My first name is Erin but you can use my last name. I know I had my first known seizure at age 6 or 7 and it was never followed up. For years I have been treated for mental illness due to the auras that I experience and am finally getting to the bottom of things. I had a CT scan that showed a hypodensity on the left frontal lobe. My EEG came up negative even thought I experienced a seizure during the procedure during the photosensitivity part. I go for my MRI tomorrow. It may sound crazy but I hope they do find something so I can get treatment started. I have seizures almost all day long every day and have a lot of trouble with memory and stuff like that. I still am waiting for the order to go see the neurologist. I am hoping to meet others with seizures and gain support from the community of followers here. Look forward to hearing from others and would love to hear your story as well. Thanks for taking the time to read my post. Erin:rock:
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jenbayly17
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Erin
I also had a seizure on the first EEG that they did for me and with further tests found out that I have epilepsy. The auras and seizures can be frustrating but with the right neurologist you can find different treatments that will make things easier for you hopefully. This is a great site for information and support. Good luck with your tests and please keep in touch with this group so we can throw out any suggestions for things we have experienced or know about. Welcome to the group
I also had a seizure on the first EEG that they did for me and with further tests found out that I have epilepsy. The auras and seizures can be frustrating but with the right neurologist you can find different treatments that will make things easier for you hopefully. This is a great site for information and support. Good luck with your tests and please keep in touch with this group so we can throw out any suggestions for things we have experienced or know about. Welcome to the group
I have auras a lot and a lot of mood swings stuff like that. It gets frustrating because my memory is affected and people in my family don't seem to understand that I really don't remember all I say and do. Today I have my MRI. I hate to say it but I actually hope they do find out what is going on and where. My primary doc hasn't even scheduled me with a neurologist yet and I have been going through all of this about three months now. Some of it is my fault due to transportation issues I have had to schedule and reschedule a lot of testing. This whole thing is just frustrating. I want to get treatment started and hope I will find relief with medication. I know that that can be very difficult too. I have been on seizure medication with no improvement of mood before. In the past they put me on depakote and I am allergic to topamax. Do you have any advice as to what to do that may help without medication as it may take awhile before I actually get on something?
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Hi Erin, welcome to CWE!
I hope you can get some answers and treatment help soon. In the meantime, it can help to be proactive about your overall health, and to keep a seizure diary. See: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
The diary can help you track how your symptoms are changing -- whether they are escalating in kind, duration, or frequency -- and how they respond to medication. The diary can also potentially help you identify and avoid triggers that may be provoking your seizures or making them worse. The #1 trigger is fatigue, so finding ways to improve your sleep quality can make a big difference. Triggers can take many forms: Food sensitivities or intolerances (MSG, aspartame, caffeine, gluten, etc.), metabolic issues (low blood sugar, dehydration, nutritional deficiencies), illness/infection/injury, certain medications, flashing lights (as you've discovered via your EEG), hormone fluctuations (thyroid, estrogen)... basically anything that can cause physical, physiological, environmental, or emotional stress. If you can find your specific triggers, you can take steps to minimize them where possible.
Some people have been able to reduce their seizures by using a dietary or other non-medication approaches. You can read about those here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
Best,
Nakamova
I hope you can get some answers and treatment help soon. In the meantime, it can help to be proactive about your overall health, and to keep a seizure diary. See: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
The diary can help you track how your symptoms are changing -- whether they are escalating in kind, duration, or frequency -- and how they respond to medication. The diary can also potentially help you identify and avoid triggers that may be provoking your seizures or making them worse. The #1 trigger is fatigue, so finding ways to improve your sleep quality can make a big difference. Triggers can take many forms: Food sensitivities or intolerances (MSG, aspartame, caffeine, gluten, etc.), metabolic issues (low blood sugar, dehydration, nutritional deficiencies), illness/infection/injury, certain medications, flashing lights (as you've discovered via your EEG), hormone fluctuations (thyroid, estrogen)... basically anything that can cause physical, physiological, environmental, or emotional stress. If you can find your specific triggers, you can take steps to minimize them where possible.
Some people have been able to reduce their seizures by using a dietary or other non-medication approaches. You can read about those here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
Best,
Nakamova
Thank you Nakamova. I'm diabetic and already knew about the LGI diet. I found that to be a little helpful already. I also cut out all sugar free sweetners. That helped a lot. I started a diary about a week ago and am continuing to look for triggers. I know that bus rides do it to me and so does getting upset. I'm learning more and more everyday. I also found that I seem to have them more during and post period. Just kind of thinking outloud here. I went for my MRI today and hopefully will have some answers by the end of the week. I read the links and found them to be helpful. A friend of mine mentioned the 5-htp not long ago because I have drastic mood swings with my seizure activity. I can get pretty mean and nasty before I have one. Then it is followed by depression because I feel bad for how I have acted towards my loved ones. I am hopeful though that with time and a great neurologist I can gain some perspective and control over all of this. Wish me luck Erin
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Hi Erin,
You've come to the right place if you're looking for support. The people here are amazing. I was diagnosed with Epilepsy about a year ago. I'm 25 now and have had to deal with the loss of a great deal of independence (like my drivers license, my ability to shower on my own, and a great deal of privacy). The people here have been an incredible gift and are wonderfully supportive. I wish you nothing but good news and answers from your tests. If you ever want to talk please feel free to message me.
-Mary
You've come to the right place if you're looking for support. The people here are amazing. I was diagnosed with Epilepsy about a year ago. I'm 25 now and have had to deal with the loss of a great deal of independence (like my drivers license, my ability to shower on my own, and a great deal of privacy). The people here have been an incredible gift and are wonderfully supportive. I wish you nothing but good news and answers from your tests. If you ever want to talk please feel free to message me.
-Mary
Thanks Mary. I really like this so far. I am hoping they find out what is going on I have been having black outs since I was about 13 or so and now I am 37. I wasn't even aware that I was having them. Since I cut out the asparatame and sugar free sweetners I am not blacking out as much still having seizures but not going as deep into them. From what I can guess I have both simple partial and complex partial seizures. Not confirmed yet. My ex-husband thought I was menatally ill because of the auras and I have been treated for the past 12 years for it instead of seizures. I have had ct scans before and they were all normal until this last one in July. I hope it isn't brain damage from having seizures all this time. The prob I have is that I still talk and react when I have them. It is really hard for others to tell if I am having one. It's almost like having multiple personalities cause I say and do some pretty mean things when I am having a seizure. I can get pretty combative too. I guess once I threw a chair and knives at my boyfriend. I always thought he was making those stories up because I have no memory of the events. My ex husband said I used to beat him up. I hate it. I am not a violent person when I am with it. It scares me I don't want to hurt anyone. Do you have any advice on how to help my family deal with the emotional part of all this and also so they can recognize that I am having them? Just wondering.
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I wish that I could give you more advice on the best way to help your family through, but my family is VERY unconventional and I have found that our method of dealing with issues (usually long talks over coffee and jokes about the issue) are difficult for some people to understand. Still... I think you could put both of those questions out to the community and you would get a multitude of answers and bits of really helpful advice.