When is it enough?

Diseases & Conditions Epilepsy
1
I am new here, but I am at a place that I am sure some of you have reached at some point, and I could use some input. I have complex partial seizures that I was tested for surgery for about five years ago, and I was not a candidate. (I had one grand mal) Since that time I was put on Keppra which has worked very well on those. I also have simple partials that if I just had had one would not be anything, but I cluster and at certain times they they are kind of nasty. I go to an epilepsy clinic and have a great doctor. But for the last couple of years I have felt like I have been sick on these meds every single day - I take Keppra 4500mg, Zongran 900 mg, Dilatin 390mg. I am seizuring some anyway, is there anyone out there who just goes through the seizures just to get off some of these meds? I feel as though they are taking the life out of me. I try to be willing to put up with some side effects, I know there will be some - but I almost think the seizures would be easier. Thanks.
2
Raun,
I agree with you, sometimes the side effects from the meds are worse than the actual condition. I've been on dilantin and pheonobarb for 25 yrs.
Re: Going off some of the meds. I strongly think that you should consult a Doc. first.
 
Have you asked your Doc. about the affects of Long term use of the meds? Do you drive? Have you considered the affects it could have on your driving and the risk you would be putting yourself into?
It would not be wise for you to be willing to have seizures just so you don't have side effects from the meds. VERY DANGEROUS.
 
Randy (ontario)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

3
Randy,
Thank you very much your replies. I would not do anything with my meds without talking to my doctor. My doctor is a great guy and I know he is doing his best to stop to stop the seizures and have as few side effects as possible but I seem to break through whatever level they have me at. I just can't see taking any more increases - these simple partials are coming no matter what and I have been through a number of drugs. It will just have to be something I ask him about.
I do have a license, although I don't drive much - and that is a good point, thanks!
4
Ruan...
 
Welcome :-) ... I also have Complex partial, and I am currently researching surgery... I am also on Zonegran and Keppra...
 
WOW... I dont know that just seems like such a high dose of both meds... I dont know, I am just going to repeat what I was told by different docs in the past year about the meds
for one Usually about 1000mg is a good dose for Keppra....because it is considered and add on
secondly...Zonegran.. I was told the max dose for that was 400mg...
 
I mean, I am not a doc, I am just going by what my docs told me.... I know from being on meds for 15 years, and changing and experimenting for so many years and so many different types in the past 6 years I found sometimes the higher the dose... the more seizures I was having.....I know it sounds strange, but it happened.....
 
Did your doc ever consider, lowering the dose, and maybe switching to a different add on.... You obviously have had this problem a long time also and know lack of sleep and stress bring on problems too...
 
I know the Zonegran keeps me up at night... So I take it early in the evening... Docs tell, it cant be true... that it makes people tired... Well ... I told him to come over my house.. and see cool .....
 
I was put on Ambien for a while... And I was also, one of the few patients that, when I take it, it keeps me up at night.....
 
My point.... I know.. Im blabbing again !!! :-) ,,..... Sometimes you have to tell the doc... what you need ....
 
Keppra, makes me a wild woman....I am only on 750mg a day, and like you .... I told my husband today that I am lowering my dose, because , I need to know if it is the Keppra, or I am just going totally insane on my own.....
 
Then I stopped, and thought about it and said, i better take my med...... I will tell you though,  I seriously thought about just stop taking meds......
 
I drive also, If I feel the least bit tired ... I stay home.... But it is so darn scary,,,, when you see a car accident and wonder if it could be you next time......
 
I hope you feel better.....
 
We will get through this !!!
Ohh... nosey me...Did the docs tell you why you were not a candidate for surgery ???
 
Did you ever look into the VNS...
 
Have a good one....
 
