he couldn't remember anything he did.
Tegretol was awful - like the above, he went aggressive but his personality changed and when he would have a seizure and come out of it, it was as if he had no strength to pick himself up - he would just struggle on the floor, it was horrible to see.
Lamotrigine has so far, (touch wood) been the best tablets ever, he seems to be himself. No personality changes, no aggressive behaviour. He's just my dad which is great. But the fits still happen - not as often but the DR suggested trying Zonisamide with it too - so far so good.
Seizures have decreased however, over a good couple of months, he seems to be sleep walking at night a lot and doing odd things. Things like; stacking the kitchen chairs, getting cutlery out of the drawer and putting it in a precise pattern all with his eyes shut! And when he wakes up to do this, it's like as if he is in a trans state. We describe it as "lights on - but no-one is home" - I don't mean that in a disrespectful way to anyone, but it's as if he isn't there (mind wise).. It's if he can't go to sleep without doing this routine of things.

There are other things that we feel that are affecting his epilepsy as his sleeping patterns are all over the place - there's a place across the road where we live, a chemical plant that has fans humming alllll the time. He is sensitive to hearing it and it wakes him up during the night - it disrupts his sleep patterns which I know is so important to someone who has epilepsy.

I feel joining this site will maybe help my Dad and it will be interesting to see if anyone does the same as my Dad.

Hope to speak to you all soon thanks for reading.
Jenny

 

[N Sperlo]

Welcome Jenny

I think you can learn from everyone here and we will learn from you. It sounds like you do have some interesting knowledge to share and it is admirable you are here to help your father.

Keppra is the only drug you mention that I know well enough. It does have a tendency to effect someone's personality. It effects mine. I have made changes in my life to help and the changes have been very effective.

I have my own little theory that "sleep walking" or "sleep movements" can be relative to a simple partial seizure (aka an aura). I was punching, kicking, throwing things, slapping my wife, and doing plenty of other strange things in my sleep. I never got up that I know of, but it is certainly possible. When my doctor had seen videos of me doing situps and other similar things, he decided it was relative to seizure activity and put me on Vimpat. As soon as I took the Vimpat, the activity completely stopped and I sleep like a baby. Maybe this information, although very different, may help you understand what is possibly going on.

Good luck and welcome again.

 

[arnie]

Hello and welcome, Jenny! I'm glad you found this place. Do you think your dad would also like to become a member? I am on Lamictal (lamotrigine) which has worked better for me than the other meds I have been on, though I still have lots of simple partial seizures. I recently had a vagus nerve stimulator implanted which I hope will help reduce my seizures. I was interested when you commented about the chemical plant fans. I live about a block away from a flour mill which has big noisy vacuum-type things going pretty much 24/7, and I have always been really annoyed by the noise, while the rest of my family hardly even notices it any more. I think that epilepsy can make us more sensitive to things like noises and smells. Nice to have you here. See if your dad wants to join in!

 

[Belinda5000]

Hi Jenny,

welcome to CWE.It can take awhile to find the right drug to control ones seizures.
All AED have side effects that can take awhile to get use to.I've been taking Tegretol since it came out.All the AEDs have fatigue as a side effect.

 

[marika853]

Welcome Jenny,
What a good daughter you are! You will learn many things here and everyone will be super helpful!
M
ps. Encourage your dad to join

 

[MAB]

Welcome Jenwah. Lots of good info here and a lot of nice people. I have learned more here than I learned from my doctor.

 

[MAB]

I think that epilepsy can make us more sensitive to things like noises and smells. Nice to have you here. See if your dad wants to join in!

I think you are right. I am much more sensitive to smells than I used to be. I even thing they bring on simple partials sometimes.

 

[motorbill66]

MAB,
Jump right in! You've found the right place. Believe me, I have looked at them all. The people here will treat you with respect and love. It doesn't matter one bit that you yourself are not the Epileptic. We have plenty of people here who are speaking for or about someone close.

Has anybody tried a sedative for him? I had the same problem in a way. I would suddenly jump up out of bed and Linda (wife) says I would be trying to climb the walls or some other non-sensical thing, before collapsing and having a grand mal.

