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lilbit82

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Hello, Growing up i watched my mother have seizures so bad that as an adult i hated to hear the sirens from ambulance because i heard them coming to my house so much as child. A year and a half ago i had my first seizure. I was working a job that demanded alot of hours and i was getting very little sleep. I went to the doctor seen a nurologist after some testing they determined that i had the seizure due to being sleep deprived. Well a few days ago i had my second seizure. I am not working the same job i am not under alot of stress so i do no know what caused this one. I went to see my family doctor and he said i was now considered epilepic since i had more than one seizure. He perscribed me two medications one is dilantin and one is keppra . He told me that i could choose what one i wanted to take. I dont know what one to take or if i should take any medication at all since i have only had two seizures. I am so scared of the side effects of the medications i dont want to loose myself due to the medications Please if anyone can give me any advice or encouragement it will be greatly appreciated.
 
Lack of sleep and being depressed are two major seizure triggers for me. I try to be in control of both of those things as much as I can but sometimes that just doesn't work.

I'm allergic to Dilantin so I really can't give you too much advice about that one. I am on Keppra and the only problem I have with it, and many other people do too, is that it makes you angry. The nick name for it is Keprage.

You can try one of the meds and see how it works for you. If it's not working or if you have any side effects from it that you can't handle you can always change to another med. It will probably take at least a month or two to see how you react to it so you're not going to know right away.

Nice to meet you!
 
It is very nice to meet you too! I have already learned so much from this page. So very glad that i found it. Thank you for you thoughts on the medication.
 
Hi lilbit82, what type of seizures are you having? What tests did your neurologists run? An EEG?
 
Hi Brandi, I am having granmal seizures. After the first one they did an Mri, an one hour eeg and then a 24 hour eeg. The results of the mri came back normal. The one hour eeg came back showing alittle change in my brain waves when they flashed lights. The 24 hour eeg i never got the test results from. For some reason the place that i had the 24 hour eeg done never sent the results to my doctor.
 
How frustrating! I hope your doc can submit a request and get them. As for the two meds I've been on both and I didn't do well on either (Dilantin made my seizures worse and Keppra made me really depressed) so I can't offer any advice. Currently, I'm on Topamax and Vimpat and moving towards surgery if the tests find me a candidate. I guess it's a trial and error regarding meds. I'm sorry about your mom and what you had to grow up with. My youngest daughter is 17 and still at home and I feel bad for her sometimes. Although we don't have much contact with emergency personnel, she sees a lot of cuts and bruises as a result of my nocturnal seizures. Just remember that you are strong and you will get through this! :)
 
Wow. So many people who have had dilantin find it bad (or not so good). Me, best that I remember, dilantin has been my best! Well the affects i had to deal with was almost none... i like that. Problem for me is i had to take too many and still had seizures. But then again for me seizures for me just won't quit. Well, lilbit82, I do hope all goes best for you here whatever choice you make.
 
Dilantin was the best for me at 300mg/day. I took the EXT could take it all at night when I went to bed. This way I didn't even think about it or my problem. It seemed to help with my memory and brain function. Wasn't until started seizures again 6 mths ago. Now they have added keppra. I would love to go back to the days of taking Dilantin 300mg / day. Could not handle 400. the way I feel today. I loved Dilantin.
 
My mom took dilantin for years with out any problems until it started to not work for her anylonger. When i seen my family doctor he said that keppra was safer than dilantin i Get to go to the nerologist on august first so i am not going to start taking anything until i talk to her. I find i am comparing myself to my mom alot she was so isolated and had no independance. I dont want to be that way i am a very independant person i have worked since i was 16 i am 31 now. My husband has the greatest intentions but he wants to do everything for me. I am so scared of loosing my freedom and indepenance.
 
lilbit82 said:
I find i am comparing myself to my mom alot she was so isolated and had no independance. I dont want to be that way i am a very independant person i have worked since i was 16 i am 31 now. My husband has the greatest intentions but he wants to do everything for me. I am so scared of loosing my freedom and indepenance.
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I truly understand your being afraid o losing your independence. One of the issues I have been dealing with. I live alone now. I've worked at the same place for years. They have moved me to 2nd shift. The plant Dr put me on all kinds of restrictions. I lost a job in the past because of this. My family I feel is better off if I just don't talk about it. Last week tried to call my mom and talk and from her "suck it up and get over it". I keep my independence some of which I probably shouldn't because I don't want to become a burden.