Dor :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

5
Hi again...
 
You know. I couldnt rest until, I checked my book about the meds... I know my doc told me the max for the Keppra would be 1000mg for me anyway... but I checked out my book I have.. a book about Seizure disorder and info... and it said the average dosage for Keppra for adults was between 1500mg to 3000mg a day.... I just wanted to put this info in......I guess my memory is worse than I thought !! :-) .... Nah... I know he said 1000mg for me... everyone is different anyway :-) ...
 
feel good
Dor :o)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

6
Hello,
Just wanted to say I take Keppra only. 1000 MG daily. I do have problems with mood swings and rage, but I really try to control my feelings. I don't want this drug to get the best of me. I am actually wondering if my neuro will bump me up to 750 MG at night time. I still seem to have most of my activity during the night. You are on a much higher dose of Kep then I am on and you are also on another AED so it is hard to compare. I hope you are feeling well, Take care, Tracy

[color=purple>Tracy</FONT>
<FONT]1000 MG daily Keppra[/color]

[color=gray>&]

<FONT color=gray>Wishing Joy to the world[/color]

7
The side effect that is really getting to me is that I just can't seem to stay awake. I get home from work and I am done - my family gets nothing from me at all. I feel bad about that.
8
I think that will wear off in time. It took me 6 weeks to adjust and I am only on 1000MG daily. It was my first AED ever and it is a shock to the body when you put drugs like that into your system. Kindly explain your situation and i am sure they will understand. After my first Grand mal I slept for about 2 weeks. Take care, Tracy

[color=purple>Tracy</FONT>
<FONT]1000 MG daily Keppra[/color]

[color=gray>&]

<FONT color=gray>Wishing Joy to the world[/color]

9
That is a horrible feeling .... I think I slept for 2 years ... I can honestly say... before last Feb... I was out of it for the 2 years before that... I was on different meds though... I was on the couch, I dont even remember what went on in those 2 years....
 
That is when I made the decision to change meds.... It stinks.... How many times can you change meds, and find you still have seizures.....Its scary.... confused ....
 
I hope you feel better soon.... All we can do is hope for the best at this point, and take care.... keep on talking,and asking the doc questions, and maybe you will find the answer soon .....
Dor

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

10
Hi Raun,
If you are considering changing meds. I would check to see what permanent damage (if any)the existing meds have had on your nervous system AND you might want to check out this little tidbit of info. I rec'd from my Doc. If you change meds after long term use of other AED's you run the risk of damage to the lower brain stem. Check it out carefully with your Doc. as well as the side effects, then decide "is it really worth it?"
 
If it's not broke, why fix it. Maybe you just need the doseage changed and monitored better.
 
Randy

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

11

Hi, I have been with this site for a few yrs now, but I have had colitis and usually post there.I also have epilepsy, partial complex also.I have had them for @ 14yrs. Theyhave no reason why I just had a granmal went to the hospital and ever since I have probably 1 granmal a year and for the last 3 yrs have been batteling the med thing myself. This time I have been on 1200mg of carbatrol for @ a year now, and still keep on having seizures.I finally got a doc who is sincerly interested in trying to get me to not have any, so he adds and takes away. Right now I an 1200mg of carbatrol and 100mg of lamictal??? its a new med he said. It has phenabarbatol in it. Well I started this one around xmas and on xmas day I had 3 seizures..... Very strong partial complex. I think I get the same feeling after one of theses as I do after a granmal. I had 3 yesterday in the morning, and I felt like crap all day. Its nice to know there are other people who go through what I do and who drive. Do you think we should not drive??? Can you feel yours coming? Alot of people get mad when they know my cituation and then find out I drive. I don't know....I have not had one in the car.

Any way I could go on forever...........   lots of hugggggggggggssssssssssssss............................

                                                                                              michelle

12
Hi Michelle,
I can't believe that you're still driving while you're still having active seizures, and that your Doc. has never suggested to you to give up driving.
Do you realize the risk you're taking? Not to mention that if anything were to happen, as well as injury or death to youself or others, if your insurance Company found out that you were driving with an active seizure condition, they would not cover you. 
 
BTW, I also have colitis and epilepsy and it's difficult to find the right coctail of meds without them going toxic in your system.
 
