Hello Again, switching from Keppra to Dilantin. Scared

[ribs1]

Hello Everyone,
I am back again. I posted a few years ago after my first seizure.
I did pretty good for a while but not so good lately.

I had another seizure about 4 months ago. All 3 of my seizures have been tonic clonic and have happened at night.
Dr. doubled my dose of Keppra to 2000mg day and I went crazy (not kidding. Anxiety, Depression, possible psychosis) It took a while to realize how much trouble I was having from the Keppra. Finally, I called the Doc and he decided to switch to Lamictal. During the tapering process, I got much, much worse and ended up in the psych ward at the hospital. Lamictal was the worst drug I have ever been on even at low dose.

Anyway, for a while I went back down to 1000mg a day of Keppra just to get stable. I don't want to have another seizure and I think this dose is still causing me some trouble. The Dr. said the next option is Dilantin. Because of my oversensitivity to psychiatric side effects, the Dr. says Dilantin is probably the best option for me. I've done lots of research and understand most of the long term effects of Dilantin and right now, I am not worried about that. I would rather deal with that later and just get stable for now.

Anyway, I will take the Dilantin tonight. I am wondering if anyone can give me their experience with the start up and short term side effects. I just would like to know what I am in for. I will start at 200mg tonight and take that for a week while going down on Keppra. Target is 300mg Dilantin depending on blood test results and such.

1. Will this cause insomnia?
2. Should I plan to stay home from work for a few days because of start up side effects?

Any other comments about start up and short term side effects?
Thanks

Paul

 

[Nakamova]

Hi Paul --

Dilantin was the very first med I was put on. The loading dose I was given was way too high, so I at first I had side effects from overmedication -- fuzzyheadedness, balance issues and nystagmus (where your eyes dart from side to side). But once the dose was reduced the main side effect I experienced was mild sleepiness and slightly dry eyes. I found that an evening dose worked best. I had no problems with seizure control and my dose was relatively low (200mg/day). Make sure you're getting the brand form of Dilantin -- apparently it maintains more stable blood levels than the generic.

Eventually I did start to experience gum overgrowth due to the Dilantin, and because of that and the risk of bone loss I changed to other meds. Make sure you go the dentist every 6 months while you're on Dilantin -- good preventive care can help with the gum issues.

Everyone's different, so It's hard to predict what side effects you may experience while transitioning from the Keppra to Dilantin. Transitions can be hard on the brain, so it never hurts to play it safe and stay home while you're making the switch.

Good luck! And let us know how it goes.

 

[jenbayly17]

Ribs1
I just changed from dilantin to keppra. Being on both at the same time for me caused the insomnia and tremors when I started my process of change. I had the unstable feeling pretty consistently through my process until I was on keppra alone. Depending on your job and what you do I would recommend time off if you are having anxiety problems that I experienced. I don't tell you this to scare you but being off work I think made my change in medicine much easier, even if I had side effects. My change was over a 6 week period. Please come back to this site throughout your process and let everyone know how you are. Good luck.

 

[ribs1]

Thanks for the info guys.
Really the only thing I am worried about right now are
1. Possibility of insomnia. When I don't sleep well, I react much worse than most people.

2. Psychiatric side effects. Keppra caused me to be so crazy that I was admitted to the psych ward. It doesn't seem like Dilantin causes this though.

Just wondering, jenbayly17, why did you get off Dilantin and onto Keppra?
Also, Nakamova, are you still on Dilantin?

Thanks

 

[Nakamova]

No I switched off of Dilantin because of it caused gum overgrowth and because of the potential for bone loss. No problems with insomnia or psychiatric side effects.

 

[ribs1]

Nakamova,
Thanks for the reply,
I'll take the gum overgrowth over the crazies. I have a good dentist, and at this point I would rather end up with dentures in the future, then end up back in the psych ward.

 

[Dolores]

For what it's worth, I've been on Dilantin for 40+ years. It has controlled my seizures and allowed me to live my life. I'm sure I have some side effects but I've been on it for so long that I don't really know what is normal and what is caused by the Dilantin. Nothing is really horrible though.

I did finally find a really great doctor who talks "to me" not "at me" and we discuss my dosages and any problems I might have. My biggest issue is that my Dilantin levels have a tendency to spike every few years (haven't determined the reason) so any side-effects are amplified. Easy to identify with a blood test and correct with a change in dosage. Because of this I keep a diary of my Dilantin levels and the dosages I was on at the time. (I also take name brand Dilantin to help with this.)

As for gum overgrowth, I highly recommend an electric toothbrush. I had gum surgery as a teenager. That helped a lot but my gums would still bleed when I went for a cleaning. Then the hygienist suggested an electric toothbrush. My gums have been fine ever since.

I've also stopped drinking alcohol - which I assume one should do with any AED. My friends understand so it's really no big deal.

Hope you have a good experience in the switch.

