New here, currently in hospital for a week video EEG, need advice. Please! :)

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hharpe03

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I started having seizures about 6 months ago, at 28 years old. No seizures before this time. I was in and out of the hospital for the first month with breakthrough seziures. They kept upping my dosage of Keppra. I am currently on 2250mg/day (Brought down from 2500mg)

After a 48 hr mobile EEG that came out abnormal due to a burst of delta activity that was right sided dominant, my neuro suggested I come in the hospital for a 5 day video EEG.

And here I am, they only gave me 1250mg this morning and won't have any meds the rest of today or tomorrow. Usually, caffeine triggers my seizures, but nothing has happened. (As far as I know, I have both absent and grand mal's, but no grand mal's yet)

I was wondering any advice you may have to provoke seizures? I've been laying in bed relaxed and can't walk around due to the monitors. I don't want this whole week to be a waste of time.

Any advice would be sooo appreciated! Thank you!
 
Hi hharpe03, welcome to CWE!

The #1 seizure trigger is fatigue, so try not to sleep! And try upping your caffeine intake, while lowering your healthy food intake (low blood sugar is another popular trigger). How do you feel about aspartame? If that triggers you, start downing diet sodas. Hyperventilation tends to provoke certain brainwave patterns for folks who experience absence seizures, so try some fast shallow breathing.

The lowered Keppra dose should help too, but it may take a day or two for all the stressors to set you off. That's why it's a 5-day process.

Good luck! Ordinarily I wouldn't wish seizures on anyone, but I hope you can crank one out for the vEEG.

Best,
Nakamova
 
Hi hharpe,

Welcome to CWE & good luck with your Video EEG.

Like Nakamova said try to find things that you have found can trigger your seizures (eg-drinking more caffeine). It may take a couple of days before you do have a seizure.

I had an Video EEG in Nov 2010 & was in hospital for 5 days. Stress & fatigue are the 2 main seizure triggers so I sleep deprived myself while I was in for the Video EEG. I had a good night sleep the 1st night but after that I tried to only get a minimum of 2 - 3 hours each night. Even though I sleep deprived myself & the epitiologists had reduced my meds the best I did was have a few auras.
 
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I feel your frustration. I had that in May, and by day 4 with nothing happening I thought I was going to go nuts! My doc kept telling me that it is hard since you are relaxed and not doing normal activity, to get a seizure to show up. She said it is usually that fourth night that does the trick, and she was right! Hang in there. Even if nothing at all happens, it is not something that you have control over, and it certainly does not mean your crazy!! Keep updating us if you can
 
Thank you so much for the advice! The Dr. said he can see some abnormailities on the right side of my brain. He also said it is harder to have seizures here because it is so relaxing. I am out of bed, sitting in a chair and have had several aura's but nothing came of them.

I have been drinking caffeine like crazy and all I've gotten is some twitches, but I guess that could be better than nothing. They are sleep depriving me today and I only had four hrs of sleep last night and 2 hours the day before. So, hopefully there will be some action.

Have any of you been able to see any physical activity that you can do during the video eeg that could possibly provoke a seizure?
 
looking at those lines that go round and round some computer games if you can use one of them fancy phones with games on
 
Have any of you been able to see any physical activity that you can do during the video eeg that could possibly provoke a seizure?

Hyperventilating might help...
 
cazzy has a good suggestion, I have found that with one or two of the games one of my nephews plays.
 
Update: I just had an "event." My legs felt weird.. which is usually a part of my aura. I ended up not being able to move my legs. This has happened before during a "breakthrough" seizure when I first started taking Keppra. The usual happened, like studdering but I didn't loose the ability to communicate.

Has anyone had this happen to them before? I couldn't move my legs and if I did, it felt like I would start convulsing. Now, my lower back hurts.
 
Results are in! After a few episodes last night when I was awake and asleep. The neuro came in this morning informing me they are non epileptic and are physcological. I asked him about the 3 second (right side) of brain abnormality he found on my mobile EEG, he said he has to dismiss it for now because the blood work and EEG didn't change during my events.

I somehow find this comforting. Even though I had been dreading this as the outcome, I now find myself feeling relief. I know I didn't cause these myself. Who would want to go through all of this on purpose? He is keeping me another day and still wants me to let him know of anymore weird feelings just incase I have a different kind of seizure. He put me back on my meds this morning. I whopping 2500mg of Keppra! :)
 
Did the neurologist have any suggestions for treating the the PNES? Ordinarily if the seizures are considered psychological rather than epileptic, they don't used anti-epileptic meds like Keppra to treat them, so it seems odd that they boosted the Keppra dose.
 
