Update med changing to Lamictal

[mooselips]

Hi all,
Hopefully you all kind of know the travailing story of my husband who was diagnosed with Temporal Lobe Epilepsy last November, and prescribed 100mg. Dilantin 3 X a day.
Up til then, he had 2 seizures. Well, he had another April 6th, while we were in Florida. They, (the family Dr. in Ohio) readjusted his Dilantin and he ended up on 500mg. a day. Since that increase, he has been extremely confused, somewhat agitated, and off balance. His level on April 29th was 22.7
He was to have another level this coming Tuesday.

Well, we are back home in Ohio now, and he had his first visit with his NEW Neurologist at the Cleveland Clinic. He is slowly over a period of 12 weeks being weaned from Dilantin, and starting Lamictal, and when finished weaning, will be on 200mg. Lamictal twice a day.

Our new Neurologist was very kind, understanding, and compassionate. Way far better than what we have dealt with before. He said he dislikes meds where you have to worry about a level all the time, he says it becomes a compulsion of worry.

Okay, couple of questions here.
The Neurologist reviewed my hubbys MRI and MRA of his brain, and saw a spot in the Medial Temporal Lobe, the hippocampus, which seems there is a small "hole" there, which the Dr. said could be from my husbands original injury of 1970.

He also said if this medication doesn't work, surgery will be a consideration.

Anybody on Lamictal?
Is it controlling your seizures well?
Side effects?
Any ideas regarding the "hole"?

Thank you all,

Gary's wife...

 

[tinasmom]

Glad to hear you like the new neuro. It sure makes life easier when you have a doctor that you really like. My granddaughter is on Lamictal and has been seizure free since she started on it. We have been reducing her dosage because we noticed some behavior problems, she is 6. I know that you do have to watch for a rash.

 

[RobinN]

My daughter had EXTREME muscle ache and began to have a fever, so the doctor too her off. Rebecca is now med free, with an increase in magnesium (1000 mg), Omega fish oil (2000 mg) and a few other supplements listed in her story below. She is also controlled so far, following neurofeedback.

 

[mooselips]

Thanks Robin and Tinas mom...
He's being EVER so slowly weaned off and onto the Lamictal, so time will tell it will take 15 weeks before he's completely off the Dilantin.
I am praying this works for him.

I do have another question to you and family members:
How do you ever stop being scared?

Since the seizure in the middle of the night when we were in bed, just about scared the pants off me.
Now every time he moves at night, my heart races.
I am not sleeping well.
Hate to move to another bedroom, don't want to let him know I'm so frightened for him. And the he's think he's really SICK. If you know what I mean.

I do have a tranquilizer, but scared to take it, don't want to be groggy if something should occur.

Does the being scared go away after time?


HELP.

(p.s. I realize it's NOT about me.)

 

[skillefer]

My hubby faced that feeling of fear. He said I've scared him a couple of times having seizures. But, after a while, he's gotten used to them. He knows what to do if I have one, and he realizes that worrying about me all the time isn't going to stop them from happening. But, he does still worry. We have nextel phones....and if he chirps me and I don't answer he panics. But, other than that, he handles it like a trooper.

 

[mooselips]

Yes, we now have 2 phones, also.
Not that he's going anywhere without me for awhile...


I don't like to think that it's something I'll get USED to.
Like I'll become lackadaisical. His seizures are so infrequent, (it's a good thing.)

I'm just going to do my best.
Thank you for your input.

 

[RobinN]

For me the FEAR has gone away. Though Rebecca does not have hers at night. My fear was she would be away from me. That she might have one while walking down the stairs at school.

I have given that fear up to a higher power. She might get a bump on the head every now and then, but she will be protected, and cared for by others. I believe that.

You can rest, because you will know if something were to happen. Instinct is a very powerful energy. Rest and know that someone will tap you on the shoulder and tell you that you are needed.
http://www.epilepsy.com/101/ep101_death

This is at least a condition that you know about. Many people aren't lucky enough to have a warning. I personally would try to do it without a tranquilizer. There are some great relaxation recommendations if you do a search here at CWE.

 

[mooselips]

I have a higher power I'm relying on too.

I know it's silly to be apprehensive.
Also, I'm a R.N. and heaven knows I have dealt with many a seizure in the hospital, but gee when it's one of yours it's effects your heart if you know what I mean.

(Not that I didn't have great compassion when at the hospital someone had a seizure, mind you.)

I called the police Dept. here today, and they said paramedics would respond without any cost, so that makes me feel better, since he may need O2.
So that's a good support system nearby, we live in a tiny town.

Thanks Robin...

 

[RobinN]

I have a higher power I'm relying on too.

I know it's silly to be apprehensive.
Also, I'm a R.N. and heaven knows I have dealt with many a seizure in the hospital, but gee when it's one of yours it's effects your heart if you know what I mean.

Nothing is silly about this disorder. Put that out of your mind. It is quite natural, what you feel. I think the more I learned the more I was able to relax and rely on my personal instincts and understand how the puzzle pieces were fitting together.

I called the police Dept. here today, and they said paramedics would respond without any cost, so that makes me feel better, since he may need O2.
So that's a good support system nearby, we live in a tiny town.

Thanks Robin...

You are lucky. Our bill came to us before the insurance paid it, and just for the EMTs to show up was $1000. I am always reassured that I can call as many times as is needed. I am also able to sign a waiver that releases them from liability, if I did not want Rebecca transported to the ER. Sometimes just knowing that all of the initial testing was coming back normal. I could look in her eyes and know that it was her typical seizure, and that it wasn't necessary for a ER doctor to check her out.

Reminds me that some good homemade cookies need to be taken to the Fire Station.

