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New to Epilepsy...so confused

Tue, 03/24/2015 - 20:31

First off I am sorry if i sound a little dumb or too confused. This is all very new to me and after reading a few posts i have some questions i am hoping you guys can help me with. 

In December i had my first seizure and it was a Grand Mal and i broke my clavicle in the process. Since then i have had an EEG and have been diagnosed with Epilepsy. After reading a few posts i have noticed a few symptoms others are having that i have had my whole life and am wondering if they are connected to my epilepsy.

Since i was a child i have had deja vu's often

I often will smell cigerette smoke though there is no smoking in the area

sometimes the ceiling slides or moves in circles while i am sitting still

I have large memory gaps in my life

I have never slept well and have always woken up multiple times during the night for as long as i can remember

sometimes i get the sensation i am falling to one side when i am sitting still

One of the things i am most concerned at this point is that i have been losing parts of my day. I have short memory loss during parts of my day but i can't tell if i had a seizure and usually i am alone. I was on Ambien for a long time and attributed memory loss to the meds but i am off it and i am still having memory loss especially right before i sleep. when i wake up i am unable to remember 1-2 hours of what happened before i went to bed. And lately i have felt like my brain is pixilating like my thoughts are not clear. 

Could these be partial seizures? should i be tracking these to report to my dr?

Any help would be greatly appreciated i am new to all of this.

Comments

agree with jazz comment.

Submitted by Anonymous on Tue, 2015-03-24 - 23:54
agree with jazz comment.  Memory problems, fuzzy thoughts all sound like seizure or effects of seizures.  I went through 3 primary care drs and one neurologist before a nurse friend said maybe memory stuff and feeling odd, aura and going somewhere else might be seizures and sent me to epileptologist  which is a neurologist who specializes in epilepsy, who diagnosed me in 10 min.   Took me a few years to get to him. It is very confusing during this process.  Any info you can give doctor helps them.  just get a calendar and write stuff down.

many of the things you posted

Submitted by Anonymous on Wed, 2015-03-25 - 10:51
many of the things you posted sound like they could be seizures. As for being partial seizures it is possiable, The loss of time could also be absence seizures since they can look like the person in day dreamimg.As for telling yor doctor yes the more information he has the better he can come up with medicatios and dosages to control your seizures. Also when you say doctor is he a neurologist that specializes in epilepsy? If he is then  he diagnosed you not onl from your EEG but also from what he saw and heard in your visit..As for tracking them I would suggest you do and one way to do that is by using the Ny Epilepsy Diary which can be found in the get help section or on almost every page in this site. Watch the video and use it. Give your neuroloogist permission to bring it up. If you do he can see more since it has several things that can be looked at and he can use the graphs and there is a note pad in it in which yo can put daily notes as to what you thought might have happened or did happen. Were you late in taking you meds. Anything that was different that day. If I have a seizur I note the length of time in that seizure and the time to focus (get back to normal. The diary could be the diary iastien said to get and it has a lot of room for notes. There are a lot of people think that the Dea vu is a warning and to many it is. But in eality it is a seizure itself.When in a visit to yor neurologist ask questions. With mine if I don't ask questions then he asks me why no questions. He knows that for every question he askes me I have one for him. You can learn alot with questions and they can get information from your questions.If you have been prescribes medications please follow the instructions. If taken 2 times a day those times should be 12 hours apart,And YES there is a reason for those times. .That could be one of oyur questions. I take mine at 8 am and pm. If taken at 8am and 10 pm then that 3 hour delay  could cause a breakthru seizure because of the delay. It takes time for your body to get used to the meds which woud be 3-4 weeks. That time period is usd to have your body get  used to it and to build up theraputis levels. Seizure medications are not like asperin where one size fits all.By all means fell free to post your questios in here. There are a lot of people in here that will answer them. Some because we have been thru this and are still dealing with it. Others because they have a child or loved one going thru it. Some use their own knowledge and experiances. Others use the knowledge because they dud research. I do hope this helps and please come back and let us know how the visit went.Joe

Donetta.Try to record

Submitted by nightfighter@nc.rr.com on Tue, 2015-04-07 - 17:22
Donetta.Try to record everything. Your neurologist will want to see a comprehensive history of the disorder. Date/ Time/ Aprox. Duration Time / After effects. You want to give the Neuro as much info as possible. Learn all the terminology about the disorder so you can discuss the situation with clarity. Try to open a clear channel of communication with your Neuro. He/She is working with you and for you.

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