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I am 100% positive that hormones are playing a huge factor in both the frequency and intensity of my seizures but I’m not sure where to start to address it. If anyone has any suggestions, PLEASE let me know!
I started with seizures just as I was coming out of menopause at 54. I’m going to be 64 in June. All of my family and friends as well as myself think my epilepsy was brought on by a hormonal change. I… read more
Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance
No need to apologize. Tell your neurologist's about the depression side effect of that medication
As someone who was once labeled as not likely to ever reach a long-term seizure free state (and have… read more
Yes but for me it happens in stages,firstly i feel a different sense of reality, secondly i realise my coordination/balance/vision is impaired and thirdly i realise whats happening between a fog of… read more
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
@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more
I'm going to have the RNS implant in March. And all I want to know is has anyone else had it done and dose it work . I go in March to Vanderbilt medical center in Nashville Tennessee.
I was 58. Took 4 years to diagnose. I still believe it’s hormonal for me. I am followed by Mayo and they have no real answers. I’m refractory (drug resistant). Just woke up with it one day. 🤷♀️
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
I was reviewing my sleep log (started keeping one July 13, 2018). I haven’t been to bed before midnight. A couple of nights I went to bed at midnight but more often it is between 2am-5am. I don’t have a consistent sleep pattern. Some nights it’s 4 hours, some nights it’s 10 hours. Regardless of how many hours I sleep, I feel wiped out when I wake up.
What is your experience like?
I'm flakey as far as my sleep schedule. It's regular, but off hours. Unless I'm involved in physical activity, by 9:00 pm I can't stay awake. If I go to sleep, I'm up by 4:00 am, wide awake. I keep… 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 din’t have Onfi but do have friscium!