How do you try to make your family understand and gain support from them?

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nataliejx

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Hey everyone. As you can see on my profile a bit about me. I am currently taking Keppra to control my seizures but I am having some horrible side effects; depression, vomiting, nausea, headaches, sleepiness. I went away for a long weekend to Cork and went to see one of my favourite bands in concert to try and lead a normal life and cheer myself up rather than moping about at home. It did cheer me up and I had a really happy weekend..then I came home to wound up parents and I'm back to square one. I haven't been able to keep much food down for about 4 weeks now so I have lost quite a lot of weight. Whilst I was away my brother was telling my parents that he thinks I'm taking recreational drugs!? I couldn't be any more against drugs! I think it threw them a bit and they were questioning it themselves, this has really upset me to think they might have such a low opinion of me. I'm not great at talking face to face, I get stuck with words and get way too emotional lately to speak about things but I want to try and make them understand that the side effects I'm having are serious and really taking their toll on me. Are your family supportive of you? Have you had to explain everything to them?
 
Natalie,

Sorry your parents are making this more difficult to deal with. Keppra is one AED that can make depression worse, so you do need to tell your dr. how it is making you feel. There are plenty of other meds to treat seizures that can have a more gentle effect on your brain. Plus, epilepsy is a very complex brain disease and most folks do not understand unless they have experienced a seizure themselves. Some types of seizures do almost look like a person is on drugs. Once, even a cop asked my parents if I was taking any illegal drugs when 911 was called, so even the so-called officials can make that stupid mistake. We must be the ones to educate others about epilepsy.

Just yesterday I posted on CWE about my complex partials, because after experiencing them for over 30+ years, people still don't understand what to do, even some family members and friends. So yes, I need to explain everything to people still, after all these years.
http://www.coping-with-epilepsy.com/forums/f27/my-complex-partials-23889/

And try to get your family's co-operation by showing them this website to explain the different types of seizures and what to do/not to do and the different types of seizures.
http://www.epilepsy.com/learn/epilepsy-101/what-seizure
 
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Hi Natalie,

I am so sorry that you are having so many difficulties. I have had a lot of my own.

I can help you out with your vomiting, nausea and Keppra.

When I have vomiting and nausea, I take Pedialyte. It is electrolytes and you can buy it over the counter. It will stop the vomiting so you can eat. Only take 1/4th cup, no more.

When I started taking Keppra, my doctor told me to take Vitamin B Complex, once a day. Your body is depleting your Vitamin B. I take one every day and I have no problem.

Welcome to CWE. It was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.
 
I had similar issues on Keppra. It seemed to stop seizures but also made me a maniac. I am now on VimPat which also has side effect but not as bad. It is taking me awhile to get used to VimPat.
 
I'm also on Keppra and had arguments with my Mom in how to deal with my seizures. I'm familiar with the effects of depression, nausea, and sleepiness from that med so I started taking B-complex and it helped.

Ask your doctor about it and definitely find someone to talk to or keep a journal, this past March made it a year since my seizures started and I'm very happy with how much control I have, but sometimes I stop and see how much I've lost and I cry...but you just got to keep going and not let epilepsy take control.
 
It's not always easy to make your family understand some just want to try to tell you what you should do and not to my family is like that and I've had sz's all my life and terrible side effects to some meds.
 
I had similar side effects when starting keppra a yr ago. Spent one or two entire weekends crying itching or sleeping. Any time I tried to eat it made me feel sick. Lost a lot of weight. Tried to to to my mom. All I got was your age. Suck it up and get over it. Tried to talk to sister. She just told me that people with seizures do not talk about it. It had been a very rough year. Things are a little better but still have to wrk on controlling my emotions. I don't know if I will ever enjoy eating again. Mainly eat because I know I need to. I had a grand daughter born last September that had helped me make it thru this last year. Not sure how long you have been on keppra but some of the side effects you get use to or can handle. It does seem to be doing its job.
 
your family doesn't always want to understand.When you have people in your family that think they know it all they are the worst, I have a sister who worked in the insurance field for 17 years and she thinks she knows it all and will not listen to me about anything.
When I correct er on something she says I'm wrong she's always correct.She's not the one who has had epilepsy she thinks she understands because she saw me have seizures as a kid and that's not quite the same thing and doesn't understand why I'd want to be controlled.
 
