Need some help - long read

kindred

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Hello all.

After scouring the internet for information and researching whenever I can, I stumbled on to this site. I'm actually speaking for my wife, who two Saturdays ago, had three seizures in a single day.

She's never had seizures before and I'll try to be brief as possible.

Start:

She was downstairs in the kitchen doing dishes after lunch that Saturday afternoon, I was upstairs. She walks in to the room I am in and looks completely wasted (like she had a hangover). She had vomit all over her face and her clothes. She looked like she wasn't 100% aware of what's going on and half responsive to my questions and reactions. About 10 minutes later she seemed a bit more responsive and let me know she went blurry all of the sudden, threw up and collapsed on the kitchen floor.

We assumed she got sick because she's been under tremendous stress as of late.

That night, we were talking in bed and in the middle of her sentence, she suddenly stopped. I looked over and her mouth was wide open, her hands were curling up and her body started stiffening. At this point, I'm freaking out and yelling her name to ask her what's wrong. She started to convulse and vomit. This is when I knew she was having a seizure.

911 was called and she was taken to the hospital ER. When I got there, she was on her way to going in to the trauma room. She looked like she stayed up for 10 days straight when I saw her. Extremely lethargic and sick. I asked her some questions and tried to see if she was responding at all. She sees me but doesn't talk. SHe looked like she had no idea where she was and confused.

Right around then, she started another seizure. Hospital gave her a medication that supposedly stops the seizure; I forget the name.

Hospital:

ER monitored her for a few hours, took an CT scan and said that she would need to be admitted to the hospital.

She was monitored at the hospital for another 3 days. They ran MRI, CT Scan, and EEG, all apparently came back negative. Her hospital doctor and neurologist put her on dilantin (and levaquin for her urine infection) during those 3 days and she was pretty much 99% bed ridden and sleeping most of the time. She couldn't get up and walk around as when she was awake, she was dizzy and had headaches all the time. Doctor and neurologist mentioned its likely the sideeffects of dilantin.

The night before going home, she was more awake than usual but started to show some different signs. She seemed a bit more paranoid than usual. She also mentioned she started having numbness on the upper left part of her lip. The doctor told her it was likely the after effects of the seizures she had. Her paranoia was very vague at this point and we didn't think much of it.

Back at home:

She works part time (full time student), but her work allowed her to have the whole week off. She was prescribed a month worth of dilantin to be taken once a day before she goes to bed (3 pills, 300mg total).

She has not gotten better. She didn't have seizures coming home but her paranoia increased, the numbness on the upper left part of her lips doesn't stop and she eventually started involuntarily twitching her left thumb. THe thumb twitching is on and off. Her primary doctor refers her to a neuro but thats not for another 2 weeks. Primary also mentions that all these things shes experiencing are likely the side effects of dilantin. She also has extremely hard time sleeping during the night.

Scary parts:

My wife and I currently live cities apart. I live where we would normally live because of work, she lives in a different city (not a easy commute distance from me) because she's finishing up nursing school. I had to return this weekend because of work. Her mother and aunt would be taking care of her. All the scary parts from here on, I wasn't there witnessing directly but some parts are.

1. This past Monday, I get a call first thing in the morning from my wife with a highly paranoid voice saying she misses me and want to just drop everything (school, work, etc) and come home. I calm her down and that was the end of that till we talk again after work.
Shortly after work, I get a call from her in a very upbeat voice (almost excessive) saying she had an out of body experience and she feels cured.
This is where it gets a bit scary.

She mentioned that while she was in bed, she locked up, her feet and hand were in the air and she felt someone massaging her all over her body. She heard music in her head and felt like someone was talking to her. She wasn't convulsing and she was fully aware of everything going on. She felt that her body was being turned left and right across the bed. Normally, I'd assume that this could've been all in her head but her mother was there who witnessed this at all and both of their accounts match up.

Her twitchings were gone, her headaches were gone, etc etc. She's normally a pretty upbeat person but her demeanor over the phone sounded highly excessive even for her when she was explaining all this to me.

2. Yesterday morning I get a call from her again in the same upbeat voice saying she misses me and asks me the address of her workplace. I was confused on why she'd ask me that all of the sudden. She's talking fast, and in a very random order of conversation. She then says "I was hospitalized for 3 days?" I'm even more dumbfounded and I ask her if she remembers it and she didn't. I'm pretty much disturbed and scared at this point.

She texted me that she took a walk around the block with her mother so I figured she's trying to make up for all the time she's been in bed.

