I really hate E and everything about it, just very down today

[dfwtexas]

I have been feeling really good, no seizures since May. Last night on the way home from work, I was just 2 blocks from home and started feeling "off". It was not like my auras usually are, I just felt a sense of dread. I kept praying for God to let me get home. Once I got home, I felt ok. Played with my dogs, my son called home to tell me he would be working late and everything was fine. I settled down on couch with the dogs to watch TV. The next thing I knew it was a hour later and had that "where am I feeling". I picked up phone and saw my son had called, so I called him back. He said he was only a few blocks from home and had been frantically calling several times and had a bad feeling that I had a seizure.
I heard him come in from the garage and was waiting for him to come up to the living room to talk to me. Apparently, I had another seizure, much shorter this time. When I came to, my son was talking to me. He said I was extremely confused. After that one, I was totally exhausted and I went to bed and slept all night.
I feel ok today....just mad at my brain and frustrated that I didn't get my aura and know either of these seizures were hitting me. I hate my son has to
live with this dread...I hate that I thought I had a handle on this and there really is no way to have a handle on it. Physically I am fine today, but emotionally I am not. How do ya'll deal with the after effect of seizuring and get yourself back together?

 

[RobinN]

As I watch Rebecca deal with this, she somehow just puts one foot in front of the other. I know it helps her to be busy, active, and a positive outlook on life.

For me I continue to connect the dots and work on ways to raise her threshold. Very frustrating to have a setback, that is for sure.

Having a good stretch without a seizure is a positive step. One I ask myself what were we doing right?

 

[skillefer]

It's frustrating when you go a long period of time without a seizure and then git hit by one or more. It's like, "God! Why again?" Trust me...I know the feeling. I guess what I do is try to think of what could have triggered it. I mean, for me, there's usually a trigger...something I did or didn't do that I should have...and I usually end up kicking myself.

 

[dfwtexas]

I have been trying to go over the day in my mind...what did I do, what didn't I do. I am mad at myself, I can't think of what I did to trigger it.
We had rain and colder weather yesterday and I was struggling with a lot of pain yesterday in my hand and arm. I am wondering if the extreme pain was a trigger. I know pain can cause your brain to misfire. That's the only thing I can think of. But I am doing everything the pain doc has prescribe for the pain. I go back to see him next week and he is going to do another stellate block for the increased pain.

 

[Cint]

jg,

I, too, know the after effects of going months without a seizure, and then BOOM, it hits again. Very frustrating. I deal with it by telling myself it could have been worse. I wasn't severely injured (again), didn't have to go to the hospital, and remember the other people that I see when I go to the office of my epileptologist. Many have it much worse than me. And I remember how it used to be, having them 4-5 a day, instead of 2 or 3 a year. For me, that's progress!

 

[RobinN]

I have been trying to go over the day in my mind...what did I do, what didn't I do. I am mad at myself, I can't think of what I did to trigger it.
We had rain and colder weather yesterday and I was struggling with a lot of pain yesterday in my hand and arm. I am wondering if the extreme pain was a trigger. I know pain can cause your brain to misfire. That's the only thing I can think of. But I am doing everything the pain doc has prescribe for the pain. I go back to see him next week and he is going to do another stellate block for the increased pain.

It certainly doesn't have to be associated with that particular day. I notice that it can be an accumulation of things and sometimes this is noticed on the journal days prior. For us, once again it is the TOM.

 

[dfwtexas]

Cint
you are right, I need to stay focused on the positive. I just get so mad and disappointed in myself...thinking I must have brought it on myself. I am very fortunate that my seizures are few and far between. I had to stay focused on how great everything in my life is and not get dragged down by this setback.

Robin
TOM? Time of Month? I had hysterocomy when I was 27 and don't really have the issue that a lot of the females on here due...I guess just another thing to be grateful for.

