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How Do You Cope?
Sat, 05/12/2012 - 15:01Topic: My Epilepsy Diary
I was diagnosed 5 months ago and I'm not coping well. My family insults me and refuses to educate themselves on my condition (they assume it's "common sense" and they already know). So, I've found that it helps to cope with pills and alcohol, cutting, journaling, etc... What are some ways you cope when you have no one in person to talk to and are constantly insulted and let down by people who claim to care about you?
Comments
Re: How Do You Cope?
Submitted by rosanna1980 on Sat, 2012-05-19 - 08:22
I appreciate your comment. Like you, my MRI, EEG, and CTscans were all negative. Doctors have no clue why I'm having seizures, don't seem too interested in determining the exact type i'm having (other than grand mal and noctural) and honestly don't seem too interested in finding any treatment beyond meds. Sigh. My memory is shot. When I can afford it, I am going to look into a more wholistic approach.
Re: How Do You Cope?
Submitted by rebmil on Fri, 2012-05-18 - 22:04
I started to have seizures only when I am sleeping 2 yrs. ago. I was taken to the hospital, had all the usual tests, EEG, MRI, CT scan, all came back normal, had blood drawn, and was given Dilantin 100 mg 3xaday. No dr.s have really told me what type of seiz. I have or why I am having them.
I did my own research on the Net, and came to the conclusion that I have Nocturnal Seizure Disorder. It is a type of grand mal seiz. that only happens when the person is asleep. I have all the usual symptoms of grand mal, my face and lips are blue and I stop breathing (I have been told this by my boyfriend who has seen me have seiz. in my sleep), I have tongue bitten, peed pants, weak legs, pounding headache and extreme nausea. I might also have another type of seiz. called Abdominal Epilepsy. Because months before I had my first seiz. I had stomach like flus at least 5-10 times a month. I would have a nauseated stomach, but I would be hungry still, eat and then throw up later. Dr.s don't really think Abdominal Epil. exists cuz it mostly affects children, and they don't always have all the symptoms of epil.
Right now I am not taking any meds. After taking my seiz. meds for 2 yrs. I have noticed that my memory was getting bad. I found out that seiz. meds cause memory loss and I refuse to take them anymore. I don't want to lose my memory any more than I have. So far I have had 2 seiz. since I have gotten off my meds. To date I have had 15 seiz. since 2 yrs. ago. It may be wrong for me to get off my meds. but I would rather suffer with seiz. than lose my memory.
I just wanted to tell all you people who have no support from family and friends, that you are not alone. Don't ever give up and think you are less than somebody else just because you have seiz. Make your family understand what you are going through and make them understand you do have seiz. Keep on insisting it and have your dr. call them and talk to them.
They have to learn about epil. and seiz. so they know what to do for you if they ever witness you having one. Knowledge is power. Keep on fighting for yourself and never give up.
Good luck to all and peace to all.
rebmil
I started to have seizures only when I am sleeping 2 yrs. ago. I was taken to the hospital, had all the usual tests, EEG, MRI, CT scan, all came back normal, had blood drawn, and was given Dilantin 100 mg 3xaday. No dr.s have really told me what type of seiz. I have or why I am having them.
I did my own research on the Net, and came to the conclusion that I have Nocturnal Seizure Disorder. It is a type of grand mal seiz. that only happens when the person is asleep. I have all the usual symptoms of grand mal, my face and lips are blue and I stop breathing (I have been told this by my boyfriend who has seen me have seiz. in my sleep), I have tongue bitten, peed pants, weak legs, pounding headache and extreme nausea. I might also have another type of seiz. called Abdominal Epilepsy. Because months before I had my first seiz. I had stomach like flus at least 5-10 times a month. I would have a nauseated stomach, but I would be hungry still, eat and then throw up later. Dr.s don't really think Abdominal Epil. exists cuz it mostly affects children, and they don't always have all the symptoms of epil.
Right now I am not taking any meds. After taking my seiz. meds for 2 yrs. I have noticed that my memory was getting bad. I found out that seiz. meds cause memory loss and I refuse to take them anymore. I don't want to lose my memory any more than I have. So far I have had 2 seiz. since I have gotten off my meds. To date I have had 15 seiz. since 2 yrs. ago. It may be wrong for me to get off my meds. but I would rather suffer with seiz. than lose my memory.
I just wanted to tell all you people who have no support from family and friends, that you are not alone. Don't ever give up and think you are less than somebody else just because you have seiz. Make your family understand what you are going through and make them understand you do have seiz. Keep on insisting it and have your dr. call them and talk to them.
They have to learn about epil. and seiz. so they know what to do for you if they ever witness you having one. Knowledge is power. Keep on fighting for yourself and never give up.
Good luck to all and peace to all.
rebmil