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alcohol & seizures & trileptal

Sat, 12/08/2007 - 07:58
Hello all, I would like to get some feedback from various people in regards to seizures that I had. It started mid last year, I had a seizure while I was sleeping. I actually didn't realize that I had one, I remember laying on the ground and I felt paralysed and I had scratches and wounds the next morning. In my ignorance, I thought I was sleep walking.... I didn't take it seriously, I thought it was a one off event and that's it... Then a few months later it happened again in my sisters house....while I was sleeping. I drank hugh amounts of alcohol the night before. Again with scratches and wounds on body and face. Had a painful tong as well from biting it. The following week I went to the neurologist and I took a CAT scan. Everything was fine. Then 3 months later I had another one, but this time I was awake and driving in my car. I remember saying to my sister, "Oh my god, I can't see anything". My body got paralyzed, I couldn't move and then it happened. Lucky my sister was next to me and took over the steering wheel. This was on the highway!! And it was the same day my father had a heart bypass. We were driving home after he had surgery. The ambulance came and I regained consciencenous after 10 min or so. Awakening in the ambulance. They took me to the hospital, took a bloodtest...said everything was ok. This happened last year september 20th. Now I'm thinking to myself, "OK, I think it's the Cocaine that's doing this to me. But the weird thing is, I took cocaine 12 days before it happened. I started using cocaine at Christmas 2006. I've done it only 5-6 times starting Christmas 2006 until beginning September 2007 (duration of 9 months). So now I was thinking to my self, "OK, this is serious now". Booked an appointment the following week with the neurologist for a MRI scan and a EEG test. Both were perfectly fine. I even took the EEG test twice, once awake and another where I had to sleep. The neurologist I went to, didn't seem very interested in my problem. He said take Trileptal and come back in 4 months. So after I had a seizure while driving. I didn't touch any drugs whatsoever. However I did continue binge drinking; especially in the weekends. And I didn't take the medication, because I'm thinking to myself; cocaine is doing this to me.... I started drinking heavily since the end of 2006. After the seizure in september 2007, everything was fine for a few months. Although I was getting auras (I didn't know they were auras, when I had them). Still binge drinking in the meantime. So while having these auras, when they happened I could stop them by focusing on something else...like for example shouting.... So a year went past, it's 20 september 2007 (a year since the seizure in my car). I was thinking about it a lot though. It's hard not too. I was happy, a year with no episodes... Then on the 25 or so of September, I was browsing the internet with my laptop in front of me, the same aura came again, I tried to stop it, but this time I couldn't... I was told I was shouting my dads name in the beginning (I can't remember that, was in my dad house). It was only a few minutes later that my father found me convulsing, he said it lasted for about 10 minutes. He tried to restrain me, but he couldn't. When I regained consciousness, a medical team was infront of my eyes. And I was saying to my family, in a blurrish speech: "Who are these people?" I had the worst headache ever and pain in my body. A few days after that I started taking trileptal. Twice everyday; 300mg in the morning, 300 mg in the night. Then I went back to the neurologist after a month. She said it wasn't enough. I had to take 300 mg in the morning and 600 mg at night. She diagnosed me with epilepsy. She had this arrogant way about her, "I know everything and thats it attitude", if I tried to explain my history. She always cut me short and never actually heard me out. I didn't take her recommendation to increase my dosage. Because I know deep down in myself that it's the cocaine and the one time that I took MDMA that were the triggers. And it's probably somehow still in my body. And that the large amounts of alcohol intensified it. That's why I haven't touched alcohol since I started taking my medication. I probably can never drink it again in my life... The medication is helping...haven't had any auras....been taking it for 2 months now, trileptal 600 mg a day. She also said that I have take trileptal for atleast 2 years.. Now what I'm asking you folks, is feedback and your opinions on my situation and whether I should listen to my gut feeling about the medication. I have been reading about negative side effects if you take a dosage that's too much for you. And in all honesty...I haven't experienced and side effect so far. And my life is normal again... Thank for your time. I await your comments BTW, I'm 25 :) M

Comments

Re: Please help!!!! :(

Submitted by crunchyfrog on Sun, 2009-01-18 - 23:01
Are you still looking for comments or answers?  I've been diagnosed with epilepsy for about 14 years, though I suspect I've had it all my life.  About 14 years ago I started drinking every day when I was out of work.  I had my one and only grand mal seizure in my sleep.  It was witnessed by my wife, so I went to the doctor and was diagnosed.  I take 260 mg of Dilanin daily.  Now I seldom drink and try to get enough sleep.   I've done lots of cocaine and other stuff in my youth, but never experienced anything like that grand mal.  I recently had a very powerful partial seizure just from anger, but that's rare for me.  

