Epilepsy

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I'm new here!

Hi, my name is GolfingDad. I'm here because I want to hear from other caregivers of epilepsy patients.

#MightyTogether

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I sing the body electric (Walt Whitman poem)

I have been having some 'shocking' experiences lately. If I flex my lower back, it sends a shock into that region. I even went to kick a ball for a dog the other day and the acute pain made my leg go all over the place and missed contact with it altogether. Then last night in the early hours I woke up feeling that I had been electrocuted. Also the left side of my neck was swollen before that and continues to be, cramping my ability to turn my head, left (especially), right or tilt it backwards. For years I have had odd bouts of static problems, from the usual shocks from plastic covered handrails to sparks shooting across to my nose, when pulling off jumpers made from synthetic materials. I also had twenty years of migraines, which I believe is like temporal lobe epilepsy, electrical outbursts that knock out the brain and send you into an altered state of consciousness.

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I'm new here!

Hi, my name is Tom49. I'm worried. I saw something today from an angle on TV of starting straight down from a plane on a program that was speeding about vanishing things from the earth that affected me in a way my seizures had in the past. I didn't have a seizure it just gave me the feeling I was just coming out of a seizure. The feeling lasted about 20 minutes after think I saw. It was strange and wrote to my Doctor and told him everything I could about my seizures. What I was the first time I could explain the feeling of a seizure except for the greatest feel of feer I get before a seizure.

I have also found that by realizing that if I think in a certain way I have been able to move my seizures from day to sleep and by now they have even started to go away all together. What I did was to tell myself I was one who was well enough off in relation to others so I wanted to see myself as not alone. Then I asked if I was using my mind in the best way? Therefore I have started to think about my weekes quality, spelling and use it in conjuring with my strength math. I did this in a meditation by spelling words and then thinking of the letters a to j, as 1-10 and adding all the letters within the words I spell and if there's an a to j adding them together. I'm also doing this in a way that relates the words to the actions I do and goes from a to z.

This has helped with seizures and I have also started living a life were I get up and go to bed around the same time every day.

#MightyTogether #Anxiety #Depression #Epilepsy

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Anger

I can see how anger sends you down because you are doing okay, then hit negativity from others which deflates your ego (how you feel about yourself - your positive side, which yes can be manically high). It's not just an emotional reaction but also a biochemical one, just like a high is. I feel shattered and scummy after getting angry from this and also the electrical discharge that used to send me crashing into migraines* in the past: the idea that this is therefore just an emotional reaction to failure, fails to acknowledge the way it messes up your body, not just your mind.

Migraines are electrical discharges in the same vein as epilepsy. An emotion might kick start it but the effect is more powerful than just a headache, reaction to light, sound and hyper-sensitivity in other sensory areas , including vomiting. Mind affects body and vice-versa.

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Share 1 (or more!) of your personal values.

Happy Monday, friends!

I’ve been working with my therapist on defining my values and using those values to help make decisions. At its core, finding your values involves identifying what’s important to you and why those things matter. There’s no such thing as right or wrong when it comes to values. Your personal values are exactly that — personal. What’s important to one person may not hold any significance for you, and that’s OK! That’s part of the reason why it’s so interesting to learn about other people’s values. It also gives us insight into who someone is and reminds us that the human experience is beautifully diverse.

Today, let’s take a moment to reflect on our values and share one (or several) in the comments. If you’re up for it, let us know why that value is important to you.

I’ll go first!

One of the values nearest and dearest to me is curiosity. I’m a firm believer that lifelong learning is key to finding fulfillment and makes us better citizens of the world. I’m also just a big fan of fun facts in general!

Now it’s your turn to share a value!

P.S. If you need a little help figuring out your values, give the exercises in this article from Mind Tools a whirl: www.mindtools.com/a5eygum/what-are-your-values

#MightyMinute #CheckInWithMe #DistractMe #MentalHealth #ChronicIllness #Disability #RareDisease #BorderlinePersonalityDisorder #Trauma #Caregiving #Parenting #Migraine #Epilepsy #DissociativeIdentityDisorder #Fibromyalgia

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I'm new here!

Hi, my name is CuriousFinch4515. I'm here because I have a 29 year old son who has epilepsy with no other health issues. He is living with me, and wants to live on his own and eventually work in the film industry. He does not like to acknowledge his epilepsy, but I need a support group and I think he does too.

#MightyTogether #Anxiety #Depression

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Feel good about you, not what people think.