My neuro said the same about Keppra. She said it was known as a "clean drug" Right now I just hate the way it makes me feel. But because of issues at wrk and I have no one else to lean on I am telling myself. I will get use to it and I guess like my mom said. Trying to suck it up and get over it. I just REALLY long for the days of feeling like I did when on 300 Dilantin. I was a happy person which today I'm not.
 
I couldnt imagine some one saying suck it up and get over it espcially my mother. I am the type of person and always have been if i am not happy i do everything in my power to make myself happy. Have you tried getting a second opinon or seeing if there is a different medication that will be better for you. I know that i am new to this and new on here but stay strong and fight for your health and happiness. Feel free to message me anytime
 
I'm having problems with keppra-rage...My mother said that I am losing friends and family. I am having severe problems with it, but alas, I have had problems with dilantin, tegretol, valproate, and lamictal.

For me, valproate made me nicer, but fatter and caused severe stomach pain.
Lamictal and tegretol caused allergic reactions.
Dilantin caused gingival hypertrophy (gums bleeding).

I was dx with partial complex seizures all my life from childhood, but now they say I have generalized seizure per EEG.

Has anyone ever had seizure type change???
 
lilbit82 said:
I find i am comparing myself to my mom alot she was so isolated and had no independance. I dont want to be that way i am a very independant person i have worked since i was 16 i am 31 now. My husband has the greatest intentions but he wants to do everything for me. I am so scared of loosing my freedom and indepenance.
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I know the hardest thing for me is not being able to drive. All of my friends live about 45 minutes away, have jobs and families. If I want to do something with just them, not including my husband, I have to wait until they can come and see me. We can't just meet up to go shopping or have lunch together like we used to.

I have to try to make my time schedule around everyone else's. Dr appointments, going to the grocery store and that type of thing. When I do get out I make the most of it. I get yelled at (might be putting that a little harsh) because I'll spend a lot of time talking with people. I went out with my dad tonight and spent about 15 minutes talking with the guy that worked at the coffee shop. I had him laughing the whole time so it was pretty good.

My family is very helpful in getting me places so it really isn't that bad. I've learned to deal with it. There's just a lot of times that I wish I could run out and do the things myself.
 
lilbit82 said:
Hello, Growing up i watched my mother have seizures so bad that as an adult i hated to hear the sirens from ambulance because i heard them coming to my house so much as child. A year and a half ago i had my first seizure. I was working a job that demanded alot of hours and i was getting very little sleep. I went to the doctor seen a nurologist after some testing they determined that i had the seizure due to being sleep deprived. Well a few days ago i had my second seizure. I am not working the same job i am not under alot of stress so i do no know what caused this one. I went to see my family doctor and he said i was now considered epilepic since i had more than one seizure. He perscribed me two medications one is dilantin and one is keppra . He told me that i could choose what one i wanted to take. I dont know what one to take or if i should take any medication at all since i have only had two seizures. I am so scared of the side effects of the medications i dont want to loose myself due to the medications Please if anyone can give me any advice or encouragement it will be greatly appreciated.
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I've always been on Tegretol. 800mg a day for about 20 years. In the last year the doctor has added Lamotrigine and Keppra. I have been battling depression for a while but one of the 2 meds was making it worse. The epiletolgist decied it was the lomotrigine since I've been on it the longest. So I began my slow decent off the lomotrigine and started 300mg of Dilantin. I know with Dilantin you can start at the max dose without rampping up to the desired dose. I'm not sure you can do the with Keppra. I have always rampped up or down on Keppra. Did the doctor give you a schedule for starting the Keppra?
So I guess it boils down to do you want thick bleeding gums. Or do you want to be mean all the time. :) Everybody handles the side effects differently and you wont know untill you try it. yes I have days on Keppra when I just want to kick the dog. Its not every day and I just try to stay out of situations that could bring on the Kepprage. Untill I come off the Lomotrigine I can't tell you for sure that the Keppra is causing my Depression.
Good luck on which ever you decide.
 
