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First Seizures at 30 now every night??

Thu, 02/26/2015 - 23:43

My husband had his first seizure in life about a month ago, and soon a following up 2nd one after 2 weeks.  Both episodes happened during sleep and were grand mal. He bit his tongue, rolled eyes.  the first one was in the early morning and second one was in midnight.  I witnessed both and were frightened.  called 911 and we went to ER for both times.  He woke up in the ER without knowing anything.  Did all CAT, MRI, EEG (twice) tests, everything normal.  

The weird thing is after the first time he had seizure, I started to notice his strange behaviors during sleep -- snoring, twiching, jerking in fingers and toes, picking nose and face, turning the body over and over, grinding teeth and making strange sounds.   This still happens now, every night.  i could hardly sleep because of that.    Doctor put him on Tegretol after the 2nd time.  We first got the generics (epitol) for three days, but he still moved a lot during sleep.  I called the doctor right away and he said it's because we were taking generics, which is different from Tegretol.  we had to switch the real brand name Tegretol.   

But now on Tegretol for about a week, the weird behaviors in sleep still happens, actually it's more frequent. Every 20-30 mins, he would stretch his arms and legs sometimes beginning with jerking in the body.   He likes to pick nose and face a lot, not sure if it's itchy or something, also scratching his sculp.    And his mouth/jaw twich as well in that make it like teeth ground but not exactly.  He sometimes groans for like 1-2 secs.   When he snores, the sound is really loud (he didn't do that before having seizure).  It always ended with a sudden stop, and his movement/jerking comes along after the stop.    Last night, he even had a seizure-like jerking in the whole body.  i feel like he is almost having a grand mal, but it last only 3 secs and he calmed down.    These things are happening all night, not in the beginning, not in the awakening.  Also he tends to be in deep deep sleep.  he cannot be waken up by any (loud) sound, touching, movement.  i tried to awaken him some times, but it always took long time for him to have reacton and his reaction was short and went back to sleep right away.  

I am freaking out now.  What should we do?  this is definitely not normal. Is this because of the Tegretol?  Doctor said since we've only taken it for a week, if the symptom is not getting worse, just keep it.  But it's hard for me to tell if the situation is worse or better at this pint because i cannot make the comparison!  For me, it's definitely more frequent over the night.  He's going to do a 72 hours EEG in 5 days. Should we wait till that time?  or should we call doctor again ( i feel like if we call him now, he would just change a medicine, which doesn't sounds like helpful and effective)?    What if he has another grand mal during this time?

Sorry for the long ane messy post.  Appreciate any help here.. 

Comments

WelcomeI read your post. I

Submitted by just_joe on Fri, 2015-02-27 - 10:32
WelcomeI read your post. I also see Merelodaed  commented. She is right about medications levels. A seizure medication is not like asperin. Take it and it stops.. NAAA like she said it takes time to get the levels up to the ammoount the doctors want. Which could be 2-4 weeks. Which is also the time it takes for your body to get used to the medicine. If he has side effects they to go away after the body gets used to it. The neurologist wants his to take name brand only. Which I know many do. I also know I have used all kinds of generics and had no problem with any of them. Don't blame the pharmiacy. written into Obamacare and other regulations your pharmavy is now required to give yo uthe generic if one is available. If the neurologist wants name brand only then his prescription needs to say just that. As for your freaking out. You do need to relax and be there for him. Have him take the medication as prescribed and both of you get some sleep. If he does have a grand mal seizure watch him. Read about what to do when you see someone in a grand mal. I had some. I was fine. I didn't go to the hospital. I was tired as wellll tired. I went to sleep after it and went to the doctor a few days later. If you are awake note the times he has seizures and what he does in them.  It may not seem like the medication is helping but like I posted it takes time to get levels set. If he has a reduction in the number of seizures it is working and the dosages may need to be increased. The 72 hour EEG will show them more then the 50 minute one will since he will generally be videoed at the same time. A 72 hour EEG is in a unit and they do watch you while yo uare there. If anything happens he is in the hospital already and they can take care of him. In those units you can visit him

Thank you for the detail

Submitted by lijiixn3216 on Mon, 2015-03-02 - 22:30
Thank you for the detail explanation!  That's much helpful!!  Appreciate that.. 

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