Hi guys! It’s a little late, but — November is National Epilepsy Awareness Month! This is a good a time as any to get educated about this very dangerous and extremely misunderstood/underestimated condition. Here are few facts about epilepsy: (courtesy of epilepsy.com)

  • Epilepsy affects over 3 million Americans of all ages.
  • Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
  • In over 30% of patients, seizures cannot be controlled with treatment.
  • Risk of sudden death among those with Epilepsy is twenty-four times greater [than the general population].
  • Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.

Epilepsy is incredibly underdiagnosed, and doctors have admitted that they know next to nothing about it. Most people associate seizures with thrashing and tongue-biting, but there are dozens of kind of epilepsy, and many of them don’t involve convulsions. (Many involve altered mental states and physical tics.) Along with seizures, epileptics experience varying degrees of anxiety, depression, suicidal tendency, medication side-effects, and more. As an epileptic myself, I can testify to just how much of a struggle it is to live with this condition, and how frustrating it can be to see the lack of awareness.

Here are some (very easy!) things to learn and stay informed — especially if you know someone with epilepsy:

  • Know what to do when someone is having a seizure.
  • Read up! Follow epileptics and epilepsy awareness advocates, who can provide you with informative posts. (More Than A DiagnosisEpilepsy AwarenessEpilepsy Awareness Squad, and my fellow epilepsy warrior, Sam Humphries)
  • Be considerate/don’t perpetuate the stigma. Making jokes about seizures, calling epileptics “spazzes,” making fun of side effects of medication (which often include memory problems, drowsiness, or a general altered mental state), or just dismissing epilepsy in general is very, very harmful. Having epilepsy is, again, a true struggle, and acting like that doesn’t just hurt someone’s feelings; it also perpetuates toxic stigmas that have followed epileptics for decades and feeds into the layers of depression+anxiety. Don’t be a part of the problem.
  • Most importantly — ASK, and LISTEN. Epilepsy is extremely misunderstood and often dismissed, so it’s difficult to talk about. Many epileptics (including myself!) more than anything just want people to listen and understand what we’re going through. If you know someone with epilepsy and they feel comfortable discussing it with you, ask questions about their condition and their feelings, and then listen to what they have to say. This will help more than you know.

Finally, I currently run a comic called mis(h)adra about living as an epileptic. It is based 99.9% on my personal experiences with epilepsy, and I aim for it to be both a connection to fellow epileptics and a platform for awareness and education to everyone else. Please feel free to give it a read, and if you have any questions or comments, message me, tweet at me (@DELTAHEAD_), or email me at iasminomarata@gmail.com. I am more than happy to discuss or answer questions about epilepsy at any time.

Stay safe, everyone! ☆


MRI-Guided Laser Procedure Provides Alternative to Epilepsy Surgery

For patients with mesial temporal lobe epilepsy (MTLE) that can’t be controlled by medications, a minimally invasive laser procedure performed under MRI guidance provides a safe and effective alternative to surgery, suggests a study in the June issue of Neurosurgery, official journal of the Congress of Neurological Surgeons. The journal is published by Lippincott Williams & Wilkins, a part of Wolters Kluwer Health.
"Real-time magnetic resonance-guided stereotactic laser amygdalohippocampotomy (SLAH) is a technically novel, safe and effective alternative to open surgery," according to the new research by Dr. Robert E. Gross of Emory University School of Medicine, Atlanta, and colleagues.

MRI Guides Precise Laser Destruction of Area Causing Epilepsy…
The researchers report their experience with MRI-guided SLAH in 13 adult patients with epilepsy mapped to a part of the brain called the mesial temporal lobe. The patients, median age 24 years, had “intractable” seizures despite treatment with antiepileptic drugs.

In the SLAH procedure, a saline-cooled fiberoptic laser probe was precisely targeted to the area of the brain—the “amygdalohippocampal complex”—responsible for the procedures. Using real-time MRI guidance, the neurosurgeon was able to pinpoint the area of the brain responsible for seizure activity and destroy (ablate) by computer-controlled laser energy, without harming neighboring brain tissue.

The technical aspects of the procedure were successfully carried out in all patients. Using thermal imaging and MRI guidance, the surgeons were able to see the area of laser ablation as treatment proceeded. The average laser exposure time was just under ten minutes.