Well, my seizures started when I was 23 years old and was first married. At first they started as CP seizures and then one morning while coming out of the shower, I had my first TC seizure. I suffered 2nd and 3rd degree burns and was in the hospital for 2 months. After recuperating from the burns, my husband accepted a job 1500 miles from home. At the time, I was taking Dilantin and that controlled the TC seizures. I had some CPs. After being married two years, we had our first child and the seizures were still pretty much controlled. Three years later, we had our 2nd child. After he was born, the seizures started to increase. The dr. added Tegretol but that didn't work and we tried Phenobarbitol. I had an allergic reaction to it. At the time there weren't many other medications on the market (this was back in the 80's), so my neuro suggested I have brain surgery to help control the seizures. We went thru all the testing ( months worth) and eventually ended up having a left temporal lobectomy. At the time my kids were 6 and 3 years old. By then they had witnessed many CP seizures and a TC. Once they had seen me taken away in an ambulance, due to a bad seizure after I had been sick. So I was hoping the surgery would help. But, it didn't. I was seizure free for 14 months. Then they came back as TC seizures. And my children witnessed them. Their father was gone often because he was a pilot. So since I was away from family and my husband was gone a lot, I had to be somewhat independent to be a mother. But in some ways my kids took care of me and I took care of them. I taught them how to call 911 and friends in case of emergency. I feel it taught them how to be stronger. They both have a college education. My son is finished with law school and will be taking his bar exam in two weeks. My daughter is married and holds down a good job.

And now I live alone, still have an occasional seizure, but I have the VNS, too, after having brain surgery, and trying 11 medications, all to no avail. Keppra is a drug known to cause depression, which I also suffer from, as many people with temporal lobe epilepsy are know to have. I may have lost some of my freedom, like freedom to drive, but not my independence. Education is the key and since you witnessed seizures growing up, you know what they are and what to do. So you CAN still be independent!

As for the drugs, I thought the dr. would have you off Dilantin. It is an older drug. Keppra is one that I take now and does cause mood swings, so beware.

Good luck!
 
Medicine can be frustrating. I was diagnosed with epilepsy 10 years ago at the age of 26. I was unable to have surgery so my neuro tried a ton of different meds then suggested I get a VNS. It has helped a lot with the seizures but I am still having them and they aren't nearly as bad and as often as they were before I got it. I am also taking meds and the neruo is still trying to find ones that will work better for me than the ones that I'm on now.
 
Pita he didnt give me a time frame on taking the medications didnt really explain them either he just said here choose one of these to start taking ... that is why i am waiting to take anything until i see the neurologist atleast she can tell me more about my seizures and what one will be best for me to start out with. Another reason i havent started anything is because i have no money to get them filled. I have no insurance and i only have a part time job so. Heres to hoping things get financially better.
 
lilbit82 said:
Pita he didnt give me a time frame on taking the medications didnt really explain them either he just said here choose one of these to start taking ... that is why i am waiting to take anything until i see the neurologist atleast she can tell me more about my seizures and what one will be best for me to start out with. Another reason i havent started anything is because i have no money to get them filled. I have no insurance and i only have a part time job so. Heres to hoping things get financially better.
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Its a good idea to wait until you talk to the neurologist. Depending on the type of seizure she may not want you on either one. Not every med controls every type of seizure. however if you don't see her for a while My opinion would be to start the Dilantin just because you don't have to ramp up to the desired dose. If this doctor is wanting you to take 1500mg of Keppra twice a day without starting at a low dose then adding a little each week I don't recommend. I understand the no money no insurance thing. Its not easy and meds are expensive. That would be the other reason to take the Dilantin as its much cheaper then the newer meds.
 
Hi lilbit82,
Everyone is different in the way that they respond to medication. I can give you my own personal experience, but it might not end up applying to you.
Dilantin was the first seizure med I was put on after I had my first Tonic Clonic (I previously had simple partial seizures for about 8 years and didn't take meds). But the dilantin wasn't showing up in my blood at all, and it also gave me nightmares and panic attacks. I switched to Tegretol, and later Keppra was added. At one point, I was up to 3,000 mg/day of Keppra, which is the max dose, but once Lamictal was added I was able to come down to 2,500 mg/day of Keppra. I've never had any specific side effects from Keppra. I was already on Tegretol which made me tired all the time, but my body adjusted to that after about a month, and I don't think I got any additional side effects after starting Keppra. So for me Keppra has worked well. But Keppra does have a fairly common side effect which people call "Kepprage" because it can mess with your mood and make you prone to emotional outbursts, anger, or even violence. I thank God that I never experienced that, but there are a lot of people who can't take Keppra because of that.
 
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