I've had seizures for 6 years that were thought to be due to my heart condition CPVT but I just received the diagnosis of epilepsy after having 2 grand mal seizures last week and 2 in July before that. I have had several seizures over the years but with a new reason as to why I'm having them kind of blows my mind and I want to talk to people who can answer questions, tell me about their experiences and can share stories with. One question is has anyone bit their tongue so bad that the tip is almost completely numb besides pins and needles feeling and the taste buds are messed up? I bit it a week ago and it doesn't feel any better and I'm worried about permeant damage. Chat with me and share your crazy seizure stories! :banana:
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- Thread starter Nikmk1130
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Hi Nikmk1130!
You'll get lots of help, answers and stories on here. I know I have.
There are so many people who think that they are the only one who ever has something happen to them during a seizure until you start reading on here. That's when you find out there could be over 100 people who have done the same thing.
I very rarely have a grand mal, only maybe once a year. Luckily I've never bitten my tongue during one but I know there are several people on here that have. All of my seizures are usually simple and complex partial. I think the worse I've done during one of those is fallen and I know that I'm also one of the luckily ones with that too.
Some people know why they have epilepsy and other's don't - I'm one of the ones who don't. About 11 years ago I had my first seizure out of no where and they haven't stopped since. The drs have tried to figured out how it happened but have no clue.
Read around, ask as many questions as you want and give some answers too. It's nice to be able to help others as well as yourself!
You'll get lots of help, answers and stories on here. I know I have.
There are so many people who think that they are the only one who ever has something happen to them during a seizure until you start reading on here. That's when you find out there could be over 100 people who have done the same thing.
I very rarely have a grand mal, only maybe once a year. Luckily I've never bitten my tongue during one but I know there are several people on here that have. All of my seizures are usually simple and complex partial. I think the worse I've done during one of those is fallen and I know that I'm also one of the luckily ones with that too.
Some people know why they have epilepsy and other's don't - I'm one of the ones who don't. About 11 years ago I had my first seizure out of no where and they haven't stopped since. The drs have tried to figured out how it happened but have no clue.
Read around, ask as many questions as you want and give some answers too. It's nice to be able to help others as well as yourself!
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When I was first diagnosed I was having between 20 and 30 seizures a month, these were usually only simple and complex seizures. I had to quit my job and move back home with my parents because I couldn't live on my own. With the meds that I'm on and I have a VNS I have on average I have about 7 seizures a month. Sometimes they could be more than one in a day, two days in a row, a few days apart or I could maybe go a week or two without a single one. These are simple and complex partials. I usually have one tonic clonic a year.
I'm 37 and I haven't been able to drive since I've had epilepsy. You have to go 6 months seizure free before you are able to and I haven't come close to that yet. I don't have any public transportation where I live but luckily I have family who lives close that can help me get around. But it's hard not being able to just run out to the store to pick up a gallon of milk when I need it. There are many people on here that do work and drive however with no problem. Driving is the only thing that you need to be very careful about because if you have a seizure while driving who knows what might happen.
I don't get to see my friends as often as I used to. They all live about an hour away, which is where I used to live. They have jobs and families which is what makes it the hardest. But we talk on the phone a good bit and try to get together as often as we can to do things.
My husband and I moved in together about 9 years ago when we were still dating. I have no problems being in the house alone. I'm able to do house work, take showers, go up and down stairs and things like that. I don't really like to cook on the stove or in the oven when I'm alone because I have had seizures while doing that. One time my husband smelled something burning and came into the kitchen to find me sitting on the floor having a seizure and a skillet on the burner with smoke pouring out of it.
I always wanted to have children but since I've had epilepsy I haven't wanted to. I don't know what would happen to me or the child because of the meds that I take, which is a lot, or the meds that I'd have to stop taking while I was pregnant. There are many people here who have had children with no problems.
My memory is horrible. After my first seizure I lost over 10 years of memory. There are still a few things up there but not much. Now my memory starts to fade away after around 6 months. Not all of it goes but I forget a good bit. A lot of times after I have a seizure, especially when I was first diagnosed, I'll forget things that happened that day or a few days before.
I hope I answered some of your questions but ask more if you want!
I'm 37 and I haven't been able to drive since I've had epilepsy. You have to go 6 months seizure free before you are able to and I haven't come close to that yet. I don't have any public transportation where I live but luckily I have family who lives close that can help me get around. But it's hard not being able to just run out to the store to pick up a gallon of milk when I need it. There are many people on here that do work and drive however with no problem. Driving is the only thing that you need to be very careful about because if you have a seizure while driving who knows what might happen.
I don't get to see my friends as often as I used to. They all live about an hour away, which is where I used to live. They have jobs and families which is what makes it the hardest. But we talk on the phone a good bit and try to get together as often as we can to do things.
My husband and I moved in together about 9 years ago when we were still dating. I have no problems being in the house alone. I'm able to do house work, take showers, go up and down stairs and things like that. I don't really like to cook on the stove or in the oven when I'm alone because I have had seizures while doing that. One time my husband smelled something burning and came into the kitchen to find me sitting on the floor having a seizure and a skillet on the burner with smoke pouring out of it.
I always wanted to have children but since I've had epilepsy I haven't wanted to. I don't know what would happen to me or the child because of the meds that I take, which is a lot, or the meds that I'd have to stop taking while I was pregnant. There are many people here who have had children with no problems.
