EEG clear during a seizure?

[horsehead]

I know a few of you have already told me this but how many of you have had a seizure, spell,whatever, during an eeg and it came up with nothing?

I have had 3 EEG and 1 video EEG, with 3 spells and nothing showed up.

[Loopy Lou]

I'm the opposite. I had a few small seizures during my 3/4 of an hour EEG, which i barely noticed myself, but it got picked up on a lot. Mind you, still haven't been able to get the full details off my neurologist.

I know there are some people on here who have had epilepsy for years and years, and never had an abnormal EEG.

[Rae1889]

I have my EEG on teh 25th. So I'll let you know if it shows up or not. *crosses fingers* here is hoping.

[seizingbeauty]

I've had the same problem. Other than one sleep deprevation test, all my test have come back clear.

[Meetz1064]

sort of like Loopy Lou. Except, I've had them, and NOT known it AT ALL. But, that's because they're all nocturnal......and at the time, it was one of the new types of E rearing its ugly heads.....

[Bernard]

Sometimes, the seizures are too deep in the brain to show up on an EEG.

[PhylisFeinerJohnson]

Same thing happened to me. I had a flaming seizure on the table (very ugly) but it didn't show up on the EEG. And this was after I almost died from a cascade of seizures. My heart had stopped, I went into a coma, I was put on life support for 4 days, the whole deal.

Go figure...

[tam bam]

Hi Horsehead,

This is tam bam. I haven't spoke to you in a while. As you know I am going through the same thing you are. I did want to make contact with you to let you know that I am doing better. My family doctor intervened and put me on back on Topamax and Lyrica. I was on both of the meds before but not at the same time. After many, many doctors later I was taken off the meds and the Topamax seemed to help but one doctor was an idiot and decided it was a great idea to stop it. Genius. Anyway, I now have a great family doctor and I think she understands seizures more than any neurologist I have spoken to. She even told me the type of seizures I am having which are complex partials that can turn into generalized seizures.

I have been thinking it over for sometime now and have decided to not go though with anymore tests and set myself up for anymore upset and let downs with tests and doctors to try and find a cause for my seizures and most importantly the EXPENSE. I am going to switch to another doctor after the holidays because I am very upset with current one and his office staff. They will not return my calls when I have a question or a problem and the doctor has no plan as to what to do with me. Now I have an insurance issue with my EEG and they will not send my insurance company my records. It is the most insane thing. I called my neurologist's office twice and asked them and they act like they do not know what is going on or where my file is and they told me they will call. I am still waiting on that call... Anyway, sorry for the rant. Had to get that out. My point is I am going to find another doctor to help monitor my meds that I am currently on since I am doing better, no thanks to that neurologist, and be done with it. I am not going to have this other neurologist regulate my meds simply becuase if I need a Rx filled then I will probably never have it called in. Thats the plan. I am just glad I feel better and I hope to continue to do so.

Horsehead, I hope you find that right doctor who believes you and that can help you get on some kind of medication. Are you on any meds at all? I meant to ask you that before. I know there is someone out there to help us. I just know there is but too many of these neuros rely on tests and until that day there are new tests then I think we are considered out of their realm of expertise. Some doctors do not rely on these tests and I think they are rare, unfortunately. I am just to the point that if I can find someone who doesn't think I am a freak and can treat me like a human and help me with my meds and the insurance company, I'll be okay. It is when doctors want to start running tests and trying to figure things out is what I think got me into trouble in the first place so I quit for now and I will find someone else JUST TO REGULATE MY MEDS.

Maybe you can find someone too to help regulate you until you find the answer to your seizures. I do believe that you are having seizures but that they are deep within the brain like mine are. Don't give up girl. I am sending many, many hugs. I also wish you and your family a wonderful Thanksgiving.

tam bam

[vapour]

Hey horsehead, sorry you are going through this ordeal, i think its common for alot with epilepsy.

When I had my first EEG I did not have a seizure during it, so it only picked up on a very slight abnormality in the left temporal lobe.. not enough for a diagnosis....doc said it could have been nothing.

