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Accepting You're Epilepsy
Tue, 02/08/2005 - 14:08Topic: Corner Booth
It is selfish and pure laziness to pity ourselves because we have epilepsy. You must learn how to cope with your problems so you can help who suffer from the same difficulty. You are not alone, if you feel you are unable to straighten out your life the way you want it to be. To live with and accept epilepsy, you need to open your heart and listen to what it is telling you inside. Your heart will never lie to you because it only tells the truth. You must have the courage to ask your heart why you refuse to accept the fact that you are epileptic. Usually when we chose to hide things about ourselves, it is because we are embarrassed about whatever we are trying to hide. Epilepsy is not something you should be ashamed of having. People with diseases, and disorders are constantly coming out into the open. They are learning to talk about the problems in their lives and are educating society about them. This is the way they heal the scars inside them.. Society is becoming less fearful about many of the diseases and disorders that unfortunate individuals have to live with. There are more and more support groups and research studies. Nothing is going to get better for epileptics until we learn to help each other. There are self-help groups for everything because people realize that to change and strengthen themselves they must accept what they have and learn how to live with it in a productive manner. You need to look at life in a positive way. You need to say to yourself, “OK, I'm not happy with the person, I have become. I need to change and this is what I am going to do about it.” Stop being lazy. This is the first step to healing and strengthening our souls and self-esteem. Be proud in who you are. Be thankful each morning that you can wake up and feel the warmth of the sun and the beauty that surrounds us all.
Comments
Re: Accepting You're Epilepsy
Submitted by ral on Wed, 2013-11-06 - 14:38
Nice info rebmil. I feel much the same as you regarding seizure medications and have a similar volume/timing of occurances.
Re: Accepting You're Epilepsy
Submitted by ctoffey1 on Wed, 2013-11-06 - 16:09
Actually
I've been on medication since I was 7 yrs. old.
There was a time they were out of control I was having them in school as a little girl and the kids were calling me flipper.
I was on all different meds.
Then I got older they put me on Dilatin, phenabarbitol . ( very high doses) and I would still have them and have to go home for awhile.
it got to the point it was a combonation of grandmal, pedi ( where you are awake ) both after I went to bed. I was able to and still function
at 18 they changed the medication from the phenebarbitol to meberol which I guess they do when you become an adult.
Then around 35 they put tegratol, instead of the dilantin, boy what a change I was not bombed and my mom said I seemed wired. LOL
Finally I got a fantastic Nureologist Feb. 2001. Between him and I we worked together on changing my medications due to the fact that when I had to be hospitalized with a high fever and had seizure the drs kept changing the meds instead of treating the fever.
so now I am on Topamax, lamictal, and Depicot. the 3 together on the dose we figured out does not make me drowsy , yes I may have a few here and there after I've gone to bed.
I have found if you get a headache afterwards. The best thing to do immediatly afterwards is take 2 asprin
I'm still having trouble dealing with it with some people since they don't understand it. ( my one brother )
For the first time ever i went to my younger brothers retirement / 50th birthday party.
I felt real weird before I went. I had never felt this way. I had a seizure while awake, infront of everyone. Scared the crap out of my brother since he was not use to them but he finally realized it was no picnic. I was the one telling him ( I was okay and he went off calling the paramedics. I was having a pedi mal went about and enjoyed my brothers eve. so to speak or pretended to but went home and was so upset.
Living with this can be so scary because it is a what if. But life does go on.
Re: Accepting You're Epilepsy
Submitted by rebmil on Wed, 2013-11-06 - 14:11
This is an old post but I am going to comment anyways. I first started to have grand mal seizures only in my sleep starting in 2009. I was taken to the hospital in an ambulance. I was kind of out of it and when they brought me to the hospital, they put me in an emergency room and had me pee in a port a pottie. They did a drug test against my say so and found out I was smoking weed. After my boyfriend and his stepmom were allowed in the room they gave me a CT Scan. It came back normal. The emergency room dr. never really told me why I was having seizures or what type they even were. He later hinted that because I was smoking weed, that that caused me to have seizures. I wanted to laugh at him. I was smoking weed for 10 years before I even had this first seizure. I was sent home.
