New and severly scared

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not_so_tough

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I'm not sure what to say but I can't cope alone anymore. I have family but I need to talk to people dealing with the same thing. I'm scared and can't stop the tears. I haven't slept in days. Just need people to talk to.
 
Not so tough,

Welcome - I am so glad you are here.

I read your profile, and you've got a lot to deal with right now. I'm so sorry about your diagnosis. It's got to feel really scary, especially when you have so many responsibilities with your children.

Know that your doctors will work hard to get this figured out, and get the seizures under control. It takes some time fiddling around with the meds to get things right. I know it is really hard to have patience, but it might take a little time and trying. In the meantime, please hang out in here and rant, learn, and lean on us all you need to. The people in here are super nice and have walked the path that you have. Everyone is here to help. It's a hard road but eventually, everything is going to be okay.
 
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Is it really going to be ok because at this time I am so afraid of dying I can't get past it. Last night I told my mom the results, she;s been on vacation sice I found out. Although it made me feel better, I still felt like a baby when she wrapped her arms around me and I bawled. I can't stop crying, I can't stop thinking, I can't eat, I can't sleep I just sit on this computer and try to learn more, the more I learn the more afraid I become, oh and pleases forgive the miss spelled words, the shakes have set in.
 
Hi n_s_t, welcome to CWE,

I've read your profile too, and I send you a big hug and sincere wishes for relief. Things feel scary and loom large, especially when the diagnosis is new. I can say this: information is your friend -- ask a lot of questions, and make sure your doctors are listening to you and talking to you, not over your head. If you can, bring a family member or friend to all of your appointments.

This is a good place to ask questions too, and to vent or cry. There's a lot of advice here and a lot of support for you to draw upon.

Best,
Nakamova
 
Welcome Not_so_Tough,

I also read your profile and send you a BIG {{HUG}}. I also have a hard to control case of Temporal Lobe Epilepsy along with Bipolar, so I can understand to some degree what you are going through. It's okay to feel like a baby, to cry out loud, to vent when you need to because dealing with epilepsy and bipolar disorder are not easy and most people on the outside have no clue. Don't let anyone tell you to "get over it". Or "it's all in your head."

Here's wishing you find the best care and relief from your brain disorders.
 
Hi NotSoTough! Welcome to CWE. ((Hugs))...Epilepsy can be scary..and when there are other medical conditions, doubly so. Just remember that we are here for you. Pax
 
So sorry

I am very sorry you are so sad. Know that you are not alone. I am a 38yr old fighter, 6'2" 240lbs. I have felt I was a pretty tough guy. Since being diagnosed with partial complex seizures several months ago, it has been a very emotional ride. I had a pace maker put because they mis diagnosed my seizures. After a new cardiologist and nuerologist they found out my heart was slowing down because I was having a seizure not the other way around. Now my neuro wants to do an MRI but can't because of the pacemaker. Any way what I wanted to say is I cry almost every time I have a seizure. 3 or 4 times a week. I feel anxious and depressed wondering if I will have these the rest of my life. Please know that you are not alone. You are going threw alot. A strong relationship with God helps me out each day. As I right this my eyes are tearing up just thinking about the seizures. I will pray for you. It will get better for you.
 
One thing for sure is that you are not alone anymore! You have come to the right place! I am a lot like behlen, a man who has stared fear in the face, but now have a condition that makes me feel weak and vulnerable. Here you can find advice, counsel, and a lot of big hugs! We are with you!
 
Not So Tough

I'm new here myself NST. I lost my son almost 4 years ago to S.U.D.E.P. and I also have epilepsy, so, I do understand your fear. It's taken me this long to be able to write about my situation...due to the handshakes and blurred vision by tears. I've finally reach the point where I am becoming angry because there was/is so much information I was never told. Now I can't spread the word fast enough. I think you're tougher than you think NST. You just hang in there and if you want to cry, then cry. The soul would have no rainbow, had the eye no tear! We're all here for you sweetie!
 
The soul would have no rainbow, had the eye no tear!
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I like that ! Been feeling like crying this week myself. It gets so frustrating at times.

NST I really hope for the best for you. No matter how bad a situation, there is always hope. It's just very hard to see it or find it sometimes.

And it can be very hard to find someone to talk to. Between lack of understanding and preconceptions/misconceptions, not many people can understand what we go through.
 
U said it so well no one really seems to understand what we really go through everyone always wants to know what you are feeling and how it's like but really unless they exerience a seizure then they will never know and there is really no way to explain it. It is almost a feeling of doom mixed with some anxiety along with some confusion and depression.
 
behlen said:
U said it so well no one really seems to understand what we really go through everyone always wants to know what you are feeling and how it's like but really unless they exerience a seizure then they will never know and there is really no way to explain it. It is almost a feeling of doom mixed with some anxiety along with some confusion and depression.
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You said it, Behlen! It's just like that. Kind of a forboding. I was trying to explain it to my mom, but no matter what words I say, she just says, "How could it be seizures? Are you sure you aren't just depressed?" Sheesh. Unless a person has epilepsy, they just don't understand.
 
