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Fri, May 22 7:32am · Walking Alone - A poem that inspires me living with epilepsy in Epilepsy & Seizures

Love it, thank you for sharing 💜

Thu, Apr 9 7:04am · Breakthrough seizures after 16 yrs in Epilepsy & Seizures

Update 4/9/2020 any advice/comfort is appreciated:
I went to the epileptologist on Feb 28th. He suspects that I have TLE or MTLE (basically scar tissue as a result of my past encephalitis). To my understanding they are similar but MTLE is more bedded in the brain. He said since I've tried more than 3 meds that I should consider surgery to remove the scar tissue as long as it is safe to do so. I am scheduled for a MRI, an fMRI, 7 day VEEG, and neuropsychological exam. He said this will pinpoint where the scar tissue is and whether or not they will be able to remove it safely. I am SCARED! I hate having seizures and try to avoid them. I have extreme anxiety about it. I'm anxious about the MRI'S as well. I hate them. I know I need this done and it may lessen or possibly get rid of my seizures or it may not work at all. Even though I'm taking lorazepam several times a day, I'm still having petit mals almost daily but I haven't had a grand mal since November. I am also having nocturnal seizures several times a week. The surgery part scares me to death! Has anyone been through this? What can I expect? I've read a lot of things but I'd like to hear from people that have experienced this. Thanks 💜

Tue, Mar 3 4:01pm · Unknown autoimmune/neurological disorder in Autoimmune Diseases

@lquillen1963
I'm glad they did the test. I'm sorry that they have not found the cause yet. Perhaps 2nd and 3rd opinions are needed. Hope they will find answers soon. Best wishes! 💜

Tue, Mar 3 6:45am · Unknown autoimmune/neurological disorder in Autoimmune Diseases

Have the doctors done a spinal tap (lumbar puncture)? If they haven't, I recommend that they do one.

Thu, Feb 27 5:25pm · Menopause and Changes In Seizures in Epilepsy & Seizures

I don't have any experience with it. I'm going through premenopause so I'm interested in more information too. I have heard that menopause can effect seizure activity. From what I've read seizures can increase during premenopause and menopause and typically decrease again post menopause. Here is a good article about it. Hope it helps. Best wishes to you! 💜

https://www.epilepsy.com/living-epilepsy/women/menopause-and-epilepsy

Fri, Feb 21 7:23am · Can tinnitus trigger seizures? in Epilepsy & Seizures

Hi @hopeful33250
There are many types of auras (also called petit mal seizures). When I was younger I thought they were panic attacks. My auras start with a blank stare and a lightheaded/dizzy feeling, I get nauseous and feel my stomach "drop" like a sense of doom. My hands get sweaty. Lately I have been having ringing in one of my ears at the start of the aura. Sometimes I have de ja vu. It's an overall weird feeling. Sometimes they are very quick and sometimes they last a couple of minutes. It makes me have extreme anxiety because for me, it can lead into a grand mal seizure. I used to try to distract myself by getting up and moving around to think about something else. But it doesn't help all the time. Hope my description helps, but it can be different for everyone 💜

Fri, Feb 21 7:01am · Recovering from a traumatic experience: fear of having another seizure in Mental Health

Hi @ehowey18
I completely understand your fear. I have extreme anxiety about having another seizure. I was seizure free (controlled with meds) for 16 years and then I had a grand mal out of the blue. I have an appointment with an epileptologist on Tuesday to try and figure out things. I have been taking an anxiety medication that helps short term. Once we get things somewhat controlled I will start visiting a counselor if I can get a ride lol. Make sure to do some research about the counselor. You need one that specializes in this area. Maybe ask your neurologist for a referral. I'm glad you have some persistant parents. Best wishes to you! 💜

Wed, Jan 29 7:43am · Loss of consciousness, screaming, incontinence and weakness in Epilepsy & Seizures

Hopefully once her levels straighten out these episodes will resolve themselves.i would still see a neurologist just in case and be sure to mention her diabetes. Sending prayers your way! 💜