Looking for information

[DestinyRules]

I hope this is a friendly forum as I have been to some forums that will attack anyone who comes in asking questions.

But here goes:

My adult daughter takes Dilantin and Topamax for seizures. Her first seizures came about 6 months to a year after a car accident where she hit her head on the windshield.

My quest for information is regarding the symptoms of after a seizure, or more of the "behaviors" after a seizure.

My daughter slurs, staggers when walking, is disoriented and confused and even delusional. She's very restless and won't sit still, constantly getting up to stagger around. She seems to always imagine there's someplace she needs to go and is determined to get there. Her thoughts and speech are fragmented. For example, she may state she has to get to town to buy a tag for her car, when the car is already tagged and isn't due. Most of the time she doesn't make much sense with the things she says and most of what she says is random. She thinks I've said something I didn't and has even accused me of stealing. This can go on for several hours. What ends up happening is she will eventually lay down and go to sleep for a couple hours and when she does, she wakes up with a headache, but is otherwise normal again.

I can't find any information to discover is this is seizure related or something else. Can someone shed some light or direct me for more information?

Thanks!
Cindie

 

[RobinN]

Hi Cindie - I think you have found yourself a forum that is very friendly and a safe place to ask questions. We will attempt to answer most questions unless it is of the variety that only a medical doctor can answer.

Your daughters post ictal state seems to be fairly common from what I have read. However, my daughter does not have these same issues, she does need to rest and sleep following a seizure. If I had to guess, I would think that the medication might possibly play a roll in her behavior, but that is only a guess. When Rebecca was on meds, her side effects were quite unusual, and changed with each med that we tried. She is now med free, and lately her seizure threshold is improving with each day.
Nutrition plays a huge role in healing my daughter of all symptoms.

So to answer your question, I believe your daughters symptoms are seizure related. I can only guess how frustrating this is to monitor. It is hard enough to deal with someone that is coherent, let alone one that is not making any sense. I suggest that this be brought up with her doctor and perhaps there can be an adjustment to her medication.

If I might also add... neurofeedback is proving to be an effective treatment for many with head injuries. You might look into this type of therapy. It can be helpful for some, so that they can reduce their medication, and for some eliminate it.

Fish Oil is also a necessary supplement for brain health.

 

[Nakamova]

Hi Cindie --

Do you know what part of your daughter's brain was injured in the car accident? Injuries to certain areas are more likely to lead to seizures or behaviors associated with memory, language, moods, etc. What you describe does sound like complex partial seizures, though it could also be related to other kinds of damage from the accident. Her medications may also be playing a role -- Dilantin is known to cause clumsiness and staggering, and Topomax can cause confusion and sluggishness as well. Your daughter may be overmedicated. I recommend that you keep detailed notes about when these episodes are happening, and discuss them with your daughter's doctor to see if her treatment needs to be adjusted. In addition, see if you can find anything that may be triggering the symptoms -- are they occurring at a particular time of day or of the month? Do certain foods or activities play a role? Is your daughter getting enough sleep? Helping her cope can involve a proactive approach that looks at a number of factors thay may be affecting her quality of life as well as lowering her seizure threshold.

This forum is a great place for information and support. I hope you feel free search past posts, and ask questions as needed.

Best,
Nakamova

 

[epileric]

Welcome Cindie

RobinN is right about this place, no need to worry about being attacked for asking questions here.

What you described in your daughter describes how I can feel after one of my larger seizures. After the larger ones I have trouble talking, am a bit confused, vertigos, I've been told I babble or just don't make sense though I thought I just said something that did make sense, other times I just can't talk- I just can't remember any words. Along with that my emotions do go wild.

Try going to the top of the page on this site & using the search option (3rd from the Right) for post-ictal to find what other people have to say.

 

[DestinyRules]

Thanks everyone, you've been really helpful. My daughter needs to come here so she can see there are kindred spirits in the world and I told her that.