On average, 60 percent of the amygdalohippocampal complex was destroyed in the SLAH procedure; the average length of the ablated area was 2.5 centimeters. Median time spent in the hospital was just one day—compared to a typical two to five-day stay after conventional temporal lobe surgery, and SLAH patients did not have to be admitted to the intensive care unit.

…With Good Control of Seizures at Follow-Up
Most important, the procedure was effective in reducing or eliminating seizures in patients with MTLE. At a median of 14 months after SLAH, ten out of thirteen patients achieved meaningful seizure reductions, while seven were free of “disabling seizures.” This included six out of nine patients whose epilepsy was caused by an abnormality called mesial temporal sclerosis.

Although some complications occurred, none were directly caused by laser application. Two patients had an additional SLAH procedure to control seizures, and another patient underwent standard open surgery.

Open brain surgery is the standard treatment for patients with intractable MTLE. Surgery has a high success rate, but carries a significant risk of neurological and cognitive (intellectual) impairment. Minimally invasive approaches like the new MRI-guided laser ablation technique might produce similar seizure control with lower risks than surgery.

The new study shows “technical feasibility and encouraging results” with the minimally invasive MRI-guided SLAH technique for patients with MTLE. Effectiveness in relieving or eliminating seizures approaches that of surgery—perhaps especially among patients whose seizures are caused by mesial temporal sclerosis. “These are promising results considering that this reflects our initial experience, and results may improve with greater experience with this novel technique,” notes Dr. Gross.

"Such minimally invasive techniques may be more desirable to patients and result in increased use of epilepsy surgery among the large number of medically intractable epilepsy patients," Dr. Gross and colleagues conclude. They note that a larger, longer-term study of SLAH is underway, including assessment of the effects on cognitive function as well as seizures.

📢 ARE YOU AWARE OF WHAT TO DO IF SOMEONE HAS A SEIZURE?! Here are a few helpful tips to aid you in assisting someone who has a seizure.❗️EDUCATION + AWARENESS = HELP to someone who may be in need during a seizure. Please share !! Do that we Break The Stigma & Make People More Aware of Our Invisible Illness 💜 #Epilepsy #Seizures #Awareness #Knowledge #LiveOutLoud #StandingTogether #Support

Link seen between seizures and migraines in the brain

Seizures and migraines have always been considered separate physiological events in the brain, but now a team of engineers and neuroscientists looking at the brain from a physics viewpoint discovered a link between these and related phenomena.

Scientists believed these two brain events were separate phenomena because they outwardly affect people very differently. Seizures are marked by electrical hyperactivity, but migraine auras — based on an underlying process called spreading depression — are marked by a silencing of electrical activity in part of the brain. Also, seizures spread rapidly, while migraines propagate slowly.

"We wanted to make a more realistic model of what underlies migraines, which we were working on controlling," said Steven J. Schiff, Brush Chair Professor of Engineering and director of the Penn State Center for Neural Engineering. "We realized that no one had ever kept proper track of the neuronal energy being used and all of the ions, the charged atoms, going into and out of brain cells."

Potassium and sodium contribute the ions that control electricity in the brain. The Penn State researchers added fundamental physics principles of conservation of energy, charge and mass to an older theory of this electricity. They kept track of the energy required to run a nerve cell, and kept count of the ions passing into and out of the cells.

The brain needs a constant supply of oxygen to keep everything running because it has to keep pumping the ions back across cell membranes after each electrical spike. The energy supply is directly linked to oxygen concentrations around the cell and the energy required to restore the ions to their proper places is much greater after seizures or migraines.

"We know that some people get both seizures and migraines," said Schiff. "Certainly, the same brain cells produce these different events and we now have increasing numbers of examples of where single gene mutations can produce the presence of both seizure and migraines in the same patients and families. So, in retrospect, the link was obvious — but we did not understand it."

The researchers, who also included Yina Wei, recent Penn State Ph.D. in engineering science and mechanics, currently a postdoctoral fellow at University of California-Riverside, and Ghanim Ullah, former Penn State postdoctoral fellow, now a professor of physics at University of South Florida, explored extending older models of brain cell activity with basic conservation principles. They were motivated by previous Penn State experiments that showed the very sensitive link between oxygen concentration with reliable and rapid changes in nerve cell behavior.