 

[seizingbeauty]

Hi JG,
I had a seizure last week that felt me feeling so alone and lost. Its actually what made me join this site. Needing someone to understand how frustrating it is when its your own body betraying you! I know that for me, I need to just keep going. I feel like if I give in even a little that I have lost the battle. I have an 11yr old girl and understand how aggrivating it is to know that it I'm the one causing her pain, having her protect me when I'm suppoded to protect her. But she is a strong girl and from helping me is learning not to judge others. Learning that no matter what life throws your way that you get up dust yourself off and keep going. Some one on the site has the proverb "falls down seven times, get up eight" Just remeber that there are people who understand and you are not alone in this. Remembering that last week helped me fight through

 

[dfwtexas]

It really does help to come on here and talk with people that really understand the feelings,emotions, etc. That goes a long way to help me come back from a seizure.

 

[Rae1889]

Yay! i really love that proverb. I also like "Continuing on after a setback is its own kind of strength. Perseverance is power" There are alot of words that can mean so much or so little. But think it has more to do with finding that acceptance.

I think i have accepted my diagnoses, and I am okay with it. You can always think that it could be worse, and it isnt, so lets be thankful about that

 

[knothing]

How do you mentally recover is a great question. Never mind that a fair amount of the drugs given for this can cause depression. I would say it takes time for that part, depending on the type and last time since. Obviously if this is a many a day everyday deal then that makes it different. I went 14 months between tonic-clonic and it made me mad. I just had to accept that it was a setback and I was going to push through it no matter what. Still it took time ( I am almost 3 months removed from my last) and it seems about a month before I felt better. Still am a little mad but most days I just don't have time to think about it. 6 and 7 yr old make sure of that.

More or less it is time to accept it for what it is. Another obstacle in life to get past.

 

[Chris515]

JG - Mentally recovering is tough. One day at a time I find.

Rae - you're right, it could always be worse. That's a good way of thinking.

I think I've accepted my condition, but right after I wake up from a TC I don't tend to feel that way. Like yesterday. It's hard to forget about it and move on when my tongue is so chewed up it hurts to talk.

The usual post seizure depression is hitting me now, but I know it's only a feeling.

But it is what it is. We've got to all stay positive and know that we can get through it.

I am so grateful for everyone on here. I feel so lonely and separated after a seizure, it's great to have the support of everyone.

 

[seizingbeauty]

Chris I feel the same too! Tomorrow is another day and here's hoping its better than today.

 

[Crystal11]

I'm in that type period right now with my seizures. I have had a few smaller CPs but some are so short that just 40sec later, I'm back to myself just a little confused. Right now I have not had a seizure, longer Complex partial rather in a few weeks. I love that because I feel very strong, confident that nothing wrong is going to happen and feel that if I just keep taking my meds on time and don't miss any, that I will never have another seizure again. And for some odd reason, after I have a seizure, weather shorter or longer, I get that feeling that I can't possibly have another. I don't know why exactly-kinda odd to me.
Anyways, I want to feel happy about it and be thankful that I've been seizure-free for a few weeks but I know that it's going to happen again. I've been having seizures since age 6 and was not treated until I was a teenager. Then resumed treatment again at age 23 when my CPs got in the way of college and they changed some. I am in fear of having a grand-mal seizure as my neurologist told me that it could happen. I try to stay thinking possitively and look forward to a great future. I always remember that there are others out there that have it much worse than I. It's hard to fight with those two feelings- happiness over seizure freedom, and knowing that more than likely- another seizure will happen. September 5 I went to ER for two CPs close together and it just depressed me some. But now I'm better and thinking more possitively about it.

Everyone take care
Crystal and her guide dog Umbro

 

[sicily726]

I can relate. I'm not 100% seizure free, either. But I don't want MORE DRUGS. Sometimes seizures really upset me, knock me out and bum me out (depression and tears often accompany and follow my seizures, as well as being totally wiped out afterwards, needing sleep). Then I keep on trudging because I've no choice but to keep on trudging. I've felt like giving up, too. Doom and gloom. Hopelessness. Despair. Nobody understands. I'm a burden, etc., etc., etc. Then I bounce back for awhile. Rinse, repeat. You are not alone.