Husband's 72-hr EEG results normal but he was having seizures

Posted by meliaj @meliaj, Apr 7 4:16pm

My husband just had a 72-hour EEG, included video monitoring. He has several small and a couple larger seizures during that time, some on camera and some off. We pushed the button during the seizures, as instructed. He has been having seizures for about a decade, several times a day, usually brought on by light or by movement in his peripheral vision. When he met with the neurologist afterwards, he was told that the results were normal and he was asked whether he had pressed the button at all (?!). The neurologist told my husband he was "not impressed" by anything he saw on the video (stiffening, grunting, head bobbing, foot curling...), and he implied that my husband's problem is stress. My husband is very sensitive to medications and has had side effects to every epilepsy medication he has tried. He had symptoms occasionally as a child (mostly arms going back and hands stiffening), but his symptoms were made much worse after he tried an SSRI a decade ago. He has a tumor on his brain, which is shrinking with medication, and he has been told that the tumor is not related to the seizures. How is it possible that the EEG is normal? Even I could see the spikes on it when he was having seizures, and it's clear in the video that his movements are not voluntary.

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kb2014 | @kb2014 | Apr 7 10:09pm

I had a craniotomy in May 2014 due to access left temporal lobe from bacterial meningitis of my brain. My eeg result is a breach rhythm caused by the skull defect. I have mini plates and screws to replace the bone that was removed. A breach rhythm is not normal but is non epileptic..I hate to suggest this but this may be a case of medical gaslighting
Find another neuroligist. Check this doctors education history check if the doctor wrote resesrch papers check for any disciplinary issues check patient reviews. To the best of my knowledge I havd been seizure free almost eleven years. No patient should be dismissed like this. I am heartbroken that our current societal issues have reached this point. I would suggest as well this physician may be burned out overwhelmed etc. Is there a social worker you could discuss your husbands treatment with? In the hospital where the eeg was done? Could you contact regulatory agencies in your state aka attorney General etc. Can you contact your insurance company and or medicare? Possibly the adult abuse line?

Leonard | @jakedduck1 | Apr 7 11:00pm

@meliaj
Approximately 5O% of EEG’s in people know to have epilepsy are normal.
I wonder if the brain tumor is causing the spikes.
Here is some EEG info from the epilepsy foundation,
https://www.epilepsy.com/stories/making-sense-out-eeg
Have you had other opinions?
Seeing an epileptologist might be your best choice. They are the most highly trained in epilepsy.
Take care,
Jake

Chris Gautier OR Santosha | @santosha | Apr 8 7:45am

Hi @meliaj
I agree with @kb2014 and @jakedduck1 .
Do check for a second opinion and preferably with an epileptologist instead of a neurologist.
In 2018 I did an EEG and the report said all was normal again. The neurologist recommended I see a psychiatrist. It was the psychiatrist who discovered the mistake in the report. The epileptiform waves were present in this EEG as shown by the images, which the neurologist has disregarded.
As Jake has well pointed out, many people with epilepsy have normal EEG. I have had epilepsy since my teenage years (I am 54 today and got the epilepsy diagnosis at the age of 48 years) and lived decades without a diagnosis, though many EEGs that I did came out normal. But with the evolution of my epilepsy, this has changed, EEGs started to show my epileptiform waves. The best diagnosis of epilepsy is done through observation and analysis by a specialist. An epileptologist has diagnosed my temporal lobe epilepsy without seeing my exams, just by asking questions and evaluating my answers, as well as the answers of my husband.
I share here an interview with a doctor who has epilepsy and lived a decade with undiagnosed epilepsy. Very interesting!
Despite Medical Training, A Young Doctor’s Epilepsy Goes Undiagnosed for a Decade

Wishing you and your husband all the best!
Chris (Santosha)

NJ Ed | @njed | 6 days ago

@meliaj Jake (@jakedduck1) is 100% correct about normal EEG. I came down with epilepsy in 1972 and had many EEG's done, all normal. I've been on Dilantin 600 mg. daily and has worked for me. However, it took some doing before I went to a teaching hospital and a neurologist got to the bottom of the problem.

tonyde | @tonyde | 5 days ago

Definitely see an epileptologist. A neurologist is good sometimes and not so good others, I saw 5 neurologists when I first started having seizures 25 years ago, 4 told me they couldn't help me, the fifth told me I wasn't having seizures because "I didn't flop around like a fish".

I had one in a hospital, the nurse told the resident neurologist she "heard me all the way down to the nurse's station", he replied "I thought he was faking until I saw that" and she told him they called in the strock team. Apparently, my blood pressure skyrocketed. I quoted the May Clinic to another and she said "who's the neurologist" as if she knew more than the Mayo Clinic.

Neurologist number 6 worked with me until we found the right mix of medication, it took 5 years to discover a combination of Lamictal and Trileptal to get me under control.

My seizures started again after a bad fall a year and half ago. My neurologist worked with me, this time he couldn't get me under control and referred me to USF for brain mapping.
.
My point is you need to second, third and fourth opinions under you find the right doctor. That's one who has the ability to help you themselves or the one who is willing to put their ego away and refer you to someone who can.

I wish the best for you, it's a journey, stay positive and you will get there.

boomarang | @boomarang | 4 days ago

meliaj, My EEG were normal also. Cannot figure it out either. Spent several days in hospital many tests. Wires stuck to my scalp. showed nothing. Pushed the button. Doctors Specialists could not see anything. You are not alone. I have had my seizures for 20 years. Frontal Lobe Encephalitis cause me to stare like in a trance & left hand will wave. Seizure lasts a few seconds then I fall asleep. I read that is healing time for the brain. I awaken & I am fine again. Will be 95 in June. Fortunately I am blessed with a good brain. Not to active physically. I am slowing down a bit now. My seizures are part of my life I have accepted because I cannot change it. My medication really helps ZONISAMIDE 3OO MG AT BEDTIME. GENERIC FOR ZONEGRAN. NO side affects that I am aware of. It took my Neurologist many medications before he got the right one for me. KEPPRA was extremely bad for me. I venture to say I have approximately 4 to 6 seizures a month. I also have a Pacemaker & take Coumadin blood thinner. Best of luck, Boomarang12 PS I think I posted this comment in the wrong place I hope you find it. Maybe someone will be kind enough to tell you.