I have had many beautiful people tell me
they love me. At the same time, I have had people say unkind things to me. The point is, whatever we do in this world will create a reaction from others. Embrace it all. But NEVER stop being who you are…EVER. You are too valuable to me.🩷.
-Danny Gautama

#MentalHealth #Epilepsy #Anxiety

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I Want To Be Sleeping Beauty

Some feelings or symptoms are like old, familiar friends. Epilepsy is like that for me. It puts me in depression, but when I’m not in it, I don’t remember it. I remember it being bad. I remember the darkness. But it’s different the second, third, and fourth time. It’s the difference between remembering what your room looks like and walking through the door. Being inside it again and feeling everything around you.

When the episode starts, it can be slow at first, but some sort of intrusive thought may swoop in to annoy you, and then it’s gone. It’s like a fly or a strange smell you get a whiff of on a road trip. When it hits you, though, it’s everything, and you can’t get out of it for the rest of the day.

It’s who you are; you’re nothing else. On the outside, you’re the same. You smile and bat your eyes at the cute boys and dance a little, but in that episode, it’s just to pretend. Like you’re 5 years old again, putting on a show for your parents.

You start to feel alone. You are unbelievably alone because you believe that there is nothing you can do to fix this disorder you have. The seizures will last forever despite the surgery you just had.

You believe you can be with someone you love, but you’re not really with them at all. We think we know what’s going on inside someone’s head because we are close to them and they tell us mostly everything, but the truth is, you don’t know what’s going on in a person’s life at all. Everyone is fighting a battle you can’t see.

We all have blind spots. There’s something wrong with you, and it’s exhausting. You feel helpless. There is a void. Existing takes so much energy that you just want to sleep for a little while, like sleeping beauty, wake up later, and it will all be okay. You want to sink into a hole where no one talks to you or asks questions, so you don’t have to say, “Yes, I’m doing great!” Because the truth is, I’m not doing great.

Anyway, it’s familiar. I’ve been here before. I got out of it before. And I will get out of it again. But getting out of it becomes the room that you remember but aren’t in. And that is the scariest part.

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Living with LGS

My husband, son and I had just finished eating lunch.  My husband asked me if I enjoyed my meal.  I replied, “yes”, but I told him that what was actually controlling my thoughts and dominating my mind throughout our lunch was, “what is the quickest way to leave this room?” My husband said he felt the same.

To back up a bit, our family was on vacation cruising through the bright blue waters of the Caribbean.  My husband, son and I were eating lunch in the fancy dining room of the cruise ship.  We were supposed to be at ease, relaxed, and enjoying our vacation.  Our 24 year old son is diagnosed with multiple disabilities, he uses a wheelchair, cannot talk and is diagnosed with Lennox-Gastaut Syndrome (LGS) which is a rare, hard to treat form of epilepsy.  It’s the LGS that has my husband and I on our toes.  It is quite normal for our son to have several seizures throughout his day.  Unfortunately, our son’s life, our lives and our other children’s lives are all affected by these seizures.  Everything we do as a family we plan for and take into account how that activity will affect him.

It’s this extra planning, unpredictability, and worry that has elevated our senses into overdrive after 24 years of living this life.  When we arrived at the dining room we asked to be seated in the far corner of the dining room, where it’s quiet and the eyes of strangers aren’t focused on our son, rather on their own families and fancy food.  We can “tuck” Andrew’s wheelchair into a less prominent place. We want to have this time with our son, enjoying our lunch and good food.  That is why we are here.

What we can’t predict though is when a seizure will come.  We can’t predict what type of seizure will come.  We can’t predict the strength of the seizure.  So, we are on edge.  We’re on edge even more because we’re surrounded by people.  We search for the exits.  We search for the easiest path for the wheelchair to take through the maze of dining room tables and chairs. What’s the quickest way out of this room so that our son can recover with dignity?  Because If the seizure does come, our son’s arms and legs jolt and shake violently.  Our son gasps for air, his eyes roll to the side.  Andrew’s seizures are powerful and loud.  When a seizure comes, for my husband, son and I the happiness and mood of the moment changes in an instant.  Is our son okay?  Do we need to intervene with emergency medication?  Will more seizures follow?  Our questioning and arguing of whether we should have our son out and about now dominate the main topic of conversation.

On this day we actually left the dining room without seizures. Thankfully.  Something so simple, a gift, and a great blessing in our days living with seizures.  A simple meal on a vacation with our family.  Lunch on this day is a success, and a relief for a mom and dad who live their lives knowing the next seizure is looming.   We wish for even more moments just like this.