eeg results.....help.

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I finally got my eeg results yesterday after waiting a month and 2 weeks. I am a bit frustrated and a lot confused. I was told on my voicemail that I had slowing over the right side of my brain that may not be specific to the diagnosis of epilepsy. I am very put off by this because I was told it was epilepsy and I've dealt with and coped with the diagnosis in a pretty positive light although I won't lie, at times it was rather difficult. As I am sure you all know. I have been all over the internet and perhaps my researching skills aren't up to par or perhaps I wasn't given enough information but I can't find anything that would explain what exactly it could be if its not epilepsy. I've had blood tests and those were fine. I've had an MRI and that was fine too. I have simple partial seizures quite a bit during the day and have had 3 tonic clonics now. I can't find anything about slowing on the right side of the brain and I've called my Dr. 3 times in 2 days and haven't received a callo back. (Mind you this is after calling several times for those eeg results and not getting a call back for 3 weeks) I'm really fed up and am at my wits end. is there anyone who can help me with any information. Ive been very optimistic about this whole thing and finally feel like I'm about to snap. Can anyone offer any information or advice on how to get the ball rolling? Any ideas of what this could be? I'm a very happy person who does have anxiety issues. My blood sugar levels are fine and so is my blood pressure. My brain looks fine and I don't have depression or anything. I'm just fed up with being ignored by my Dr. And not having the information I need to even be able to research. :( any help is appreciated.
 
Hi SlayerSophie,

I feel your pain mate. It is SOOOO frustrating to be told one thing, then have everything questioned again!! All I can say is that you know your body and it may take a while, but eventually you'll get a diagnosis and treatment plan that helps. Are you on medication?

Just so you don't feel quite so alone, here's my journey to diagnosis!!

I've been struggling for 2 years to get a solid diagnosis. I got a second opinion from a recommended Neurologist and he was so much better than the first. He put my symptoms and childhood epilepsy history together and diagnosed me with complex/simple partials. After finally getting up to the required dose of Lamactil I was "all fixed up" and epilepsy just sat right at the back of my mind. I was able to drive again!! For the past 6 weeks i'm having seizures again so i'm going back to see him 1st March. He said over the phone some of my symptoms are classic epilepsy and some are not. Maybe this means I have something else going on? I'm thinking vertigo as the 1st Neurologist diagnosed me with that. So who knows what he'll suggest. I've been keeping a seizure diary and as requested, getting voice recordings of friends who have witnessed first hand, my "episodes". Hopefully this will paint an accurate picture and aid the Neurologist in helping me. I have to resist the temptation to feel threatened and not believed. The first neurologist was very condescending and rude. He told me I was imagining it because my 24hour EEG came up clear. I had also had a holter monitor for dizziness and fainting and various tests for Glandular Fever/low iron etc in previous years so I guess I did look like a hypochondriac. Thankfully the 2nd Neuro put all the symptoms together and was surprised I wasn't diagnosed with epilepsy sooner, especially given my 15year childhood history of tonic clonics and complex/simple partials.
 
Sophie - we were told the same thing... Rebecca went on to have 50+ seizures.
I really became tired of all of the labels, and worked to learn all I could about healing diets. We made nutritional changes, and began to see improvements right away. We also did neurofeedback and saw other improvements.

I began to believe that conventional medicine does not know everything, and how our body functions is still a mystery to many.
 
Hi Sophie --

A negative EEG doesn't rule out epilepsy -- many folks who definitely have epilepsy never get a positive EEG. The EEG isn't a perfect test -- the results can be a matter of interpretation, and not every brainwave pattern that shows up correlates definitely to a particular disorder or brain state. Some people's seizures are too transient, or originate too deep in the brain to show up on an EEG. In the absence of a positive EEG, a neurologist has too look at the actual clinical information - i.e. your symptoms -- and make the best guess to see if epilepsy is indicated. If it seems likely, the next step is (usually) to treat with anti-seizure drugs. If these help control the symptoms, then that acts a sort of backwards confirmation of the epilepsy diagnosis. As Robin says, the name of the diagnosis is in some ways less important than finding a treatment approach that deals with the symptoms.

If your doctor isn't available or helpful, consider finding another.
 
Back in 2006 I had a SPECT scan done of my brain. It was interpreted as 'normal', but did show areas of reduced blood flow. I never felt confident in their interpretation that reduced blood flow to any area of the brain was 'normal', but what could I do?

I recently began reading a book about epilepsy. Apparently increased blood flow to certain areas of the brain (as determined by a SPECT scan) may indicate the focus of a seizure - and it's pretty reliable. Also according to this book, though not as reliable, decreased blood flow to certain areas of the brain (as determined by a SPECT scan) may indicate a seizure has ended.

I also had quite a few 'normal' EEGs before any seizure potential was picked up - went decades without a diagnosis. All I can say is I feel for you. EEGs are not reliable and it's a shame so many of us have to suffer.
 
