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Community Forum

Topic: Medication Issues

Created By: WakingKnowledge | 04/2020 | 1 Comment

I know it is different for everyone but what is the range in time? If you successfully got off it how long were you on it and how long after your last dose did you stop feeling withdrawal? Also...

Created By: MJulie | 04/2020 | 4 Comments

Hello! I am a 25 years old girl, and have had epilepsy for 19 years now. It started as absence seizures when I was around six years old, and then developed to generalized tonic-clonic seizures...

Created By: ErinEP04 | 04/2020 | 5 Comments

Hi, I was recently diagnosed with temporal lobe epilepsy this past December. I am now taking 150 mg of lamictal twice a day. I’ve noticed my memory is not as good as usual, and I often have...

Created By: Stacey5068 | 04/2020 | 5 Comments

It's been interesting reading about everyone's various medication experience. I am surprised that no one mentioned phenobarbital. I got epilepsy after I had viral encephalitis. when I...

Created By: rileyslow | 04/2020 | 2 Comments

Hi, my sister has had epilepsy since the age of 3 and is now 21. She is nonverbal so I am here in hope to be her voice. She has grand mal seizures (usually when she's asleep) as well as...

Created By: Reminder onibokun_5e705aeb59a88 | 03/2020 | 1 Comment

I have left hippocampal sclerosis ( atrophy)
Massive white matter frontal lobe lesions,
Cluster seizures , aphasia, TBI and seizure disorder.
I was recently cut off all my...

Created By: Margaretm | 03/2020 | 2 Comments

My 4 year old had a tonic focal seizure in Jan and was put on Trileptal and was taking it for a month and had a seizure. Doctor increased the meds and he started to experience side effects. His...

Created By: Circumlocution | 03/2020 | 1 Comment

Does anyone have experience with using the drug piracetam as monotherapy or an adjuvant to their AED(s)? It is appealing, because of how long it has been used, its low risk of side effects, and...

Created By: Sbazil98 | 03/2020 | 1 Comment

Hey, my name is Sam and I’m 21 years of age. I caught my first seizure when I was a baby due to a high fever and caught my 2nd one at the age of 17 in the middle of the night (thank God I shared a...

Created By: gjobbers | 03/2020 | 2 Comments

My 16 year old daughter started taking Zonegran 9 days ago and has developed many of the side effects including somnolence, fatigue and ataxia, difficulty concentrating, difficulty with memory,...

Created By: easwari | 03/2020 | 1 Comment

I was experiencing total loss of taste after starting on tegretol. My doctor asked me stop the medication but my taste did not return. I am wondering if my sense of taste is destroyed for good or...

Created By: jerry lopez | 03/2020 | 4 Comments

When I was 12 I was on my tablet and had a seizure, They checked me everything was okay, normal eeg and everything. I was put on keppra 1000 mg daily, I took that dosage for about 6 years, I began...

Created By: Ellabella_5c8142315329e | 03/2020 | 2 Comments

Hello!
A quick backstory: I am 20, was diagnosed with JME at 16, and have had 3 grand mal seizures in my life. I was on Keppra (500mg x2 daily) when I was 16. After 3 years seizure-free, I...

Created By: Chloe96 | 02/2020 | 3 Comments

Hi, i was diagnosed with epilepsy 2 and a half years ago and i was on lamotragine however seizures continued so they decreased it to 300mg 2xdaily and introduced me to levetiracetam(baring in mind...

Created By: Rjmccall512 | 02/2020 | 2 Comments

Hello - my son’s neurologist is wanting to start one of the following meds for his nocturnal seizures. Keppra, Trileptal, or Vimpap. I am researching them and my biggest concern is side effects....

Created By: Dave101 | 02/2020 | 2 Comments

My 8-year-old boy has had early morning seizures. The usual pattern is around 5-6 am we here him making some cries or breathing oddly. His head is shaking, his eyes roll back and his arms are...

Created By: dashgreg | 02/2020 | 1 Comment

So far. so good on Vimpat for me. I have only had a few seizures, so maybe not the best person to relate to, for those who have suffered much more than I. But the side effects for me are mild. I...

Created By: EKC | 02/2020 | 1 Comment

Does anyone have experience with Nayzilam or plan on asking their provider about Valtoco when available?

Created By: Patriotrehab | 02/2020 | 1 Comment

My Epilepsy Specialist is willing to collaborate with a General Neurologist, Psychiatrist, or Neuropsychiatrist who prescribes ADHD medication and is unafraid to try it with someone who has co-...

Created By: alisoncallaway | 02/2020 | 1 Comment

Does anyone have experience switching from zonisamide to CBd? What dosage worked? Current dose is 500mg zonisamide. 32 year old female/ 130 pounds.

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