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Newbie Topic: Share Your Story So for about six months I’ve been going through the most crazy things. I started passing out here and there and had had issues in the past with passing out but nothing ever came of it. Then I started forgetting my boyfriend when I would come to and the last six Years of my life would be a blank. It would take sometimes up to 30 minutes for all things to come back but I still would remember how I forgot or the things that happened while I had forgotten. I was hospitalized once clean CT, Clean 20 minute EEG. I was then taken by ambulance again clean CT. Sent to a neurologist and he said everything I have described over the years ie: spacing out and falling and forgetting along with throwing up and other things like migraines on my left side sounded like seizures. He sent me for another routine EEG but he put me on Depakote and I was already on another anti convulsant for bipolar disorder. Yesterday I went back because I have started having issues in my sleep. My boyfriend says I shake and drool and can not communicate for 1-3 minutes. And then I’m out of breathe but eventually calm down. We tried talking to the doctor and he said it seems I’m doing better because I’m not falling and I’ve only forgotten and Dow ed out a few times. He said I could challenge the theory if I wanted and cut my meds to half for a week and see what happens. But I really don’t want to do that as I feel the medication has helped but what’s up with the sleep stuff? I really feel overwhelmed and frustrated I can’t deive and that totally sucks he had me down for complex partial seizures to generalized seizures.....any words of wisdom or experience would be great or same situations???? Sorry so long!!!

Comments

Doctor says you're "doing

Submitted by birdman on Fri, 2018-07-13 - 21:22

Doctor says you're "doing better". Does it sound as if he is content with the level of control even if it is not perfect? Maybe it would help if boyfriend took video pictures of you in one of those night time events and then show this to doctor. You might also try a different neurologist, especially before you try cutting the dose in half. I don't want to accuse you of any wrongdoing, but I wonder if the doctor has valid reason to suspect illicit drug use. I have heard that cocaine, meth, and other bad drugs can bring on seizures. Doctors must get a lot of this now days and I'm sure they suspect it often, and I imagine they sometimes incorrectly suspect drug use. This probably leaves them less empathetic than they would be if all their patients suffered from an uncontrollable condition.It sounds to me like you are having legitimate seizures, but I think it would help us as patients to understand why doctors can end up misjudging our situations.

WelcomeA regular EEG may

Submitted by just_joe on Sat, 2018-07-14 - 16:55

WelcomeA regular EEG may never show anything. I had 20-25 that all came back normal. Meaning they found no spikes, waves or abnormalities. Abnormalities is what they are looking for in the EEG. What starts a seizure is an electrical impulse hitting wrong in the brain. That hit can cause a chain reaction.It takes 3-4 weeks for the medication to get to the therapeutic levels in your body. Then it takes time to evaluate and see if the medication is reducing the number of seizures you were having. Most of what you posted could be complex partial or generalized seizures. They last longer then absence seizures where the person looks like they are daydreaming. As for the seizures at night you can research nocturnal seizures or nocturnal epilepsy. In the Learn Section you can also research all the different types of seizures.I was diagnosed well before they came out with the different types of seizures and types of epilepsy that are used today. That happened when neurologists started going into specialties which was in the mid 1980's. I can have almost any of the seizures from absence (petite mal) to generalized tonic clonic (grande mal). I was also diagnosed with Focal Motor Epilepsy which an be focal seizures, any partial seizure and any of the generalized seizures.As for being frustrated YES one can get that way. Not driving can suck if you have driven. A person can do almost anything without driving. I know I have never driven. I have worked in many fields of work and was a part owner of a small company. I was diagnosed when I was 13-14 and I am now a senior citizen. Which means I have been living and dealing with epilepsy and seizures for 50+ years.Cutting your meds in half is not what I would suggest. Those seizures you started having or have just noticed need to be stopped. Getting a medication that will stop all seizures is a trial and error process one that works on one person may not on the next and the same with doses. I know I have to take the highest dose of any and all the different medication I have ever taken. Today medications are made to have fewer side effects an are safer then they were when I started taking medications.Words of wisdom or experience <<< Since seizure medications are nothing like other medications you have taken please take them as directed. If you are to take them 2 times a day those times need to be 12 hours apart or as close to that as possible. There is a reason for that. Therapeutic levels build up in your body to that that is controlling your seizures. If you forget and take them late or forgot a dose those therapeutic levels can keep you from having a break through seizure. If you like this neurologist then keep a good relationship with them. Always ask questions. Most doctors ask questions because they need information to help them with a diagnosis or it tells them if your being better then before. I always had a good relationship with my neurologists and I could get answers to many of my questions in a phone call. They should have a Nurse practioner which is a nurse that wants to start a practice and be a doctor. The last neurologist I had was listening to my questions back in the mid 80's. He had worked with 3 other neurologists who either moved or retired. When he retired I know his associated would not be able yo take me since I wasn't going to need to go in for at least a year. So I got Doc to refer me to a neurologist he thought would handle me and had the same temper he had. Doc Simpkins is just that kind of neurologist. What ever you do you do not need to let epilepsy control you. It is YOU that needs to control your epilepsyI hope this helpsJoe

