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coachwilly1

is this a seizure?

I need your input and/or suggestions.  I've been experiencing these episodes for about 3.5 years now.  I am ussually alone (as I am single w/o kids) when I experience these episodes.  I do, however, have a history of a severe closed head injury 20 years ago, which required 3 months of hospitalization.  These episodes occur randomly but kind of regularly - sometimes more than 1 in a day but never days in a row more like intermittent periods of 3-5weeks.

In one of these episodes (big ones) , I feel very dizzy (like the room is spinning out of control) - I sometimes hear loud noises (like a freight train) - I am pretty tired after these occur.  They've happened in my sleep, in the shower, at the gym on the cardio machines, while teaching class, while driving down the road, sitting in front of the computer, etc... they happen at all times of day doing different various activities.

When one of these episodes occur, sometimes another one or two will follow shortly thereafter.  I just hold on to something and try to keep from falling.  I don't usually remember much - other than the dizziness and nausea - that accompany the spinning.  Doctors have said that these are panic attacks and written it off.  I was with some other teachers in January and they observed one of these "episodes" - they said I stiffened up and my lips quivered - I remember them calling my name and patting my back but could not respond.  After it was all over, I was very confused about what was going on , but I explained to them that this was a panic attack and I have them regularly .  They said no.

The doctors then diagnosed me with epilepsy - MRI completely normal - the neurologist said she had to study the EEG 3x before noticing some small spikes in the temporal lobe.  The neurologist had already told me she thought that I was having seizures and the EEG might not show abnormal activity unless I was actually having a seizure.  When she was interpreting the reading, was she wanting to confirm her thoughts or was there abnormalities (study 3x before finding spikes???).

Been on Lamictal since - still have these episodes about as often as before - they might not be quite as intense - do these sound like seizures to you?  

 Please give me some insight - I'm frustrated - if they were seizures, wouldn't the meds be helping?  I don't like the meds - Lamictal has a negative effect on my memory and mood swings.  I am fine if they are seizures, I just need the diagnosis - it's hard to explain to someone who has never experienced what I am describing and it is hard for me to understand your seizures, if they are different from my experiences - doctors don't know - they haven't experienced one first hand.

 

Leslie

Comments

Re: is this a seizure?

This comes from brain injury.com:

"Unfortunately, seizures may develop immediately after an injury to the brain or may develop in delayed fashion, showing up months or years after the initial trauma. Generally speaking, the risk of post traumatic seizures is related to the severity of the injury- the greater the injury, the higher the risk of developing seizures. Even mild to moderate injuries can result in seizures.

There are many kinds of seizures and seizures are not an uncommon condition among persons without head injuries. It is thought that a head injury disrupts the pathways of the brain and that an epileptic seizure can be viewed as a sort of short circuit of the brain's electrical functioning. During the seizure the electrical fields in the brain are overloaded, resulting in seizures.

The most commonly seen seizures related to traumatic brain injury are "generalized" seizures, which are also called "Tonic-Clonic" or "Grand Mal" seizures. The classification of different types of seizures is beyond the scope of this website.

Persons who have had head trauma are twelve times as likely as the general population to suffer seizures (Willmore, 1992). Patients with acute intra cranial hematomas also have a high rate of epilepsy. While there are contradictory studies, the more recent study (Lee, 1992) showed that of 4,232 persons suffering mild closed head injury, 53% had early post-traumatic epilepsy. Approximately 57% of head injured individuals developed epilepsy within one-year of injury. Longer onset epilepsy beginning more than four years after the trauma occurs in 20% of patients who developed epilepsy. It is estimated that 30% of all individuals suffering head trauma developed post-traumatic seizures and 80% of the time they occur within the first 24-months (Bakay, 1980).

The primary tool used to diagnose epilepsy is the Electroencephalograph (EEG), which is a device that captures and plots the electrical activity of the brain. EEGs show abnormality in over 80% of epileptic patients.

If someone has a traumatic brain injury or is even suspected of having same, most prudent physicians will prescribe a preventive course of medication. Fortunately, the current anti-seizure medications on the market are very effective and in a vast majority of cases will largely or completely control the epileptic seizures (examples include Phenytoin, Valproate, Phenobarbital, Dilantin, Felmabate and others).

Unfortunately, recent studies have show that suffering seizures, in and of itself, can shorten one's life and can contribute to brain damage. There are, of course, other dangers such as falling injuries, problems driving and the risk of choking.

There is another, more controversial, type of seizure know as "Complex Partial-Seizure Disorder." A majority of the persons suffering these more subtle types of seizure (in which one's perception is changed, sensors are altered, blanking out occurs and other more subtle things occur) would have normal findings on the EEG. However, all of the patients in the studies confirming this disorder had evidence of cerebral dysfunction on neuropsychological testing." 

As for the EEG, it only really measures the surface of the brain and they're extremely hard to confirm. Probably the reason your doc was reading it so thoroughly was because of that reason.

Concerning the Lamictal, there's no such thing in epilepsy as a "one size fits all" med.  Try to keep a daily epilepsy diary of your sleep patterns, what you eat, activities, how you feel before, during and after a seizure.  That may help you to identify your triggers.  And it may help your doc figure out what's going on with you.

Then take the diary to the doctor, explaining your reactions (or lack of reactions) to the Lamictal and ask if another drug would be more appropriate.  Ask about the upside of the drug and the downside...the dosage...whether name-brand or generic would make any difference in your situation...next steps to take...and get a contact number in case you have questions or problems later.  Also, don't forget to take notes, so you can refer back to them.  And feel free to ask as many questions as you want. (In fact, it would be a good idea to write down your questions before the visit.)   That's what the doc is there for.