Lo and behold, that night, her mother and aunt calls me frantically saying they found her in the kitchen not normal. Her jaws were open and she could not close them for a while. Her body was also stiffened. It took about 5 minutes or so for her to be able to close her jaws and 30 minutes or so for her to go back upstairs to her bed and I've been told she was unable to speak for a while. When she was able, wife called me back and this time she sounded normal. She sounded tired and sick but this actually sounded how my wife normally sounds (sans the tired tone). Again, she was able to recount everything she experienced from start to finish. She doesn't think these were seizures.

3. Her aunt has let me know that she has not been mentally normal ever since I left. Her paranoia keeps getting worse, her finger twitchings came back and her lip numbness came back as well. The biggest thing is that she has memory loss (remember, she couldnt remember that she was hospitalized... but that came back later), and extreme mood swings. She never, ever throws a fit (like a child) or yells at the top of her lungs in frustration. She was doing this to her aunt and mother in the middle of the night.

4. She called me during work today, said she woke up and felt the need to call me to drop everything and come to her right at that moment. Once again, she never does this. I can tell in her voice that she's not in her right mind. And for the first time ever, I witnessed her yelling at me in frustration (best I can describe is like a 4 year old yelling at the top of his lungs because hes not getting something). I remained calm and spoke to her patiently like I would to a child. I asked her name, I asked her my name, her birthday, my birthday, etc. She can answer all this correctly... but her demeanor is like a child.

So...

I'm at a loss. Is this the effects of dilantin? Levaquin? Are the seizures shes had two saturdays ago causing this?

It's coming to a point where we need to seriously think about doing something quick. She starts her new semester Monday and it's her last semester. She worked her ass off for years getting in to nursing school and her not being able to attend this semester jeopardizes all that work.

If she has another one of those 'out of body' or collapsed and locked body type of things where she's conscious but can't do anything... should we still take her to the ER?

I'm not understanding why she's so messed up right now. MRIs, CTs, EEG, all are negative... no matter how much she rests and take meds, her physical and mental state is deteriorating.

Please help, I need advice. Sorry for the long read.
 

Endless

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Kindred,

Welcome to CWE. I wish it was under better circumstances for you. It's got to be so hard to be apart from your wife right now.

I'm not a doctor, but in my opinion, your wife needs to be seen by a primary care phsycian and a neurologist ASAP. The PCP to begin testing for every possible physical disease that could be causing the seizures or the seizure-like symptoms. The neurologist to figure out what's happening with the seizures and the Dilantin. She needs to be seen by a doctor of some sort right away about the dilantin - the ER again if you have to. If this was the 1400's I'd say check her for ergot (the rye mildew that caused neurological/psychiatric symptoms in the puritans). But this is 2011, and you need a 2011 doctor.

Here are the side effects of Dilantin: http://www.drugs.com/sfx/dilantin-side-effects.html

It says if ANY of the following happen, see your doctor right away:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bone pain; butterfly-shaped rash on the face; clumsiness or unsteadiness; confusion; dark urine; delirium; high blood sugar (flushing; fruit-like breath odor; increased thirst, hunger, or urination; rapid breathing); new or worsening mental or mood changes (eg, anxiety, behavior changes, depression, irritability, panic attacks, restlessness, suicidal thoughts or attempts); new or worsening seizures; numbness or tingling of the hands or feet; red, swollen, blistered, or peeling skin; signs of infection (eg, chills, fever, sore throat); slurred speech; stomach pain; swollen lymph nodes; swollen or tender gums; tremor; unusual bruising or bleeding; unusual eye movements; unusual muscle movements; yellowing of the skin or eyes.
It could also be her symptoms escallating - not a reaction to the Dilantin. You really do need a good doctor to sort through this for you. Would the emergency room doc you saw be willing to make a call to a neurologist to get you in quickly? If not, make an appointment with one, explain the situation, and have her ER records faxed over, and ask for an emergency appointment. Ask to speak to his nurse (aka the gatekeeper), explain it all again, and ask if she can get you in quicker. If you can't get this, then go back to the ER. They can expedite tests and get a neurologist in there for you.

I'm sure everybody else will chime in here with some ideas, too. Please, let us know how she is doing and how we can help.
 

Nakamova

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Hi Kindred --
I second everything Endless has said, and hope that your wife can get speedy attention. Take her to the ER if that's the only way to do so. The jaw stiffness can be seizures even if your wife isn't losing consciousness (in fact many kinds of seizures don't involve loss of consciousness). Did they do a lumbar puncture at the ER? That's often done to make sure the seizures aren't caused by an infection like meningitis. Whatever is going on, the Dilantin isn't doing the trick, and may be making things worse, so she needs to get re-evaluated quickly.

Please keep us posted.

Best,
Nakamova
 

hootie

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A few thoughts...