Two months later I had another grand mal seizure only in my sleep and we went back to the hospital. Again the dr. did not really say why I was having seizures. I did not have a piss test this time because I was coherant. The wait was taking a long time and I had to work that day so I went home against the hospitals advice. Several hours later, I had another grand mal seizure in my sleep. We went back to the hospital. I was given a liquid anti seizure med intravenously and was put on Dilantin 100 mg 3xaday and told to follow up with my primary care dr. Again the emergency room dr. did not say why I was having grand mal seizures only in my sleep and I got the impression he was biased against me because I smoked weed and he based his diagnosis of me having seizures only on that. Because I smoked weed he thought that was the reason why I was having seizures. I know in my heart that is not the reason I am having seizures. Anyways he is wrong because I don't smoke weed anymore and I still have grand mal seizures only in my sleep. So the weed was not the reason why I am having seizures.
I took the Dilantin 100 mg 3xaday for a couple of weeks but that high of a dose was affecting me. I have something wrong with my stomach. For about 10-20 times a month I have stomach flu like symptoms and I throw up several times a day for about 3-5 days a week. The Dilantin pills were making these stomach symptoms worse so I called my pc dr. and told them about throwing up. The dr. told me to start taking the pills 2xaday. That greatly reduced the stomach nausea but I still had it 10-20 times a month. I followed up with my pc dr. and he said I was having grand mal seizures based on the descriptions my boyfriend told him about waking up to the bed shaking and turning on the light and seeing me stop breathing and my face and lips turning blue. He also told the dr. my body is stiff as a board and my eyes are wide open and blinking rapidly like I am being electrocuted. The dr. ordered me to have an MRI done and I also had an EEG. The MRI was negative showing no seizure activity. I found out later I should have had the EEG done the day after I had a seizure not months later. It also should have been done while I was asleep, not awake. My seizures only happen when I am sleeping, so being awake, no seizure activity is going to show up on the EEG. Damnable dr is incompetent.
Later my Dilantin was changed to Phenytoin because of my insurance from work. Those pills made me sick too and caused me to throw up constantly. One week I was throwing up for 5 days straight from those pills so I went to another dr. He changed the Phenytoin to Tegretol XR 100 1 tab every 12 hours. I was also put on Hydroxyzine PAM 25 mg. cap. 1 every 8 hrs. for anxiety and nausea. I took the new seizure med for 2 weeks. But during this time I was noticing I was getting angry alot and becoming mean. I did some research on the new seiz. med and found out a rare but serious side effect was rage and anger. So I decided to get off this new pill and go back to the Phenytoin and take it with the anxiety pill for the nausea. The rage and anger disappeared and I felt better. Although I was still nauseated quite frequently. I took the seizure meds for a year and a half. Then I started to notice that I was losing my memory. I could not remember my cell phone number or my aunt's last name. I found out that all seizure meds cause memory loss and other health problems. So I decided to get off them. I slowly weaned myself off the seiz. med over a 2 month period. I went through withdrawal symptoms of having crying fits, being angry, being depressed, having trouble sleeping.
So now I take no seizure meds for my grand mal seizures. I still only have grand mal seizures only while I am sleeping. I have one maybe two a month. But I would rather have the seizures than take the damn pills to stop them. All seizure meds are NOT good and they cause more problems than they are worth taking. Dilantin causes liver problems and Phenytoin causes bone loss. All seizure meds cause depression and personality problems. Since I stopped my seizure meds I feel better and my personality is much better than it was 5 years ago when I was taking the seiz. meds.
I am not ashamed to have seizures. I posted on my facebook page that I have grand mal seizures only in my sleep. When I had a job at Wendy's I told the manager I had grand mal seizures only in my sleep. That is the first time I told an employer about my seizures. But I did not tell him I am not taking any meds for the seizures. The next time I find a job, I am seriously thinking of telling the manager I have grand mal seizures only in my sleep and that no I am not taking any meds to control them. I will say I only have 1 maybe 2 seizures a month. I am going to tell the manager I hate seizure meds and feel they do more harm than good. But I really don't know if I will tell the manager about my seizures because they can decide not to hire me because of them and say they did not hire me because of some other reason. Not being hired by a company because of seizures is very hard to prove in a discrimination suit.
Well that is all. Have a good day everyone.
This is an old post but I am going to comment anyways. I first started to have grand mal seizures only in my sleep starting in 2009. I was taken to the hospital in an ambulance. I was kind of out of it and when they brought me to the hospital, they put me in an emergency room and had me pee in a port a pottie. They did a drug test against my say so and found out I was smoking weed. After my boyfriend and his stepmom were allowed in the room they gave me a CT Scan. It came back normal. The emergency room dr. never really told me why I was having seizures or what type they even were. He later hinted that because I was smoking weed, that that caused me to have seizures. I wanted to laugh at him. I was smoking weed for 10 years before I even had this first seizure. I was sent home.
