Epilepsy

Join the Conversation on
Epilepsy
89.9K people
0 stories
2.3K posts
About Epilepsy
Explore Our Newsletters
What's New in Epilepsy
All
Stories
Posts
Videos
Latest
Trending
Post

I'm new here!

Hi, my name is EMTkaty. I've been diagnosed with ADHD, Anxiety, Depression (likely some complex PTSD as well), and Migraines. Currently, I am researching the possible (self or official) diagnosis of an Autism Spectrum Disorder. I have also suffered the loss of a (bonus) child (age 10) who had Autism and Epilepsy and deal with an immense amount of grief from that loss. I have worked the last 11 years as a pre-hospital care provider as an AEMT, and now training as a Firefighter.

#MightyTogether #Anxiety #Depression #ADHD #Migraine #Grief

3 reactions 2 comments
Post

Learning to change my mindset to change my perception

Hi, I’m very new to the group. I do need help in conquering my mind/mindset. Presently, I am going through antibiotic IV infusions twice a week for late stage Lyme. This is my second round of treatment. I’ve had twelve out of 24 treatments thus far. The Lyme is in my nervous system, connective tissues and joints. I’m experiencing tremors, speech difficulties, memory issues, nerve pain and sleep issues. And those are just the top five! I’m waiting for a neurology appointment to determine if those symptoms are all from the neuro Lyme or if it has triggered essential tremors or possibly Parkinson’s. During these treatments and given that it is flu/Covid/germ of the week season, I don’t get out much or at all, unless I’m going to the doctor. Here in Ohio, to say its “gloomy” this time of year is an understatement. My husband and I are typically active people. We love being on the water (we live on a lake). I have a dog, Jetta, that I adore. I feel so guilty for not being able to go hiking with her right now. Shes only 3 years old and she sleeps most of the day because, well, so do I. So, for the next five weeks my life will be on hold. In my mindset right now, I feel stuck, frustrated, angry, sad and defeated. I want to change this mindset. And I don’t mean just being positive. I mean to have a proactive mindset. I want to thrive while I’m healing. I am blessed in so many ways and I want to share my gifts of time, teaching and caring. I’ve been fighting this disease for eight years. I have been forced to give up a lot of things I loved that defined me. My volunteer work, running, working with animals, most of my social life, etc. Talk about “going through the change”? Oh yeah, I’m going through THAT, too! I’m sure you’re wondering about my poor husband at this point. He’s my best friend. He and Jetta go to every treatment with me. We are together 24/7 and couldn’t imagine it being any other way. Don’t get me wrong, we have our issues. This is all taking a toll on us both. If I’m down, he’s down. Which is another reason to change my mindset. We are both feeling stuck. Literally. Because we have plans to sell our house and move out of state. Where?? We have no idea. We were supposed to be traveling now and looking for our next chapter. And instead, here we are. I do have some ideas that may help. I’m really good at coming up with a plan. It’s my execution and follow through that gets shakey. No pun intended. 🤣 Oh, and did I mention that I have two adult sons who have epilepsy?? Yeah, so that keeps life interesting. Reoccurring life and death trauma. Boy, that never gets old! I was in remission last April. After a terrifying summer with my oldest sons seizures, I relapsed hard. Thats when the tremors and Neuro symptoms started. You know, as I proofread this, seeing it in black and white, it’s a wonder I’m functioning as well as I am. So there’s that. 🤷🏼‍♀️ #LymeDisease #Depression #Anxiety #mindset

43 reactions 13 comments
Post

I’m new here!

Hi, my name is ZetaWolf55. I have late stage Lyme disease that has now attacked my brain and nervous system. I have some symptoms of Parkinson’s and I’m waiting for my first appointment with a neurologist. I have two adult sons that have epilepsy. My husband and a couple of close friends are my support team. They are wonderful to me. My dog is my gift from my Higher Power. I am blessed in many ways and I’m grateful for all of it. I’m also human, which means, I’m sad, mad, confused, frustrated, goofy, enlightened, depressed, lonely, introverted, enraged and scared. I’m a warrior who’s fighting the inner demons in complete darkness. And my armor and sword are becoming very heavy.

#MightyTogether

7 reactions 6 comments
Post
See full photo

Does anybody want to talk No Driving?

I recently lost my driving privileges because of a documented seizure. I have had reasons to doubt my driving ability in the past and knew this day might be coming, but I guess I am still taking this loss pretty hard. Also, everyone I know is now very worried about me getting run over walking or biking with my near constant vertigo, and other issues.