--my grandmother (88 years old) will act very out-of-sorts when she has a bacterial (usually UTI for her) or viral infection. She will say and do strange things.

--drugs can cause strange things to happen for some people (doesn't matter what type of drug it is). My mom was admitted to the hospital for pneumonia--the doc prescribed IV steroids to decrease inflammation to help her with breathing. After ever dose, her heart rate and BP would SKYROCKET (scary high) and she would start saying strange things.

--seeing that she is in a nursing program...did she get any recent vaccinations (hepatitis B would be one)?

Hopefully you can quickly get to the bottom of this issue. Prayers!
 

kindred

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Hi all.

Thanks for the response.

I just got off the phone with her right now and her mental state is actually worse. I am highly thinking of just calling my boss and letting him know that Ill need to take a leave of absense.

She was in an agitated mood, she kept asking me "What is this? What is this?", and she keeps telling me to not ask questions.

I'm not liking this and I'm thinking hard of driving down tonight... Her primary doesnt work Thursdays so I might just take her to ER.

Will keep you all posted.
 
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I'm really surprised they used Dilantin. That is still in use today, but there are many newer drugs that may be more effective for her.

One thought did cross my mind. With other people monitoring her health, are they also checking to make sure she's taking the right medications as prescribed? Personally, I pre-count every day's medication because one day is just like another day. Did I take it or did I skip it? I have to look in my container for that timeframe/day.

It's also possible that her stomach issues could have prevented her from retaining medications. Ditto for any other infections or illnesses. Stress is such a huge factor with this condition and I would imagine a final year in nursing school would be difficult and stressful. Her stress probably involves losing out on a nursing degree, lack of support, lack of driving, and overall feeling awful on medications.

I'd also see a neurologist as soon as possible. It's going to require the clout of all her requested tests already done and possibly other tests to rule out something else. Other illnesses can downright aggravate epilepsy. I wish you the best of luck and hope we can provide support. Personally, I've been on dilantin, but not the other medication mentioned. Dilantin is known to cause swollen gums and poor dental health. I was on that one for years only to find out it also causes osteoporosis as well. However, in my case, it was combined with phenobarbital and kept seizures at bay throughout college. Maybe there's an interaction between her medications there.
 

Ann T.

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Kindred: Hi. How is your wife, & did your boss allow you a leave of absence to care for your wife? I really do hope your boss did, because when I read how your wife talks with you on the phone, it really does sound like she needs you to help her. Please keep us posted.
 

Nakamova

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I'm really surprised they used Dilantin. That is still in use today, but there are many newer drugs that may be more effective for her.
Dilantin is still used because it's usually well-tolerated, and because you can start with a large loading dose very quickly. (Other drugs require longer ramp-up times). Another factor is that Dilantin is a very inexpensive med, unlike some of the newer AEDs. After my first seizures I was started on Dilantin, although I eventually switched meds after a few years.
 

kindred

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Hi all.

I couldn't take it anymore and took a flight over. I've taken her to a large hospital's ER and pretty much gave them the rundown.

The ER doctor ordered an xray to check for infections, an EKG, a CT scan and blood work to check dilantin levels.

I'm waiting on the blood work but the doctor already let me know that regardless of the dilantin levels, there isn't much they can do at the ER. He recommends I contact my primary so that they can somehow arrange a closer appointment for a neuro ASAP.

Does any of this sound right to you guys? I've been feeling out the medical staff here and pretty much ask them "Have you guys seen anything like this?" two nurses and a doctor says yes, and they all say it's medication related. I just can't see my wife going through this ordeal another day... I'm highly disappointed.

My next step is do whatever it takes to get her neuro to reschedule her immediately.
 

Nakamova

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Some of the symptoms sounds like what I experienced when I was put on Dilantin (after my first visit to the ER with seizures.). I was way overmedicated, with the result that I was extremely tired, had a hard time walking straight, and my eyes tended to dart back and forth. But the confusion, memory loss, stiffening, mood changes, and paranoia that you describe -- I didn't have any of that. Which is not to say that Dilantin couldn't be causing them, but you really need an experienced neurologist to make the call. I hope the tests the ER are running point in a helpful direction, and that you get to see someone soon.

After my initial ER visit, I had a lingering headache (probably from the spinal tap they did) so I ended using that as an excuse to go to the ER of a hospital with a big epilepsy department. That allowed me to hook up with there neurology department and get an appointment very quickly. You might want to look into finding the best regional epilepsy center, and getting your wife seen there.
 