Good luck!   Phylis Feiner Johnson   www.epilepsytalk.com

 

Re: is this a seizure?

Hi Leslie,

I have a little experience with Lamictal and also with weird seizures, but my epilepsy is known as idiopathic (no known origin). I also have experience with what are called "classic migraines". Classic migraines normally come with what is termed as an aura (blurred vision, messed up speech due to numbness or tingling in tongue, face etc and weird lights or spots in front of one or both eyes - the auras can be different for each person). Now, with seizures, some people also get auras. Some argue that auras ARE the seizure, but for me, they've always been the warning to stop what I'm doing and go find a safe space to settle down and get ready. My seizure auras are a feeling of disconnectedness. Disorientation and the sudden feeling of jamais vu (the opposite of deja vu) - not being familiar with familiar surroundings and simple things like not knowing where the exit is wherever I am.

The reason I bring the aura aspect up and the change in sensory perception is you mention you have these episodes where you hear something like a freight train. So you have an audible aura (whether it's happening AT the time of the episode or just before it - let's call it aura for sake of argument). It is linked with your inability to respond and your lip observed quivering. You also mention the extreme feeling of dizziness. 

A friend who had migraines used to smell cooking bacon just before her migraine started. (Just an example of how weird the brain can be.) 

As was previously mentioned, your history of head trauma is a reasonable cause for seizures. But any serious trauma could also cause PTSD. And it doesn't have to happen straight away. When you first mentioned the loud noises, I wondered if that was the last thing you heard before you had your injury - feel free not to comment on that. It's mere supposition. But whatever it is, I do think the doctors may be right. It sounds like (even though this is not a diagnosis - I am not a neurologist) a type of mild seizure. Many refer to these seizures as petit mal seizures (depending on who determines the definition) and some call them absence seizures - but it appears to me you are not absent. You are there, you just feel overwhelmed and cannot communicate normally. 

I understand your frustration at the medication not working. Some medications don't work and some do, but only part of the time and when the episodes occur, you don't know if they are working, but then you can always wonder "how many of these would I have had if I had not been taking these meds". I've tried Lamictal and to be honest, I didn't notice any difference. I was using it as a support measure while coming off Clonazepam as I had been seizure-free for over a decade. I am pretty positive had I decided to go back on Lamictal, it would not have stopped my seizures. 

Some medications work better in conjunction with other medications. If you've been taking Lamictal for almost as long as the episodes have been occurring with little to no change, I would recommend a follow-up with your neurologist and looking at trying something different. Some medications will make you very drowsy at first - all the medications I have tried do that. Two meds I had no major issue with. Some will make you sleepy and it will seem as though that drowsiness never goes away, so the trick is to try and be patient and try something different. Ask your neurologist how long is a reasonable amount of time to wait to see positive change and when you should try something else if this one does not work. Everyone responds to epilepsy medication differently, so just because mine works a miracle for me (it really does), it may not work for someone else.

Also, keeping a diary handy to account for dates and estimated times these episodes occur may help the neurologist determine what might be a good type of medication to try next. Also, try and recall what you experience during those times.

I'm sorry you are so frustrated. I was experiencing weird episodes for almost 2 years before my tonic clonic seizure gave me a nasty hello and that was how I found out my brain still has a mind of its own (excuse the pun).I'm not versed in temporal lobe epilepsy (I don't even know what mine is - I think they call it generalized), but I am sure there is information on this website that will help explain what it is and what some of the possible symptoms to temporal lobe seizures are (seizures come in all shapes and sizes).

Also, make sure you get plenty of sleep each night - lack of sleep, if you are having seizures - WILL lower your seizure threshold. 

Re: is this a seizure?

Hi Leslie,

I started out having about monthly clusters of simple partial seizures in early childhood, and the clusters began to include more instances of complex partial seizures in my mid-teenage years. Isolated simple partials mainly messed up my speech, as if I had speech impediments with short instances of "speaking in tongues."

In University, my classmates thought one of my complex partial seizures in a cluster was a heart attack, but my Social Psychology Professor told me that I probably had Temporal Lobe Epilepsy (TLE). TLE convinced me to be much more skeptical with the MMPI and other Psychological Tests, along with the vague Psychiatric Bible, the DSM.

Official use of the DSM has all kinds of safe guards built in, they're just hardly ever carefully followed in practice. Before what at first sounds like a "Panic Attack" is labeled as a "Panic Disorder" (such as 300.01, 300.21), things like epilepsy are to be considered firstly, but such care in application is unusual. A practitioner would have to take the time and care to get to page 3, second column, 3rd paragraph for the differential of epilepsy (instead of the sticky "Panic Disorder"), in a set of guidelines such as: http://www.brown.edu/Courses/BI_278/Other/Clerkship/Didactics/Readings/p...

A few Anti-Epileptic Drugs (AEDs) were tried when I started biting my tongue during my clusters, but they didn't help, and the side-effects were bad. Since the AEDs were worse than the seizures, the difficulties with Medicaid providing anything medical allowed me to just tolerate the seizures, until secondary tonic-clonics (TCs) with the clusters became life threatening almost two decades later. Minimal Keppra has been preventing my TCs now, but the partial seizures have never been helped by any AED or anything else.

Most of my simple partials result in visceral sensations (good, bad, and indifferent) and disrupt my speech, while complex partials also interfere with "consciousness" (consciousness doesn't have a valid and objective definition).

Tadzio