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Hi, I was just diagnosed with partial epilepsy & need advice
Hello, I am a 56 year old woman & newly diagnosed & would like to talk with others with my conditions. I suffered a traumatic brain injury in 1987. My nuerologist said he thought I have been having seizures for 25 years. They are non convulsive seizures, I just sit & stare for a split second. He put me on Keppra which I did not tolerate well. I took it for 3 weeks, I stopped 2 weeks ago & am still having extreme anxiety & nausea. I will start taking Oxcarbazepine as soon as I am feeling better.
I was wondering how you feel on the meds. I'm scared. I don't like pills. I have a bad liver from hep c (I treated last year successfully) I was wondering if any of you have tried medical marijuana for seizures? I used I during my drug treatment last year for nausea, it worked great.
ANY advice is appreciated!
Kitty
I was wondering how you feel on the meds. I'm scared. I don't like pills. I have a bad liver from hep c (I treated last year successfully) I was wondering if any of you have tried medical marijuana for seizures? I used I during my drug treatment last year for nausea, it worked great.
ANY advice is appreciated!
Kitty
Best Answer
I will ask my neurologist about the VNS.
My 82 year old mother has been driving me around & it is very scary.
I want to have a normal life. I slept for the last 25 years from having hep c. I was cured a year ago. I had to take several naps a day, or, when I worked I would sleep the entire time I wasn't at work. For the last year I got to be awake during the day.
My doctor took me off the meds because I had terrible side effects. Really bad.
I need to pray about this.
My 82 year old mother has been driving me around & it is very scary.
I want to have a normal life. I slept for the last 25 years from having hep c. I was cured a year ago. I had to take several naps a day, or, when I worked I would sleep the entire time I wasn't at work. For the last year I got to be awake during the day.
My doctor took me off the meds because I had terrible side effects. Really bad.
I need to pray about this.
Rhonda,
Don't just stop taking your seizure meds without talking to your doctor. If you just stop your seizure's can get worse. I have had allot of neurologist tell me that every seizure a person does have damages the brain some. How much I don't think anyone can really tell. I have been so medicated that I use to sleep almost 18 hours a day, and as you said been an emotionless zombie. Talk with your neurologist about possibly getting a vagus nerve stimulator (VNS) implanted. It is another tool or way if you will, of helping control seizures.
Don't just stop taking your seizure meds without talking to your doctor. If you just stop your seizure's can get worse. I have had allot of neurologist tell me that every seizure a person does have damages the brain some. How much I don't think anyone can really tell. I have been so medicated that I use to sleep almost 18 hours a day, and as you said been an emotionless zombie. Talk with your neurologist about possibly getting a vagus nerve stimulator (VNS) implanted. It is another tool or way if you will, of helping control seizures.
I only took keppra for 3 weeks before my doc took me off. I lost interest in my two favorite tv shows! I've been watching Dexter for 7 years and the finale was last week. I tried to watch it & I could not follow or care enough to try to understand. Same thing with my soap opera The Young and the Restless. Every since I did the hep c treatment I have to force myself to open a magazine. It made me have no interest in reading. Drugs make me an emotionless zombie. I don't wanna be a zombie...
My liver & brain are the only organs that are damaged. I had hep c for over 10 years & it damaged my liver to stage 3 fibrosis. My neurologist told me all of the anti seizure meds are extremely hard on the liver. If I take them I probably will need a liver transplant. If I don't take them I could get dementia and not suffer from the side effects. It seems like my only option is to try this oil.
When I was taking drug treatment to cure hep c, it almost killed me. I was in bed for 6 months crying, sick, extremely suicidal which is the #1 cause of death from that drug treatment. So, I am scared to take drugs that I KNOW are going to make me go crazy AND destroy my liver. I really need my liver! I was sick for 10 years before I got properly diagnosed with hep c. Now my liver is functioning great. I eat all organic, raw, whole foods. I'm a health fanatic & I am in unbelievably good shape. That is what is so weird about all my health problems. I look so healthy but I'm damaged.
I took keppra for 3 weeks, oxcarbazaphine for 1 week. I don't think that could do that much damage. My liver is screaming "stop trying to kill me"! It feels different since I took the oxcarb.
My 82 yr old mom is driving me & it is scary!
When I was taking drug treatment to cure hep c, it almost killed me. I was in bed for 6 months crying, sick, extremely suicidal which is the #1 cause of death from that drug treatment. So, I am scared to take drugs that I KNOW are going to make me go crazy AND destroy my liver. I really need my liver! I was sick for 10 years before I got properly diagnosed with hep c. Now my liver is functioning great. I eat all organic, raw, whole foods. I'm a health fanatic & I am in unbelievably good shape. That is what is so weird about all my health problems. I look so healthy but I'm damaged.