Birdbomb

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Just adding my :twocents:

Check her prescription, count the pills left, make sure she's being dosed as prescribed and over dosing. She just might not be able to tolerate Dilantin. Please keep us up to date.


http://epilepsy.emedtv.com/dilantin/dilantin-toxicity.html


http://epilepsy.emedtv.com/dilantin/dilantin-overdose.html
Symptoms of an Overdose With Dilantin

If a person overdoses on this medication, the symptoms can vary. Some commonly reported symptoms include:


  • Unusual eye movements
  • Coordination problems
  • Joint pain
  • Shakiness (tremors)
  • Overactive reflexes
  • Lethargy
  • Slurred speech
  • Nausea and vomiting
  • Coma
  • Low blood pressure
  • Loss of life.




Dilantin can cause serious toxicity. Dilantin toxicity can occur as a result of taking a daily dose of the drug that is too high or a single Dilantin overdose (either intentional or accidental). It is important for people who take the medication to be aware of the symptoms of toxicity.
Dilantin Toxicity Symptoms

The symptoms of Dilantin toxicity can vary, depending on the level of Dilantin in the blood.

Some of the most common signs include:


  • Rapid eye movements
  • Difficulty speaking or slurred speech
  • Lethargy
  • Problems with coordination or balance
  • Dizziness
  • Drowsiness
  • Unusual body movements or shakiness.
Some other possible symptoms include:


  • Confusion
  • Hallucinations
  • Coma
  • Seizures
  • Double vision
  • Nausea and vomiting
  • Difficulty swallowing
  • Irritability or agitation
  • Low blood pressure
  • Gum tenderness.
Loss of life due to Dilantin toxicity is possible, but not common.
 

kindred

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Here's an update.

I was able to have her neuro evaluate her in his office. He's noticed that she's been sleep deprived since the day of the first seizure (12 days) and I agree... my wife has been sleep deprived even during her hospitalization.

Maybe that's a good reason for all this.

Regardless, he said she's to stop dilantin altogether and start on Keppra and see how that works for her for the rest of this week and weekend. He also prescribed her a muscle relaxer that was only to be used on a need-to-use basis (ie, she cant fall asleep at night again). He said we should notice change (good or bad) by or on the weekend. He will keep evaluating her from there.

The problem is, she seems exhausted. Ever since she came home (had about 3 personality changes in the car ride... one time she tried to turn off the car ignition while I was driving because of paranoia), we tried to get her to eat so she can take Keppra and go to bed. We tried feeding her but during the middle of the meal, she seems to go in to a small minor seizure. It's not a convulsive seizure like her original ones. They are much more calm; the first one today, she seems to respond to questions using hand gestures or vague vague voices. She 'slept' right after the seizure and suddenly woke up (this is her pattern... almost brutal because this is out of her control).

Should she still take Keppra without having eaten anything? I'm so paranoid about drugs now I'm fearful what Keppra will do to her now...

This is getting to be unbearable and uncontrollable.

I'm considering another ER run at the same hospital... but I don't know if this will help after this morning.
 

kindred

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I should add that she's currently unresponsive from her second one. She looks like she's having a really really vivid dream.
 
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If she is unresponsive for more than a few minutes after the seizure is over, call 911! A seizure that does not stop is very dangerous and needs to be treated - probably with diazapam in the ER. Usually, when someone is on an antiseizure medication (AED), they are NOT supposed to just stop the AED and immediately switch to another AED - at least not without careful monitoring and adjustment. Where are you? Do you know, or can you find out, if there is someone in your area has a LOT of experience dealing with seizure disorders?
roni
 

Nakamova

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Ordinarily you don't want to abruptly stop taking Dilantin. The exception would be if the doc suspects an allergic reaction, in which case another AED needs to be started at the same time. Keppra can be ramped up very quickly, so that's why it was selected by the doctor. It doesn't matter whether you take Keppra with food or not, it's more important to take it consistently at the same time every day. (Taking it with food slows down the absorption rate just a tiny bit). You may need to wait a day or two for the Dilantin to completely exit your wife's system (Dilantin has a half-life of anywhere from 7 to 42 hours) and to evaluate at that point if that's what's been making things worse.

Until then keep doing what your doing -- stay with her, make sure she's taking meds and eating and drinking properly, and do your best to help her sleep. We're thinking of you both, so please check in and let us know how things go.
 

CathyAnn31

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Wow, how scary. I hope she'll be ok and get things squared away soon. Hang in there.
 

Birdbomb

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Hang in there kindred. It's always crazy when epilepsy comes into your life. If you don't mind me asking, how old is your wife? If she has known allergies to anything, especially medications, make sure her doctor knows.
 

occb

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Hang in there kindred, and hugs to you for all you're going through.

It's hard to watch your loved one go through something like this, but you're strong. Just remember to make time to care for yourself as well -- you don't need to get sick on top of everything too.
 
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