Grumps
07-03-2003, 12:22 PM
Hello all
I have been suffering from E since I was 17 (Now 32) I am from the UK and we have recently had a new drug put on the market from the US called Keppra which is being called the 'new wonder drug' I have been on Sodium Valporate for 12 years and my szrs have yet to be controlled I suffer from 'Catamential Epilepsy'- for the boys that means linked to my periods.
I have now been on Keppra for 3 weeks and my dosage is slowly being increased to 1000mg twice a day, my Sodium Valporate has been stopped.
Has anyone out there any experience with Keppra??? any info and feedback would be great
Thanx
xx
I have been suffering from E since I was 17 (Now 32) I am from the UK and we have recently had a new drug put on the market from the US called Keppra which is being called the 'new wonder drug' I have been on Sodium Valporate for 12 years and my szrs have yet to be controlled I suffer from 'Catamential Epilepsy'- for the boys that means linked to my periods.
I have now been on Keppra for 3 weeks and my dosage is slowly being increased to 1000mg twice a day, my Sodium Valporate has been stopped.
Has anyone out there any experience with Keppra??? any info and feedback would be great
Thanx
xx
Sponsor
bbbbb
07-03-2003, 12:37 PM
keppra seems to have controlled my seizures very well, that is nice. However, I have a big problem with the side effects. I have been a lot more drugged feeling since I started taking it, my coordination has gotten worse, and i notice myself using the wrong words for things quite often. It's a very mixed blessing!?!
curse
07-03-2003, 12:54 PM
I have been on Keppra for more than a year. Prior, I averaged 5-6 seizers a year. I have tried many drugs & always had dilantin along w/ others. This year I weaned off the dilantin, due to it's effect on my liver & the combo effect it was giving me w/ Keppra. I am now only on Keppra taking 3000mg a day. I have only had 2-3 very mild auras since on Keppra.
Together w/ a low dose of dilantin they had me sleeping all day. Now I don't need my naps.
The first few months on Keppra had me not only more tired, but a hair bit grumpy too. Depression is one of the side effects Keppra has that I hear a lot about. Not so for me though. For me it's a wonder drug.
My neuro. offered to do the paperwork to get my license back. I haven't driven in 10+ years. So yes, for me Keppra is wonderful.
Together w/ a low dose of dilantin they had me sleeping all day. Now I don't need my naps.
The first few months on Keppra had me not only more tired, but a hair bit grumpy too. Depression is one of the side effects Keppra has that I hear a lot about. Not so for me though. For me it's a wonder drug.
My neuro. offered to do the paperwork to get my license back. I haven't driven in 10+ years. So yes, for me Keppra is wonderful.
KittyMom
07-03-2003, 01:51 PM
I was on Keppra for a time. It wasn't the "wounder drug" for me. I had some severe depression, mood swings, and thoughts of suicide. I was out of control. My husband, my kids, and my parents wanted to divorce me. My husband said that I was EVIL! It didn't do well with me but that doesn't mean it will do that to you. There are lots of people who take it and are doing quite well. I hope it works for you!!
I used to live in England. Four years with the military. The US military and it was my husband not me. I miss it there. Quite expensive there but so nice. My best friend still lives there. We lived in Mildenhall/Lakenheath. Near Bury St. Edmunds or Ipswitch(SP). Do you know where that is?? Just thought I would ask! I love the whole lot of ya!
Good luck with your seizure control. Welcome to the board! We have some GREAT people here.
God Bless you,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
I used to live in England. Four years with the military. The US military and it was my husband not me. I miss it there. Quite expensive there but so nice. My best friend still lives there. We lived in Mildenhall/Lakenheath. Near Bury St. Edmunds or Ipswitch(SP). Do you know where that is?? Just thought I would ask! I love the whole lot of ya!
Good luck with your seizure control. Welcome to the board! We have some GREAT people here.
God Bless you,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
mleah2
07-05-2003, 12:24 PM
I think it's important that I speak about my experience with Keppra.
