I am a 31 year old female. I had my first grand mal seizure 2 years ago. Before the seizure I felt out of it and was starring into space for about 7 seconds on two different occassions within a 1/2 hour period. Then, I fell down and had the grand mal seizure. It was an issolated event so I thought. I had an MRI and an EEG both of which came back normal. Afterward, over the course of about a year, I began to notice very short absent spells when speaking to others. It was not very often and could usually be linked to poor diet or lack of sleep. The absent spells lasted only 1-2 seconds at most and only happened maybe 1 or 2 times a month. However, they are so short that unless I was mid sentence and speaking to someone, I would probably never notice that I had one. I do recall after being aware of these absent spells that I had a few of those spells (maybe 3 over the course of my life) all lasting 2-3 seconds before the grand mal seizure. I had another EEG and they found 1 spike and wave pattern induced by hyperventilation. My neurologist diagnosed me with complex partial seizures and perscribed Keppra but I did not regulary take it. I have always been terrible at remembering to take pills and I didn't really feel like this was a big problem in my life. I am very intelligent with 2 young children and a busy career and I felt fine so I just discontinued taking the meds. I started training for a marathon and noticed that when I was running regularly and getting enough sleep - I never had an episode. Now, I might have an episode once every 1-2 months and even then I am not sure I am having one. But, again maybe I am having them more than I think and unaware of it. My question is - do I need to be back on the medication? It seems to be a very mild epilepsy - but because the absent spells seemed to develop into a grand mal seizure that one time, I am worried that I could have another big seizure and hurt someone while driving. Also, even though they rarely happen, it is embarrassing to have an absence seizure, even though they are very short, when speaking to a large group of people. Usually the people I am speaking to just look a little confused and then I think they probably assume I just lost my train of thought for a moment. Can this be controlled through diet and exercise? What criteria have to be met to put a person on medication - or take them off? Does this sound like a very mild form of epilepsy? Also, I have an identical twin sister who had 1 grand mal and many absence seizures a day when she was a child but she outgrew it. Could this be genetic? If so, is medication then more necessary? Why would I suddenly develop epilepsy as an adult and not have any episodes in childhood?
New and seeking advise
- Thread starter SaraT
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Oops I can't spell!
:roflmao: I just realized that I spelled advice wrong - Ha Ha - maybe I am not so bright after all! I tried to fix it but now I am stuck with a silly looking title I think - anyway and ADVICE you could give would be appreciated.
:roflmao: I just realized that I spelled advice wrong - Ha Ha - maybe I am not so bright after all! I tried to fix it but now I am stuck with a silly looking title I think - anyway and ADVICE you could give would be appreciated.
RobinN
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Hi Sara - welcome. No worries about spelling errors. We all tend to have that problem from time to time.
I want to share some info that took me a few years to get into my head. Epilepsy is only a label that means you have had two or more seizures. It is not an illness. Seizures are the symptom. For my daughter, making nutritional changes has raised her seizure threshold. It hasn't been a quick fix, but over time she has dramatically reduced seizure episodes. We also have done Neurofeedback which also helped train her brain not to use seizure as a way to release itself.
Quality of life has increased tenfold.
I want to share some info that took me a few years to get into my head. Epilepsy is only a label that means you have had two or more seizures. It is not an illness. Seizures are the symptom. For my daughter, making nutritional changes has raised her seizure threshold. It hasn't been a quick fix, but over time she has dramatically reduced seizure episodes. We also have done Neurofeedback which also helped train her brain not to use seizure as a way to release itself.
Quality of life has increased tenfold.
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Hi Sara --
You mentioned that you have two young kids -- sometimes the stresses of pregnancy can trigger seizures. And there may indeed be a genetic link or birth trauma link if your twin also experienced seizures. But in over 50% of epilepsy cases, the cause is unknown, so it may be that you never find out what the initial trigger was.
The main thing is to see what you can do to prevent additional seizures -- there are a number of non-medication avenues to pursue -- search on this site for info about diet, neurofeedback, etc.
