New but not REALLY new

[Ghost Writer]

Hi everybody. First, I should probably mention that I do not have epilepsy, but I am a writer. I've referred to this forum many, many times in the past for first-hand incite and information regarding epilepsy, and you seem like terrific people. I have an immeasurable amount of respect and admiration for all of you. You are always very kind to one another and that's awesome and very comforting to see! I've been struggling with a fiction novel I've been writing for the past 3 years now, because if I'm going to attempt to paint a portrait of a person who lives with epilepsy I want it to be accurate one. I think people who don't have to deal with epilepsy should at least educate themselves with accurate knowledge vs. stigmas and stereotypes. I don't want to invade people's spaces but would I be able to get some specifics on different aspects of TLE? I've had my main character fleshed out for years now and I have a TON of questions - AEDS and the availability of specific ones in the early 90's, refractory seizures and long-term effects, auras, I keep reading about how sodium and magnesium levels have an effect on seizure control, age of onset, dietary advice, living alone, etc. Would this be something anyone could help me with? Thank you!!

 

[Bernard]

Hi Ghost Writer. I'd suggest asking questions as specifically as you can and you will likely get a slew of interesting replies. Many folks don't address questions that are too broad/vague.

 

[Duvexy]

Hi glad you are here. I have been in this community for many years, but I just do not write in here every day. I do have refractory seizures and long term effects, aura and I do find my self living alone now. I write a lot now, my I have cognitive problems from to understanding why I ended up getting this, and trying to figuring out how I can fix my self and maybe explain it to where another child can understand. As, when I was young nobody could explain to me why I had to get it. It is extremely complicated to understand the anatomy of the brain, and the pieces of the brains, and how they are to be measured, and distributed and, then when I think about it who try to ask about these transmitters go where and why? When I was I was younger I believed in a God, or Gods and I still study theology and theory, but today I currently am researching neurotheology. I am a patient/consumer not a doctor. I have not been really helped much except developed fatty liver with enlarged heart from taking synthetic/chemical pills which really are convient to others more then to me as I do not feel any pain until after the seizures. I get pain only after the seizures. Since my seizures are temperpol lobe seizures It is like I am already dead. Ii is peaceful, until I come out of my seizures. They are spiritual in nature anyway, and because I am getting older, of course they are getting worse and not better. I am more moved to use herbal remedies and I would rather be more healthy about the situation then, just to have drugs given to me, so that others are not scared to see me have seizures. I wish a cure could be finally found.
I am not quite sure exactly, which particular detail you are referring too on the sodium and the magnesium and how of an effect they may have, but they have because they have because they act as an energy.
I am a writer myself, but my spelling is still a little bad because of my seizures and the new medicines there are other new energies that I have fleshed out which are used in the brain which are potassium and sugar.
Sugar is necessary in the brain as well. The main two sources is sodium and potassium
and then mag and sugar and to me those are the main four that are needed for brain. When the mendrites start falling apart this affect the memory etc. I am not a scientist either. I am just suffering from epilepsy like I always have for last past 45 years, just not as bad as most. The problem with the sodium, though is that if you eat to much it will still cause edema, so like with most things there is a fine like where one has to use balance and moderation. A really good video I can share if you are interested, which is not mine, it just helps me to bounce off ideas off of to help me move concepts around.
https://www.youtube.com/watch?v=Y-aR1F5Fvy4

 

[Ghost Writer]

Thanks Duvexy. It wasn't sodium and magnesium, it was potassium and magnesium I wanted to say lol. I guess I wanted to know these things:
Besides head injury, what other types of factors could make someone predisposed to epilepsy? Are genetics really involved? Are there certain things or setups that make living alone safer? Are there seizure triggers that are more common in one type of epilepsy vs another type? (by that I mean TLE vs frontal lobe) How can auras (I know that auras themselves are seizures) affect you physically. Are there problems, talking, walking, holding things, etc while is this going on? How much of an effect does lack of sleep have on your seizure threshold? In what types of instances would surgery NOT be an option? Are there warning signs even before an aura? Like feeling crummy, headache or anything like that? And the thing I'm having the most trouble with is medications. The book I'm writing takes place in '93. I don't want to mention AEDS that weren't invented before that time. I've tried to research the year Felbatol was approved, Dilantin, Depakote, etc. No luck. I also don't want rattle off med regimens/combos that no decent doctor would prescribe. My character is a 24 year old male with refractory TLE. I feel INCREDIBLY silly for asking all these questions, but at this point I just want to get this book finished and most importantly - accurate.