 

[ribs1]

Thanks for the encouraging words Dolores,
I have an electric toothbrush now. I am very fortunate to have a very good dentist. My dentist happens to be one of my clients (I work on his computer systems, and digital xray equipment)
I consulted with him a few days ago and he said he has seen lots of patients on Dilantin over the years. He recommended to me that we go to 3 cleanings a year instead of 2 and we'll keep an eye on the gums.

I just took my dose. Getting ready for bed pretty soon. Hope all goes well.
Just tough to deal with after the fiasco of the high Keppra dose and trying to switch to Lamictal. After my experience, I can't believe anyone actually does fine on either of those meds, but I guess we are all different.

Thanks again everyone. This seems like a wonderful community.

 

[jenbayly17]

Ribs1
I was only on dilantin for about a total of a month and a half I was put on it after my sodium started going so low with the tegretol xr I was previously taking I was in the hospital and the ER Dr prescribed that but I had fewer hours of sleep each night when I was in the first 2 weeks and an anxiety attack (which I had never experienced) because of my Dr that had me on tegretol xr and basically refused to believe the epilepsy medicine had anything to do with it I got a new doctor that with the multiple side effects I was having wanted me to change to keppra. I just had my 1st day of work after being off for about 6 weeks. It went alright. I just had too much anxiety to do customer service over the phone during the time of getting the anxiety and sleeping back in order. I hope you are already fast asleep. Keep us posted.
:tup:

 

[ribs1]

Well,
Nothing really bad happened so far. It was a strange night.
I was fortunate that I slept OK. I was up a few times, but stayed calm.
I am pretty tired right now but I think things will be OK.

I had some pretty strange dreams but I guess that was OK too.

Overall it was harder to fall asleep and I woke up earlier than normal.
Hopefully it won't take long to get used to this med.

I don't really feel rested but at least I wasn't up all night which is what I was mostly worried about

Thanks everyone.

 

[ribs1]

Hello,
Just reporting back. Today was a tough day. Dilantin made me feel dizzy and lightheaded all day. Difficulty concentrating.

I hope to god that this is just start up side effects and will pass in a few days.
Thanks

 

[Nakamova]

Hang in there, it may take a few days for your brain to get used to the Dilantin. Are you taking it in the morning or in the evening?

 

[ribs1]

Hi Nakamova and everyone else. Thanks for the encouraging words.
This is really tough, but so far it is manageable (barely)
After my experience with Lamictal, I am very scared of this.

The nice thing about Dilantin is you can go up and down a lot quicker than with Lamictal.

I actually feel really good right now at this moment, but the day was a roller coaster.

I will be really relieved if I feel even 10% better tomorrow.

Will I really get used to this?
Thanks

 

[ribs1]

BTW,
I am taking 200mg phenytoin ex before bedtime.
I guess this is the extended release version.

 

[jenbayly17]

The dizzy thing is what I felt first when I started dilantin so hang in there. Rollercoaster is what I just recently went through but I am two days in of being back to my job. Just continue to talk about how you feel here and with people that are with you frequently so we can all help you with any emotions that arise. :hugs:

 

[ribs1]

Getting ready for bed and just took my dose.
Feeling tired and hoping to sleep well.

I am really trying to have a positive outlook. If tomorrow shows even slight improvement in side effects I will consider it a victory.
I am really glad I found this place.

 

[Dolores]

Be sure to keep a diary of how you are feeling - dizzy, balance problems etc - as I personally know that these are side effects of too high a dose. And if you keep track of your blood levels you can determine which level is best for you. I like to stay at about 16 but I know many here are much lower - everyone is different.

Since you are in that period of switching from your old medicine to Dilantin, it may take awhile for your brain to adjust to the change.

You seem to have a great outlook and that is so very important.
I do hope it all works out well for you and do keep us posted!

(And yes, CWE is a really great place to be!)

 

[ribs1]

Hello,
Slept a little better last night.
I feel pretty funny this morning.

Is it possible that this will totally pass and I will feel normal for a while?

Also, do people sleep well on Dilantin?
I slept OK, but I don't really feel rested. Also, I wanted to sleep in today, but I couldn't fall back asleep at about 6:30 this morning.

 

[ribs1]

Hello Again,
Thanks to everyone for listening to me and allowing to post this sort of Journal.
I think this might be helping.

Anyway, this is just an update.
I would say I have done only slightly better today than yesterday. I guess I have to take the positives where I can. Mental fog, tiredness and trouble concentrating are tough.

I guess I have to thank god that at least so far this is not nearly as bad as when I went on Lamictal.

It is hard for me to accept that this might be my new normal.

 

[Nakamova]

I usually say give it at least two weeks if you can. When I went on Lamictal, I had side effects the first two months that went away after that time.

These brain meds are powerful! It just takes awhile for your system to recalibrate. I hope you continue to feel a bit better every day.