Keppra keppra keppra!!!!!!!!!!!!!!!!!!!!!!!!!!

[Elaine H]

Hi Guys
I just have to ask you, and I won't go on for hours. I have just lost another friend, because I am supposedly aggreSsive, moody and difficult to deal with, something like that, just at a time when I needed her, the most difficult Xmas ever! How do you all deal with Keppra? What dosage are you on? I'm only on 1,000mg am that's a really low dose, I cut the pm dose out after losing the hotel job, for supposedly being aggressive!! I've always been firey, this condition makes you strong I know that, and being Scottish, I've always had a strong nature, but I'm worrying about how people see me now, I see me as an easy going person who has got lost along the way a bit lately, waiting for a bit of good news and good luck. I'd appreciate your input guys as I'm starting to think that I'm some kinda crazy eyed evil woman who people dive out of the way of, when they see me walking down the street!! People just DO NOT UNDERSTAND EPILEPSY DO THEY???? Hope you are all well?? XXXX

 

[Cint]

Hi Elaine,

I had a very difficult Christmas this year, too. I take 3000 mgs. of Keppra along with 200 mgs. of Topomax and now my neuro has introduced me to another new med, Potiga, something I've never heard of. Yes, Keppra does cause depression/rage, so I also take 200 mgs. of Zoloft to help deal with it. Only my son came around for Christmas this year. My daughter won't even speak to me now since I had the auto accident and could have died. I guess they are really ashamed now. EPILEPSY REALLY SUCKS!!!!!!!

 

[jyearta]

I couldn't handle Keppra, I was on it about 5 months.

This was the worse meds. for me and I taken almost all of them, and not able to handle them either. But the WORSE was the Keppra.

 

[momof3boys]

I take 3000mgs of Keppra XR daily. 1500mgs in the morning, and 1500mgs at night. Now one thing I also take too,, to help control the kepprage that Keppra brings on, is a complex B vitamin. I can see a difference in the days I do take, compared to forgetting it, and Im on edge with everything and everyone.

Im so sorry you had a difficult christmas this year. I hope your friend forgives you and understands that this is just not you, but just the medication talking. Hang in there!

 

[travel bug]

I'm only on 1000 mg of Keppra as well. I don't lose my temper more often than I used to, but when I do...look out! Part of the reason I don't lose my temper more often is that I just stuff all my feelings down. If I feel a conversation steering into dangerous territory, I basically do the old thing of sticking my fingers in my ears and saying"La-la-la, I can't hear you." Not really of course, but I try to ignore tricky situations or change the subject. In other words, I repress everything Not the healthiest approach, I know. But as prickly and moody as I've always been, I don't like confrontation, especially Keppra-fueled confrontation, so it's repression or screaming rages.

Well, actually, in those times in my life when I have practiced meditation, I cope better. I don't know why I ever get out of the habit. onder:

I hope you are able to patch things up with your friend and that the coming year is better.

 

[jyearta]

I know how you feel Elaine, I have lost friends due to my losing it when I was getting the B-12 shots, the shots thru me into a drug induced rage. I now have it compounded. However when I tried to tell them how sorry I was and the reason they have never forgiven me.

It hurts to know I hurt someone that bad.

 

[Elaine H]

Hi Guys Since I asked you for your experiences with Keppra, my father has decided to turn on me. I know I am the only person who can turn my life around, but what is the point of moving house when I could end up in a town with worse unemployment, a complete stranger, maybe bad public transport, in the UK, no job, no mortgage, I am NOT renting, I have a big house now, and don't really want to leave, I just need a job, my father says "you will NEVER get a job, don't bother looking" my psychologist who is helping me thru this very tough time in my life thinks his attitude stinks, and has told me to ignore him! He said to m "oh, so you called The Samaritans did you, and what did they have to say? seeing your shrink huh? What is he gonna shrink?" He is a completely uncaring, unloving man, and I have tried to be the perfect daughter, I think he's ashamed of me, I was ashamed of myself once, but not now, I am a stronger tougher person because of all this!! What I have to do is come on here when I feel really down, and vent my feelings, because only we understand, especially with the Temporal Lobe and all it's complexities, really, my father has absolutely no idea what epilepsy is, he never bothered to find out. Today, has been quite a sad day, I didn't have to say "I love you" to somebody I have never ever loved in my entire life, I am now, and always have been scared of him if anything, I cannot lose what I have never had, a real father. 2013 has got to be a turning point for me, I really just don't know where to start! X

