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- Julie Dennison - Living with Epilepsy
- Sailing Through the Storms of Seizures
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Each in its own way directed our path to the big city on the other side of our state. A seven hour one-way trip, a year and a half ago, began the journey that is changing the jet stream of our son's future. The sun is peeking out from behind the cloud as we experience record-breaking seizure control through a study drug.
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And if that weren't enough, we have been blessed with the help and support of FACES and NYU Langone Medical Center, as if they were holding an umbrella over our heads to keep us dry until the storm passes. We enjoy our trek across scenic New York to see Dr. And, not to mention, there is less snow, warmer temperatures and more sun this far east! It's just not attainable to express our gratitude enough or repay those who have helped us along the way, so we pledge to continue in the fight for a cure, jump in and serve, give, pay it forward and "comfort others with the comfort we have received.
This was made possible by Team Impact, a not-for-profit organization that matches children facing a serious illness with a collegiate sports team. Members of the team have visited Sean, who suffers from epilepsy in the hospital and Sean has also attended practices and games when able.
Sean was quick to develop a great friendship with senior defenseman Eric Basmajian, who is a cancer survivor. With my colleagues on the seizure classification task force in London-Celebrating completion of a new classification scheme that will hopefully advance the field. With collaborators in Australia, hopefully advancing epilepsy devices. The hippocampus gets its name because of its resemblance to a seahorse in Greek, hippos for horse; kampos for sea monster.
The hippocampus is located in the temporal lobe. We have two hippocampi — one on each side of the brain. The hippocampus is critical for learning and memory. These neurons become active when the rodent passes through a certain part of the environment. Hippocampus blue located in the temporal lobe of the brain image credit — Wikipedia. The hippocampus is implicated in a certain kind of epilepsy, called mesial temporal lobe epilepsy mTLE.
This is because in TLE, seizures originate or involve the hippocampus. This is in contrast to genetic epilepsies, where the individual is born with defects that cause epilepsy. Resemblance of the hippocampus with a seahorse image credit — Wikipedia. Since the hippocampus is evolutionarily conserved in rodents, scientists can figure out what goes wrong in the hippocampus in epilepsy by performing experiments in rats or mice. In this way, we have found that there is a loss of neurons in TLE.
These alterations are quite specific, as there is preferential loss of cells that inhibit, or dampen down activity. In the absence of these inhibitory cells called interneurons , excitability goes haywire causing more seizures. Given that the hippocampus is important for learning and memory, it is not surprising that in some individuals with TLE, difficulties in learning and memory may be noticed. The first line of treatment for TLE is anti-seizure medication. These drugs are useful but are associated with a few problems: They do not provide relief from seizures in everyone with TLE.
One-third of the patient population has refractory epilepsy i. These drugs have side-effects and 3. They stop seizures without correcting the underlying problem that causes seizures in the first place. Alternative options for TLE are surgery and dietary methods such as the ketogenic diet.
In summary, although we know quite a bit about the hippocampus, scientists are working hard to comprehend the role of the hippocampus in TLE better. For example, understanding exactly how the hippocampus becomes prone to seizures will give us new avenues of curbing seizures and epilepsy.
Iyengar, PhD is an epilepsy researcher and has been investigating mechanisms that can cause groups of neurons to generate and sustain spontaneous seizures. For her graduate work, Sloka worked with Dr. David Mott where she used electrophysiology to study epileptic circuits. In New York, Sloka conducted her postdoctoral research at the Nathan Kline Institute where she examined the role of a part of the brain called the hippocampus in seizures.
Presently, she has switched focus from basic epilepsy research to clinical research with Dr. In addition to research, Sloka also has a strong interest in epilepsy advocacy and education. A diagnosis of epilepsy and a learning disability can be very emotional for any parent, myself included. In addition, many students with epilepsy need school accommodations. Lack of proper accommodations can make life very difficult for students living with epilepsy and their parents.
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According to the National Institute of Neurological Disorders and Stroke, 20 percent of epilepsy patients have intractable seizures — seizures that do not respond to treatment. Frequent absences and missed classes due to hospitalizations, medical appointments, seizures and exhaustion are a major problem for many students with epilepsy. Ryan would have to be picked up two to three days a week due to a seizure or exhaustion. Some teachers were fantastic and accommodated his frequent absences by modifying tests, class notes, assignments and giving Ryan extra help.
Unfortunately, not everyone is as understanding. Lack of epilepsy awareness and how it affects learning is often a major obstacle. I found the following accommodations and modifications helpful:.
Julie Dennison - Living with Epilepsy
The first step in coming up with an educational plan for your child usually starts with an evaluation. An evaluation may uncover a learning disability s that may entitle your child to special education services, accommodations and modifications. An IEP and Section are not the same thing. Turn off email alerts. Skip to main content. Refine your search for weathering. Refine more Format Format. Items in search results. Magazine Back Issues Format see all Format.
Sailing Through the Storms of Seizures
It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures. Does she experience symptoms of aura — and if so, does she experience black outs or loss of vision? What about fortification spectra? Does she display an aversion to light and noise? In particular, is she dealing with something quick, sudden and fleeting, that comes as a shock and departs just as suddenly leaving mental fog? Or is it something that grows slowly, builds, lasts a long time, and finally fades away — leaving her weak, confused, but also with a sense of euphoria or malaise?
