Hello Again, switching from Keppra to Dilantin. Scared

[ribs1]

Hi Nakamova,
I will plan to give it more time.
I just want to feel normal.
It has been a tough ride. The funny thing is, I have only had 3 seizures and they have been a year apart. Often, I just want to go off these drugs, quit driving and move close to the bus stop.

I know there are a lot of people on here in much worse shape than me.
The only thing I really have to deal with is the side effects. Many others are dealing with side effects AND trying to get frequent seizures under control.

This message board has been a real comfort. I have searched many posts and read a lot about Dilantin. It seems most people are worried about the long term side effects and have little problems in the short term.

 

[jyearta]

I have been on Dilantin for around 40 years.

Dr. have tried me on all the other meds. I either had seizures, are the side effects were unbearable. Quality of life means a lot.

The long term side effects I'm having is feeling in my hands and feet come & go.
I have some trouble with my gate.
I am B-12 deficient.

I am very sensitive to most meds. I have my Vit. B6, B12, D, Folic acid, calicum compounded.

 

[jenbayly17]

With my recent change in medicine the side effects stuck around for 5 weeks and the sixth week I didn't notice them as much. But I have very little of the side effects at this point and have just dizziness a little I sit a while and stand up to quickly. Hang in there.

 

[Janus]

Ribs1, I completely relate. I have been doing some experimenting with med changes lately and it is so comforting to have this site.
PS. I think it is non sequitur to downplay your situation "comparing" to others'. By that i mean your story is your story and it is not fair to you or anyone else to imply that "some have it really hard on here". I know my situation may look easy on the outside to some, but many are shocked when they get to know me and see how hard a seizure life can be when they have never seen it before.
Best of luck with the side effects or lack there of and treatment of seizures with the med changes etc. It is good to keep hearing from you and your experiences.

 

[ribs1]

Thanks everyone,
It's 10pm and I feel great right now. This is not out of the ordinary for me the last few days though. I always feel better in the evening.

I sure hope I can tough this out. I guess I just have to take it one day at a time and try to remember the little victories.

Overall I guess today was 1% better than yesterday. Not too great but that's something to build on.

 

[ribs1]

Getting ready for bed. Just about to take my meds.
Hopefully side effects will subside a little more.
One of these days I hope to spend most of the day not worrying about this, or even better not even noticing the meds.

One can only hope.

Hopefully my experience will help others. These meds really are not joke.

 

[ribs1]

Hello,
I had a bit of a breakdown this morning.
I have been in such bad shape for months from all these med changes that I can barely take care of my kids.
My wife is starting to lose patience with me.
My mom is staying with us to help.
I am scared that i will not get used to Dilantin and I'll just have to go off meds and hope for best.

Do I really need to be on these meds when I only have nocturnal seizures and I've only have 3 (all tonic clonic)

 

[Nakamova]

Do I really need to be on these meds when I only have nocturnal seizures and I've only have 3 (all tonic clonic)

It's a tough call -- you need to balance the risk of having a seizure against the benefits of not being medicated. Like you I have tonic-clonics. I tried going off meds twice (supervised by my neuro), with no luck. And the second time, I started having seizures closer and closer together -- one every 3 months, then one every two months, then one every month -- and I knew I had to go back on the meds. So there's also the risk that your seizures will escalate.

If you want to be med-free, the doctors can't force you to take medication. But if you decide to taper off, do everything you can to be proactive in avoiding triggers and stresses. And don't drive, or get into situations where you might put yourself or others at risk.

 

[ribs1]

Nakamova,
Were your seizures only at night?

 

[Nakamova]

No, the initial ones were during the day. But then I started having them at night too. Seizures can change over time...

 

[ribs1]

Well,
New plan. I had an appointment with the neuro in a few weeks. They had a cancellation and called today with an opening.

My wife came with me because I haven't been thinking clearly for a while.
We talked with the Doc for a while this time and he really listened.

