Went to see Neuro and he changed prescription to Zonegran. Had been off all meds for a few weeks and had a rough time. Last weekend, after not being able to get in touch with me by phone, my dad called 911 and had the police stop by and check on me. Officer found me in the middle of a seizure on the kitchen floor and by the time the ambulance got me to the ER, I had had another. I don't remember much, but I was told that a had several back to back. Is this normal? Is my medicine not working? I am still feeling a bit out of it. Quite tired. Just wondering if it is the meds or me...

HOw much Zonegran are you on? Are you still going up to therapeutic dose? My son did have some harsher seizures when first starting with Zonegran and in the few days after going up. This settled down a week or so after the dose went up.

I am glad your dad had you checked on!!

call the neuro if you have not already. See if your dose is where it should be. I hope it will start working better for you.

Why were you off meds for awhile?

300 mg
my dr said that is the dose I am going to stay at.
I was off for about 3 weeks because my insurance lapsed and I could not afford anything.
I am pretty sure I had another seizure, I am feeling a bit wierd and woke up on the floor in my office about a half hour ago. I just don't know if the medicine is not right for me, or if I messed myself up when I went off all meds..
Neuro does not allow patients to call, must come from PCP...

Yikes- restricted phone calls.....guess call the PCP then. What if you're in the shower? Or cooking? Maybe have the PCP get home health to check on you a few times a week (and they also have 24 hour nurses on call in emergencies) until meds are stable. You don't need to go through this not knowing what's going to happen. I had home health last summer, and they were a godsend.

I am sorry you had another one. If you have only been on it a short time it might take longer at this dose to stabalize. Having that time off meds might have made it difficult as well.

Seems like it took 3 weeks to stabalize on a dose for my son.

It is possible this med is not going to be enough for you. Did you call the neuro? Ask him what he thinks about these breakthroughs....

Luckily, I can feel something coming on. I try to stay in a safe environment when I don't feel well, but then I can't go anywhere. My biggest fear is having a seizure in public... I had one in my driveway once, live on a major road. My PCP is supposed to call the neuro today. I think it may be time to get a new neuro and PCP. Neither seem to be very proactive when it comes to me. I have never had this many seizures before, is there any damage they are going to cause or do I just need to wait things out?
I will look in to home health... I am just scared I won't wake up. I don't want to scare my dad again, either... He is a fire fighter and has connections, or the police probably would not have come to check on me...
I suppose I would have been ok, but it is scary...

I had weight loss (drastic) on Zonegran, and that caused my Dilantin levels to shoot throught the roof, causing me to be unstable on my feet, and have vision problems. I needed a cane in fact until we figured out what the problem was.

So check your weight and see if that has remained the same or if there has been a change possibly caused by Z.

I fell a few times, and after that I moved in with my folks for safety until I could get in with the Dr for the safety reason. Not being able to WALK without assistance (drunk like symptoms) is not good in a crampted apartment.

First step my doc took was dropping Z 100mg (I had just bumped up to 300; destination goal was 400), and have me check in one week later (no improvement). Then he removed Z **fast** as in told me to stop it; no slow taper. Problems still existed 5 days later; so we knew it was something else; but Zonegran was the newest thing to my system.

When it was noted I lost 20% of body weight that was the shocker. That was within less than a month. It also explained why Dilantin levels were elevated (mid 20's); and dropping the 50mg was all that was needed to remedy the symptoms.

I switched to a SIMILAR drug to Zonegran, Topamax about 3-4 months following. Topa has been working better, but to avoid potential problems I cross dropped Dilantin when starting up on Topamax (so no Dilantin now).

--Travis

I was on Topomax before, maybe three years ago and gained about 40 pounds in two months. I totally freaked out, I had been a bean pole my whole life, so they switched to Dilantin...
I am hoping my PCP will get on the ball and call my neuro so I can get this straightened out. I have not had a seizure free day in way too long. I can only work a few hours a day if that, depending on when I get to feeling weird. I think I need to look into a new PCP, he is not explaining anything to me, and gets really mad when I look things up on the internet. I only do it for peace of mind and to try to answer questions. But when I ask him questions, he gets a little pissy... I can learn to live with this, but I have bumped my head and bitten my tongue so many times in the last month, I don't think either will recover... I look like someone beats me up on a regular basis, which scares the heck out of me!
One question, when do you NEED to go to the ER after a seizure. I always call my PCP, but he usually tells me not to over react and to take a nap or something. I hate going to the ER, but I don't want to do anymore damage to my body than I already have done...

ER after seizures is judgement call.

If an injury has occured that you feel needs attention.
If seizures are cluster (one after another); if thats not normal for you (and last longer that you are comfortable with).
If you don't "feel" right after your typical recovery time
If your seizure symptoms are not typical and concern you go in
or
the textbook If the person has breathing problems during/after the seizure or if the person requests medical attention

Usually I don't go in, or refused medical attention or transport to hospital after seizures.

Rarely I DID call, due to recovery taking a long time and it just didn't feel corrrect (glad I did; one of my levels was very low).

Like I said; it's a judgement call if you should go in or not. YOU know how long your recovery usually takes, thats why the patient is usually the better judge than the EMT's who will push for "better safe than sorry".

Remember, typically hospital ER's will administer a high dose of medications for seizure patients, and hand us an amazingly costly bill. Thats the other reason to only go in when needed.

--Travis

P.S.
You can call some form of the Nurse Call Lines and ask opinions if the hospital could do anything beneficial if you were to arrive at the hospital. Not all of them will help (one told me to show up and offered no help; I called a different # and was able to get the advice I needed).

Mind you post seizure our minds tend to be fuzzy so conduct this call before a seizure and see what you recieve for a reply.

Thanks Travis...
I do hate going to the ER, especially because after the tons of crap they give me, it is several days before I can get out of bed... I tend to have really wierd reactions to medicines, sometimes like morphine, they can pump me full of it and I just get aggitated...then about 24 hours later I am a complete zombie... I researched it and I think I am missing some enzyme or something so meds metabolize different... If I do go to the ER, I usually feel like someone put a bunch of those little bouncy balls in my head and they won't stop bouncing... I know the EMTs always want me to go, but I would much rather crawl back in bed and try to forget about it...
I do wonder lately, none of the seizures are normal...
I had two yesterday, one the day before... whacked my head on my bathroom sink, didn't feel that one coming... so today, I will try to stay out of my small bathroom and stay on the couch...
My PCP called first thing this morning and said not to worry about it, which is easier for him to say... he is not waking up on the floor with a big gash on his head...