My memory is horrible. After my first seizure I lost over 10 years of memory. There are still a few things up there but not much. Now my memory starts to fade away after around 6 months. Not all of it goes but I forget a good bit. A lot of times after I have a seizure, especially when I was first diagnosed, I'll forget things that happened that day or a few days before.
I hope I answered some of your questions but ask more if you want!
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I am also relatively new here. I came across this site while doing some research. So far it has been interesting and all the people I post to or post to me are very supportive.
Please don't mind my rambling.
I was diagnosed in 2000, tho I spent a year refusing to tell my flight surgeon that I was having a ton of seizures, the gran mal's all coming at night with partial complexes happening during the day, while I was on active duty. I was an idiot. I should have gone to him right away and tell him that something was wrong (I had no clue what was happening at the time).
Every year I needed to have a flight physical in order to do my job; Air Traffic Control. I knew that if I went to medical and told them what was happening to me, I would immediately be grounded until they found the cause. I thought that no matter what it was my Naval career was over. Because I did not get help for a little over a year, the gran mal's I did have literally destroyed my right shoulder and back bone.
I now attract magnets because of all the metal in my shoulder. Annoying at times
Well, I was medically retired and I guess I am lucky. I receive my Navy retirement as well as a 100% disabled rating with the VA. Also, all my medical care is provided by the VA and Tricare (military health insurance). I am in a hellava lot better position than many on these threads so I am in no position to really complain.
Anyhoo, no matter what comes my way, I always make jokes about my condition. My wife hates it because she thinks that I am not taking things seriously. I tell her "How long have you known me?" My old stand by when I must let someone know about my condition is that if they see me flopping on the floor like a dead fish, don't try to take the hook out of my mouth. Just let me keep flopping until I stop. Corny as hell, but it puts people at ease. I use this adage; "If you can't laugh at yourself, you can't laugh".
Sorry, veering off in all directions. Just hang in there, these guys are very supportive.
Please don't mind my rambling.
I was diagnosed in 2000, tho I spent a year refusing to tell my flight surgeon that I was having a ton of seizures, the gran mal's all coming at night with partial complexes happening during the day, while I was on active duty. I was an idiot. I should have gone to him right away and tell him that something was wrong (I had no clue what was happening at the time).
Every year I needed to have a flight physical in order to do my job; Air Traffic Control. I knew that if I went to medical and told them what was happening to me, I would immediately be grounded until they found the cause. I thought that no matter what it was my Naval career was over. Because I did not get help for a little over a year, the gran mal's I did have literally destroyed my right shoulder and back bone.
I now attract magnets because of all the metal in my shoulder. Annoying at times
Well, I was medically retired and I guess I am lucky. I receive my Navy retirement as well as a 100% disabled rating with the VA. Also, all my medical care is provided by the VA and Tricare (military health insurance). I am in a hellava lot better position than many on these threads so I am in no position to really complain.
Anyhoo, no matter what comes my way, I always make jokes about my condition. My wife hates it because she thinks that I am not taking things seriously. I tell her "How long have you known me?" My old stand by when I must let someone know about my condition is that if they see me flopping on the floor like a dead fish, don't try to take the hook out of my mouth. Just let me keep flopping until I stop. Corny as hell, but it puts people at ease. I use this adage; "If you can't laugh at yourself, you can't laugh".
Sorry, veering off in all directions. Just hang in there, these guys are very supportive.
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It's pretty funny that you said that. My husband will call me 'crazy' for something that I've done, not seizure related, I always will say "OH YEA - Well at least I've got papers to prove it! What's your excuse!!!!"
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Laughter is the best medicine apparently
I always say - It feels better to laugh than it does to cry :lol:
Wow I can't imagine having so many seizures! I was having like two seizures every month or two for three years, then I got a break for three years and so far I've had four seizures since the end of July and thats way too much for me to handle lol. But humor definitely is the way to handle it because dwelling isn't going to help any! I've defiantly used the fish flopping analogy before lol. Sorry to hear about your navy career but at least you seem to receive the help you need so it's just an early retirement and big party!I am also relatively new here. I came across this site while doing some research. So far it has been interesting and all the people I post to or post to me are very supportive.
Please don't mind my rambling.
I was diagnosed in 2000, tho I spent a year refusing to tell my flight surgeon that I was having a ton of seizures, the gran mal's all coming at night with partial complexes happening during the day, while I was on active duty. I was an idiot. I should have gone to him right away and tell him that something was wrong (I had no clue what was happening at the time).
Every year I needed to have a flight physical in order to do my job; Air Traffic Control. I knew that if I went to medical and told them what was happening to me, I would immediately be grounded until they found the cause. I thought that no matter what it was my Naval career was over. Because I did not get help for a little over a year, the gran mal's I did have literally destroyed my right shoulder and back bone.
I now attract magnets because of all the metal in my shoulder. Annoying at times
Well, I was medically retired and I guess I am lucky. I receive my Navy retirement as well as a 100% disabled rating with the VA. Also, all my medical care is provided by the VA and Tricare (military health insurance). I am in a hellava lot better position than many on these threads so I am in no position to really complain.
Anyhoo, no matter what comes my way, I always make jokes about my condition. My wife hates it because she thinks that I am not taking things seriously. I tell her "How long have you known me?" My old stand by when I must let someone know about my condition is that if they see me flopping on the floor like a dead fish, don't try to take the hook out of my mouth. Just let me keep flopping until I stop. Corny as hell, but it puts people at ease. I use this adage; "If you can't laugh at yourself, you can't laugh".
Sorry, veering off in all directions. Just hang in there, these guys are very supportive.