I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.

If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more

I was diagnosed earlier this week (2-14-2023) with ostopenia in my left leg and hip. I am concerned that this condition may be a side effect of the Dilantin/phenytoin that I take. I'm wondering if I should switch to another seizure med. I know you're not doctors but has anybody else encountered this problem? What action was taken by you and your doctors?
PS I know ostopenia isn't reversible. I'd just like to perhaps lessen the ongoing damage.
Thanks in advance.
Peggy Shore

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

I'm just wondering because I've noticed that as I'm getting older my seizures first came back and with increased activity

Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.

I was wondering when you seek a second or third opinion from a doctor do you tell ,share include all your diagnosis from previous doctors, neurologist .
Should that information be included?
would those previous diagnosis or medical opinions affect the opinion of the new doctor your seeing?
That's what my concern is really is that they will just agree with previous diagnosis.

I've got complex partial seizures with identified abnormality in my temporal lobe. Seizures are focal so my neurologist said surgery is an option I should consider, but I'm pretty scared and not sure it is worth it. My seizures aren't very bad and I could still lead a mostly-normal life but I plan to become a doctor and with sleep deprivation being a major trigger for me it may prevent me from pursuing my desire to work in a hospital (which means long hours). Im not sure about the process of… read more

As part of my little medicine cocktail I'm on 20 mg am ,20 mg am of clobazam ( Onfi ,Frisium) I'm still awaiting contact from my new neuro.I decided to reduce the night time dosage to 1 tablet .I know it's a benzodiazapine & strong Anybody had problems weaning themselves of this ? I don't intend to reduce it any more TIA

i have had epilepsy since 4 and i was recently diagnosed with temporal lobe epilepsy and my epilepsy specialist said that surgery might be a good option but i also have other types of epilepsy so i dont know if my other types would be affected not only that but i have a traumatic brain injury and acute encophalophaly