Did the neurologist have any suggestions for treating the the PNES? Ordinarily if the seizures are considered psychological rather than epileptic, they don't used anti-epileptic meds like Keppra to treat them, so it seems odd that they boosted the Keppra dose.


Wow, they really don't use Keppra? All he said was there was a specialist at his office who I should follow up with and I should continue with my therapy. I asked him about the abnormalities he found on my mobile 48hr EEG that found burst of delta activity that was right side dominant and he said he just has to dismiss that. Is that normal?
 
Many docs have a hard time when diagnosing non-epileptic seizures, especially because there are are few possible scenarios:

1. You having epileptic seizures, but they aren't being picked up on the EEG. (Some seizures originate too deep in the brain to register).

2. You are having non-epileptic seizures, so they aren't showing up on the EEG.

3. You are having both kinds of seizures.

Treatment hasn't been standardized for non-epileptic seizures. If they are physiological (for example fainting), then the physical cause is treated. If they are psychological in origin, then treatment tends to be through counseling and therapies like Cognitive Behavioral Therapy. Psychiatric mediation can be prescribed as well, but not usually anti-seizure drugs.

So you need to have a conversation with the doc, and make sure he very clearly explains his diagnosis, and any next steps for treatment. Ask why the Keppra is being boosted/maintained. It may be a temporary increase, with an aim to eventually taper off -- but it seems to odd to boost up the dose before tapering.
 
dreading video eeg

My neuro has informed me she wants me to have a video eeg sometime in Sept. as soon as my insurance approves the procedure. I was on 3,000mgs of Keppra and having more seizures on the higer dose, she is also trying to find a 2nd med thats compatable for me. she backed it down to 2,000/day
and lamicital i'm up to 100mgs a day with weekly increases. My seizures happen in my sleep mostly, so maybe its a good thing, it's just going to be hard to take 5days off without pay.
 
Did the neurologist have any suggestions for treating the the PNES? Ordinarily if the seizures are considered psychological rather than epileptic, they don't used anti-epileptic meds like Keppra to treat them, so it seems odd that they boosted the Keppra dose.

I was going to say the same thing. In March 2011, I had my first VEEG. I had alot of simple partial seizures, but my dr still wanted me to see a psych dr because he thought the seiuzres he saw me had on the video were not registering on the EEG were non epileptic seizures. When I saw the psych dr, she informed me that if they were non epileptic seiuzres, the keppra could not keep them from coming. The only way the Keppra helps, is if they were true epileptic seizures. I was taking two different seizure medications prior to having the VEEG. before leaving, I was put back on the Keppra. But still, my dr said he didnt think I was having epileptic seizures. Well, after months of them not coming, and being on the Keppra, the psych dr confirmed that he was wrong, and I am really having epileptic seizures. She explained to me, and I even found this out from alot of people here, and just by googling things, that seizures can be so deep within the brain, that even an EEG wont be able to pick them up. Ive had epilepsy all my life. I was diagnosed at the age of 18 months old. Ive had complex partial seizures and grand mal seizures through out my life. The last time I had a grand mal seizure was in 2001. A few years after being put on Keppra and carbatrol. I was on those two medications for 11-12 years and they controlled my seizures very well. But as always, my dr said it was best to not be on the Carbatrol for too long due to the long term side effects that can come about with it. So it was then that my dr who I have now been seeing since November 2010, mentioned to me about him wanting me to have a VEEG done. I was in the hospital for five days.

If they did put you back on Keppra, then they cant really say your seizures are non epileptic. They would have to have a reason for putting you back on the Keppra.
 
Sleep deprivation is the only thing that triggers my seizures. I wouldn't want my worst enemy having seizures, but for the sake of VEEG , I hope your doctor can see some waves on your EEGs.
The days I had my VEEG done were a nightmare. It was a University Hospital and the attending and resident didn't let me eat or drink anything when I had my VEEG done. They gave me glucose through the IV and that's it. I told my parents I was hungry so they tried to give me crackers and some juice, but the resident saw that on the video and got mad at my parents.
 
What if the doctor thinks you're having psychogenic seizures, does psychogenic mean they think you're faking? I've seen fake seizures on TV reality shows and you can tell and I don't know anything about seeing a seizure. Yes, why would one want to go through all you've been through if they weren't real?

And yes if they put you back on Keppra, there's a reason. Yes I've also heard that if the reason for the seizure is so deep in the brain it can't be picked up by standard tests, I think I may be one of those & if that's the case, it'll be hard to diagnose.
 
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