Hi everyone, Im new here

[Tracy-Lynn]

Hi there everyone, and as you can see Im new here. I don't know if I am having seizures but Im definately looking for help, and needless to say I am feeling helpless and fed up at the moment. To describe what is happenning to me feels difficult. This happens mostly when I am very tired it seems, but I will be doing something or other, 90% of the time im in bed trying to go to sleep when it strikes. It feels like a lightning bolt sensation in my body.. it feels like it starts in my chest and spreads out like an explosion..along with it comes a wierd sound or feeling of fear, or a strange smell on occasion. Every single time, I percieve that the room is filled with very fast flickering lights. These episodes last anywhere from 10 seconds to a minute.. sometimes its just once, and sometimes its many times, like 7 or 8... some nights none.. Im not sure what to do but I did see a neurologist for other symptoms i was having.. eeg and sleep eeg were done and found nothing.. has anyone been accused of anxiety, mental problem, stress, etc.. I feel like some doctors just totally dissed me.. does anyone else share my symptoms or know anything about this?? i feel desperate.... Thank you for having me here and I hope someone, anyone can help me...this is going to sound crazy but I have way more of these right around the time im going to have my period..

[epileric]

Good to have you here. What you described as feeling like being hit by a lightning bolt is a good way to describe the sensation I get in my head during some seizures. Hopefully this can help Epilepsy 101 - Part FAQ, Part tips and advice The first link telling the different types of seizures might should help you define what's happening.

The people here are great, I'm sure more people will be by soon with more to say.

Once more, welcome

[Tracy-Lynn]

Thank-you .....

[all_new_me89]

lots of people i know try to keep a diary, but i notice yours seem to be at night. you could try some sort of simplified diary like a little dot sticker on a calendar. try to get yourself into a relaxed state before bed- a shower, bath, a little light reading, a hot drink, even a few yoga exercises. try to keep track of your eating habits around the time of your period- they do change as you crave somehting without realising it sometimes. stimulant drinks or sugary/salty foods may well have an effect on how your body reacts to the hormones. also, keep yourself well hydrated- plenty of water or fruit juice if you arent a water person. it sounds strange but my episodes happen more frequently when i havent drunk much water so im gradually figuring stuff out as i go along. also, keep nagging thse docs or change the doc if they dont listen. take a copy of the diary thing, explain it so they can schedule something to coincide with the high-activity times of the month.
talk to these guys a lot-they know what they are talking about so venting can help you de-stress. good luck!!

[epileric]

Actually I sleep with a pad & pen in my headboard so if I do have a nocturnal seizure I mark down the time then go back to sleep.

That way I can mark it down in my schedule where I keep track of when I sleep, when & what I eat, etc.

[all_new_me89]

sounds like you are one of the lucky ones who actually regain conciousness after a fit. im out for about 2 days. theres no way i could hold a pen!

[matchu]

what if you do not understand you just had one, or can't be sure if this one is actually the last one, and time has not moved. I am going to have to just keep my time as if I were at work.

[epileric]

sounds like you are one of the lucky ones who actually regain conciousness after a fit. im out for about 2 days. theres no way i could hold a pen!

You're right, I am lucky because mine are mostly partials. I've had a few T/Cs, one kept me out for 3 days (that was my first T/C) the others usually keep me out for about 12-36 hours

[matchu]

I have both, but I have forgotten what is what, need to re-study the many types. Do you record your absent seizures? most of the time, I am trying to remember what I am doing. I can't see doing the diary, yes i set it up but I lose interest. I have problems finishing lots of things. Keeping my room clean forget it, I can wash dry fold, but I never put my clothes away.
I made a mistake of not taking my non anti-epileptic drug meds because i was feeling great. doh was that a lesson learned.

[Tracy-Lynn]

Thanks for the responses, and I will start the diary thing. That will help me check the frequency etc.. I just wonder if anyone else shares any of the symptoms im having..

[Ruth]

Hi Tracy

After 60 years of epilepsy, I was told by a neurologist that I do not have epilepsy.