Not So Tough

Not only are the seizures themself frustrating but, if you are able to work, it's not always your dream job. I always wanted to go into the Marshal's service and follow in my Father's footsteps. That's why my son's name was only spelled with one L, my father was the former U.S. Marshal for South Carolina. He too, would have liked to see me follow. When we were talking one day, he said, "you don't have to tell them you have epilepsy", I replied by saying, "if we were partners, and were in a live and death situation, knowing what you know, would you really want me as your partner?" He didn't say no, he just said, "I understand". He was a wise and wonderful man and I miss him terribly but, I know he and my son are together. I had to settle for loss prevention (security) but, I was good at it. I still got to work my investigations, chase shoplifters, and if lucky, get into a good scrap...lol I was able to work because I never told anyone until after I was hired. Now it seems to have caught up with me...LOL This is what my son wanted to do as well, that or join the military, unfortunately, he never got the chance.
 
Hi, try to be strong and try to think positive and about your children. Also try to stay close to family.

Also, I read your profile and seizure info. I am no doctor, but your medication is pretty standard. Nothing exceptional about it. What i am tryign to say is, your seizures and your situation sounds pretty severve but your medication is pretty standard dosage. You might want to bing that up with the docs and see what they say.

stay strong and positive.
 
behlen said:
U said it so well no one really seems to understand what we really go through everyone always wants to know what you are feeling and how it's like but really unless they exerience a seizure then they will never know and there is really no way to explain it. It is almost a feeling of doom mixed with some anxiety along with some confusion and depression.
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Interesting. Let me ask you for a description of what, exactly, you experience when you have seizures. When I was in my teens, I had episodes - attacks - of exactly what you describe: "almost a feeling of doom mixed with some anxiety along with some confusion and depression." Plus shaking.

Since last November I've developed epilepsy; lose consciousness, go rigid, shake, make strange noises, then regain consciousness and have trouble breathing and getting my bearings. Now I am wondering if those teenage attacks were some early precursor of this current problem....
 
It is almost a feeling of doom mixed with some anxiety along with some confusion and depression.
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That's what my auras are like. My body has this electrical feeling like a bad chord sounds in music, plus a feeling that something is horribly, terribly wrong - a feeling of overwhelming doom.
 
My heart goes out to you. x
I am by no means in a situation like yours, but I have felt the terror, loss, humiliation and devastation that comes with a diagnosis. I lost my career which I had worked 20 years for. I have to tell my children that mummy gets the shakes and can't remember a lot of things. I never thought I could deal with this, but in time it does get easier. I cry alot, and don't ever stop doing that - it does help. Be sure in the knowledge that you are not alone and that there are many people thinking of you. xx
 
nautilass said:
My heart goes out to you. x
I am by no means in a situation like yours, but I have felt the terror, loss, humiliation and devastation that comes with a diagnosis. I lost my career which I had worked 20 years for. I have to tell my children that mummy gets the shakes and can't remember a lot of things. I never thought I could deal with this, but in time it does get easier. I cry alot, and don't ever stop doing that - it does help. Be sure in the knowledge that you are not alone and that there are many people thinking of you. xx
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What kind of work did you do? There is no reason to allow this condition to ruin the quality of your life unless its a very bad case. The driving is the only thing that gets in the way of certain types of jobs I would like to do. But these days, with the "green earth" movement and so on, it's not that strange to not have a license and not drive a car. My point being, I dont have to explain a whole lot as to why I have no car and dont drive. Mind you, I also live in a major metropolitan city and there are millions of people who dont drive.

After my second grand mal and when the docs were convinced that my first one was not a fluke; thats when I had to come to terms that i had a condition. I was down and under the weather for a while. But you get over it. You learn to live with it. You learn to hide it.
 
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Welcome - I am glad that you have decided to reach out for support. I hope that you will find information here that will support you on this rough patch.

Are your doctors discussing plans with you as to how to deal with the new masses that they found on the MRI? There are quite a few people here that have had surgery with great results. I am sure they can offer support if that is in your future.

My daughter was given the diagnosis of Epilepsy at the age of 14. We seem to have been able to reverse its activity by making nutritional changes. It is one way to be proactive in your care and it only has positive results... overall.

Try to rest... it is important for healing.
 
Im a morning mass person, Ill remember you in my prayers. Ive experinced the power of prayer. Have faith and expect miracles
 
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