Re: alcohol & seizures & trileptal

Submitted by rikk on Mon, 2009-01-19 - 12:00

probably would be a good idea to get another doc.  if you don't trust you will not follow instructions.  it is not a guess it is a fact that both alcohol and cocaine had bad effects on the brain. it damages the brain.  usually it has not specific harm on people, you are the exception.  with you the thing called a seizure threshold was lowered by the substances, and stress. and that make you more likely to seize.  alot of people think that seizures are only what they see on tv.  or just the grand mal.  the truth is that what happens to you is dependend on the area of the brain that is affected.  the angry could just be another source of seizure activity.  it would be a wonderful thing.  your gutt is telling you part of the truth.  the drug may have trigger the seizure, the alcohol may have triggered the seizure.  the stress, or lack of sleep may have triggered the seizure.  stopping them is the best thing to do.  the big thing is that the seizure threshold has been breached.  once breached it becomes easier to breach the threshold the next time.  write everything down that has happened to you.  find a doc that you trust,  take what you have written down to the doc and let them read it.

in the meantime it is a good idea to follow your current doc instructions.  find out if the new doc want to continue the treatment plan.   the big question that you must ask.  if your sister had not been in the car, would someone have died.  you, your sister, someone else.  it is not a guilt trip. it is reality.  have epilepsy is not easy, from any point of view.  if we can help please ask.  hope it helps.  rikk

probably would be a good idea to get another doc.  if you don't trust you will not follow instructions.  it is not a guess it is a fact that both alcohol and cocaine had bad effects on the brain. it damages the brain.  usually it has not specific harm on people, you are the exception.  with you the thing called a seizure threshold was lowered by the substances, and stress. and that make you more likely to seize.  alot of people think that seizures are only what they see on tv.  or just the grand mal.  the truth is that what happens to you is dependend on the area of the brain that is affected.  the angry could just be another source of seizure activity.  it would be a wonderful thing.  your gutt is telling you part of the truth.  the drug may have trigger the seizure, the alcohol may have triggered the seizure.  the stress, or lack of sleep may have triggered the seizure.  stopping them is the best thing to do.  the big thing is that the seizure threshold has been breached.  once breached it becomes easier to breach the threshold the next time.  write everything down that has happened to you.  find a doc that you trust,  take what you have written down to the doc and let them read it.

in the meantime it is a good idea to follow your current doc instructions.  find out if the new doc want to continue the treatment plan.   the big question that you must ask.  if your sister had not been in the car, would someone have died.  you, your sister, someone else.  it is not a guilt trip. it is reality.  have epilepsy is not easy, from any point of view.  if we can help please ask.  hope it helps.  rikk

Re: alcohol & seizures & trileptal

Submitted by bearmkt on Tue, 2009-01-20 - 12:13

Hi M,

I hope all is well.  I was diagnosed with epilepsy when I was 17 (in my early 40s now) after having two seizures.  My seizures are under control now with one drug (Lamictal 2x/day) but I know that I can't risk missing a dose.  I have juvenile myoclonic epilepsy (JME) which appears in adolescence and can be well controlled with medication.  When I first developed epilepsy I tried to talk myself out of it and find reasons for my seizures (stress, not enough sleep, etc..).  Denial is very powerful but once I finally learned to accept my condition and the fact that it is very common (1 out of every 100 persons has epilepsy) and can happen to anyone I felt relieved.  My life is fairly normal and taking the meds is no big deal (I take them along with my vitamins).

Here are the facts: epilepsy is diagnosed when someone has two or more seizures.  From your post you've had at least 4 generalized seizures as well as multiple auras.  Large amounts of alcohol can certianly result in seizures.  However, those would likely occur shortly after drinking and not hours later.  Also, some of your seizures seem to have occured well after you had anything to drink. 

Having a seizure when driving as you did is very serious.  You could have killed someone including yourself and your sister.  I don't believe that the cocaine had anything to do with your seizure since 12 days had passed since you took it.  If you think about it your greatest risk for a seizure from the cocaine would have been shortly after taking it since that is when the concentration in your system would have been the greatest.  Any amount in your system after 12 days would likely be negligible.  Also, if you had hurt/killed someone else while driving you could be target of a lawsuit and possibly face jail time for manslaughter.  Lawsuits can be expensive and you and your family could lose a lot of your assets.