I've now been prescribed Xanax. 1/2 mg at bedtime. This allows me to get to sleep in spite of everything going on in my head.

So, now I take: 100 grams of Lamictal ER in the morning along with 100 grams of Lyrica.
100 grams of Lyrica at noon
200 grams of Lamictal ER and 100 grams of Lyrica plus the Xanax at bedtime

That's my current regimen. Lyrica is advertised as a neuropathic pain reliever, but was actually developed as an anti-convulsant. I believe Xanax was the same story, but I'm not sure. My neurologist says that Xanax is also used for Epilepsy. If your neurologist sees the need, he may prescribe more of the Xanax. I know you hear a lot in the media about Xanax being abused, and that it can be addictive. Hey, we're adults here. We use medications as directed. I have found absolutely no cause for concern, and I will admit that I have been known to enjoy a drug or two in my time. But, then again, I'm certainly no doctor, so ask about it. I did after hearing about its sedative properties from a friend when I couldn't get to sleep for 100 hours straight.

I have been tried on every damned drug there is for this disease. This finally works. I haven't had a seizure in two and a half months now. I usually had at least one a week before. Lamictal is hard to get used to. It puts a 'brain fog' around you and makes cognitive issues worse. Hang in there if that is prescribed. It took me a year to get used to it and to learn to 'think through' the stuff. Now I feel pretty sharp. It was a bi--h, but worth the perseverance.

Hang in there. Things will get better. They really will.

Bill W.

 

[N Sperlo]

MAB,
Lamictal is hard to get used to. It puts a 'brain fog' around you and makes cognitive issues worse. Hang in there if that is prescribed. It took me a year to get used to it and to learn to 'think through' the stuff. Now I feel pretty sharp. It was a bi--h, but worth the perseverance.

My wife is on Lamictal for Bipolar Disorder. She started it a few months ago and didn't have as much trouble as Bill did. It just goes to show you that you will hear how differently people react to different regiments.

 

[qtowngirl]

Lamotrigine has so far, (touch wood) been the best tablets ever, he seems to be himself. No personality changes, no aggressive behaviour. He's just my dad which is great.

welcome Jen!

good to hear about the lamotrigine, i'm on it myself. it's one that's noted as a mood stabilizer so this is likely why he has more regulated moods, not angry and all over the place emotionally etc. so if it's working it's a double bonus, always good to hear!!
i agree with everyone about your dad joining, sounds like you guys are really into his progress which is awesome, and this is a great place to learn and share. best epilepsy support forum in existence. :bigsmile:

 

[Jenwah]

Wow guys,

Thanks so much for the warm welcome and support already I got my Dad to have a look around the site last night - he doesn't really use computers often so probably wouldn't be on as much as me, but I will certainly show him your messages he found what he read very interesting and I think he will want to come on again (or get me to set him up on it haha)

So glad I came across the site. It will be a great help talking to others who are coping with epilepsy and I feel that most times, it turns out better talking to others than the actual Doctor!

Motorbill66 - never tried sedative no, he has asked his Dr for sleeping tablets to help him but the Dr says it's not a good idea as they can become addictive. So he has just had to cope trying his best to sleep.
At the moment, due to the noise I mentioned across the road - he has to sleep in a different part of the house, with the radio on to drown out the humming noise. He's even used noise cancellation headphones and tried have a few whiskeys before bed! Although neither are the best of ideas.

Again - thank you all for the warm welcome hope to talk to you guys again!

 

[motorbill66]

Jen,

Xanax is not actually a sleeping med. It is generally used for anxiety. It sounds to me like there's a lot of anxiety involved here. Addiction has been absolutely no problem for me. I have used it for sleep because it also calms the mind and 'allows' sleep. On top of that it helps with seizures, for me anyway. I have added 1/2 gram to my regimen and have been seizure free for three months. I had been having 3-4 Gran Mals per month. Fingers are definitely crossed!

I take 300 milligrams of Lamictal, 300 milligrams of Lyrica, and at bedtime 1/2 gram of Xanax.

Of course your neurologist is the authority. If things aren't improving, heck, I'd get a second, or third, opinion.