I have experienced uncontrollable seizures lately, so my new neurologist kept me on Dilantin, and at the same time placed me on this 'wonder drug' called Keppra. The first two days I complained about not 'feeling right' but I couldn't put my finger on what exactly was bothering me, so I thought maybe it was just an imaginary thing going on. The third day I found myself growing very aggitated over the most minute thing........then it happened, I became this evil, mean person who started fights and began acting out all over the place. It got so bad that 911 was called in addition to an ambulance. I was rushed to the local hospital since I was unable to speak coherently and at the same time acted irrational and unreasonable. I was experiencing an adverse drug reaction to Keppra. The hospital immediately notified my Dr who took me off Keppra and prescribed xanax XR to keep me calmed down. Within 36 hours I once again became me.I wasn't screaming or acting out at all. When I was told by my partner in addition to a friend how I had acted, I was so befuddled and upset that this so called 'wonder drug' almost caused me to do something that I may have regreted later, in addtion to acting like some 'wild woman', I shudder.
I don't mean to frighten anyone, and if this drug is working for you don't stop taking it, I just think it's important that people talk about their adverse drug reactions, just to caution not only the person taking this drug, but their caretakers too.
I am now taking Dilantin, Trileptal amd neurontin, so far so good.
I wish you well,
I have experienced uncontrollable seizures lately, so my new neurologist kept me on Dilantin, and at the same time placed me on this 'wonder drug' called Keppra. The first two days I complained about not 'feeling right' but I couldn't put my finger on what exactly was bothering me, so I thought maybe it was just an imaginary thing going on. The third day I found myself growing very aggitated over the most minute thing........then it happened, I became this evil, mean person who started fights and began acting out all over the place. It got so bad that 911 was called in addition to an ambulance. I was rushed to the local hospital since I was unable to speak coherently and at the same time acted irrational and unreasonable. I was experiencing an adverse drug reaction to Keppra. The hospital immediately notified my Dr who took me off Keppra and prescribed xanax XR to keep me calmed down. Within 36 hours I once again became me.I wasn't screaming or acting out at all. When I was told by my partner in addition to a friend how I had acted, I was so befuddled and upset that this so called 'wonder drug' almost caused me to do something that I may have regreted later, in addtion to acting like some 'wild woman', I shudder.
I don't mean to frighten anyone, and if this drug is working for you don't stop taking it, I just think it's important that people talk about their adverse drug reactions, just to caution not only the person taking this drug, but their caretakers too.
I am now taking Dilantin, Trileptal amd neurontin, so far so good.
I wish you well,
Grumps
07-06-2003, 08:59 AM
Thanks so much for your info - I have been aware of very adverse reactions to Keppra - I had a similar experience with a drug a few years ago (I can't remember what it was called) but I swelled up like Elephant Women within about 48hours. My thoughts are if you react almost immediatly then you are right it is not good for us. I have been on Keppra for 3 weeks and appart from needing a bit more sleep I have been OK so fingers crossed. I am so glad you have found a good conbination that suits you.
Keep well xx
Keep well xx
KittyMom
07-06-2003, 11:03 AM
I guess you don't know where those towns are in England then, huh?
KittyMom
KittyMom
Grumps
07-06-2003, 06:13 PM
KittyMom
Yes I do know where the towns are in the UK actually neither is that far away from where I live (approx 1 hour north of London) - I have been to both and they are very nice with lots to do and see.
I have a quesiton to all you guys from America - how come Epileptics have to pay for medication - in the UK we have the NHS systems which means we get treatment free (we pay for it through National Insurance Contributions - taken on a monthly basis from our gross salary) however, we still have to pay £6.75 per item perscribed. Now anyone with an incurable condition I think there are 3 considered this which are Epilepsy, Diabeties and Thyriod we don't pay for any of our medication - does it really cost you guys hundreds of Dollars????
Yes I do know where the towns are in the UK actually neither is that far away from where I live (approx 1 hour north of London) - I have been to both and they are very nice with lots to do and see.
I have a quesiton to all you guys from America - how come Epileptics have to pay for medication - in the UK we have the NHS systems which means we get treatment free (we pay for it through National Insurance Contributions - taken on a monthly basis from our gross salary) however, we still have to pay £6.75 per item perscribed. Now anyone with an incurable condition I think there are 3 considered this which are Epilepsy, Diabeties and Thyriod we don't pay for any of our medication - does it really cost you guys hundreds of Dollars????
mleah2
07-06-2003, 09:56 PM
It is very expensive to maintain yourself on anti-seizure meds here in the US. Even prescription plans only cover a certain amount of the cost.