You're absolutely right about neurologist.  Many of them do have attitudes but the fact is they have a lot of experience diagnosing and treating patients who have epilepsy as well as 8+ years of medical training.   I believe your neurologist was correct in her diangosis of epilepsy.  I've had the same problem with doctors cutting me off while I'm talking but doctors aren't always tactful.  They often want to determine what the problem is, treat it and move on to the next patient.  The fact that your catscan and EEG were normal doesn't mean you can't have epilepsy.  In fact a significant percentage of people with epilepsy have normal Catscans and EEGs.  (my catscan is normal but my EEG isn't). 

I recommend that you also consult with an epileptologist (a neurologist who specializes in treating epilepsy) ASAP to diagnose the form of epilepsy you have and determine the appropriate course of treatment.  There should be an epilepsy center affiliated with a hospital near you.  I was misdiagnosed for many years with partial complex seizures by many different neurologists.  It wasn't until I finally saw an epileptologist at UCSF that I was correctly diagnosed with JME and put on the right drug. 

I know it isn't easy to face the fact that you have epilepsy but it isn't that big of a deal and the good news is that your seizures are treatable.  Finally there is a good book you may want to read called "epilepsy a new approach" by  Adirenne Richard and Joel Reiter, M.D.  I'll get off my pedastal now.  Free to write me anytime and let me know how you are doing. 

Take care

Mark

Hi M,

I hope all is well.  I was diagnosed with epilepsy when I was 17 (in my early 40s now) after having two seizures.  My seizures are under control now with one drug (Lamictal 2x/day) but I know that I can't risk missing a dose.  I have juvenile myoclonic epilepsy (JME) which appears in adolescence and can be well controlled with medication.  When I first developed epilepsy I tried to talk myself out of it and find reasons for my seizures (stress, not enough sleep, etc..).  Denial is very powerful but once I finally learned to accept my condition and the fact that it is very common (1 out of every 100 persons has epilepsy) and can happen to anyone I felt relieved.  My life is fairly normal and taking the meds is no big deal (I take them along with my vitamins).

Here are the facts: epilepsy is diagnosed when someone has two or more seizures.  From your post you've had at least 4 generalized seizures as well as multiple auras.  Large amounts of alcohol can certianly result in seizures.  However, those would likely occur shortly after drinking and not hours later.  Also, some of your seizures seem to have occured well after you had anything to drink. 

Having a seizure when driving as you did is very serious.  You could have killed someone including yourself and your sister.  I don't believe that the cocaine had anything to do with your seizure since 12 days had passed since you took it.  If you think about it your greatest risk for a seizure from the cocaine would have been shortly after taking it since that is when the concentration in your system would have been the greatest.  Any amount in your system after 12 days would likely be negligible.  Also, if you had hurt/killed someone else while driving you could be target of a lawsuit and possibly face jail time for manslaughter.  Lawsuits can be expensive and you and your family could lose a lot of your assets.

You're absolutely right about neurologist.  Many of them do have attitudes but the fact is they have a lot of experience diagnosing and treating patients who have epilepsy as well as 8+ years of medical training.   I believe your neurologist was correct in her diangosis of epilepsy.  I've had the same problem with doctors cutting me off while I'm talking but doctors aren't always tactful.  They often want to determine what the problem is, treat it and move on to the next patient.  The fact that your catscan and EEG were normal doesn't mean you can't have epilepsy.  In fact a significant percentage of people with epilepsy have normal Catscans and EEGs.  (my catscan is normal but my EEG isn't). 

I recommend that you also consult with an epileptologist (a neurologist who specializes in treating epilepsy) ASAP to diagnose the form of epilepsy you have and determine the appropriate course of treatment.  There should be an epilepsy center affiliated with a hospital near you.  I was misdiagnosed for many years with partial complex seizures by many different neurologists.  It wasn't until I finally saw an epileptologist at UCSF that I was correctly diagnosed with JME and put on the right drug. 

I know it isn't easy to face the fact that you have epilepsy but it isn't that big of a deal and the good news is that your seizures are treatable.  Finally there is a good book you may want to read called "epilepsy a new approach" by  Adirenne Richard and Joel Reiter, M.D.  I'll get off my pedastal now.  Free to write me anytime and let me know how you are doing. 

Take care

Mark

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