If you have trouble talking to them about what you are going through have you thought about writing them a letter? Even if you use it just to help you talk to them and get your thoughts in order it might help
 
Are your family supportive of you? Have you had to explain everything to them?
My mother was a LPN for over 40 years. As a hands on nurse, you'd think she, of all people, would be the most understanding. But she wasn't. In fact she seemed quite ignorant about Epilepsy and seizures in general. My father was a preacher and he had no other interest but serving the Lord. None of my siblings or their offspring cared enough to even ask one single question or offer support.

My husband is extremely narcissistic and has dementia for added fun. My children are the ones I can rely on but they have their own problems so it's still mainly me , myself and I. All families have their strong and weak points, my family never had much interest in me or my issues. They just plain don't give a shit.

You cannot make people be caring and supportive. If your family is like mine, you inform those who genuinely seem to care, and then seek out other supportive people to help you cope. This is why so many people end up on this site! Many family members just don't have a clue, they can't or won't try to help. Epilepsy isn't the end of the world, however each person's experience is unique and for some it may feel like it is the end of the world.
 
Hello Everyone, thank you so much for all your replies and taking the time to tell me about yourselves! I like reading your replies, it makes me reallise that I am not a lone like I feel. I have been to the doctors this morning, mum came in with me and I probably didn't tell her exactly what I planned to. I am going to take some time off work while I try and get myself feeling normal again. It's tough though, my wages aren't the best let a long being deducted for sickness but as everyone says, health comes first! My doctor suggested possibly going back to my previous medication, Lamotrigine, but a higher dosage as when I was taking this before I was still experiencing seizures, she also said about just stopping the keppra altogether but doesn't want to risk any fits. I am seeing an epileptic nurse next week so hopefully she can sort me out!

I'm going to try and write a couple of letters to some family members to let them know how I feel as a couple of you have mentioned, and just hope that it sinks in. Like many of you say, anybody not experiencing epilepsy will not understand what it's like, how it makes you feel, and they're tough to deal with. Especially my brother who has no clue about the way I'm feeling and he's accusing me of being on drugs or bulimic. That just makes me feel 100 times worse. We need support from our family at times like this. At least my grand parents and my mum and trying to understand :) I also get a lot of support from my boyfriend, he's been amazing and so patient with me.

Thank you again everyone, means a lot! I wish you all luck with your epilepsy. So glad I found this forum xx
 
I've managed to communicate the concentration and memory problems to my family so they understand but I think the way you explain it to them depends on what sort of people they are and what sort of relationship you have with them. I haven't needed to go into any complicated details with them. I guess my explanations go something like, "My epilepsy makes me dumb sometimes, my seizures trash my memory, and my medication makes it hard to think." I'd say that's about all I ever said, and I say these sorts of things in the moment when they come up. Not too long ago I was doing a meds change and having a lot of seizures so I told my mother that I might sound like I was on heroin for a while, and she said she's heard me like that a thousand times so she was used to it and I didn't need to worry. So straight forward, simple stuff, in the moment. And now my epilepsy and med effects are a normal thing for them and are taken for granted. We laugh about it most of the time, unless I'm struggling. I guess some people need to hear the technical details before they understand but I would try the simple route before going into all sorts of complications just because it's easier. My sister cares about me enormously but I think that's why she's more interested in how it all affects me, rather than why. My mother's tried to figure it all out but she struggles, and she just finds it way easier to understand the effects, rather than the causes. They're my family, not brain surgeons.
 
I hope you stay with us for support. I am glad that your grandparents and mother are trying to understand. That says a whole lot for them. Stay close to them in your family. They want to understand.
 