Best,
Nakamova
You mentioned that you have two young kids -- sometimes the stresses of pregnancy can trigger seizures. And there may indeed be a genetic link or birth trauma link if your twin also experienced seizures. But in over 50% of epilepsy cases, the cause is unknown, so it may be that you never find out what the initial trigger was.
The main thing is to see what you can do to prevent additional seizures -- there are a number of non-medication avenues to pursue -- search on this site for info about diet, neurofeedback, etc.
Best,
Nakamova
RobinN
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You might be in the other 50% where you do find the cause. It is my belief that you should be proactive and attempt to connect all the dots. They all might lead to your answer, or at least to a place where you can raise your threshold enough to improve the quality of your life.
i get so mad when i hear people, doctors even neurologists saying your/my eeg is normal. GET WITH THE PROGRAM people! unless you have a seizure while you are plugged into the eeg machine your readings will be NORMAL! an eeg is a real time reading it can not predict the future nor is a window into the past, it is the here and now nothing more.
an mri is a picture, a soft tissue x-ray of sorts. any anomaly in the brain that could be causing seizures may be too small to register on mir or any other imaging device. if any one is having seizures that can't be traced ask for a monitored eeg. they are miserable! you will be wired up for a normal eeg. you will be in a private room with a vid cam pointed at you. they will wean you off your meds, you must have seizures; if taking you off meds does not induce seizures you will be sleep deprived. try to stay awake for 36-48 hours while in bed.
there is so much more to say here any one wanting more send me a pm.
an mri is a picture, a soft tissue x-ray of sorts. any anomaly in the brain that could be causing seizures may be too small to register on mir or any other imaging device. if any one is having seizures that can't be traced ask for a monitored eeg. they are miserable! you will be wired up for a normal eeg. you will be in a private room with a vid cam pointed at you. they will wean you off your meds, you must have seizures; if taking you off meds does not induce seizures you will be sleep deprived. try to stay awake for 36-48 hours while in bed.
there is so much more to say here any one wanting more send me a pm.
RobinN
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We had a monitored VEEG and it was useless. They did not use it as a means to find out why she was having seizures. I think they only used it to satisfy me. Even they are only for a short window of time. If you do not have daily seizure, they won't show it unless they capture you having a seizure. Of course at the time I did not know this, and it was not explained to me in such terms. I had to research this information online.
Also, if your seizures are due to a food sensitivity, or hypoglycemia, it is likely that it won't show up on an EEG.
Also, if your seizures are due to a food sensitivity, or hypoglycemia, it is likely that it won't show up on an EEG.
RobinN
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My daughters first EEG I was told was abnormal. I was also told that after seizure activity, the brain can be in an abnormal state for a while. She has never shown seizure activity since.
I do believe it is how it is read. Some abnormal EEGs could just be ADD activity. It needs to be read by a specialist, and I have had specialists tell me that another neurologist most likely didn't know how to read the first one my daughter had. So there is disagreement amongst themselves.
What I believe, is that if there is abnormal behavior then there is a neurological issue. Even if it is non-epileptic it is still a neuro issue, and there needs to be plans made to figure out the cause. We tend to rely too much, in my opinion, on tests. They are good as a baseline info gathering method, but being all individuals, we need to dig deeper to find out WHY our body is reacting in this way.
Sometimes it is something as simple as the brain being out of sync. That is where neurofeedback is really useful. We have found it to be so, and I highly recommend it.
I do believe it is how it is read. Some abnormal EEGs could just be ADD activity. It needs to be read by a specialist, and I have had specialists tell me that another neurologist most likely didn't know how to read the first one my daughter had. So there is disagreement amongst themselves.
What I believe, is that if there is abnormal behavior then there is a neurological issue. Even if it is non-epileptic it is still a neuro issue, and there needs to be plans made to figure out the cause. We tend to rely too much, in my opinion, on tests. They are good as a baseline info gathering method, but being all individuals, we need to dig deeper to find out WHY our body is reacting in this way.
Sometimes it is something as simple as the brain being out of sync. That is where neurofeedback is really useful. We have found it to be so, and I highly recommend it.