Two months later I had another grand mal seizure only in my sleep and we went back to the hospital. Again the dr. did not really say why I was having seizures. I did not have a piss test this time because I was coherant. The wait was taking a long time and I had to work that day so I went home against the hospitals advice. Several hours later, I had another grand mal seizure in my sleep. We went back to the hospital. I was given a liquid anti seizure med intravenously and was put on Dilantin 100 mg 3xaday and told to follow up with my primary care dr. Again the emergency room dr. did not say why I was having grand mal seizures only in my sleep and I got the impression he was biased against me because I smoked weed and he based his diagnosis of me having seizures only on that. Because I smoked weed he thought that was the reason why I was having seizures. I know in my heart that is not the reason I am having seizures. Anyways he is wrong because I don't smoke weed anymore and I still have grand mal seizures only in my sleep. So the weed was not the reason why I am having seizures.
I took the Dilantin 100 mg 3xaday for a couple of weeks but that high of a dose was affecting me. I have something wrong with my stomach. For about 10-20 times a month I have stomach flu like symptoms and I throw up several times a day for about 3-5 days a week. The Dilantin pills were making these stomach symptoms worse so I called my pc dr. and told them about throwing up. The dr. told me to start taking the pills 2xaday. That greatly reduced the stomach nausea but I still had it 10-20 times a month. I followed up with my pc dr. and he said I was having grand mal seizures based on the descriptions my boyfriend told him about waking up to the bed shaking and turning on the light and seeing me stop breathing and my face and lips turning blue. He also told the dr. my body is stiff as a board and my eyes are wide open and blinking rapidly like I am being electrocuted. The dr. ordered me to have an MRI done and I also had an EEG. The MRI was negative showing no seizure activity. I found out later I should have had the EEG done the day after I had a seizure not months later. It also should have been done while I was asleep, not awake. My seizures only happen when I am sleeping, so being awake, no seizure activity is going to show up on the EEG. Damnable dr is incompetent.
Later my Dilantin was changed to Phenytoin because of my insurance from work. Those pills made me sick too and caused me to throw up constantly. One week I was throwing up for 5 days straight from those pills so I went to another dr. He changed the Phenytoin to Tegretol XR 100 1 tab every 12 hours. I was also put on Hydroxyzine PAM 25 mg. cap. 1 every 8 hrs. for anxiety and nausea. I took the new seizure med for 2 weeks. But during this time I was noticing I was getting angry alot and becoming mean. I did some research on the new seiz. med and found out a rare but serious side effect was rage and anger. So I decided to get off this new pill and go back to the Phenytoin and take it with the anxiety pill for the nausea. The rage and anger disappeared and I felt better. Although I was still nauseated quite frequently. I took the seizure meds for a year and a half. Then I started to notice that I was losing my memory. I could not remember my cell phone number or my aunt's last name. I found out that all seizure meds cause memory loss and other health problems. So I decided to get off them. I slowly weaned myself off the seiz. med over a 2 month period. I went through withdrawal symptoms of having crying fits, being angry, being depressed, having trouble sleeping.
So now I take no seizure meds for my grand mal seizures. I still only have grand mal seizures only while I am sleeping. I have one maybe two a month. But I would rather have the seizures than take the damn pills to stop them. All seizure meds are NOT good and they cause more problems than they are worth taking. Dilantin causes liver problems and Phenytoin causes bone loss. All seizure meds cause depression and personality problems. Since I stopped my seizure meds I feel better and my personality is much better than it was 5 years ago when I was taking the seiz. meds.
I am not ashamed to have seizures. I posted on my facebook page that I have grand mal seizures only in my sleep. When I had a job at Wendy's I told the manager I had grand mal seizures only in my sleep. That is the first time I told an employer about my seizures. But I did not tell him I am not taking any meds for the seizures. The next time I find a job, I am seriously thinking of telling the manager I have grand mal seizures only in my sleep and that no I am not taking any meds to control them. I will say I only have 1 maybe 2 seizures a month. I am going to tell the manager I hate seizure meds and feel they do more harm than good. But I really don't know if I will tell the manager about my seizures because they can decide not to hire me because of them and say they did not hire me because of some other reason. Not being hired by a company because of seizures is very hard to prove in a discrimination suit.
Well that is all. Have a good day everyone.