 

[Chaz1]

I think you already 'started' Elaine

I am so sorry you are not getting the support you deserve. Your psychologist is right, your father is being unreasonable, maybe he thinks if u r close by all will be fine but sure does not sound like u feel that way.

Giving up your home to move to somewhere you could be isolated, in a house u don’t love or feel comfortable in, is not a decision to be made lightly i.e giving up our major comfort zone, the place we call home. Trust your instincts.


Looking to work in a specific career of choice? Always options out there, post delivery person, social but not too social and great exercise. U could lick and stuff envelopes and only leave your wonderful home when U want to...so many possibilities to keep that roof over your head...keep positive and keep looking.

I agree with Kirstin and jyearta, B complex are called the happy vitamins. Worth looking into.

Cint, my heart bleeds reading your message. I simply will never understand why, family will not put their BEST foot forward to try understand what it’s REALLY like living with E I am so sorry....no judgment here, thank the good Lord we have each other. Hugs.

 

[KarenB]

After attacking his neurologist 8 days ago, our Jonathan finally got the go-ahead for a Keppra reduction (he's almost nine y.o.). He was on 1000 mg a day. So...he was bumped down to 750 last week -- still seeing aggression, but not quite as bad. Down to 500 today. Will see how that goes.

I don't really think the Keppra was helping much with seizures anyway -- he's had good seizure control (this week), but I think it was the Zonegran (which we upped slightly).

 

[Elaine H]

I think you already 'started' Elaine

I am so sorry you are not getting the support you deserve. Your psychologist is right, your father is being unreasonable, maybe he thinks if u r close by all will be fine but sure does not sound like u feel that way.

Giving up your home to move to somewhere you could be isolated, in a house u don’t love or feel comfortable in, is not a decision to be made lightly i.e giving up our major comfort zone, the place we call home. Trust your instincts.


Looking to work in a specific career of choice? Always options out there, post delivery person, social but not too social and great exercise. U could lick and stuff envelopes and only leave your wonderful home when U want to...so many possibilities to keep that roof over your head...keep positive and keep looking.

I agree with Kirstin and jyearta, B complex are called the happy vitamins. Worth looking into.

Cint, my heart bleeds reading your message. I simply will never understand why, family will not put their BEST foot forward to try understand what it’s REALLY like living with E I am so sorry....no judgment here, thank the good Lord we have each other. Hugs.

Dear Chaz

I have to say thank you so much for your kind words of support! I can deal with my epilepsy anytime, as we all know it's a case of having too, but why of why can't the people around me, my friends and family, employers, etc?

It was good to see that you understand how precious a place our homes are! I love mine, but it is full of conflicting memories, sometimes it's my sanctuary and others a prison, but the thought of leaving, and starting a fresh in a strange town is pretty frightening! Glad you understand that too!!

I've been trying since 2008 to find that ever elusive ideal job, and applying for all sorts of work, but when you are up against thousands of others too, and there's not much work about, it's pot luck, in the UK, you wouldn't believe what you need a drivers license for! onder:

I'll maybe try the Vitamin B complex and see if I end up chilled out, although I don't really think I'm a raging inferno of anger, only where my father is concerned, and that, sadly, will never change!! I am just absolutely and utterly terrified, of living alone for the rest of my life, no wonder I'm also having palpitations and chest pains!!! What a mess! X

 

[Chaz1]

Hello Elaine,

Sounds like you are caught in a dammed if I do and dammed if I don't situation. Is there any chance you could rent a small place where you would maybe think of relocating to, just for a month or 2 to test the waters?