 

[Nakamova]

You might want to get in touch with a epileptologist, just to make sure you've got the most accurate info.

Besides head injury, what other types of factors could make someone predisposed to epilepsy? Are genetics really involved?
These are the epilepsy syndromes that can have a genetic basis: Primary Generalized Epilepsies, Benign Rolandic Epilepsy, Nocturnal Frontal Lobe Epilepsy, Familial Temporal Lobe Epilepsy, Benign Familial Neonatal Seizures and Benign Familial Infantile Spasms. Of course, even in families where there's a genetic predisposition, not everyone develops epilepsy, and most cases of epilepsy are not inherited. Brain illnesses like meningitis or encephalitis can be a cause. Physical trauma is a known cause, though the seizures might not develop right away -- it could be months or years before onset. Emotional trauma can also play a role -- there appears to be a connection between DID and epilepsy. For many of us (including me), the initial cause remains obscure, though there may be secondary triggers such as fatigue or low blood sugar that play a role.

 

[Nakamova]

Are there certain things or setups that make living alone safer?

It depends on whether your seizures involve loss of awareness or consciousness. If you only have simple partial seizures (where you are conscious the whole time), your environment may be less of a worry. If you lose awareness or consciousness, then it depends on what happens when you are "out of it". With complex partials, people are conscious but not aware, a bit like sleepwalking. Behavior can be unpredictable. I think one CWE member hid the dogfood when she went to bed at night because after one seizure she "came to" and found that she'd eaten the Kibble... If you go on to lose full consciousness, as in a tonic-clonic (grand mal) seizure, then you might be worried about stairs and sharp surfaces. Ultimately, if you don't have any warning, then there's not a whole lot you can do, and the potential for injury exists in even the gentlest of environments. You might let your neighbors/friends/family know about your health issues, and provide them with extra house keys. You might get to know the local EMTs, so they know not to cart you off to the hospital every time you have a seizure.

If your seizures are fully-controlled, then you may not need to take any particular precautions.

 

[Nakamova]

Are there seizure triggers that are more common in one type of epilepsy vs another type? (by that I mean temporal lobe epilepsy vs frontal lobe)

There are some kinds of seizures that are tied to particular trigger -- for instance, absence seizures can be provoked by hyperventilation -- but for most kinds of seizures the triggers aren't syndrome-specific. The frontal, temporal, occipital, and parietal lobes are quite close, so seizure activity can spread rapidly from one area to another. In addition, just to make things complicated, many people have more than seizure "focus".

Up until about 30 years ago, the assumption was that most seizures originated in the temporal lobes. As the technology has improved, they can now make some distinctions based on the point of origin, but by symptom rather than by trigger.

I've cut and pasted some basic info from another thread about auras and associated brain regions:

1. Auras of all kinds are associated with temporal and parietal-occipital lobe epilepsy.

2. Somatosensory auras (tingling, numbness, electric sensations, etc) that occur on one side of the body tend to originate from the primary somatosensory area (located in the parietal lobe) in the opposite part of the brain. If they originate in the secondary sensory area (also in the parietal lobe but in a different part of it), these auras will show up on the same side of the body as the focus, or on both sides of the body. Somatosensory auras that evolve to include motor symptoms are associated with the perirolandic (mid-temporal) area of the brain. Somatosensory illusions (such as swelling, shrinking, and moving of body parts) tend to be associated with inferior parietal lobe on a person's non-dominant side.

3. Visual auras: Simple visual auras (flashing or moving lights, etc.) can arise from stimulation of the primary visual cortex. Complex visual auras (hallucinations/illusions) are associated with the junction between the temporal and occipital lobes, or the base of the temporal cortex. Blurry vision tends to be related to certain areas of the parietal lobe. One-sided visual auras tend to originate in the occipital lobe of the opposite side of the brain. Visual distortions like after-images, Alice-in-Wonderland syndrome, etc. can be connected to the pathway that connects the thalamus to the visual cortex.

4. Auditory auras: Simple ringing and buzzing = primary auditory cortex. Complex auditory hallucinations (voices, music) are produce by activation of auditory areas of the temporal-occipital cortex.

5. Vertigo/horizon shifts: Usually associated with visual and auditory areas of the temporal-parietal junction.

6. Olfactory auras: Associated with the amygdala, olfactory bulb, and the insular cortex (an area between the temporal and frontal lobes). Related taste auras can be connected to particular areas of the parietal and temporal lobes.

