How does your epilepsy affect your relationships?

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I get a lot of mood swings, very up and down etc and it causes big problems between me and my family, i feel like im losing them? Is anyone else the same? or does anyone have any advice on what i can do to try and improve family relationships etc? thanks
 
Mmmmmm, well

honestly, it's going to take patience, and work, sadly. My immediate family is not a problem, they've seen and KNOW what goes on. And they'll do ANYTHING to keep my seizures from happening.

My EXTENDED family (and this included my mother, until recently) just thought that I was making things up. Not a single one of them realized that there were consequences to the tonic clonics that I have (especially since I have broken many bones--arms, legs, back, collarbone---and now arthritis everywhere). And none of them understand what the side effects of the AEDs can do to me over the long run.

My mother, however, FINALLY understood it in the last 10 days--because the neurologist that she and my father both use told her that A) She had had a stroke about 10-12 years ago (discovered after testing for vertigo) and B) Daddy doesn't actually have PARKINSON'S DISEASE. He has LONG TERM SIDE EFFECTS from a drug that he took about 6 years ago for gastrointestinal problems.

I had been explaining to all of my family over the years what was going on, etc., but it took something MAJOR like this for it to really sink in to one of them. And now that it has sunk into my mother's head, the others will now fall into line, as they all listen to her. So it also took patience. Sadly, and in a warped way, it took some luck, too, I guess.

Just keep working at it. Understand that some people don't get it. If you really want, take them to the doctor with you, and have the doctor explain what's going on, that might help. (I didn't do that with my mother--she's too much of a control freak, she's tried to have me committed before, even after I was married. My doctors both know how I felt about that, and her, and absolutely refused to have her in the room.)

Are your mood swings because of your meds, or the seizures themselves? Some meds, like Keppra, can cause mood swings......

I wish you luck.

Meetz
:rock:
 
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I agree with Meetz. Patience and work. Also, make sure that your meds are not causing the mood swings. If your on meds for other things, make sure that the meds are not interacting negatively. If your diagnosis is recent, be patient, epilepsy can be difficult for not only the patient but the family to adjust to. If the diagnosis is recent, your family may think that now that your on meds, your "problem" is all gone. In that case, you'll need to try to educate them about epilepsy.
 
Family matters

In regards to family I too have had the same problem with my immediate family. Since my seizures weren't diagnosed until 27 when I had the 1st gran mal (I had petit ones for years but didn't know what they were) I wasn't living with my immediate family and, therefore, they didn't witness them. I did try to explain my situation and perhaps why I looked so tired all the time (meds as well as seizures) and I was always simply dismissed. Even when I cracked my ribs and dislocated my shoulder they would ask, "What happened?" and when I would tell them they would just reply, "Oh wow" and dismiss it. Anytime they asked what was the matter and if it ever had to do with a seizure they would respond, "Oh. So anyway blah, blah, blah." It used to hurt my feelings, but I got over it. Then I had RTL Surgery and suddenly they realized that I wasn't exaggerating or even lying. BUT, when I wasn't recovered in their demented expected time frame of a month or so they completely disappeared, exept my mom who moved in with me prior and after surgery. She started witnessing the gran mals and even apologized for dismissing them. But I didn't hear or see my family (father, 3 brothers, 2 sisters) for over 2 years. Unfortunately my mom passed 2 years after surgery and about 6 months later and a 6 month old baby girl I ended up reconcilling with some family (father, sister, 1 brother) but I don't get in over my head with them and I keep it surfaced since after surgery it crushed me to know they truly weren't there, which I found incredibly painful simply because I thought we were close and I'm always the "Go to" person when my siblings get into a bind. Anyway, so what I've learned is FORGIVING I found easier for myself and today, when it comes to family, I do what makes me feel better. Keeping it surfaced works for me and now that I have seizures again once in a blue moon my dad will ask, "How's it going with that problem you have?" I'll usually respond, "Epilepsy? Well, it hasn't gone away" and that's the end of the conversation. I KNOW they don't want to hear it and to be honest I often wonder if they even care, but I just chalk it off at this point and again, I keep it surfaced/simple. I'm lucky though because I have a husband who is more than understanding and knows my seizures / triggers better than I do. So, yes sometimes family can be tough but I remember what my mom used to say to me during my recovery, "Do whatever is going to make YOU feel better regardless of them. If you want to cut them off, scream at them, write them each a letter, etc . do whatever makes YOU feel better PERIOD". And today I pretty much use that standard. I don't yell, write letters, nor have I cut them off, but rather I'm polite when I see them and I'll have surface chit chat with them. It makes my life easier since I do have connection but not totally involved. Perhaps it's self-protecting but it works for me. GOOD LUCK and perhaps one day they will recognize how insincere they may have been, but in the meantime I say do what makes YOU feel better. Kelley
 
Education with patience and persistence. When you feel like you're in a good place, write down some of the things you wish your family would understand (mood swings, side effects, stresses), and why you want them to understand (i.e, you love and support them, and hope they can do the same for you). And then send or read them what you've written, if that seems do-able.

Definitely see if you can isolate the cause of you mood swings. If it's Keppra, then taking vitamin B6 might help.

Best,
Nakamova
 
Kelley has

a good idea there, for a lot of people. I, however, cannot do what she does. At least not for very long. *sigh* Doing that makes me "boil" because I'm reminded that my family is not accepting me for who and what I really AM.

