if anyone is free to chat i am here
I’ve had epilepsy since the age of 2. I’m now close to 50 yrs. Of age
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
It's happened quite a few times at bedtime most recently last night, i feel heavy and disconnected but also like my body is moving around, my eyes quickly moving around...
After my right lobe craniotomy on 12-16-2020 being a constant burden on my family unable to help out, drive or work had a couple of trips via ambulance to the ER. Seen for: 8/2/2021
Pseudo seizures &… read more
I went out yesterday purposely and I'm happy again! I can't wait for this weekend! I'm going to finally do open mic again! Last time was 2020 and I blocked him. I spoke a little ruff to him first
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
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 was wondering ,does your neurologist do follow up MRI?if so what's the frequency?
It's been 2 years since my last MRI and I would like to know if my Archonoid cyst has grown during that time as my symptoms have progressively gotten worse and I still have concerns That it may be the cause of my symptoms amongst other reasons.
MRI will depend on your Doctor. And what information he/she is looking for. A lot of times for myself , my Epileptologist would schedule me a MRI appt., followed by a EEG or the Other way around. Then… read more
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
When did you get it?
Diagnosed 1992 I think winter. Oh wait nope summer.
During a pleasant, perfect late spring bike ride in 2011 (I've biked regularly since age 25) on a great well-known trail, my vision suddenly turned weird. All the beautiful colors of late spring turned suddenly to only 2 colors - red and gold. It stayed that way for about 10 minutes as I slowly biked along the trail. Normal vision then returned. In subsequent weeks other events occurred. I lost the ability to speak properly for 1-2 minutes and the ability to write down simple words in English. I… read more
I was classified as "reason unknown" for 55 years, until I started with a new neurologist (one in Boston rather that Southeastern Massachusetts), and I had my first of all of these: 2 brain MRIs, Pet… read more