I am glad you can handle E, you are one strong lady. I wonder how open you are to ‘others’ about your E. My Son has learnt to be SO open about it to ‘the others of the world’, in turn they seem to be that bit more sympathetic /understanding of his ‘limitations’ and when I say that, bit more understanding if he needs to pull back due to stress / take time off due to seizures etc…

What can be perceived as aggressive is often not true aggressive behavior; I see it with my own Son. It’s more an ‘unknown’ (he does not see it) lowered agitation threshold; I believe the meds cause this.

Fear can be such a strong emotion, one that others can pick up on – to easily. There is no reason you should be on your own forever, unless this is what you want…because there is someone for everyone, but you may need to let your guard (fear) down a little….Do you openly express this with your psychologist and he/she is working on this with you? Fear itself could be the very thing that is preventing you from letting go/and or getting what you truly want/need.

 

[Elaine H]

Hello Elaine,

Sounds like you are caught in a dammed if I do and dammed if I don't situation. Is there any chance you could rent a small place where you would maybe think of relocating to, just for a month or 2 to test the waters?

I am glad you can handle E, you are one strong lady. I wonder how open you are to ‘others’ about your E. My Son has learnt to be SO open about it to ‘the others of the world’, in turn they seem to be that bit more sympathetic /understanding of his ‘limitations’ and when I say that, bit more understanding if he needs to pull back due to stress / take time off due to seizures etc…

What can be perceived as aggressive is often not true aggressive behavior; I see it with my own Son. It’s more an ‘unknown’ (he does not see it) lowered agitation threshold; I believe the meds cause this.

Fear can be such a strong emotion, one that others can pick up on – to easily. There is no reason you should be on your own forever, unless this is what you want…because there is someone for everyone, but you may need to let your guard (fear) down a little….Do you openly express this with your psychologist and he/she is working on this with you? Fear itself could be the very thing that is preventing you from letting go/and or getting what you truly want/need.

Hiya Chaz
Yes, I think if you asked anyone who knows me on here they all know how open I am with my epilepsy, maybe too open, I've done a lot of public speaking, article writing, tv and radio,having lost so many jobs because of it, I just feel so strongly about others in the future NOT having to go through this crap, for godsake, it is the 21st Century, and another reason the NHS here in the UK never use the word Epileptic is because of all the archaic horrific links and imagery associated with it, people are terrified of us, and assume of course, that we will all be on the floor with our legs in the air. I was once told I didn't look like an eppy!?!?

Someone with epilepsy once told me, that his doctor told him, he had known of a baby born with epilepsy, and the mother was told "you might as well put a pillow over it's head now" and as epilepsy was grounds for divorce in some countries as recently as the 1960's, we all have a lot of educating to do even today! I've done a lot of research for this book of mine that I am working on, I am so determined to complete it, finish typing it up, it's written long hand, and about half way typed, I'm just such a mess right now, sitting here in this room all day and night is stifling, daddy dear said he would give me a laptop about ten years ago, yeah right dad, like you believe that epilepsy is NOT a mental illness, I still don't think he believes me.

You said about being open, I often think that because I am so open about it, I scare people away, dad thinks I bore people with it, and they don't want to hear about my brain! cheers father dear!

Anyway Chaz, guess what I have just done since we last chatted, I put my lycra shorts on, and in the rain, I jogged to the shop and back for a newspaper! What a great way to release emotions, and after sitting in the house all day in emotional turmoil, I feel a little bit better! Not bad for a middle age bird huh?? Plenty more life in this lady, My dear mum might have left me, but it was her that made and keeps me strong, her and my epilepsy, and of course, the love and support of all the wonderful crowd on CWE!!! Keep it coming guys!! XX:clap:

 

[Chaz1]

Oh, very interesting ... Your book is about E? Or secret? Its written though, wow!! Its actually written!!! Hats off!

keep shouting from the E rooftops please I sure as hell never going to get bored of info on E.

Sounds like your Dad has strong influence, I say that because mine does too..mine has changed from negative to positive, I started listening to him and well, that’s because he makes a lot of sense, but that’s my Dad...not all parents give good guidance/advise (don’t care how old we r, if we got parents alive they generally influence our lives coz we love them, me 48)

time to train for marathon young lady?