Sometimes the "not listening" behavior from others is generated from fear and wishing there is nothing wrong with the person they care about. Talking about it reinforces that there is something wrong. It may take time for your parents and other family members to come around. It has for mine: my Mum was involved right away, but my Dad has taken almost 4 years to come around. My brother is sort of involved: is willing to help in emergencies, but otherwise prefers not to talk about it.
 
With seizure meds there is a very good chance that the first med and dosage that you are on may not work for you. Some didn't work, some caused more seizures and some I couldn't handle the side effects. It took me a few years to find what was right to help decrease my seizures.

Luckily (I don't know if you want to put it that way) my very first seizure was so severe that I was put into the hospital into a coma because the seizures wouldn't stop. My parents, family and friends knew from the start that there was something wrong. My mom came to every appoint with me so she got to hear what the neuro had to say about my meds and anything else that was going on. She even still came with me and my husband for about a year after we were married.

Defiantly start keeping a diary of what's going on. When the seizures are, what you did during them, how long they lasted and anything else that went on during the seizure. Keep track of anything else that is going on too. You said that you are depressed, have vomiting, weight loss and other things. The dr needs to know this because it could be caused from your meds. I do this for my neuro and he loves it.

I try to keep a positive attitude about things, I know it's easier said than done though. I always say 'It feels better to laugh than cry!'

I'm glad your mom went with you to a visit, this could help a good bit. I take a good bit of meds. When it's medicine time and I take them out of my pill case people's eyes pop out of their heads. I always laugh because if someone got ahold of my meds they'd think they'd hit the jackpot until they find out that they are epilepsy meds.

Like you said I'd try writing something. I'm much better at expressing myself on a piece of paper than I am at talking. When it's on a piece of paper they can't interrupt you in a middle of a sentence telling you what they think is going on. But after they read it then they can ask you questions about it.

People who do not have epilepsy or know anything about it just don't understand it. They think that epilepsy means you have seizures and you will fall to the ground and shake. They don't know that there is much more involved with it.
 
I was never able to get my parents to understand.
I don't know if it was the era (the 60's) or mom had some guilt issues.

I did have a specialist tell me the obstetrician was probably at fault (hard birth),
and my mom did blame the doctor, but she never sued.

My family, neighbors, and classmates treated me like I was retarded.
The meds (phenobarb and Zorontin) made me high as a kite, and it made things difficult.
My parents did what they could to shelter me, to the point that I never met my cousins, barely knew my dads parents, rarely saw my uncles and aunts.
and I was to blame.
My moms behavior became erratic, and my dad distant.

I learned to be self reliant, work well with my doctors, and be proactive with my health.
I am employed by the government, just celebrated 15 years there.
I did work at a major company, but I got a feeling they weren't doing well, and made the jump before they were absorbed by another company.

Educate your parents, siblings and other relatives.
Work hand in hand with your doctor, and be as proactive as you possibly can.
Get educated, not about seizures alone, but be career minded.
You'll have this for the rest of your life.
 
Hey everyone
Thank you again for your replies! Means a lot. Just a little update, I visited the epileptic nurse who was very helpful and gave lots of information! She has put me back on to my previous meds which I was a little skeptical about as previously I was still having seizures. So back to square one! Seizures are back :( she has put me back on them as she felt it was because I didn't reach the full dose that the neurologist requested. On the plus side I have stopped being sick!! So happy about that! Has anyone else experienced seizures returning when changing medication?

Also, my brother is sort of talking to me again and seems to be more concerned with my health. One step at a time. My boyfriend bought me a couple of books which are interesting, one had loads of info on epilepsy and the other talked about alternative treatment, more natural rather than prescribed drugs. Mum's reading them at the moment and feeding info to my dad..who doesn't like to read. I think they're both beginning to have more of an understanding.

Hope you're all well!
 
btw, I was supposed to have "outgrown" absence seizures.

Ooops!
 
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