WelcomeA regular EEG may never show anything. I had 20-25 that all came back normal. Meaning they found no spikes, waves or abnormalities. Abnormalities is what they are looking for in the EEG. What starts a seizure is an electrical impulse hitting wrong in the brain. That hit can cause a chain reaction.It takes 3-4 weeks for the medication to get to the therapeutic levels in your body. Then it takes time to evaluate and see if the medication is reducing the number of seizures you were having. Most of what you posted could be complex partial or generalized seizures. They last longer then absence seizures where the person looks like they are daydreaming. As for the seizures at night you can research nocturnal seizures or nocturnal epilepsy. In the Learn Section you can also research all the different types of seizures.I was diagnosed well before they came out with the different types of seizures and types of epilepsy that are used today. That happened when neurologists started going into specialties which was in the mid 1980's. I can have almost any of the seizures from absence (petite mal) to generalized tonic clonic (grande mal). I was also diagnosed with Focal Motor Epilepsy which an be focal seizures, any partial seizure and any of the generalized seizures.As for being frustrated YES one can get that way. Not driving can suck if you have driven. A person can do almost anything without driving. I know I have never driven. I have worked in many fields of work and was a part owner of a small company. I was diagnosed when I was 13-14 and I am now a senior citizen. Which means I have been living and dealing with epilepsy and seizures for 50+ years.Cutting your meds in half is not what I would suggest. Those seizures you started having or have just noticed need to be stopped.  Getting a medication that will stop all seizures is a trial and error process one that works on one person may not on the next and the same with doses. I know I have to take the highest dose of any and all the different medication I have ever taken. Today medications are made to have fewer side effects an are safer then they were when I started taking medications.Words of wisdom or experience <<< Since seizure medications are nothing like other medications you have taken please take them as directed. If you are to take them 2 times a day those times need to be 12 hours apart or as close to that as possible. There is a reason for that. Therapeutic levels build up in your body to that that is controlling your seizures. If you forget and take them late or forgot a dose those therapeutic levels can keep you from having a break through seizure. If you like this neurologist then keep a good relationship with them. Always ask questions. Most doctors ask questions because they need information to help them with a diagnosis or it tells them if your being better then before. I always had a good relationship with my neurologists and I could get answers to many of my questions in a phone call. They should have a Nurse practioner which is a nurse that wants to start a practice and be a doctor. The last neurologist I had was listening to my questions back in the mid 80's. He had worked with 3 other neurologists who either moved or retired. When he retired I know his associated would not be able yo take me since I wasn't going to need to go in for at least a year. So I got Doc to refer me to a neurologist he thought would handle me and had the same temper he had. Doc Simpkins is just that kind of neurologist. What ever you do you do not need to let epilepsy control you. It is YOU that needs to control your epilepsyI hope this helpsJoe

WelcomeA regular EEG may never show anything. I had 20-25 that all came back normal. Meaning they found no spikes, waves or abnormalities. Abnormalities is what they are looking for in the EEG. What starts a seizure is an electrical impulse hitting wrong in the brain. That hit can cause a chain reaction.It takes 3-4 weeks for the medication to get to the therapeutic levels in your body. Then it takes time to evaluate and see if the medication is reducing the number of seizures you were having. Most of what you posted could be complex partial or generalized seizures. They last longer then absence seizures where the person looks like they are daydreaming. As for the seizures at night you can research nocturnal seizures or nocturnal epilepsy. In the Learn Section you can also research all the different types of seizures.I was diagnosed well before they came out with the different types of seizures and types of epilepsy that are used today. That happened when neurologists started going into specialties which was in the mid 1980's. I can have almost any of the seizures from absence (petite mal) to generalized tonic clonic (grande mal). I was also diagnosed with Focal Motor Epilepsy which an be focal seizures, any partial seizure and any of the generalized seizures.As for being frustrated YES one can get that way. Not driving can suck if you have driven. A person can do almost anything without driving. I know I have never driven. I have worked in many fields of work and was a part owner of a small company. I was diagnosed when I was 13-14 and I am now a senior citizen. Which means I have been living and dealing with epilepsy and seizures for 50+ years.Cutting your meds in half is not what I would suggest. Those seizures you started having or have just noticed need to be stopped. Getting a medication that will stop all seizures is a trial and error process one that works on one person may not on the next and the same with doses. I know I have to take the highest dose of any and all the different medication I have ever taken. Today medications are made to have fewer side effects an are safer then they were when I started taking medications.Words of wisdom or experience <<< Since seizure medications are nothing like other medications you have taken please take them as directed. If you are to take them 2 times a day those times need to be 12 hours apart or as close to that as possible. There is a reason for that. Therapeutic levels build up in your body to that that is controlling your seizures. If you forget and take them late or forgot a dose those therapeutic levels can keep you from having a break through seizure. If you like this neurologist then keep a good relationship with them. Always ask questions. Most doctors ask questions because they need information to help them with a diagnosis or it tells them if your being better then before. I always had a good relationship with my neurologists and I could get answers to many of my questions in a phone call. They should have a Nurse practioner which is a nurse that wants to start a practice and be a doctor. The last neurologist I had was listening to my questions back in the mid 80's. He had worked with 3 other neurologists who either moved or retired. When he retired I know his associated would not be able yo take me since I wasn't going to need to go in for at least a year. So I got Doc to refer me to a neurologist he thought would handle me and had the same temper he had. Doc Simpkins is just that kind of neurologist. What ever you do you do not need to let epilepsy control you. It is YOU that needs to control your epilepsyI hope this helpsJoe

Epilepsy has different

Submitted by mereloaded on Sun, 2018-07-29 - 17:12

Epilepsy has different manifestations. Passing out s just one of them, shaking in your sleep/drooling is another. That sounds like nocturnal epilepsy, yes, you can have more than one type of symptoms. Tell your doctor your new symptom and tell them that medication is helping you and do 5 want to discontinue