 

[tinathesingergirl]

Elaine, I know how you feel. I too am on the same dose as you with the keppra. I too take a b-complex it does help to counter act the kepp-rage. I take toppamax in addition to that as well about 400 mgs a day so not sure which is worse....I think the topamax makes me grumpier than the keppra ever did frankly and since I have lost about 50 lbs since I started taking the topamax about a year and a half ago I can definitly see a change in demeanor. I continue to lose weight on the topamax I am going to talk to my doctor about it to see what he says not that I mind losing the weight I still would like to lose a little more...I was about 175 when all this mess started with seizures and I'm only 5'2 and now I'm at about 140-135lbs which is quite a bit healthier weight wise. I too feel like I am driving people away and sometimes feel like I need to be on another drug to take care of my emotions but dont like that alternative.......what to do????

Tina

 

[jyearta]

Elaine, I feel so for you in all the things you are dealing with.

I can relate to you in the that parents would not admit there was something wrong with me and get me to a Dr.
My Mom would put me in closet, and tell me to stop. n
It was only when I got married and 3 days later my husband had me at a Dr. then I was transfer to Atlanta.
When I called my parents to tell them I was diag. with E. They got mad at me.
My husband went to them and told them that had better not treat me bad.

 

[Cint]

I can relate to you in the that parents would not admit there was something wrong with me and get me to a Dr.
My Mom would put me in closet, and tell me to stop. n
It was only when I got married and 3 days later my husband had me at a Dr. then I was transfer to Atlanta.
When I called my parents to tell them I was diag. with E. They got mad at me.
My husband went to them and told them that had better not treat me bad.

How outrageous! Good for your husband to stand up for you like he did! I hope he locked them in their closet for life!

 

[MuayThaiFighter]

Sounds like your going down that road that seems to catch you at the worst times. You aren't alone, I feel ya on this. I know that keppra made me a lot more hostile and I hated it. I saw videos of myself before my seizures, I just don't feel like me. But what can we do? If they stop the seizures then that is great, but sometimes the rage does come from the lack of people not "getting it". Don't let this get to you, it seems impossible at times. But you stated you just don't want others going through this hell of being lableled as something they aren't more or less. I totally relate, and still struggle to understand how this happens with so much advancement in education.

I wish the best for you, and everybody else who has to deal with this.

 

[Eve]

I am in 1500 mg of keppra and hate it. Now I am on 75 mg of Zoloft to deal withe rage. I think he may move me up to 100mg of Zoloft next week. The Zoloft does help but I wish I did not have to take it. I do take the Vitamin Bs but it only helps a little. Good luck to you and all and hope you find the road to healing and peace.:e:

Just wondering which Keppra do you take....The brand Keppra of generic of Keppra XR or the Generic??? I am thinking of switching the Brand Generic is costing me 250 a month since my Cobra expired.

 

[knothing]

3000 mg of Keppra per day. At first I took 100 mg of B6 to counteract the side effects and it worked of the 'rage'. I have stopped taking B6 but I worked very hard on learning to keep myself calm. The control is not 100% effective but close enough. The times where I cut loose the rage are eventful and are hard to explain. People have little ability to understand that I am doing my best to maintain control. I do have another issue with Keppra...... I cannot have any caffeine at all. It just intensifies the 'rage' and make my heart race. I had to be put in the hospital for 1 day just to make sure I did not have a heart condition.

I know how you feel about a home being a prison. Everyone at my work was so jealous of me working from home and they all love the concept. I absolutely hate it and every time I have to work there I just want to scream and run out the door. It can be a real tormenting experience at times.
Elaine here is a thought (might not be a good thought). If your house is big enough maybe you could get a person to rent out a room. Granted that can be a risk but it does provide a person to be around at times and you can choose the person or persons.

 

[Nakamova]

Lainey, I hope you can get through this bad time with your dad and your friend. It's too bad they can't get a taste of epilepsy or of Keppra so that they can truly understand what you have to put up with. I'm glad you have the psychologist to back you up, and of course you have us too. I hope things take a turn for the better in 2013.