Have you had a long video EEG? They are for a long time and it will show up any seizures. Stay here, you are very welcome and we are glad to have you.

[Tracy-Lynn]

I havent had one of those.. maybe i should ask for that.. Thanks

[Ruth]

Hi Tracy

Let us know what it shows. Keep us posted and stay with us.

[Tracy-Lynn]

Its going to take forever. I don't even get to see the neurologist again until may 26.. and then i'll probably have to wait again..i think those kind of tests are done at our hospital.. so that means i could be waiting awhile...

[No Shame]

Feast--some of my Neurology records say that i have a seizure disorder-not otherwise specified (NOS)...means they havent figured out if my abnormal brain waves are epileptic in origin. I am wondering if you still have seizure symptoms but not epilepsy??? Epilepsy is a blanket statement for 2 or more seizures, but there are non-epileptic seizures too...do you still have those, or are you seizure free? I am going through the same thing Tracy-Lynn...the Neuros want me to go for a 5-day EEG, although i had a 2-day EEG which turned back nothing except pre-seizure waves during sleep (about 1 per hour). This can be extremely confusing as you try to work through the information, as a newbie and well, even after a few years! Trust your gut, and realize there are some things that take awhile to explain!

[Tracy-Lynn]

In mid december i started noticing these sensations I spoke of above. On Dec 25 I had a bigger more obvious seizure, that i dont recall. My husband described it as me losing conciousness and going very stiff, but not with the full body shake. It happenned again on Feb 12. And these sensations persist... and btw I called the neurologist today and now they wanna see me on April 9.. so thats good news.

[No Shame]

Tracy-Lynn: were your EEG's interpreted as "normal," and put in writing that way? You should have received a letter from the Neurologist who interpreted them with a normal or abnormal description. Mine have all been abnormal -due to excess theta delta waves (sleep ones) during awake tests. My sleep-deprived test did show the spikes though so they are basically just going with that. I am glad you got your appointment moved up-did your sleep docs rule out narcolepsy by doing the excessive daytime sleepiness test? That would have been done during the day, most likely right after the night testing.

[Tracy-Lynn]

I have had 2 eeg regular ones, 1 sleep eeg. I havent had the other you describe. when they do sleep eeg here, you dont go during the night.. you sleep 4 hours the night before and then go there in the morning and then you sleep for 1 1/2 hrs.. thats it. the regular eeg only take about 1/2 hr. and yes they were interpreted as normal.. and strangely that dissappointed me because it still leaves me feeling lost

[Ruth]

Hi No Shame and Tracy

I have some EEG's that have showed up normal. They can be normal if the medicine you are taking is working. You might not have a seizure during the test.

That is why mine are coming out normal. The medicine I am on is working. Some doctors do not believe I have epilepsy. EEG's are not absolute. I am 66 and I have had epilepsy for 60 years. First, I had absence seizures. Then, when I turned 21, I had 3 tonic clonic seizures in a row. This went on for years. All of my EEG's turned out abnormal. They were trying to get my EEG to show up normal. That would mean my medicines were working. The neurologists told me that. Then, in 1979, I had my first status epilepsy, that is where I had seizure after seizure. My husband was told I was going to die. I went into a coma. I was sent to a hospital that was cheaper to let me die. They would not give up in finding medicines that would work. They succeeded. I had a second status in 1995. Again, my husband was told I was going to die. I am still here. I had numerous EEG's. They all showed up abnormal. My last one showed up normal because my medicines are working when they do the EEG. I still have seizures. I might have some NOS, but I am an epileptic. That has been proven since my first EEG. It showed up seizures then.

No Shame, pre seizure means you do have epilepsy. If a spike shows, it is epilepsy.

Tracy, I am not a doctor, but what you described is an epileptic seizure.

[Tracy-Lynn]

Yes i was surpised they agreed to move up my apointment, here in the land of waiting forever for a specialist.. ive seen people wait more than a year sadly.

After all this I cant fathom any doctor would say that you dont have epilepsy...but some doctors are funny like that