I don't anything about the slowing of the right part of the brain, but I do understand about getting irritated with your Dr. I have had enough of the Neurologist that I was seeing. I wasn't being told nothing and they wouldn't say anything or what else could do. All I got was your Left Frontal Lope is enlarged. So I decided that I was gonna get the answers that I needed and wanted. So I found a clinic that deals just with epilepsy.
 
Ditto with this and thank you for sharing.
I woke up one day with my brain hooked on phenytoin, and since, it seems like the medical community has done little but to imply I'm stupid for being on it, while giving me some kind of 'evil eye' for not proving to them through an EEG or whatever that I need to be on it, while demanding I stay on it, or else. erstwhile giving me more.

what am I supposed to do?
ok medical community, you got me. now that I'm on these pills I guess I fell for your trap and now you own me.
 
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thank you nakamova for this post.
this is precisely what I've been needing lately.

more than anything lately I've been suffering from depression for failure to enlist in a long-term EEG study, and for failure to have an MRI or EEG ever show anything.

all I know is what I've heard from others about what happens while I'm unconscious, and pain and injuries suffered during these periods.

I don't need casual diagnoses thrown around on me like ignorant racist or sexist labels, and blame for having them put on me. At least victims of sexism don't need a prescription, and it doesn't affect their neurochemistry.


Hi Sophie --

A negative EEG doesn't rule out epilepsy -- many folks who definitely have epilepsy never get a positive EEG. The EEG isn't a perfect test -- the results can be a matter of interpretation, and not every brainwave pattern that shows up correlates definitely to a particular disorder or brain state. Some people's seizures are too transient, or originate too deep in the brain to show up on an EEG. In the absence of a positive EEG, a neurologist has too look at the actual clinical information - i.e. your symptoms -- and make the best guess to see if epilepsy is indicated. If it seems likely, the next step is (usually) to treat with anti-seizure drugs. If these help control the symptoms, then that acts a sort of backwards confirmation of the epilepsy diagnosis. As Robin says, the name of the diagnosis is in some ways less important than finding a treatment approach that deals with the symptoms.

If your doctor isn't available or helpful, consider finding another.
 
Thank you all for your input. It helps to know there are people out there who understand. I continue to have tonic clonics once a month and have noticed they are always the day before or the day of my period. I have had a 48 hour ambulatory eeg as I have had staring spells ( completely aware of whats going on though) and the results came back that I have seizures in my sleep and one of the few staring spells was definitely a seizure. So I guess there is some documentation there. I am allowing my boyfriend to record the next tonic clonic to show my neurologist. which I might add, we are communicating more and things have improved. :) She is tinkering with my meds and has recomended a healthier diet. I do feel better now that there is some proof and I cant tell you what a relief it is to hear from all of you who have been down the same path as I.
 
i have generalized epilepsy for 15 yrs and have had just as many negative eeg results as positive so dont get discouraged its a matter if your having the seizure ac`
 
As Nakamova mentioned, you CAN have "normal" EEGs and still have epilepsy. Our Jonathan (age eight) has had tonic clonic seizures since his first birthday, and most of his EEGs are clear, or just show a bit of "slowing." The only time we've been able to get "abnormal" EEGs is when he was in ICU having 36 tonic clonic seizures in 2 days, and just recently he had a sleep EEG that showed abnormal spikes in his temporal lobes, but he'd been in a pattern of having 2 or 3 tonic seizures a day.

And also, as Nakamova mentioned, EEG results are based on who is interpreting them. Our neurologist in Bangkok, who's an ACE at reading EEGs -- he has specialized training in this, diagnosed temporal lobe epilepsy in 2006, based on very tiny variations in Jon's EEG, and it took the American doctors until 2011 to come up with the same diagnosis -- and that was when he was in ICU and they actually recorded several seizures.

And I also back Robin's suggestion about a nutritional approach 100%. This has given Jonathan seizure control when medicine failed, and failed, and failed, and failed (and caused horrible side effects in the meanwhile). We use the ketogenic diet, along with a vitamin/supplement product that helps prevent anti-oxidative stress, and have recently added in MCT oil, omega 3 fish oil, and magnesium -- with great results.
 
I've had so many tests done and been so frustrated, words can't explain. Well profanity could, but I want to keep my posts PG. Do not lose faith. Someone will find something and I really hope it is soon. I am in the same boat with you right now.
 
I understand where u r coming from Sophie. It does irritate 1. I was told by 1 Dr. that my left frontal lope was enlarged then was told by another Dr. from the same hospital that my right side of my brain is smaller than my left.I had 2 go up 2 tht other hos 2 get my images since thy don't like 2 send nothing out. I gave up on tht hospital and found me another 1. Thy had me on an eeg machine 4 a week 2 c wht was going on. Took me off my meds 4 24 hrs and found out tht my seizures were worse w/o my meds but I didn't feel a thng. Now I am being told tht I have 2 go back and have thm check other thngs out since I have been getting up walking around not remember nothing feeling real loopy i guess is wht i would call it. But I do understand wht ur going through. Its hard whn u don't get anywhere.
 
Sophie - making nutritional changes has helped with the hormonal fluctuations. Also consider supplementing vitamins and minerals . Catamenial Seizures can be controlled I believe.
 
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