No, I don't know what part of the brain is affected. She didn't go to the hospital after the car wreck. Once, a doctor did some tests on her but they weren't able to initiate a seizure during their testing and really didn't find out much.

My belief is that she is under medicated right now and has had 2 seizures, a week apart. There have been several adjustments to her Topamax over the past few months. We had titrated her dosage up and she ended up in th4 hospital with severe stomach pain. It was after she was released that another doctor I know, after being given a quick history on her, diagnosed that the Topamax could be the source of her pain. I immediately reduced the dosage and a couple weeks later, she had a seizure. I increased the dose a bit, but she missed a couple doses and had another seizure yesterday.

She needs to see a doctor but it will probably take 2 months or more to get her an appointment.

 

[RobinN]

You are making good guesses. Just make sure that you keep this information on a calendar, which you can easily refer back to when necessary. It is also helpful for the doctor. Ours takes a photo copy of it.

My daughter when given lamictal, had severe pain. It was unbearable, and it was suggested she stop taking it. What I found with her was... when coming off of a med it was really important to go even slower than what the doctors recommended. I spread it out so that it was a real slow withdrawal. Sometimes you can spark a seizure if the brain is no longer getting a chemical it has grown accustomed to. That is my opinion, and certainly not from a drug research trial. I have however, found others that agree with my methods.

I think if you make that appointment, the time will fly quicker than you can imagine. In the meantime, we are here for both of you. I do hope she stops by. Yet, my daughter choses not to be involved. It is my support. She seems to be doing just fine without it.
It is interesting when she finds others that are on elimination diets. She finally has someone to share the trials with and is excited. We do have quite a few young adults here.

 

[dfwtexas]

Hi, welcome to our group. When I got diagnosed two years ago, I turned to internet to find out information. I found this site and a few others. The other sites were not friendly or helpful. This site has been a Godsend for me. It is great for information, support and everyone is so helpful.
Your description of your daughter affects of a seizure is very common. Keep in mind that seizure meds needs to be taken on regular basis to ensure a steady flow to control. Also drugs shouldn't be increase unless the doc has instructed so. I take my meds at same time every morning and night.
If meds are being taken correctly and seizures still occur, notify doc right away.
She may need a change or increase in meds. My have been adjusted several times. Please encourage your daughter to join us!
jenn

 

[epileric]

Once, a doctor did some tests on her but they weren't able to initiate a seizure during their testing and really didn't find out much.

Do you know what type of tests were done on her. I know for an EEG they don't necessarily need the client to have a seizure during the test to find abnormal brain patterns, though sometimes even when someone does have a seizure during one it doesn't register.

 

[DestinyRules]

Thanks to you all so much! I told my daughter about the forum and this thread and read some of your responses. She was relieved to find out other people go through what she does. She wants her family to read your responses so they will realize that what happens to her happens to others and is not unusual for a person who experiences seizures.

As far as the adjustments in her meds, there's a long story with that. I am a registered nurse so I don't entirely make these adjustments blindly or even without the doctor's knowledge.

My daughter originally saw her regular family doctor after her first seizure and he put her on Dilantin. She eventually was seen by a neurologist who wanted her off the Dilantin. First she was on Keppra for a short period but it was discontinued and she was put on Topamax.

For financial reasons she was not able to go back to the Neurologist and began to go to the Chickasaw Indian clinic. At her first visit, she gave them a list of the meds she was taking and the doctor changed nothing. But she was barely controlled with the Topamax 75mg twice a day and the Dilantin 200mg in the pm. If she missed a dose, she would seizure.

Finally, I went with her to the Doctor and explained that the neurologist had intended to titrate up that Topamax, but since she never went back to see him, it didn't happen. The Indian clinic doctor agreed, but for some reason, he didn't order the increased dosage to the clinic pharmacy. In the meantime, she ran out of Topamax early due to the increased dosage. It took phone call after phone call to the clinic to finally get the script corrected. In the end, the doctor ordered the wrong dose, but we went with that for awhile,,then more and more phone calls until I finally sent a fax to the doctor and got the dosage straighted out. Problem solved, right? Wrong.