 

[mooselips]

There is a cost to be transported to the hospital, but hopefully, if a seizure occurs, it will not be needed.
The Neurologist left it up to me, actually.
And I do have a Durable Health Power of Attorney, so I can speak for him.

And homemade cookies do sound good, don't they?
(Just hoping and praying I don't have to bake...anytime soon.

I think what is scaring me is that his medication is being changed.
I was quite happy when his Dilantin level was between 10 and 20, felt somewhat secure. Although it was a bummer when it dropped to 3.3 with no apparent reason.
Now with this weaning, although it will take a LONG time, it is the fear of the unknown.

I'm praying and sure it'll all turn out just like my H.P. wants it to be.

 

[tinasmom]

Mooselips-

I don't think the fear will ever go away for me. My daughter died Aug. 2006 from a seizure and I am raising my granddaughter, Nicole. The first time I saw Nicole have a seizure, July 4, 2007, my heart sank. I was hoping she didn't inherit this. We have safety pillow for her and a baby video monitor. When we first hooked up the monitor, I jumped with every sound. I don't think that it is fear as much as it is being more aware.

I think that there is always worry when meds are changed in any way. You're just waiting for that seizure to come and hopefully you will not see any seizures. I will keep you and your family in my prayers.

 

[mooselips]

Thanks Tinasmom,
My heart goes out to you for your loss.
Your granddaughter is a very lucky lady to have you as her grandmom.

 

[hawke86]

Lamictal is very good medicine.

 

[mooselips]

I'm sure hoping and praying that's true for Gary.

 

[alivenwell]

Lamictal is excellent for me. I also take 200mg twice a day. It spans the entire day. I have to be extremely systematic about when I take it. Going off a schedule is not something to do. I'm probably obsessive compulsive about it, but that's probably a good thing.

I know it's used for depression as well as epilepsy.

Lamictal made a huge, huge difference for me. I was told that one of my drugs went in and out of my system quickly, but the lamictal was a slower released medication and 'took over' when the other med was at a low level. It's kind of like a security blanket for me.

 

[mooselips]

Thank you.

Could you tell me what times of day you take it?

I only ask, because as of now, he is on 12.5 mg. with 400mg. Dilantin every night at bedtime. Does it make a difference if bedtime varies between 10 p.m. and 12 a.m.?

I kind of reminded him to take it at 100 p.m. last night.
I'd be very vigilant about taking it pretty close to the same time.
But that's what I'm asking.
Is a 2 hour difference a problem?

 

[alivenwell]

I take Lamictal (200mg) first thing in the morning at 9:00AM with a dosage of Mysoline at the same time (250mg). I take another Mysoline (same dosage).

My 2nd Lamictal (200mg) is taken at 5:00PM. I set alarms on my cell phone and watch as reminders when I am really busy. Or, I use my PC to send me reminders.

I have fallen asleep at bedtime when I am supposed to take Mysoline (350mg). I usually wake up at 3am under that situation. As a rule, I live by a 6 hour minimum time interval between the 3am and next day's morning dosage. That brings me back to my 9am interval.

Mysoline metabolizes into phenobarbital and makes it difficult to wake up if I take it around 3am, so I try to take that around 11pm or midnight at the latest.

I also find walking my dog a very stress-relieving activity. We play a lot as well. Music is my other relaxation and interest. I personally find I am under less stress if I am also more busy. Employment has actually been very good for me other than simple health benefits.

 

[mooselips]

Thank you.


I am noticing, and I think he is too, a change in his "mood"

Since the last seizure, he is forgetful, off balance, and agitated at times, (I call it arky-Barky) and extremely tired all the time.

I thought, probably mistakenly, that it was a result of the high level of Dilantin. Now, I'm thinking I was wrong, that perhaps it was/is caused by the last seizure. Which was April 6th.

He's also terribly depressed, which is quite understandable, considering he just had 2 total knee surgeries, and now was ready to start moving without pain.

He will be seeing a Epilepsy Pychiatrist, since his Neurologist recommended it, and I think I will call Monday to get that appt. A.S.A.P. They are suppose to call us to schedule it, but I think I'll make the call, and perhaps speed things up a bit.

Good grief.

 

[alivenwell]

Some people in here claim excessive pain can trigger seizures. If that knee surgery was (or still is) painful, it may be causing stress or seizures. I've never noticed the pain connection myself with seizures.

It's smart to get counseling. This is just so incredibly frustrating to say the least. And, it's a catch-22. If we get stressed out about the epilepsy, the stress will probably cause a seizure. Then that seizure reinforces a helpless feeling which leads to stress.
And the whole cycle starts all over again!

I really try to practice stress management in every way possible. Maybe a set of weights to lift while sitting would help him manage his stress if he gets an OK from his doctor? If it's OK, I'd start him with small/light ones. Or have him practice meditation.
That sounds totally far out, but some people say it works.

RobinN claims neurofeedback is making a tremendous difference with her daughter Rebecca. She and Bernard are heavily into adding various vitamins or maintaining specific diets.

There are books out there that claim artificial sweeteners are seizure triggers. I'm not sure what your husband eats, but it might be worth researching.

 

[mooselips]

He did ride his bike (it's on a special thing so the back wheel is up) in the basement for about 45 minutes this a.m.
and went for a walk.

He doesn't really have any hobbies other than Geocaching, and now he can't do that because of no driving.
This time of year we're generally up in Canada, so he's normally raking leaves, trimming trees, taking care of the boat and putzing around up there at the cottage. But now that's out of the question for now cause the cattage is on an island, and we had to deal with a seizure last Summer, (that's when it all started) and their health care way up North leaves alot to be desired.

So..I'm sure that's grating on his mind too.

As for biofeedback, I'm not really sure if his personality would really fit with a meditation/biofeedback kind of experience. But, to me, anything is worth a try.

Thanks again.