What they found was completely unexpected. Adding basic conservation principles to the older models immediately demonstrated that spikes, seizures and spreading depression were all part of a spectrum of nerve cell behavior. It appeared that decades of observations of different phenomena in the brain could share a common underlying link.

"We have found within a single model of the biophysics of neuronal membranes that we can account for a broad range of experimental observations, from spikes to seizures and spreading depression," the researchers report in a recent issue of the Journal of Neuroscience. “We are particularly struck by the apparent unification possible between the dynamics of seizures and spreading depression.”

While the initial intent was to better model the biophysics of the brain, the connection and unification of seizures and spreading depression was an emergent property of that model, according to Schiff.

"No one, neither us nor our colleagues anticipated such a finding or we would have done this years ago," said Schiff. "But we immediately recognized what the results were showing and we worked intensively to test the integrity of this result in many ways and we found out how robust it was. Although the mathematics are complex, the linking of these phenomena seems rock solid."

The ability to better understand the difference between normal and pathological activity within the brain may lead to the ability to predict when a seizure might occur.

"We are not only interested in controlling seizures or migraines after they begin, but we are keen to seek ways to stabilize the brain in normal operating regimes and prevent such phenomena from occurring in the first place," said Schiff. "This type of unification framework demonstrates that we can now begin to have a much more fundamental understanding of how normal and pathological brain activities relate to each other. We and our colleagues have a lot on our plate to start exploring over the coming years as we build on this finding."

Still smiling, even after an unexpected seizure during a rec league soccer game.*

If he can genuinely thank every nurse who accidentally peels off his body hair with medical tape while attempting to take his blood at 11 at night, we can all find a way to be more gracious and patient and sensitive to the people around us.

*probably because they won anyway. Go Team Svedka!

Sleep deprivation found to trigger initial seizure

Royal Perth Hospital neurologist and lead author Dr Nicholas Lawn says it is generally accepted that there is a link between sleep deprivation and seizures but what is unclear is whether seizures occurring during sleep deprivation should be regarded as a provoked cause. 

The International League against Epilepsy (ILAE) had documented prior expert knowledge in this area stating: ‘they do not define seizures associated with sleep deprivation as provoked’. 

Dr Lawn and his research team were able to support and provide statistical evidence for this ILAE rationale. 

“[The research] provides support for the concept that a first-ever seizure occurring in the setting of sleep deprivation should not be considered provoked and management in this situation, including driving advice, should not differ from that provided for patients with a first-ever unprovoked seizure,” Dr Lawn says.

When diagnosing a first-ever seizure neurologists look for a provoked cause such as what happened in the patient’s life leading up to the seizure. 

For instance, an acute metabolic disturbance such as very low glucose or sodium may provoke a seizure. 

In this research it was concluded that sleep deprivation is an unprovoked cause of first seizures and had little or no influence on the likelihood of seizure recurrence.

The study included a cohort of more than 1000 patients suffering from sleep deprivation in terms of both partial (50 per cent less sleep) and total sleep deprivation (<4 hours sleep in 24 hours).

The likelihood of seizure recurrence in patients with first-ever unprovoked seizures occurring with and without sleep deprivation were compared with results from patients with first-ever seizures related to a clearly defined proximate cause.

“The research indicates that sleep deprivation is more likely to be a trigger than specifically a cause of a first-ever seizure,” Dr Lawn says.

Epilepsy is difficult to diagnose and its causes are varied and not always clear.

“In approximately 50 per cent of cases the actual cause of epilepsy cannot be identified,” Dr Lawn says.

Guys this is important

So I went to go see the Amazing Spider-Man 2 last night, and it was pure gold
I absolutely loved it. But I need to inform people that there is a scene at least 2 whole minutes long of purely fast moving, loud flashing lights along with the scene. It is action packed and I needed to warn people who may be prone to seizures, have any sort of trigger to flashing lights and/or loud noises, epilepsy or any other type of mental dissimulation. it is insanely important that this is spread around, because there are no trigger warnings at the beginning of the movie to warn people and I couldn’t stop thinking throughout the entire scene that somebody, somewhere watching this movie could have been having a seizure because of this scene. PLEASE HELP INFORM PEOPLE ABOUT THIS

anonymous asked:

what should someone do to help when someone is having a seizure? it scares me bc i wouldn't know if it happened next to me and wouldn't want to cause the person any more trouble than they already have to go through! hope you feel better soon <3

thank you for asking this!