Here's the results.
1. We are going off all meds. I am stopping Dilantin tonight and finishing my taper of Keppra over the next week.
2. We told the Doctor that we were not worried about nocturnal seizures especially since they have been a year apart. My wife told him that the problems I have had with these meds are far worse then dealing with 1 nocturnal seizure a year.
3. Dr. said given my history it is very unlikely that my seizures would happen during the day. He came to this conclusion based on these factors.
a. All 3 of my seizures happened at night.
b. All 3 of my seizures happened within an hour of falling asleep leading him to believe that they are caused by sleep starts turning into seizures.
c. I had a recent MRI which was clear
d. EEG showed nothing

Doctor said not to drive for 3 days. After that no problem.

Hopefully this won't be a disaster.

 

[Nakamova]

Congrats! It may take a little while for the meds to get fully out of your system, but after that you should start feeling "like your old self." You might consider taking a magnesium supplement after dinner/before bed -- it help with sleep and protecting the brain.

 

[jyearta]

Hello,


Also, do people sleep well on Dilantin?

Dilantin does help me sleep better, some of the other meds. caused insomnia for me.

I can not tolerate the generic of Dilantin. I'm saying this in case this could be a issue for you also.

Has your Dr. ordered for your level to be checked.

High levels of Dilantin will have the same effect as if your are drunk.
I am not trying to scare you in any way, I learned this the hard way.

Like someone before me said we all react diff. and each of us as. level that is best for them.

:hugs:

 

[jenbayly17]

Ribs1
Glad to hear that your doctor is listening to your concerns and working with you. I hope all goes well with tapering off both meds. Please keep up the journal type messages you have been doing here. We are here for you to get the support you need and it will be a good resource for you to go back to as well if your doctor asks for a daily record. Good luck and stay in touch. :woot:

 

[ribs1]

jenbayly17,
Thanks for the encouraging words. This online journaling is really helping me to deal with all these changes.
Also, knowing that my experience might help someone else is really comforting too.
Thanks all

I'll post again tomorrow morning.

 

[ribs1]

Well,
Things have gotten a lot worse. I probably shouldn't have made another change while not entirely stable.

My wife and I now have a pretty good plan for now. She is going to take over managing my meds for a while. I have still not recovered from the Keppra fiasco.

Going on another med and then going off while not emotionally stable was not a good idea.

I went off the Dilantin last night and have felt terrible all day.
I am not well and don't know what to do.

 

[Nakamova]

Med transitions are hard on the brain. It may take a few days, but you should start to feel better as your system adjusts. Hang in there.

 

[ribs1]

Thanks so much.
For some reason they seem to be much harder on my brain then others.
Right now the plan is to try and ride this out and keep close to family as much as possible.

 

[ribs1]

Thanks everyone. It is very strange that these things seem to come in waves.
Sometimes it's like I can actually feel the drugs pulsing through the veins in the front of my brain. It's also strange that the highs and lows seem so exaggerated.

Today was the worst day so far in the 4 months of trying different meds, however, I feel really good right now and for about the last 2 hours.

It's also so funny to ask doctors about likely side effects when going up or down on meds. My doctor said I might get a little nausea from going off Dilantin. He didn't say anything about an all day debilitating headache, difficulty concentrating, fogginess, feeling drunk or anything else.

Oh well, we gotta take the little victories when we can. I did feel good for about the last 2 hours and now I'm looking forward to going to bed.
Tomorrow is another day.

 

[jenbayly17]

Ribs1
I know what you mean about asking doctors about side effects. My doctor who was very responsive to my concerns when they would come up, basically told me the same thing to start about their being few if any side effects. But my theory was he probably didn't give me the laundry list of things that could happen because we are all different and have different reactions. And plus if we knew what would happen before it happens their May be a few of us that wouldn't end up on the medicine that actually works best for us if we were fixed on the fears of the side effects from adjusting to it for a few weeks or months. But keep your head up and as I saw in one of your previous posts keep close to family and don't be afraid to ask for help.