Epilepsy

@HopeisWorthLiving

I don't have epilepsy but I had a friend who passed from epilepsy this year, he was a really great person.

I am so sorry to hear that. I’m here if you need to chat. SUDEP is very real and not many people talk about it. I’m here if you ever want to chat about it

@HopeisWorthLiving

Thank you so much for making this thread! I will definitely keep an eye on it too ♥️ My brother has severe epilepsy, I'm unsure of the name but its the one where his fits make him stop breathing so he has a VNS to help prevent it.There should definitely be more support offered to people with epilepsy on the site. Thank you once again ☺️

I have focal epilepsy, thank you for your support

@HopeisWorthLiving
I've been struggling with epilepsy since I was diagnosed in 2016. Anyone with it knows the ordeal you go through finding the right med or combo of meds. I'm still going through it this many years later 😔. The hardest part however, is being a burden on my family. It's honestly the worst feeling. Not being able to drive, or work at the moment. It's caused a great deal if depression for me.

It took me about 7 years to discover I had focal epilepsy. (Sorry I am new here) I had focal epilepsy as an adult. It was my first job after graduating from uni when I was 22. I was at work, i worked more than I normally should. Suddenly one day at the office I started seeing black dots, I wasn't feeling well I felt depressed and then suddenly out of the blue my right arm started jerking and shaking then I got up to go tell someone what's happening and I couldn't speak but I was aware however the shaking got worse, I couldn't stand my entire left side was shaking and jerking and it was strange. I passed out and woke up and had another episode and I didn't know what's happening... I was rushed to the hospital and they gave me valium and I slept I woke up couldn't process what happened my body was aching. I went to a neurologist and he said I needed to sleep better and eat healthy and take anti depressants. I refused he didn't diagnose me with epilepsy I fixed my sleep and I stopped having seizures for a while after 3 years again with stress, caffeine and relationship problems another episode was triggered I was awake, my hand shook and I couldn't speak I went to another doctor he gave me anti depressants and told me I was taking it for attention. Then my seizures were getting more frequent, my right arm shook i didn't know what's happening the episodes were weeks apart and then my uncle recommended me to his neurologist, by luck he witnessed my episode and instantly diagnosed me he said I had focal epilepsy and listened to me, he said I have simple partial seizures that affect my motor skills. I did a CT scan, EEG and MRI and all confirmed his diagnosis. I have been with him for 2 years and he have helped me a lot, now my seizures are less frequent, and I'm off the valporic acid and now he gave me less medication. I have been aware what might trigger them. I have cut caffeine and adjusted my sleep and my stress levels. It takes so much of your energy and emotions. You feel helpless and weak and when it happens you feel your body is a wreck and as if you were hit by a car. I tell my coworkers don't hold me or even hover around me when I have an episode but just to remind me to breathe because I hate feeling or seeing them panic or stress. I hate being aware but I am lucky that I get to know if it happens to be prepared to sit down

Not epilepsy, but I have PNES

I have epilepsy. I was diagnosed 18 months ago when the seizures started. I was having 3 to 4 Tonic Clonic ( Grand Mal) a day for a period. I lost my driver's license l, my job, my health insurance and had to live off savings. Now I am down to 3 to 4 seizures a week, and they are not as severe. I sold my house and moved in with a friend to save money. My wife moved back to England d so she would have Health Care. So in 18 mo the epilepsy has taken my freedom, my career, my home, my savings and my wife from me. It is a horrible disease that I am finding most people don't understand. I understand and support anyone that has this misunderstood killer. With every third medicine advertising commercial about ways to look younger we are fighting this alone it seems.

Hi I am living with epilepsy. I had a frontal lobotomy in middle school. They took out the part of my brain that helps me stop and think. I have still have them every once and a while. Will probably will never be able to drive. As long as I take my meds I’ll be fine I have been told. My seizures have changed. I wake up not able to sit up after one and my brain goes straight into panic mode. I feel like stress has allot more to do with my seizures now. That is what brought me to 7 cups. So happy to be here.