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Anyone out there develop Epilipsy as a result of Encephalitis

Nubbsy
0 Recommendations

Our ds (8) was placed on anti-siezure meds when in the hospital and from what we have been told will probably be on them for at least 2 years. He initially had a seizure which landed him in the hospital & the diagnosis of encephalitis but now we are concerned that he may develop Epilepsy as a result of the Encephalitis. He had HSE so not sure if that makes a difference or not. Have you or anyone you know developed Epilepsy and what should we be looking for?? I am also concerned if they decide to stop the anti-seizure meds as from what I have been reading this can also cause seizures to occur.

Explore topics in this discussion:

Anxiety Surgery Epilepsy Encephalitis Seizures Stress

9 replies

Joey_sMom

My son now has an epilepsy diagnosis as a result of encephalitis. He will remain on medications the rest of his life. But, plenty of people who seize during encephalitis, go on to lead lives free of epilepsy.

Don't be concerned about seizures as a result of stopping medication. The doctor will taper the medication slowly to prevent that from happening. It might help to keep in mind that most people who have epilepsy are well controlled on medication and live normal lives.

Vicky
Caregiver

MichelleN

I wasn't diagnosed with epilepsy at first, but recently my doctor told me that any one that has seizures is epileptic. My friend has epilepsy from unknown causes and hasn't had a seizure in something like 20 years. He doesn't take medicine anymore & no one knows that he has epilepsy unless he tells them.

Michelle

MaccaM72

I did.

It is my main post encephalitis problem. I got WNV in 2002 and was diagnosed with now having epilepsy within 3 weeks of my admission to the hospital.

It was a result of the scar left in my brain from the 'E'.

Still on meds and recently had brain surgery to remove the scar.

I have a year of recovery ahead and then they will start to taper my meds to a seizure free tolerable level.

Some people take to their meds well and others it takes a few tries at new combo's

Rarely would a neuro just cut someone off their meds cold turkey and as was stated by Michelle they will be tapered off.

As far as knowing what to look for goes?

Here are links to the different seizure types. My wife and I found these helpful.

http://www.epilepsy.com/EPILEPSY/main_epilepsy

http://www.epilepsy.com/EPILEPSY/types_seizures

Hope that helps and that your son recovers well.

Nubbsy

Thanks for the replies. Guess I am just being overly cautious but want to be prepared for anything. From all I have been reading it really is sad how often Encephalitis goes undiagnosed by doctors. I guess we were lucky enough to end up at a Children's Hospital close by and got the proper treatment in a timely manner.

Dignity

Hi,

I had seizures when in hospital with E and was put under anti-epileptics. After I came out of hospital my Dr. started tapering off the meds, and still no seizures took place.

I still take anti-epileptics, but in smaller dosages, and must say that the reduction of medication must be followed up by your Doctor, and must only be done at very, very small dosages at the time.

Your surrounding caregivers and family must be informed about the possible consequences on your health and behaviour when you are reducing these meds, because the process can be quite heavy and difficult to undertake. If you get appropriate support on all sides, the process will take place in an easier way.

Just don't do anything drastic and keep yourself informed.

Dignity

LadyJaneG

I had Encephalitis at the age of 5, I am now ...almost 50! Had my first grand mal seizure at the age of 30..that's when I was diagnosed with a seizure. They call my seizure disorder Complex Partial Seizures. I tried to go off the meds once, but no go..now I've actually had to increase it. In the past couple of years, anxiety has really played a large factor also..and have to take Lorazapam at night to sleep. I have found this support group to be sooooo supportive!

eegrobert

Hello;
People who have seizures very commonly had a preceding brain injury (including TBI, and other acquired brain injuries including encephalitis). Studies have shown that at high as 80% of those on seizure medications had a brain injury prior to their first seizure. Remember that lack of sleep, stress and use of alcohol/drugs lowers the seizure tolerance and can trigger activity. Those on long-term medication should study the medication effects that they are using. Many earlier medications, especially first generation meds often prescribed to those on medicare/Medicaid, often have serious long-term side effects. Take care.
Bob

k_la

Dear Nubbsy,

My younger sister Ariel had HSE almost 2 years ago. She has been having Temporal Lobe Siezures since she woke up. These are different than the "normal" siezures since you can't really tell unless you're looking for them or if she tells us. HSE normally attacks the temporal lobes, and of course this is where she has the most damage. Temporal Lobe Siezures can be seen as an outsider as someone spacing out for a second or two then carrying on with what they were doing. They experience an "aura". They can be presented as seeing things, hearing things, a feeling of imense joy or anger for no reason, or even smelling something that isn't there. They typically don't present with shaking and eyes rolling. I know it sounds strange but look it up, its hard to explain. Mostly we know Ariel is having seizures after it has happened because she responds to them by being very lethargic and sleepy afterwards.
We have been trying several combinations of anti-siezure meds with her neurologist for the past two years. You have to find the right combination of meds that the benefits outway the side-effects. The doctors say that her brain chemistry may regulate over time from the damage and we can wean her off the meds when we notice less siezure activity. Hopefully this will happen since even though the Temporal Lobe Siezures don't look that terrible, they still cause damage to the brain. I would recommend you look up Temporal Lobe Seizures and discuss this with your neurologist about the probability of your child having them. Best of luck and if you would ever like to discuss HSE I am very open. I haven't talked to anyone yet that had HSE around Ariel's age (she was 6) and would really like to compare experiences.

Kayla

eegrobert

Kayla and the rest;

Unfortunately we get caught up with what the professionals tell us is happaning in the brain and miss much of the other important stuff. Most seizures and most operations for seizures involve the temporal lobe. Also most seizures following E or other brain injuries are not tonic-clonic (grand-mal) seizures, but are ones where the person "just spaces out" and cannot remember a period of time or series of event that happened recently (absance seizures). There are several pretty good books written by survivors (unfortunately all older than Ariel) that describe what they feel like in various forms and discuss various triggers and signs. Best of luck with Ariel.
Bob

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