My meds cost me about $200 a month, maybe more.
Whats my choice?
Mleah
My meds cost me about $200 a month, maybe more.
Whats my choice?
Mleah
KittyMom
07-06-2003, 10:26 PM
We don't have to pay hundreds of dollars for meds. My husband works for the county and has a medical plan that he pays for out of his paychecks. For the family of 5 he pays $150-$190 dollars a month. We can see the doctor with no co-pay, we get the perscriptions at $10 (no insurance $90), see the dentist $5. The NHS has its flaws also. I remember hearing on the radio when we lived out there that at times people could wait hours and hours to see a doctor. It looks good on paper but has its flaws like anything else. It all sort of equals out at the end of the day.
Check out RAF Lakenheath...lots of fighter jets taking off all the time. If you get the right spot they will pass right above your head and you can see them land. I LOVE IT!!
God Bless,
KittyMom
They all need to have
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
Check out RAF Lakenheath...lots of fighter jets taking off all the time. If you get the right spot they will pass right above your head and you can see them land. I LOVE IT!!
God Bless,
KittyMom
They all need to have
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
Grumps
07-07-2003, 10:05 AM
KityMom
I completly agree with you the NHS system has lots of flaws - the average time I have to wait to see my specialist is 12 weeks which is bad...... - if I went private I would more than likely see the same doctor in a day which is unfair.
and our Accident and Emergency is a different story when I broke my foot it took my local hospital 8 hours to see & treat me which I think is dreadful. I was just shocked at one posting detailing costs of $400 per month for medication. Mind you I pay that in NI contributions each month so I reckon you are right and it is swings and roundabouts
Hope U are well
xx
I completly agree with you the NHS system has lots of flaws - the average time I have to wait to see my specialist is 12 weeks which is bad...... - if I went private I would more than likely see the same doctor in a day which is unfair.
and our Accident and Emergency is a different story when I broke my foot it took my local hospital 8 hours to see & treat me which I think is dreadful. I was just shocked at one posting detailing costs of $400 per month for medication. Mind you I pay that in NI contributions each month so I reckon you are right and it is swings and roundabouts
Hope U are well
xx
KittyMom
07-07-2003, 11:58 AM
I think that as long as doctors expect these outrageous amounts of money for treatments that we all are going to have to pay in one way or another. No system is perfect nor is it ever going to be. We just have to make the most out of what we have.
I had a seizure on the 4th of July and the postictal was 2 days!! I was grumpy and had many auras (deja vus) and had a hard time with the halucination(sp?) thing. I hate this darned "E"! I went 10 days without a seizure. My longest stretch yet!! Well, lets see how today goes!
Hope you are feeling well also.
KittyMom
I had a seizure on the 4th of July and the postictal was 2 days!! I was grumpy and had many auras (deja vus) and had a hard time with the halucination(sp?) thing. I hate this darned "E"! I went 10 days without a seizure. My longest stretch yet!! Well, lets see how today goes!
Hope you are feeling well also.
KittyMom
Grumps
07-07-2003, 12:15 PM
KittyMom
Sorry to hear you have been poorly - hope you are feeling better - I know exactly how you feel regarding szrs I go for about 10 days and get all excited thinking that stuff is finally under controlled and then 'BANG' first I start during the night and beat up my poor boyfriend - or try and get out of bed and do silly stuff like that. then I start spacing out during the day and my work collegues know I have started to 'lose the plot' AGAIN. I get so frustrated but I will not let it beat me and I WILL get control of my szrs.
So my love to you - and eat well - get enough sleep and look after yourself - keep in touch and let me know how you are feeling
xx
Sorry to hear you have been poorly - hope you are feeling better - I know exactly how you feel regarding szrs I go for about 10 days and get all excited thinking that stuff is finally under controlled and then 'BANG' first I start during the night and beat up my poor boyfriend - or try and get out of bed and do silly stuff like that. then I start spacing out during the day and my work collegues know I have started to 'lose the plot' AGAIN. I get so frustrated but I will not let it beat me and I WILL get control of my szrs.
So my love to you - and eat well - get enough sleep and look after yourself - keep in touch and let me know how you are feeling
xx