And most importantly, does she describe twitching, thrashing and falling; or intense, throbbing headache? With these questions in mind, we are in a better position to re-examine her poetry. Before we begin, however, it will be useful to familiarize ourselves with a few testimonials from modern migraine sufferers. It is difficult to comprehend, for those without the symptoms, how jarring and disturbing migraine symptoms can be collectively — especially when they manifest for the first time.
Sufferers often think they are losing their mind or having a spiritual or demonic encounter. Obviously Dickinson would not have used medical terms to describe her experiences — she would have done the best she could with the language at hand. Hence it will be worthwhile to examine the accounts of contemporary migraine sufferers, to witness the kind of language they use.
This has only happened to me very rarely, thankfully!
My sense of smell and hearing are heightened. I also have audial hallucinations. I hear humming or ringing noises or sometimes a high-pitched tone. Noises sound louder, and light seems brighter. I can also feel the headache in the background. They always came when I was alone and they seemed to want to impose their will on me, to press my body into their marching orders. These symptoms last from about 5 minutes to a max of about 20 minutes and I need to sleep in a quiet room while they are happening. I can tell you they are most scary to go through because they make you paranoid and so powerless to do anything — you just have to ride out the storm and then there are 2 — 5 hours of severe head pain afterwards.
But then sometimes closing my eyes does make me feel normal again, especially when it seems like my feet are on the other side of the room. It sounded like somebody I knew, but I could never figure out who. Usually it was a pretty short sensation, just a few seconds. Strange white noise [i.
It drives me crazy looking for the source and then I realize it is quite literally all in my head. More often, I have olfactory hallucinations where I smell chocolate, bacon, maple syrup, etc. My husband never smells these things when I do, so I can only assume they are not really there.
If some of the poems defy such classification, it is usually because they are about the entire migraine event, rather than simply partial symptoms. Let me point out again that, although I believe Emily to have suffered from some migraine episodes and recorded her experiences, I will not claim that Emily only suffered from migraines; a few of her poems do seem to describe something like epilepsy — others seem to point to night tremors or sleep paralysis. The inevitable- While I was fearing it, it came, But came with less of fear, Because that fearing it so long Had almost made it dear.
There is a fitting a dismay, A fitting a despair. The trying on the utmost, The morning it is new, Is terribler than wearing it A whole existence through. It was not death, for I stood up, And all the dead lie down; It was not night, for all the bells Put out their tongues, for noon. It was not frost, for on my flesh I felt siroccos crawl, Nor fire, for just my marble feet Could keep a chancel cool. And yet it tasted like them all; The figures I have seen Set orderly, for burial, Reminded me of mine, As if my life were shaven And fitted to a frame, And could not breathe without a key; And I was like midnight, some, When everything that ticked has stopped, And space stares, all around, Or grisly frosts, first autumn morns, Repeal the beating ground.
But most like chaos,—stopless, cool, Without a chance or spar,— Or even a report of land To justify despair. Rather than the language we would except of an epileptic thrashing about or moving uncontrollably, she describes herself as frozen, like a corpse, locked up and immobile. The poet notices the sounds of bells ringing, her cold feet, and crawling skin.
I do know that a lot of time when I get these feeling I end up with a migraine at least within the next few days. Do your fingers or toes turn blue, red, or pale after you drink a cold drink? The tendency toward cold hands is often a symptom of migraine. She again repeats the storm imagery:. I heard a fly buzz when I died; The stillness round my form Was like the stillness in the air Between the heaves of storm.
The eyes beside had wrung them dry, And breaths were gathering sure For that last onset, when the king Be witnessed in his power. I willed my keepsakes, signed away What portion of me I Could make assignable,-and then There interposed a fly, With blue, uncertain, stumbling buzz, Between the light and me; And then the windows failed, and then I could not see to see. Some say it is the spheres at play! Some say that bright majority Of vanished dames and men! Some think it service in the place Where we, with late, celestial face, Please God, shall ascertain!
She also hears whistling, or a bugle: Heart, not so heavy as mine Wending late home — As it passed my window Whistled itself a tune — A careless snatch — a ballad — A ditty of the street — Yet to my irritated Ear An Anodyne so sweet — It was as if a Bobolink Sauntering this way Carolled, and paused, and carolled — Then bubbled slow away!
It was as if a chirping brook Upon a dusty way — Set bleeding feet to minuets Without the knowing why! Tomorrow, night will come again — Perhaps, weary and sore —Ah Bugle! By my window I pray you pass once more. The last line — mixing fresher air — may be the dancing or moving appearance of the scotoma:. It sounded as if the streets were running, And then the streets stood still.
Eclipse was all we could see at the window, And awe was all we could feel. By and by the boldest stole out of his covert, To see if time was there. Nature was in her beryl apron, Mixing fresher air. The lightning that preceded it Struck no one but myself, But I would not exchange the bolt For all the rest of life.
Indebtedness to oxygen The chemist may repay, But not the obligation To electricity. It founds the homes and decks the days, And every clamor bright Is but the gleam concomitant Of that waylaying light.
Sensitivity to light, blindness, visual effects. Whether migraine or epilepsy, we know that Dickinson was sensitive to light — in Dickinson spent over half the year in Boston for a medical problem thought to have been an eye disorder. Heavenly hurt it gives us; We can find no scar, But internal difference Where the meanings are. It is no wonder that her comments on God paint him as a cold and distant tyrant, when she needs to suffer this inexplicable pain.
She describes silence and shadow — not the wild frenzy of epilepsy, but the calm horror of migraine.