I've been having what appear to be simple partial seizures and a few tonic colonic for about 3 month. At my last appointment my doctor said that i can't officially call them seizures until they have proof of one on an eeg. I had one about 1 month ago that came back clean but in the last 3 weeks I have been having them more often so now they want me to have an AEEG. I'm just wondering if anyone else had to have "proof" of a seizure before being able to call them that?
Proof of seizures?
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I know my wife witnessed my partials and my tonic clonic seizure and was able to tell the paramedics and doctors what she witnessed. Not to assume because you don't mention it but were these witnessed by anyone? If they were you could bring them to see your neurologist or have them available to confirm what they witnessed. I've never had an ambulatory EEG and I have never had anything picked up during normal or sleep deprived EEGs. All I have is my wife's witnessing the seizures, MRIs documenting lesions on temporal lobes. All the best with trying to give them the "proof" that they are seeking/need.
Gilles
Gilles
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Yes a positive EEG is the gold standard for diagnostics, but symptomatology is still an accepted form of diagnostics.
I was diagnosed with TLE, and started my medication journey, almost a year before any thing was seen on the EEG, based solely on my symptoms
I was diagnosed with TLE, and started my medication journey, almost a year before any thing was seen on the EEG, based solely on my symptoms
My mother has witnessed a few and has came to all the doctors appointments with me. She tells them what she sees which more often than not I don't notice half of what she says.
At my last appointment, when they ordered the AEEG, the doc seemed concerned at some points in my exam and like she had an idea but didn't say anything other than the testing she wanted done.
So that coupled with worsening seizures/spells and their increased frequency has me a little freaked out.
At my last appointment, when they ordered the AEEG, the doc seemed concerned at some points in my exam and like she had an idea but didn't say anything other than the testing she wanted done.
So that coupled with worsening seizures/spells and their increased frequency has me a little freaked out.
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Hi Casey,
An EEG is not a final proof of having epilepsy. You can have seizures yet have a normal EEG, or have an abnormal EEG and not have seizures. Even if the EEG indicates you have seizures, it doesn't mean you have or will be diagnosed with epilepsy. That's because people can have seizures and seizure type symptoms for many reasons. If they are not explored before making a definite diagnosis of epilepsy a person may get misdiagnosed and given a medication that is not right for her or his condition.
There are several common cardiac disorders that are often misdiagnosed as seizures. You will find a lot of information about this if you do a Google search on "Syncope Misdiagnosis Seizures" or a search of CWE forums on Syncope.
A person may also have seizures from gluten intolerance.
This link is to an article in a British Medical Journal. It is pretty in-depth and discusses quite a few disorders that can cause seizures but are not epilepsy.
Journal of Neurology, Neurosurgery, and Psychiatry
by PEM Smith - 2001 - Cited by 34 - Related articles
Syncope is the most common “non-epileptic” cause of altered consciousness. ... Some sudden unexplained epilepsy deaths are undoubtedly misdiagnosed ...
http://jnnp.bmj.com/content/70/suppl_2/ii9.full
Whether your EEG shows seizures or not, something's going on and I hope you find out what is causing your symptoms.
An EEG is not a final proof of having epilepsy. You can have seizures yet have a normal EEG, or have an abnormal EEG and not have seizures. Even if the EEG indicates you have seizures, it doesn't mean you have or will be diagnosed with epilepsy. That's because people can have seizures and seizure type symptoms for many reasons. If they are not explored before making a definite diagnosis of epilepsy a person may get misdiagnosed and given a medication that is not right for her or his condition.
There are several common cardiac disorders that are often misdiagnosed as seizures. You will find a lot of information about this if you do a Google search on "Syncope Misdiagnosis Seizures" or a search of CWE forums on Syncope.
A person may also have seizures from gluten intolerance.
This link is to an article in a British Medical Journal. It is pretty in-depth and discusses quite a few disorders that can cause seizures but are not epilepsy.
Journal of Neurology, Neurosurgery, and Psychiatry
by PEM Smith - 2001 - Cited by 34 - Related articles
Syncope is the most common “non-epileptic” cause of altered consciousness. ... Some sudden unexplained epilepsy deaths are undoubtedly misdiagnosed ...
http://jnnp.bmj.com/content/70/suppl_2/ii9.full
Whether your EEG shows seizures or not, something's going on and I hope you find out what is causing your symptoms.
An EEG does not always detect seizures, as some are too deep in the brain to be detectable by surface electrodes. Every neurologist should be aware of this, and if yours is not I would suggest asking for a referral to an epileptologist (a neurologist who specializes in epilepsy). Have you ever had someone witness your seizures, esp. the tonic clonic ones? This would help in the diagnosis.
A more recognized "gold standard" these days is a prolonged video EEG of at least 3 days (some can be longer depending on how often you have seizures) in which recordings of brain waves are made 24/7, and a video camera is recording you at all hours (except when you in the washroom!) The hope is that the camera will pick up a couple of seizures and record the EEG while the seizure is happening. Also, a video of the seizures themselves, even if the EEG is normal, can say if what happens are at least consistent with seizures. This was the case with me: normal EEG but video confirmed by 3 epileptologists said seizures.