if it’s a family/friend at home, try and make sure they’re in a bed/couch. if that’s not possible, try and move them to a carpeted area and put a pillow under their head. loosen any tight clothing around their neck.

if it’s in a public place, gently guide them to the ground, try to use a soft purse or jacket to place under there head. loosen any tight clothing around their neck.

roll them on their side, but if they’re already having a seizure when you get there, DO NOT try and roll them on their side.
make sure there is nothing in their mouth, and don’t put anything in their mouth. and please, for the love of god, do not try and hold them down to stop the seizing. this could result in serious injuries (why i’m in the hospital now).

there isn’t much else you can do. try and see how long the seizure lasts (even though it can be scary to watch a seizure). a typical seizure lasts from 60-90 seconds. if it lasts more than 3 minutes, call 911 immediately.

after the seizure is over, DO NOT leave them alone. they will be very confused and disoriented. try asking them some simple questions like “what’s your name?” “what’s you birthday?”.
also, if you were unable to before, turn them on their side now.

if they’re conscious, ask them if it was their first seizure. if it was, call 911. if they are bleeding from their head, call 911. if they tell you they want to go to the hospital, call 911. if they aren’t responding after 4-5 minutes, call 911.

other than that, there isn’t a need to call an ambulance. most people with epilepsy have been through this before, and will just be sore and weak after their seizures (though this varies for the types if seizures)

A dear friend of mine shared this today on Facebook. The family in need is a very close to her and their sweet girl needs your help!
I’ve seen amazing things accomplished through this website and even if every one of my followers donated one dollar it would help this family tremendously!
Even if all you can do is reblog this, please do.
Below is Little Miss Lauren’s story and what your donation would help her gain.
Love you all

Lauren’s Story - also found online www.LittleMissLauren.com

In August of 2010, in our 33rd week of pregnancy, a large amount of fluid was found on our little girls brain. We had recently switched Obstetricians, and he had felt that I was measuring larger than my due date would indicate. After a negative testing for gestational diabetes, an additional ultrasound was done. After speaking to the doctor, we were sent directly to a high risk facility the same day. That day we found out that Lauren was going to be born with Spina Bifida, a clubbed foot, and a severe level of Hydrocephaly. The fluid on her brain would not allow much information about her brain formation at that time. Over the next two weeks we entered into a whirlwind of information and testing, one being an amniocentesis. Five days later my contractions had increased to the point of being kept overnight for observation at the hospital. An emergency C-section was scheduled by the next morning and Lauren Cassidy was born weighing 9lbs 15oz at 35 weeks. Most of her weight was due to the fluid on her brain and her head was at birth compared to that of a 2 year old or older.

Lauren stayed in the NICU for two weeks after her birth and during her first two days received a surgical procedure to close the opening of her spine (estimated to cover 4-5 vertebrae) and a shunt placement to allow drainage of the fluid from her brain. She also began having her foot cast to correct the deformation. Her shunt valve was adjusted many times over a 6 month period which resulted in cranial deformity, but for her it was necessary to offer her the best chance of development. A combination of both CT and MRI scans done of her brain eventually indicated that she was completely missing the Septum Pellucidum as well as the Corpus Callosum. During a second opinion in another city we were advised that her development would not move past an infant level. Lauren is now turning 3 in September and the typical milestones that she has met vary from a range of 6 months-18 months.

She amazes us daily with all of the things we feared she would never be able to do. Slowly she continues to conquers the unexpected. She has since been also diagnosed with Cerebral Palsy due to her brain malformations and the way it affects her range of movement. Due to these neurological effects Lauren has began over the last year and half to suffer from seizures that continue to increase. They are being successfully controlled by medication that requires adaption as they change. We have researched the benefits of having a Service Dog trained for Episodic Disorders which include seizures. Since many seizures can happen when a parent is not in the same room, and more often while sleeping, one can imagine our concern of needing this “guardian angel” of sorts to come and alert us if our ‘little ladybug’ is having a seizure.

The training of a Service Dog for Lauren will be a two year process in which we will enter into a contract where half of the $12,000.00 fee is due within 6 months of signing, and the remaining amount three months thereafter. We are beginning our fundraising efforts 2-3 months prior to signing to make this amount easier to reach. We appreciate your prayers, thoughts and contributions!