Getting Worse...No warning

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I was diagnosed with JME at 16. I'm 32 now. On average I have 1 grand mal seizure a year, but quite a few small ones. I did go for a couple years where I had a couple grand mals a week. I found a better doctor and meds. In fact, I had one about 3 years ago and didn't have another for 2 years. However, in about the last 4 months it has gotten much worse. I have always had an 'aura' or jerks prior to a seizure giving me a warning to lay down. I don't even know how many I've had recently. I will wake up on the couch with a pounding headache, bodyaches, and my tounge is bleeding...obvious signs of a seizure. People have witnessed a couple of them and I know I have fallen on the floor, but right after waking up I get up, lay on the couch, and go back to sleep. I have no memory of anything leading up to the seizure anymore. This is this first time I have experienced this. I have severely injured myself from falling due to seizure in the past, and this is the scariest part for me. No warning whatsoever so I can protect myself.

The last 6 months have been tough. In 1 month I lost my job (layoff), 12 year relationship ended, had to move from my home of 12 years, and my 2 best friends moved out of state. Stress has been an obvious factor. However, I've had stress before and have actually handled everything with a very positive attitude and pretty happy. I really don't think that's the cause.

I know this will get negative feedback, but I have been aftraid to tell my doctor due to losing my license for a couple months. Sometimes I am honest, but I usually told her I had a seizure a few months ago because I was never concerned in the past because they have always happened in the morniings with an aura. Something has happened to change that though. My most recent was this morning and my tounge is still bleeding (7pm). I am going to call her in the morning and set up an appointment. This wasn't an isolated incident.

Has anyone had this happen? 16 years of living with epilepsy and it's like it suddenly got worse one day. Any suggestions or things to speak with my neuro about? Any advice would be very much appreciated because I am getting very nervous.

Thank you,

Missy

Comments

Well I was diagnosed before

Submitted by just_joe on Fri, 2015-01-09 - 12:05

Well I was diagnosed before they came up whit the new syndromes and types of epilepsy. I went a little over 3 years without a seizure of any kind and they started again, I haven't had a convulsant seizure in about35 years or so. I still have seizures and yes at times they get stronger or the number of seizures is higher. At times it was because the medication levels needed to be increased because my body had changed. Stress can be a factor and many people know how to handle it well. However what you posted is stress on top of stress on top of more stress and I do know that all that stress can cause seizures since that has happened to me. If your body has changes and your medications have not changed in years then yes that could be a factor. Hormonial changes do effect your medications too. You will see many posts from women having seizures near their time of month so thake that in mind too. If you were taking medications because you were sick then those medications can effect the medications you take to control your seizures. A minimal change can do it. Taken meds 2 times a day those dosages need to be 12 hours apart unless the doctor has told you when to take them. If yo utake meds at 7 am and delayed the night dosage to 10 pm then that 3 hour delay can cause break thru seizures...As for driving and not wanting to lose your license you do need to think about why. Laws are written to protect the populace. It may cause you to have to get up earlier to get to and from work of other places but what would happen if you had a seizure while driving. Could you hurt someone or yourself? If on a freeway could that accident cause damage to many cars and injury many people? I have had epilepsy for 50+ years and have never had a license. I learned how to get arround in cities and other places without driving. Regulations written into the laws require the doctors to tell the DMV about your seizure and it also requires the doctor to tell them when your license can be unrestricted. The restriction may hamper the way you get arround but it is written into the laws. I hope you get the assistance you need and you get seizure free Joe

Well I was diagnosed before they came up whit the new syndromes and types of epilepsy. I went a little over 3 years without a seizure of any kind and they started again, I haven't had a convulsant seizure in about35 years or so. I still have seizures and yes at times they get stronger or the number of seizures is higher. At times it was because the medication levels needed to be increased because my body had changed. Stress can be a factor and many people know how to handle it well. However what you posted is stress on top of stress on top of more stress and I do know that all that stress can cause seizures since that has happened to me. If your body has changes and your medications have not changed in years then yes that could be a factor. Hormonial changes do effect your medications too. You will see many posts from women having seizures near their time of month so thake that in mind too. If you were taking medications because you were sick then those medications can effect the medications you take to control your seizures. A minimal change can do it. Taken meds 2 times a day those dosages need to be 12 hours apart unless the doctor has told you when to take them. If yo utake meds at 7 am and delayed the night dosage to 10 pm then that 3 hour delay can cause break thru seizures...As for driving and not wanting to lose your license you do need to think about why. Laws are written to protect the populace. It may cause you to have to get up earlier to get to and from work of other places but what would happen if you had a seizure while driving. Could you hurt someone or yourself? If on a freeway could that accident cause damage to many cars and injury many people? I have had epilepsy for 50+ years and have never had a license. I learned how to get arround in cities and other places without driving. Regulations written into the laws require the doctors to tell the DMV about your seizure and it also requires the doctor to tell them when your license can be unrestricted. The restriction may hamper the way you get arround but it is written into the laws. I hope you get the assistance you need and you get seizure free Joe

Well I was diagnosed before they came up whit the new syndromes and types of epilepsy. I went a little over 3 years without a seizure of any kind and they started again, I haven't had a convulsant seizure in about35 years or so. I still have seizures and yes at times they get stronger or the number of seizures is higher. At times it was because the medication levels needed to be increased because my body had changed. Stress can be a factor and many people know how to handle it well. However what you posted is stress on top of stress on top of more stress and I do know that all that stress can cause seizures since that has happened to me. If your body has changes and your medications have not changed in years then yes that could be a factor. Hormonial changes do effect your medications too. You will see many posts from women having seizures near their time of month so thake that in mind too. If you were taking medications because you were sick then those medications can effect the medications you take to control your seizures. A minimal change can do it. Taken meds 2 times a day those dosages need to be 12 hours apart unless the doctor has told you when to take them. If yo utake meds at 7 am and delayed the night dosage to 10 pm then that 3 hour delay can cause break thru seizures...As for driving and not wanting to lose your license you do need to think about why. Laws are written to protect the populace. It may cause you to have to get up earlier to get to and from work of other places but what would happen if you had a seizure while driving. Could you hurt someone or yourself? If on a freeway could that accident cause damage to many cars and injury many people? I have had epilepsy for 50+ years and have never had a license. I learned how to get arround in cities and other places without driving. Regulations written into the laws require the doctors to tell the DMV about your seizure and it also requires the doctor to tell them when your license can be unrestricted. The restriction may hamper the way you get arround but it is written into the laws. I hope you get the assistance you need and you get seizure free Joe

Getting Worse...No warning

Comments

Well I was diagnosed before

Submitted by just_joe on Fri, 2015-01-09 - 12:05

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