Disappointed and angry Just when you think they have a clue

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MIKEJ

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Hello,
I'm just wondering what sort of difficulties you've had in getting people around you to appreciate what we go through even just 20%.

20 months ago i had a few tcs that left me unconscious for 5 days and 13 years of amnesia. Since then I have only had a few tc the last one 6 weeks ago when I woke up in the hospital tied to a bed after 3 days. I have a neurologist and have been working on meds(hate keppra the most). Due to the seizures I have 2 cracked vertebrae herniated disc in my neck and osteoporosis. Due to the tc and side effects I haven't been able to work and have accepted help from my inlaws and my wife has kept working, I used to be successful financially and independent. Although this week I was ask when I will be back to work and not needing charity. My father in law said he knows people sicker than me and they are working and some of them are diabetic. Just to let you know money's not the issue between my sisters who won't acknowledge me and my wifes family there is approx 10mil.

Why won't anyone believe or even try to care I lost 13 years I dont remember my profession, kids birthdays any trips with them, cars i've had. Evidently I look ok sound normal although sometime I seem drunk my wife has been told. The memory is because I'm getting older and we all forget things(im 47) if you focus you will be able to remember things. I worry too much that is why my short term memory is gone.

I know im ranting and not making sense but Im so mad. I asked my fatherinlaw how he liked the lunch we had last week(there was no lunch) I told him we did go he thought I was trying to make a fool of him when i told him that is what its like. I cant work because I dont remember what i learned to get me where i was. I'm sore because of my back and arthritis.
But i'm sounding better and dont worry we all forget things.

Im not sure what im looking for but im fed up.
 
Hey Mike,

It sounds like you're looking for a place to vent, so you've come to the right place. We all understand. Unfortunately, many folks on the "outside" will never understand the hell we go thru suffering thru those god awful tonic-clonic seizures and the aftermath of them. I've been told many times, too, that I don't "look" like I have E. What the hell is a person with epilepsy supposed to look like? And my memory is shot also. So many kids events I don't remember and it breaks my heart when my now grown kids talk about their childhood. But just remember, we did our best with what we were handed in life. At least that is what I tell myself. And, has your father-in-law ever witnessed a TC seizure? Have him visit a neurology clinic sometime and see what he finds. See if he is man enough to take it all in.

Memory issues do accompany epilepsy, so do not let this fool keep telling you his point of view, since he has NO clue what he is talking about! If he brings it up again, show him these websites about epilepsy and memory:

http://www.epilepsy.com/learn/impact/thinking-and-memory/thinking-memory-and-epilepsy

http://www.epilepsy.com/learn/impact/thinking-and-memory/types-memory-problems
 
MikeJ - I do understand your frustration. I've been dealing with epilepsy & the side effects of Dilantin for 40+ years. I'm lucky in that, for over a decade, the Dilantin has kept the electrical storm in my brain from going all "grand mal" on me. (That's a long way of saying "Dilantin controls my seizures" but a bit more precise from my personal point of view).

It took me years to work through all that epilepsy/Dilantin was doing to me. Especially since I didn't have the Internet or the good people at CWE to help me understand. I just knew I took medication for Grand Mal & Petit Mal seizures. I still use those terms rather than the more up-to-date Tonic/Clonic & {various} Partial seizures.

The one thing I would say to you, based on my personal experience, is to "Stop Freaking Out" (or being anxious or being frustrated). It does not help your brain which obviously is trying to deal with the "electrical storm" going on.

As to other people understanding - you may have to accept that they just won't or can't. Because I appear "normal", most people forget I have epilepsy. At this point for me, I have more problems with Dilantin side-effects but, once I recognize them, they can be easily corrected. Those close to me know that it is OK to ask about my Dilantin levels should I mention feeling "off". Other than that they don't know what it is like to experience a Grand Mal seizure (nor do I know what it's like to be around someone experiencing a seizure). So I suggest you stop being concerned about that - it's somewhat out of your control, all you can do is educate them.

As to the memory issues - we all have them, either from the epilepsy or the drugs or both. I was diagnosed so early on that I didn't have as many memories "to lose" as you did. However I did feel stupid because of my lack of short term memory. And then I found out it was the epilepsy and somehow that made it easier to take, I had something to blame it on, I wasn't stupid. So I started developing coping mechanisms including immediately writing down even the smallest of requests. When people asked I would say I have epilepsy and therefor no short term memory, like zero, zilch, none.

One thing that deeply depressed me was that I couldn't remember what my trainer had taught me. I felt I had failed myself and my horses. It's a bit of a long story but in the end I found my memories. It's not like I have instant recall. It is more that the memories are there but what I lost are all the links. Once I developed new links I found that all the information is there. I can't force it but have faith that, if I relax and put myself into situations that will trigger the memories then they will be there for me when I need them.

You are on a path that seems to diverge from your original path. It's right to grieve over that lost path. There is also a time to start understanding the new path you are on and walk it boldly.

Wishing you all the best {{{ Hugs }} Dolores
 
Mike,
My seizures have never been controlled I was on Dilantin 34 years and it wiped my memory clean.I didn't have any luck with meds, I did have a rtL in 1982 and I've taken 22-23 diffrent meds but I'm refractory and I tried trying the MAD diet and I ended up having a mini stroke.

I've busted my head open more times than I've been alive.
I refuse tio sit at home and weight for my next seizure I get out in the world and live and if I seizue so be it.

I do know a woman who thinks I should have someone with me all the time because of my seizures.I had back surgery and I'd 52 and I know I've lost a good part of my life.
I don't remember my childhood before I was7.

Family doesn't understand and doesn't care to understand.I know that much.
 
Hey Mike,

I know how you feel about people not understanding. I love my family very much, and they love me too, but they can't understand partial seizures. They've seen my tonic clonics and assume those are the only seizures I get. No matter how many times I tell them that temporal lobe epilepsy shows itself in many forms of seizures, if I don't collapse to the ground, they don't believe it's a seizure.

It's a very difficult condition to explain to people, that's for sure.
 
My very first seizure was a TC and I was put into a coma for close to 2 months because they couldn't get the seizures to stop enough to bring me out of it. When I did come out of it I'd lost about the same amount of memory that you did.

I had no clue who they guy was that I had been dating. I had to ask my mom who the guy was that would come to see me, tell me he loved me and kiss me good bye. It's been 11 years now since that first seizure and I don't remember a thing about him.

There is very little of those 13 years of memory that are still stuck in my head. When I see someone they'll come up to me and start talking about things that we did when we were working somewhere together. I have to stop and ask them their name and what job it was that we were working at. They just look at me like I'm stupid and can't believe that I don't remember it. Most people don't understand what goes on with your brain when you have epilepsy.

My short term memory is pretty bad. After I have a pretty bad seizure I'll forget things that happened a few days before it. Normally though after about 3 months things start fading away. It seems like after around 6 months it's pretty much gone. It seem that if it was something really funny or if I had a lot of fun doing it then it usually stays up in my head.

My family doesn't seem to understand that I actually forget things and that's why I ask them the same questions about things all the time - I'm not joking around! It took me bout 3 years to remember that President Regan was dead. Every time something about him was on TV I'd ask my husband "Is he dead!" or "When did he die?". My husband would get so mad about this because the two of us had watched his funeral on TV. Just now I asked him if Bill Cosby was alive. He told me "Yes, you just asked me that a few days ago."

I have a friend that does understand about my memory and puts up with it. It's great because I can ask her things over and over again and she'll tell me the answer over and over again with no problems. The funniest thing that we have is when she asks me a question about something that she doesn't remember. We both get a good laugh about it.
 
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