Randy (Ontario)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

13

First I want to say hi to Randy....I have talked to you on another site, I think.

As far as driving, I have always stayed concience while having these seizures. Meaning I don't convulse.Most of the time I am able to sit down.This is why he says he has a hard time treating mine.They are more like a very, very strong "desavou"(not sure how to spell that one). The granmal ones I have always had in my sleep, and I wake up in the hospital or at home with everyone around me and my mouth bloody. I am sure some can relate.

This driving thing.... The first time I had a granmal and was taken by ambulance to the hospital, I had my licence suspended.After a review and cosult with my docter I got it back. So it is not like they don't know.... I am just very careful!!!! If I was ever to get that feeling or taste I would pull over!!!!! For the most part I am on disability right now because of developeing arthritis due to my other disease and have since had major surgery to correct the colitis...(illeostomy) so needless to say I don't drive very much right now.

Thank you for your concern it was well taken.....

hugggggggggggssssssssss.......................

                                                michelle

14
I, too, am very careful about the driving situation. When I was having the complex partials I never drove at all unless I had met the state requirement without seizures. With the simple partials I am legal to drive but I choose not to for the most part. I fell asleep after work again this afternoon and woke up long enough to spend 45 minutes with my son before he went to bed. I am very lucky to have a great support system, but I feel so bad when that happens...that kid deserves more of me than that. It is one thing for me to deal with these meds but to make a child go through it is very hard. I will be talking to the doctor soon, I just need to hang on I guess. It has been nice to find this forum...at least it is a place to kind of dump it out. Thanks!
15
michbud said...

First I want to say hi to Randy....I have talked to you on another site, I think.

As far as driving, I have always stayed concience while having these seizures. Meaning I don't convulse.Most of the time I am able to sit down.This is why he says he has a hard time treating mine.They are more like a very, very strong "desavou"(not sure how to spell that one). The granmal ones I have always had in my sleep, and I wake up in the hospital or at home with everyone around me and my mouth bloody. I am sure some can relate.

This driving thing.... The first time I had a granmal and was taken by ambulance to the hospital, I had my licence suspended.After a review and cosult with my docter I got it back. So it is not like they don't know.... I am just very careful!!!! If I was ever to get that feeling or taste I would pull over!!!!! For the most part I am on disability right now because of developeing arthritis due to my other disease and have since had major surgery to correct the colitis...(illeostomy) so needless to say I don't drive very much right now.

Thank you for your concern it was well taken.....

hugggggggggggssssssssss.......................

                                                michelle

Hi Michelle,

Unfortunately, There's always a first time.

That's exactly what happened to me. I went 23 yrs seizure free and I was of the strong opinion that if I were to have an "aura" or get that feeling just before a grande-mal, I would be able to pull over in plenty of time, but since found out that it's like playing Russian Roulette, I was fooling myself. I had a minor incident in a parking lot and as a result, I had my licence suspended.I still drove for 2 yrs but I was just lucky that nothing happened. After driving my whole adult life and then having my licence stripped away, I felt like part of my freedom was taken away. It could happen at ANY time and you won't have time to pull over. So again I ask you is it worth the gamble?

Did you hear about the lady in Florida last week that had a siezure while driving and her licence was under suspention for medical reasons?

She drove her SUV through a school bus drop off area and hit some kids. (not sure how many were killed)

As well as facing criminal charges, she will be living with this guilt for the rest of her life and never be able to get insurance.

I'm sorry but I have a problem with people who have a KNOWN seizure condition and continue to drive and then there's me who has a siezure condition that has been under control for 25 yrs and I've had mine suspended. To me that seems very irresponsible.

I am also on disability for my epilepsy and ulcerative colitis so I really don't need to drive but I'd like to have that freedom again.

Randy (Ontario)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

16
Minnie,
Please email me at
Rocking4Epilepsy@Yahoo.com
 
Thanks
 
This is a support group and hopefully we can all get along

Post Edited By Moderator (Rocking4Epilepsy) : 1/13/2005 6:26:26 AM (GMT-7)