7. Autonomic auras (rapid heartbeat, shortness of breath, nausea and other stomach sensations, urinary urges, feelings of warmth or cold): Associated with regions connecting the frontal and temporal lobes, as well as the amygdala and the supplementary sensorimotor area of the brain. Abdominal auras are highly associated with temporal lobe epilepsy, especially when they evolve to include motor symptoms. When they occur with vomiting, they point to the non-dominant temporal lobe. Orgasmic auras are associated with the parasagittal region (near the center top of the brain).

8. Psychic auras (fear, anxiety, elation, sense of doom, deja and jamais vu, flashbacks): Associated with the temporal neocortex. Forced thoughts = frontal lobe. Fear = amygdala, hippocampus, middle frontal region, or temporal neocortex. Pleasant auras = middle lower temporal area. Out-of-body sensations arise from the temporo-parietal junction.

That's a start -- you get the idea. There are additional connections to be found between simple and complex motor seizures and particular regions of the brain. Certain kinds of speech and language disturbances that show up during complex seizures are linked to the non-dominant temporal lobe. Post-seizure aphasia is linked to the dominant temporal lobe. Most of these connections can be helpful when the neurologist is trying narrow down a focus during a pre-surgical evaluation -- for example distinguishing temporal lobe epilepsy (narrow focus) from temporal-plus epilepsies (broader focus).

Frontal lobe seizures are now considered to be relatively common, but they can be much more difficult to recognize than TLE. They can mimic psychiatric disorders, and they are difficult to register on an EEG. For this reason, TLE might be a better bet for your character.

 

[Ghost Writer]

Nakamova, thank you for taking the time to reply to some of these. You actually reminded me of another important question. This one I've been SCOURING the web about - if you already have epilepsy and you sustain a head injury (like, say a car accident or a fall), could that exasperate seizures and their frequency? Every time I try to look this up, I get references to head injuries AS a cause of epilepsy.

 

[Nakamova]

Medications that would have been available/typical in 1993:

Phenytoin (Dilantin)
Phenobarbitol
Primidone (Mysoline)
Carbamazepine (Tegretol)
Ethosuximide (Zarontin)
Clonazepam (Klonopin)
Diazepam (Valium)
Valproic Acid (Depakote)

The first four would have been prescribed for partial as well as generalized seizures.
Felbatol (Felbamate) was only just approved for treatment of partial seizures in the U.S. in August of 1993, so your character could have been prescribed it after that date. However, in August 1994 it was withdrawn when a number of people developed aplastic anemia as a side effect. It was re-introduced on a limited basis soon after that, but only in cases of severe epilepsy where the benefits might outweigh the risks.

Neurontin (gabapentin) wasn't approved until 1994, on an adjunct basis.
Lamictal (lamotrigine) wasn't introduced until 1994.
Keppra (levetiracetam) wasn't approved in the U.S. until 1999.

 

[Nakamova]

If you already have epilepsy and you sustain a head injury (like, say a car accident or a fall), could that exasperate seizures and their frequency?

Yes, additional trauma could exacerbate an existing seizure disorder.

 

[Ghost Writer]

This is so awesome. You're a book of knowledge! I appreciate this. Could've spared myself the headache of trying to find tidbits here and there on Google Books and just asked these questions 3 years ago. So felbatol's safe (this is October '93). It's not uncommon to be on 3 or 4 different AED's at a time, is it?

 

[Nakamova]

Felbatol's safe -- but only for the one year. After it was provisionally withdrawn, it would have been much less likely.

The ideal is monotherapy, but for refractory epilepsy it's not unusual to try a number of different meds and combinations.

You might find this to be a helpful reference: [ame="http://www.amazon.com/Seized-Eve-LaPlante/dp/0595094317"]Seized: Eve LaPlante: 9780595094318: Amazon.com: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41EBQGbL2-L.@@AMEPARAM@@41EBQGbL2-L[/ame]

 

[Duvexy]

http://www.rxlist.com/felbatol-drug.htm

 

[Duvexy]

https://www.youtube.com/watch?v=w8-jx1dtg0U

 

[Bernard]

GW - Looks like you are looking for some basic info. I'd suggest you have a look at the epilepsy 101 thread for a better understanding.