A more recognized "gold standard" these days is a prolonged video EEG of at least 3 days (some can be longer depending on how often you have seizures) in which recordings of brain waves are made 24/7, and a video camera is recording you at all hours (except when you in the washroom!) The hope is that the camera will pick up a couple of seizures and record the EEG while the seizure is happening. Also, a video of the seizures themselves, even if the EEG is normal, can say if what happens are at least consistent with seizures. This was the case with me: normal EEG but video confirmed by 3 epileptologists said seizures.
Hi Casey,
I agree with masterjen the best thing to do is have a video e.e.g. Years ago I had surgery done to reduce my seizures and my Dr. did all the necessary testing that was needed to be done before my surgery and they said there was only scar tissue on the right temporal lobe but when the cut into me they found damage on the left side of my brain that not a single test showed because the damage was to deep in my brain for an e.e.g. SPECT, PET, CT scan or MRI to show. This was a surprise to me as well as the Drs.
Take note of when you have these seizures write down what time they happen along with the type of seizure it may be, by doing this your Dr. may see a pattern in the possible seizures as to what time of day/night they happen and what days of the month. I was told to do this by my Dr. and every month I have 1 week where I will have seizures for a day or two. I wish you the best of luck and May God Bless You!
Sue
I agree with masterjen the best thing to do is have a video e.e.g. Years ago I had surgery done to reduce my seizures and my Dr. did all the necessary testing that was needed to be done before my surgery and they said there was only scar tissue on the right temporal lobe but when the cut into me they found damage on the left side of my brain that not a single test showed because the damage was to deep in my brain for an e.e.g. SPECT, PET, CT scan or MRI to show. This was a surprise to me as well as the Drs.
Take note of when you have these seizures write down what time they happen along with the type of seizure it may be, by doing this your Dr. may see a pattern in the possible seizures as to what time of day/night they happen and what days of the month. I was told to do this by my Dr. and every month I have 1 week where I will have seizures for a day or two. I wish you the best of luck and May God Bless You!
Sue
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Hi, Howll: I suspect that is what Casey is referring to when he/she uses the word "proof"; ie. how is it definitively diagnosed. Your partner's recollection and abnormal EEG was your "proof", so to speak that you are having seizures.
It's a tough one, the only real person to witness my partial seizures was my wife, so I felt like I almost needed to prove I was having seizures to people. The only person to really understand when I was telling my symptoms to was my hospital consultant.
It was a real problem with my employees, especially with me having various scan (2 mri/eeg/sleep deprived eeg etc) all coming back inconclusive.
I finally had a video telemetry eeg scan, which meant I stayed in hospital for a full week being monitors when they finally captured 2 seizures. (1 partial, 1 complex).
As horrible as it was having them, it was also a relief my consultant was able to see them, as I could finally get a definitive answer whether or not I was a candidate for surgery, it it also put to bed any doubts my employers had.
It was a real problem with my employees, especially with me having various scan (2 mri/eeg/sleep deprived eeg etc) all coming back inconclusive.
I finally had a video telemetry eeg scan, which meant I stayed in hospital for a full week being monitors when they finally captured 2 seizures. (1 partial, 1 complex).
As horrible as it was having them, it was also a relief my consultant was able to see them, as I could finally get a definitive answer whether or not I was a candidate for surgery, it it also put to bed any doubts my employers had.
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All of my EEGs have been uneventful, so I don't have a diagnosis. I had a 30 minute one and when it came back clean, I got diagnosed with PNES. The rest were also clean and I didn't have any "events" so I'm still not officially diagnosed with anything. Every doctor is different and some will diagnose you without the EEG with history information and maybe a witness or home video and some look for a positive EEG during a seizure or without before diagnosing.
I know when my Simple Partials are occurring--I've had them since childhood. I get an odd feeling in my head, & it's been diagnosed as an SP by an EEG. The problem is my Complex Partials. Unless someone witnesses them or I do something to myself or my surroundings, I don't even know that one occurred.
I have to ask my son to make a video of me during my next CP for my neurologist. Many of them have become stronger.
I have to ask my son to make a video of me during my next CP for my neurologist. Many of them have become stronger.
Janus
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Hi. I had a complex PARTIAL WHILE having an eeg and they told me there is no seizure activity. The same with my MRI. I have these partials while testing and they don't see them. It was only the tonic clonic in public.
Just my two cents....
Just my two cents....
arnie
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You can certainly have epilepsy and have never had an abnormal EEG, although brain scans show some temporal lobe abnormalities. I had thousands of partial seizures (and a handful of tonic-clonics) over a thirty year period, and finally got control of the seizures just over 2 years ago by tweaking my med dosing schedule, but I still have E and always will.