My mother has 3 sisters, one is my godmother and a nurse. It just so happens that she is also a nurse. Because she is, she thinks she knows far more about E than I do...although she's never worked with E patients, and hasn't been in nursing for more than 10 years. She ALWAYS questions what I do about my E...and tells me to quit making excuses for myself.

"What are you doing about your meds now?" "Are you taking your meds everyday, and on time, Meetz?" "Are you going to the doctor regularly? "What do your parents think?" (Excuse me, I'm almost 45!) "What on earth would your diet have to do with your seizures? That makes NO SENSE." "Why would HORMONES have ANYTHING to do with your seizures? That's stupid!" "Your broken bones are just from klutziness......."

Sure, some of the statements are those of caring, but others are just plain ignorant, especially for a nurse...who always taught me to keep on learning.

I learned a long time ago to call her once in a while to check in on her, make the conversation less than five minutes long, and be done with it. Any more than that, and I'm upset for a long time. Frankly, I don't need that stress. So, I simply remove it.......sad, but true.......
 
I did actually write a big long post for a reply to this, but then hit the delete button cos i kept getting my words muddled :roflmao:

I do have some problems with people at work. They've had their epilepsy training, but that just gives a basic overall of what a seizure is, basic types, and first aid. Which is all covered in the first aid course anyway. It doesn't say anything about how the person may feel, what meds can do to them etc. Considering we're supposed to be supporting people to deal with their medical conditions, i think this was a big flaw in the training.

My family don't really understand. I'm trying to educate my mum and dad and brothers a bit more, but the rest of my *extremely large!* family can work it out for themselves, cos if i'm honest, i don't really care what they think.
 
Patience is the best advice I can think of. It takes time to get others to understand. But it's same as dealing with all that can come with E you need patience. Your not losing them, they are just confused and are each dealing with it in their own way. Given enough time things will work back to how they should be. Down side is you never know how much time it will take.
 
Oh yeah, i should add to my post above that my family are loving and supportive, they just don't seem to understand or to want to listen sometimes when i'm explaining stuff. But we're working on it.
 
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I am on Keppra and it seems to have changed me. Although they have said that the medication will make you angrier, I did not see the subtle changes. On Christmas day I asked my immediate family if they noticed any changes in me and they said they have. I do not know how to explain it because I am living with it and I do not see it. I told them at the beginning that there might be some side effects and also about this Kepprage. But I was not expecting to hear the reaction I got from my own family.

I am a lot concerned about the relationship in my own family and how to deal with this. I do not want to hurt anyone. To me this is one side effect I do not want. Is there some type of therapy out there that could help me because family is important and I do not want to hurt them because of this Keppra.

If anyone has gone through this with Keppra please let me know. I guess I am looking for some advice or something.
 
From my experience, it took time, education and constant reminders to not take my partner's moods personally. I think that's the big breakthrough on the part of support people, understanding that these moods are nothing personal. They're not caused by them, they may sometimes get directed at them, but it's not about them.

I suppose it was a little different for me, because I went into the relationship knowing he had mood swings, and worked hard to learn how to take a step back and breathe when he has them. I still get bothered by them sometimes, but not in the same way as I did in the beginning.

Is there an epilepsy association where you are? I know our local one has support groups and counselling, and maybe all of you could could benefit from that. Also, if they want to join CWE, that helps a whole lot too -- a whole world of understanding opens up here, when you realize you, or your loved one are not the only ones going through these things.
 
Jackson, have

you considered taking some B6? B vitamins are great for brain health, and it is a well-known fact that B6 helps with Keppra's mood swings (aka Kepprage).
 
Supportive, but they don't entirely understand, about the moods, I had moods, well, that would only look like I was in a movie. I explain the best I can. Patience is the best advice.

Billy. :twocents:
 
I am taking the B6 vitamin but I guess I need something more and I do not know what is. I know I need patience but this part of the side effect I did not see happening. At least with dilantin I could get tested and see a tangible difference. This Keppra there is no test.
 
My family mostly doesn't have a clue. I've copied papers and stuff to educate them and they never read them. So, I just gave up on it. Someday, maybe when they care enough, or get tired of this strange woman living with them, they will want to read them?????? In the meantime, I still try to let them know that some behaviors and actions are caused by the seizures. Then, when they take the time to educate THEMSELVES, it will all click into place. Maybe, if you have an epilepsy support group around, would they go with you? They could learn a lot if they will go with you and see that others have the same struggles and symptoms as you.
 
I am taking the B6 vitamin but I guess I need something more and I do not know what is. I know I need patience but this part of the side effect I did not see happening. At least with dilantin I could get tested and see a tangible difference. This Keppra there is no test.

Actually, with Keppra, your doctor should be doing regular blood tests to check your Keppra level. My doctor does full blood work whenever he ups my Keppra. I think he says he normally does it every year if there is no issues with the Keppra. Unfortunately, since my diagnosis in spring 08, I have been on a steady increases. Ask your doctor about checking your blood level of Keppra. Also, does your doctor know about your B6 intake. When I noticed the kepprage kicking in when I started and read about B6 on here,I started taking it. On my next neuro visit, he told me that I needed to let him know about anything I was taking, even over counter meds and suppplements. When I told him about B6, he said only a multiple vitamin should be taken for supplement of B6...that too much regular use of B6 can do permanent neurological damage.
 
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