Newly diagnosed with Tonic-Clonic Seizures, kind of scared

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mhoover

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Hello,
I am new to the forum, and would like some insight. I have only had 3 seizures, although all 3 were pretty severe they were spread with 12 or more month intervals, with the most recent only a week ago. The first two were pretty much swept to the side, with no diagnosis or treatment after an emergency room visit for each. After my most recent episode last week, I was put on Dilantin in the hospital, and followed up with a neurologist who (just today) also precribed Keppra, with directiion to discontinue the Dilantin after tapering my doses for a few weeks. The Dilantin caused very low blood pressure, severe abnormal bleeding, and dizziness. After taking my first 500mg dose of Keppra today, on top of 200mg of Dilantin, I feel very strange. I would describe the feeling as an ecstasy state, or an out of body experience. I feel like I am sitting beside myself watching my own body do everything. Is this normal? Is it possibly due to the combination of the two medications? This medication switch and fairly new diagnosis is pretty scary. I have a 2 year old and a 1 year old and feeling like this really scares me, I am hoping it goes away after my dilantin levels taper off and the keppra takes over, but right now I am unsure of anything. Some advice and/or insight would really help right now, has anyone else experienced anything like this?
 
This could be do to the med change. They call that DP depersonalization. It also maybe you need to ramp up slower on the Keppra. Call the Dr. and let them know how you are feeling. You most like will few better in a couple days.
 
Welcome! Sorry to hear about the recurring seizure, but I hope the meds can control it. Those feelings of unreality or depersonalization can be caused by meds and can also be a result of the abnormal activity in your brain. Figuring out what is what can be a real balancing act, and it may take some time to get things settled out. I have partial seizures which are as well controlled as they will probably ever get, even though I still have a several hundred a year, and after over 30 years I'm still working with my neuro to balance meds, side-effects and seizures. All that said, though, I live a very active and normal life of which epilepsy is only a part. Just yesterday, however, I noticed some feelings of unreality starting to creep up, so I may have a sz cluster coming on. I never quite know.
I would strongly recommend that you start a journal where you list your daily med dosage, how you are feeling, (physically, mentally, emotionally), and time of day that you may have any small seizures or even flashes of abnormal feelings. That can be very helpful to you and your docs.
Finally, read up on meds and their side effects and don't be shy about telling your doctor if you are having unpleasant side-effects. There are a number of meds out there, and people react very differently to them. Stay in touch with us here, and best of luck to you!
 
Hi mhoover, welcome to CWE!

I think it's likely that the overlapping meds are messing with you, so if you can hang in there until the Dilantin is tapered down you may find your self feeling better. All the brain meds are powerful, so it's important to make amy changes very slowly and at small increments; even then, it can take a while for the brain to adjust.

Both Dilantin and Keppra are often the first meds prescribed for seizures, because you can get up to a working dose fairly quickly on them. But there are plenty of other meds out there. If you continue to experience side effects, ask your neurologist about other treatment options. As Arnie suggests, keeping a diary will help in tracking symptoms/side effects and gauging whether they may be related to meds, dosing changes, or seizure activity.

BTW, while many people are very happy with Keppra, some experience mood-related side effects, particularly anger ("kepprage"). Taking a B6 vitamin can help mitigate those side effects.

I hope you have some help while recovering from your latest seizure and adjusting to the meds. I know that the seizures can be hard on the mind as well as the body, and a new diagnosis is a lot to take in when you're not feeling your best or most alert.

Make sure you know how to contact your neurologist with any concerns or questions, and please feel free to post questions here as well.

Best,
Nakamova
 
I feel your pain

I am also new to this Epilepsy stuff and it scares me and makes me angry.
Your situation sounds a lot like mine, 28 months between the last episode and the most recent episode back on 12/21/12. The first 2 were swept aside as well, and first was misdiagnosed as heart complications resulting in a pacemaker implant oops. Now they put me on Dilantin and it took me 2 weeks to adjust to that med. Then last week the Dr. wanted to switch me to Keppra and I told her I don't know why I would want to change something that is working. I was told Keppra was a "cleaner" med so as of now I'm still on Dilantin 300mg only. She said give it a year or so to see how it goes, I took that as a lame way to treat a patient and have requested an appointment with a new Dr. I suggest you do as much research on your own and question the Dr. and even suggest options that you may want to try.
I have searched Dilantin vs Keppra and found some very interesting facts.
You are not alone with your feelings I hope you can get some comfort in knowing that.
 
Hi DavePlumber, welcome!

Dilantin is not less "clean" than Keppra, just older and cheaper. It's often the first anti-seizure med prescribed because it's fast-acting and relatively well-tolerated. Neurologists are less fond of it because it's not the newest, latest thing. It does have side effects, particularly for bone and gum health, so it's not always the best choice for long-term care.

Of course Keppra is no picnic either. Like Dilantin, it's fast-acting, which can be good. On the other hand, it's pretty well-known to cause mood-related side effects. It's possible though, that your neuro has had patients that responded well to it. Or maybe the Keppra sales rep took her out to lunch a few times. As you say, it can be helpful to do a little research so that you feel comfortable with your treatment choice and aware of the pros and cons.

With any anti-seizure med, there's no way to predict how an individual will respond in terms of seizure control and side effects. Dilantin or Keppra (or any of the anti-seizure meds) might be perfect for one person, and sucky for another. Some folks may need a high dose, some may need a low dose, some may need a combination of meds...

Anyway, I'm sorry you went through misdiagnosis -- and a pacemaker! -- and hope you're on the right track now.
 
Meds based on prescription pad

I agree 100% on the fact that Dr.s write perscriptions based on who gives them the most incentives. :agree:
 
Welcome to CWE,

I'm sorry your seizures came back. It is a scary time for you and with having two children only adds to your stress. Take a deep breath, you will be ok.
I hope you have someone with you, or someone you can call if needed.

I have been on about all the meds. out there. It has always taken a combo of meds. to have my seizures under control for the most part.
 
Here's the new twist to my puzzle, 500 mg of Dilantin was making me feel "Hung Over" most of the time so the Dr has perscribed Keppra to replace the Dilantin. What can I expect from the mixing of the two? And what experiences have others have making this change?
 
DavePlumber said:
Here's the new twist to my puzzle, 500 mg of Dilantin was making me feel "Hung Over" most of the time so the Dr has perscribed Keppra to replace the Dilantin. What can I expect from the mixing of the two? And what experiences have others have making this change?
Click to expand...

Have you had your Dilantin levels checked? I ask this because I too take Dilantin about 1 1/2 ago I went toxic on Dilantin because I went on a diet and exercise program and lost 40llbs.
 
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