Wasnt until my second EEG when I was having very bad simple partials and complex partials (called up a epileptologist who got me in the same day and did the EEG herself) that my seizures were picked up. BUT not ALL of them were.......

I am not sure where in the brain your seizures rae coming from, but I heard its easier to pick up temporal lobe ones becuase its on the outside of the brain... so it could be that they are deep (some of mine were obviously deep accourding to her because not all were picked up as mentioned)

I think is you have a good neurologist or epileptologist they will be aware of this and have to take into account other things such as watching you have a seizure or your description of what is happening.

Dont be discouraged, she thinks I could have had epilepsy since I was 17 because I had a few experiences then.....but it was not until over a year ago it became more pronounced... and it took until July to get a concrete diagnosis... before then it was only a suspision.

Perhaps look at it this way, dont be so bothered by a diagnosis, instead...think about just getting the right treatment to stop it, if your doc prescribes anti-seizure meds and it stops... then that is really what your aiming for.... not a label.

Hope this helps

take care

[vapour]

Umm I just realized how I accidentally missed the S off your name LOL what a MISTAKE ROFL I tried to EDIT but I dont know how. i am SORRY ROFL.. thats a terrible typo rofl.

[vapour]

OK managed to sort out the typo lol.... please dont ban me

[horsehead]

Vapour I have done that too with my name. I wonder why no neuros that I have seen have mentioned that an eeg doesn't always pick up a seizure. Many doctors have seen my spells and most have called them seizures.

Tam bam i have given up on all the tests too. I am not on any meds for the spells. I do take lexapro for anixety and enalapril for high blood pressure. Also advair for asthma. At least no one has said I dont have asthma or I'd be dead. lol. I'm so glad you are doing better thats what really matters. I had another spell last night, woke up and kindof gasped and shook all over . i still feel sore and tired pretty much out of it. The feeling i get is so strange in my sleep I cant even discribe it.

Everyone else thankyou for your replys it is good to see I'm not alone in this.

[k2s4ever]

My 72 hour ambulatory EEG did not detect the two simple partial seizures I had during the recording period. My 1 our outpatient EEG showed absolutely nothing at all, and I had a simple partial seizure about one hour before it.
However, the 72 hour EEG showed spikes and such, as well as left temporal lobe slowing, enough corroborative evidence for my neurologist to feel I have simple partial seizures. He thought it anyway. It still did not show "classic" seizure activity, but that ended up not mattering-it's clear I have simple partial seizures.

[annietn41]

I've never had an abnormal test of any kind - I've had video monitoring, sleep deprivation, etc. and my EEG has always been normal. My neurologist said a lot of times they won't show up - I had seizures when I was in the hospital doing video monitoring and they didn't show up. I asked him how he knew for sure I had epilepsy and he said from your symptoms I am 100% sure you have epilepsy (I am too) and besides that the meds would not work if I didn't have it - makes a lot of sense!

Rita

[horsehead]

Well the meds did work for me too I went from spells every night to 9 spells in a month. As soon as they took me off the meds for the video eeg i had spells again every night and one during the day. As i said though they didn't show up. So the neurologist took me off the meds and said my spells must be due to anexity and that the medicine only worked because of the placebo effect. Strangely enough I continued to have spells nightly for about a week afer being taken off the meds then they stopped for awhile and i have had two since then.So I dont know. My hospital bills are huge and I dont want anymore tests. Maybe someday they will find something and maybe not.

[epileric]

It sounds like your initial seizures after being taken off of your meds could have been a form of withdrawal.

[annietn41]

I went to Vanderbilt Hospital here in Nashville and had the video monitoring - the seizures I had there never showed up. This neurologist (who I hated!) wanted to take me off the pills and would not refill my script - by that time I was completely off of them anyway. I tried it and my seizures came back in full force so I found a new neurologist who I loved (who has since moved) and he put me back on them - he said I obviously had epilepsy because the medication takes them away and would not if it wasn't epilepsy. I've also had abdominal seizures and those are obviously seizures - they were full blown seizures.

Rita