 

[PFunk]

Hi GR, I have TLE so for what it’s worth, here is a brief first hand account. In my case, my aura’s “intensity” varies in relation to my seizure control. Greater the control the briefer and “lighter” the aura. The aura type also varies with my control. My brain’s three go to auras are depersonalization, déjà vue and olfactory (usually the smell of smoke/camp fire). If I start to have uncontrolled recall of memories or auditory hallucinations (sounds being mistaken as onomatopoeia, words becoming other words, exploding, etc.) then I know trouble waters are ahead. On the rare case when one tries to generalize, I feel a darkness trying to envelope me as it pulls me back/down. If I’m conscious I can usually fight it off. If I’m asleep, then no such luck. My auras are usually not a burden to me. They are incredible distracting, but sometimes be a source of philosophical incite. It becomes disheartening when I start having a lot an might have to up my meds. Multiple auras during the day will sometimes leave me with a raging headache and lethargy. I’m not going to get into the long term effects but if you haven’t already you should look up geschwind syndrome. It could be the source of some interesting character foibles.

There is a wealth of info on CWE and a thread to pretty much every question but don’t let it deter you from asking them.

Keep us updated on your book, I would really like to read it.

 

[jyearta]

Hi GW,

This is something I don't if anybody besides those of us with E. realize, except for the caregivers.

It takes a person trying med. one after another. It's a trial and error thing, however this is scary and it can take a person taking MANY meds. until the right one is found. ---If in fact a meds. is found for that person.

The diff. Dr./Neur. have put me on about all the meds. with me having more seizures are the side effects being so horrible I would prefer to have a seizure.

 

[Ghost Writer]

Thank you Bernard, P-Funk and jyearta. You've all been incredibly helpful. I do mention the frustrations of med trial and error in the book. I will check out the 101 thread as well, though with this constant research over the years I think I have the basics down. The aura threads have been particularly helpful, because I don't think anyone could get a REAL feel or understanding of what that's like unless they've actually experienced it. De ja vu really does seem to be the most common thing people experience, that and bad smells. I could've sworn I read someone's post on this forum a couple years ago - he was riding passenger in a car and he saw himself sitting on the side of the road? It was like an outer-body experience? That has always stuck with me. But anyway, I really appreciate everybody's help. If I can get this thing off the ground, I will give CWE special thanks.

 

[Cint]

So felbatol's safe (this is October '93). It's not uncommon to be on 3 or 4 different AED's at a time, is it?

Hi Ghost Writer,

I've had epilepsy for over 30+ years. My seizures started when I was 22 years old. They started as SP and progressed to TC with no prior head injury or meningitis, encephalitis, etc. as I've often been asked by docs. I've been on 11 different meds, had a temporal lobectomy, to no avail, and now have the VNS. At one time I was taking 3 meds together at a high dose. It was after my lobectomy that the seizures (TC's) increased for me. When Felbatol came out back in 1993, my neuro started me on that drug because it was new and my seizures had started again. But it gave me terrific migraines so I called my dr. and told her I was taking myself off the drug. And then my pharmacist told me about the aplastic anemia and Felbatol. So we slowly did and replaced it with Neurontin, I think. Prior to surgery I tried Phenobarbitol, Dilantin, Tegretol. After surgery: Felbatol, Neurontin, Lamictal, Sabril as a trial basis, Trileptal, and now on Topomax + Keppra and starting a new one Potiga, but I'm very reluctant to increase the dosage on this drug. Plus I'm waiting to hear back from the neurosurgeon for a replacement of my VNS. So since I refractory E, this is as good as it will get for me, a seizure every now and then.

 

[PFunk]

I could've sworn I read someone's post on this forum a couple years ago - he was riding passenger in a car and he saw himself sitting on the side of the road?

That may have been me. I did post once that I was driving home from my friends (wife was driving). I had a strong depersonalization aura and felt like I was sitting outside the car riding along side myself. Then I felt the aura try to generalize and had to fight it back twice. I could feel my body contorting and pulling back. During that aura I knew my brain had misinterpreted my location in space, telling me I was located outside of the car, because the rest of my senses were saying, nope your definitely inside. It’s amazing how much information comes into our bodies and how unaware we are of it. Our brain assembles everything into a neat finished product for our conciseness to interpret.

Usually when I depersonalize I feel like I’m sitting way back in my body, a spectator to my actions and conversation. Looking in a mirror seems to exasperate it. I feel like I’m looking at a shell of myself. Strangely controlling my body, similar to being a puppeteer. My auras have made me cognizant of the distinction between what I sense and how my brain interprets it. With many seizures I can recognize their errors in the interpretation process. This is most prevalent in my auditory seizures. With other seizures it can be hard to tell, like with olfactory seizures. I end up asking my wife if she smells smoke a lot. I’ve learned to take multiple breaths and if the smell still persists, then that sh_t is real and I should probably see what’s burning.