Where I live, public busses definitely do exist and they are good enough a surprising number of people do use them. Thank goodness. That said, the schedules are still infrequent. The routs are also long. The length of the rout is often not because of distance traveled. It can be because the whole buss map is laid out in an asterisk patern. The busses all go to a single hub downtown, where everyone changes busses in that one place, before all the busses carry on to elsewhere.

Places the busses drop off and pick up can also be a problem for someone like me. This is because there may be no sidewalk or no pedestrian signals, even at the busy, complicated intersections. My service dog and I walk much better if we can rely on both these things.

I can ride a bike sometimes, but the bike lanes alongside the rides in my city are either non-existent or really a mixed bag that includes many flavors of confusing. I am assured, by other cyclists, that this is "confusing" on a level that is really not user friendly for anyone. Basically, the citty can't decide what kinds of bike lane to use, so they have something of everything.

Frequently there is nothing at all in the intersections, or whatever is there can be actively incompatable. This is things like a one way bike lain and a two way bike path both ending abruptly at a busy intersection. Figuring out how to navigate this is not easy. I'm a pretty educated cyclist and I still don't know how it's supposed to be done. This mixed up situation is probably extra hard for me, but actually that difference may also not be that much. I can be fairly normal on a really good day. Everybody seems to be confused, and also, an objective look at the variety of mixed up rules and structures makes it pretty clear that this infact a confusing non-system.

However the streets are, I am determined to keep doing things on my own. I'm determined to get out of the house, stay social, and not soly rely on my wife for rides everywhere. I have a few friends who also drive me some places, but let's be real. My wife is family. Most of this falls on her. She already supports us both financially and does a big share of the housework too. I desperately wish I did more of SOMETHING. Reality is I'd almost always rather do about anything than sit on the couch all day. Sometimes I'm there anyway.

Today, sitting on the couch and doing some phone calls and paperwork was pretty aspirational. I found I could get some things done, but only if I was really careful what I did with my eyes and head.

My wife is an amazing person who swore to love me "in sickness and in health," knowing that sickness was going to be the gueranteed part of that deal. It's amazing to know I am so loved, but also, I know she did not swear to be things like my taxi service and secretary. I want to do the best I can to take care of myself, to the fullest extent I am able, and I also want to be able to sometimes take care of her as well.

I was also my grandparent's caregiver for several years. I remember how much harder things got as soon as they stopped getting out of the house on their own. That is not a bridge I want to cross myself, certainly not any time soon. I'm not quite 40 here.

Anyone else out there in this no driving boat?

#Epilepsy #BrainInjury #Nodriving #Undiagnosed #Caregiving #MentalHealth

9 reactions 5 comments
Post

Epilepsy, This Ain’t For Everybody

When you’re diagnosed with epilepsy, you face plenty of challenges. Both my family and I thought we had seen it all when it came to my epilepsy. Long doctor’s appointments, invasive EEGs, weeks spent in the hospital, etc. However, these past few weeks have been a pure nightmare. Right when you think you have it all figured out, epilepsy changes its course on you.

For those who don’t know what my seizures are like, they are short, partial complex seizures. What that really means is I normally space out for a few seconds and then come right back to whatever I was doing. People rarely noticed my seizures. Sounds great right? Yes, but nothing is easy with epilepsy.

A few weeks ago, I began having longer seizures. This was alarming, but nothing to worry about. Then, for some reason, my epilepsy decided it really didn’t like me. I then began falling to the ground while having these seizures. Now these were something to worry about. I was slowly losing confidence in some of the things I’ve always loved to do. I, along with my family, never want that to happen.

I reached out to my doctor immediately and we made a few changes. I was thinking all would be good from here on out. Longer seizures and bruises that look like I won so many wrestling matches it’s a little scary. I can easily say that epilepsy is definitely not made for everyone, and I know many of you would agree. Through my current journey with my epilepsy, I’ve learned so much that I always overlooked.

Support is your number one asset when battling epilepsy. From my dad actually catching me numerous times to so many supportive texts from my mom and siblings to cousins, the list goes on and on. You can’t beat epilepsy by yourself, so please say thank you to your support system. I can’t thank my coworkers enough for all the times they caught me or were there for me after I had one. It goes a long way!

Finally, it’s never always heaven when battling epilepsy. When I have a bad period of time like this with my seizures, I simply throw on some Eric Church and let my worries go away. You’re a miracle to be on this planet. Yes, epilepsy is a pain, but never let it hold you back (or down in my case ????).

1 reaction