I took keppra for 3 weeks, oxcarbazaphine for 1 week. I don't think that could do that much damage. My liver is screaming "stop trying to kill me"! It feels different since I took the oxcarb.
My 82 yr old mom is driving me & it is scary!
Hi Rhonda! Geez you really have had it hard haven't you. Sorry to hear all that. If you do go off the tablets suddenly and not continue on them, then there will more than likely be a chance that you will never be able to control your epilepsy at all and so that will mean all your independence will be gone and you will have to rely on other people but you will not want that and it will frustrate the other people as they will know that there is something you can do about it and that is to take medication. I know taking medication is a horrible thing, trust me, I hate it. I rebelled against it years ago and the only place it got me was the ICU ward in hospital. I learned my lesson pretty quick after a couple of trips there. Pretty scary when you are 16yrs old and you wake up in the ICU ward not knowing why you are there. I have been told that every seizure you have, you kill off a brain cell but I don't know how true that is. I do a lot of puzzles and read a lot to keep my mind active to make sure I am not going to lose my mind. My advice to you about your medications is to not stop taking them but to either see another neurologist that will be straight forward with you that will look at what else is wrong with you and give you something that won't interfere with anything that you are on now or anything that may make you ill although it is trial and error every time as I have found out. I think my neurologist has been taking stabs in the dark with me to be honest as he has put me on the 4 different types of tablets but I am controlled and I am thankful for that as I can lead a normal life but it still scares me at times and it upsets me quite often like I said. Have you had any blood tests to confirm all your organs are ok from the tablets? I know you said you had problems with your liver so that will show problems but other organs. Just remember you are not alone. xo
Hi Nixie! Thank you for responding. I read dozens of posts on epilepsy.com by people who could not tolerate the meds & they are taking an oil extracted from medical marijuana & they said it stopped their seizures. There is all kinds of information on a strain called Charlottes Web & it stops seizures and there are no side effects. I have a bad liver. I am stage 3 fibrosis (fatty liver) stage 4 is cirrosisis. Keppra almost killed me. I still haven't recovered from that. I took oxcarbzephine for 1 week & same thing! I need the CBDs in mj not the THC which is what messes up the meds. Please, Please stay in contact with me! I'm so scared! My liver hurts from taking the last drug. I did a drug treatment for Hepatitis C that almost killed me and the mj helped tremendously.
I got rear ended by a semi going 60 mph while sitting at a red light which resulted in a traumatic brain injury. That is what caused my epilepsy. My Dr told me I've probably had it for 26 years. What will happen to me if I don't take the meds? More brain damage? Dementia? What are my chances of it progressing to gran mals? I'm so scared I'm crying.
Thank you for responding.
Rhonda
I got rear ended by a semi going 60 mph while sitting at a red light which resulted in a traumatic brain injury. That is what caused my epilepsy. My Dr told me I've probably had it for 26 years. What will happen to me if I don't take the meds? More brain damage? Dementia? What are my chances of it progressing to gran mals? I'm so scared I'm crying.
Thank you for responding.
Rhonda
Hi Kitty! Like Flipper, I have multiple types of seizures which is classed as Generalised Epilepsy. So there is no way out of it but to take tablets for it. I don't like taking them either. I have been taking them since I was 7yrs old and have been on so many different ones and my neurologist has now got me on 4 different types (Epilim, Lamictal, Topamax & Keppra). I have found since going on the Keppra (as I didn't go on all these at the same time), I have had many changes in myself. I am now feeling the cold worse for about 10 mths out of the year. So I feel like a freak when I am out sometimes. I am feeling more lethargic, irritable, get upset easier, I could go on for a few more things but you get the picture. But also like Flipper said, mj is not the way to go as it can have an effect on the tablets you are on. They can muck up the dosage of what you are supposed to be having just like certain other tablets you can get over the counter. I have grown to live with this over the past 27yrs but at times I still get scared, angry and also feel alone as I don't feel that I have anyone to talk to about it cause I feel that their is no one that knows what I am going through. But there is, you only have to look at yourself, Flipper and myself. We all know what we are going through. We have support.
Thank you for responding. I've been on the new drug for 5 days. So far I'm ok. I started having more seizures when I quit taking Keppra. How do you know about mj ? Just wondering. I was wondering if it was harmful. I weaned myself off of lorazepam with mmj. I use it for nausea & sleeping.
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I understand what you are going through. I have multiple types of seizures and it is scary. I have been on allot of medication to try and control them. Keppra was one of them, if I remember correctly I maxed out on the dosage and had to be put on another one. I also hate taking pills but that is just another thing I had to get use to. Oxcarbazepine does not sound like one of the medications I have been on over the years, so I can not tell you about that one. I do not recommend smoking marijuana along with your seizure medication. It could effect how effective the drugs work. Keep in mind that you might have to try multiple types of drugs to find the correct one or ones that work for you. I know you are scared but you are not alone.