She began to have severe stomach pain and ended up in the hospital and then discharged a few days later without a diagnosis. The day after her discharge, I went to the doctor next door to the home health where I worked and gave him her history and meds. He told me he had had several family members who had taken Topamax it they all were unable to tolerate it due to the stomach pain it caused. I cut her dose to 50mg twice daily for one day to get the pain stopped and then started back at 100mg twice a day. (she was previously on 200mg twice a day) She continued the Dilantin 200mg in the pm daily. She then saw her Dr for another issue and told him and he did agree with what I had done. The stomach pain did stop within 24 hours.

Then after a few weeks, she had a seizure. That same day, I discovered MANY dosages she had missed over that time period. So I became more diligent in reminding her to take her meds, Exactly one week later (2 days ago) she had a second seizure. I have increased her Topamax to 150 mgs in the am and 100 mgs in the pm. The doctor doesn't know about the second seizure as yet.

She is fearful that the stomach pain will return.

Now, through all this time, the Indian clinic doctor was supposed to refer her to a neurologist. That was MONTHS ago and she still hasn't received notification of an appointment. It will take at least 2 months to get another appt with her doctor , but when she finally goes, I intend to go with her to make sure that doctor gets that referral made.

So, in the meantime, we are pretty much on our own. If she has even more seizure, I will take her to the Chickasaw Nation hospital ER. It's quite a way from our town but that may be the only way to get anything done. Trust me when i say that out local hospital ER is worthless and it would be a wasted trip to go there if she has another seizure. But if I take to her to the Chickasaw ER, I feel sure they will get that referral to the Neurologist done. My daughter is a little resistant to doing too much for many reasons, fear and embarrassment being two reasons.

It's not as scary for her since she doesn't remember what we see and go through when this happens, so she's not as driven to do something about it.
I might add that she is a Gastric Bypass patient and has a pacemaker for sic sinus syndrome and therefore can't have some of the treatments/tests that are available for seizures. She takes Lanoxin in addition to her seizure meds.

So, there it is in a nutshell and this is where we are today.

Oh, and I told her about the fish oil..we will get some asap.

 

[DestinyRules]

Do you know what type of tests were done on her. I know for an EEG they don't necessarily need the client to have a seizure during the test to find abnormal brain patterns, though sometimes even when someone does have a seizure during one it doesn't register.

I don't know actually..I wasn't there, I just know she went and told me hey didn't find out anything.onder:

 

[Bernard]

My daughter slurs, staggers when walking, is disoriented and confused and even delusional. ...

... This can go on for several hours. What ends up happening is she will eventually lay down and go to sleep for a couple hours and when she does, she wakes up with a headache, but is otherwise normal again. ...

Sounds like a prolonged post ictal event IMO.

 

[skillefer]

200 mg. dilantin once a day??? My eperience with dilantin is that they try to do 100mg a day 3 times a day when starting someone on it, as 300mg is considered the minimal dose unless the blood work says otherwise. Was there a reason for switching her off dilantin??

 

[epileric]

200 mg. dilantin once a day??? My eperience with dilantin is that they try to do 100mg a day 3 times a day when starting someone on it, as 300mg is considered the minimal dose unless the blood work says otherwise. Was there a reason for switching her off dilantin??

I wonder if it was a lower dose because it was in combination with topomax.

 

[Nakamova]

I actually had seizure control on 100mg Dilantin per day. Just sayin'

 

[DestinyRules]

I wonder if it was a lower dose because it was in combination with topomax.

That is correct. The original doctor had her on Dilantin 200mg am and pm, then the neurologist put her on the Topamax and wanted her off the Dilantin completely for some reason. But when she changed to the Chickasaw Nation doctor, her left her on 200mg daily with the Topamax.