Skip to main content

Epilepsy Survivor: Alysse's Story

Alysse Mengason of Birmingham, Michigan, had a grand mal seizure in her sleep and went into a coma. When she woke up she had no idea what had happened, but she fought her way back to a fulfilling life, and blogs the trials of living with epilepsy at BrainThunders.com. Here is a Q&A with Mengason for National Epilepsy Awareness Month this November.

Alysse Mengason
SheKnows: After intense therapy, you regained much of your balance and cognitive function, but still experience as many as 15 seizures per week. What happens during a seizure?

Alysse Mengason: I can have the tiniest little episode that lasts for seven to 10 seconds, where I just get dizzy and lose my ability to speak. Or I can have an episode that lasts about 30 seconds; I get very heavy-headed, I can't remember the simplest of things like my husband's name or my daughter's name. I literally lose my ability to speak. My grand mal seizures don't occur often, but I do have what's called an "aura." I have about a five-second warning where my head begins to spin, I smell sort of a metal scent and I black out completely.

SheKnows: How do you deal with seizures?

Alysse Mengason: I have tried at least a dozen anti-seizure drugs -- one drug at a time or a combination of medications. I've tried the ketogenic diet -- a high fat, low-carb diet that's been proven to reduce seizures. I've also made two attempts at surgery in two different hospitals. Single-drug therapy was the way to go because I wanted to limit my side effects.

Alysse Mengason
SheKnows: How has VNS therapy, where a battery-operated device implanted in your body sends signals to your brain to stop seizures, helped you live a more "regular" life?

Alysse Mengason: Because I've reduced the amount of seizures, I feel better. The VNS was recommended to me by my doctors after my second attempt at surgery failed.

SheKnows: How do you manage the day-to-day?

Alysse Mengason: My life is incredibly scheduled and disciplined. Because of this, my daughter and my husband are very scheduled! I don't drive, so my errands are done at designated times when I do have help. Our daughter is involved in various activities, and I have a very specific plan on how we get to where we have to go, whether it's with our babysitter or my mom -- transportation is something many people take for granted. I've worked hard to build a small team of family and friends who help me now and then.

Alysse Mengason
SheKnows: Can you improve your memory function?

Alysse Mengason: I write a lot down. I try to stay very organized and on top of current events. News will spark my memory. I also try to take good care of myself. Social media helps, too. I can connect with old friends on Facebook and in just a few lines they can remind me of things I can't recall.

SheKnows: What's your key message for people with epilepsy?

Alysse Mengason: Be your own advocate. Take your prescribed medication, avoid seizure triggers, make sure you find a doctor you are pleased with and work to form a great relationship. Keep up on epilepsy news and whether it's virtual or in person, make sure you have a support system.

by Karen Hawthorne
Post a Comment

Popular posts from this blog

What Is Continuous Spike-Wave in Slow Wave Sleep Syndrome? (A RARE EPILEPSY)

Image via Wikipedia Continuous spike-wave in slow wave sleep syndrome (CSWS) is a rare epilepsy syndrome in which children lose a wide range of developmental abilities, including language, motor skills, memory, and visuospatial skills. This syndrome occurs in school-aged children. Development prior to onset of CSWS may be normal, but children with CSWS often have some pre-existing learning difficulties. In many children there is no known cause of epilepsy, although some children are found to have abnormal brain formation or have a prior history of brain infection. We still do not understand how these structural changes result in the continuous EEG discharge.

Many, but not all, children with CSWS also have seizures. There can be many different seizure types, including absence, generalized tonic-clonic, and focal seizures. The seizures can be difficult to treat. Even in those who already had learning difficulties, there is a clear loss of skills across multiple deve…

Vitamin B12: The Most Important Nutrient You Need

Image via Wikipedia
Image by icethim via Flickr If you aren’t getting enough vitamin B12, it is indeed very important – and you may very well not be thinking about it. One reason you aren’t thinking about it is that we tend to fall in (and out!) of love with one nutrient at a time (such as vitamin C, beta carotene, lycopene and so on), and vitamin B12 isn’t the nutrient du jour. But the other reason you may not be thinking about it is … because you can’t. A deficiency of vitamin B12 can limit your ability to think clearly about anything! (More on that momentarily.)
Like all vitamins, B12 is an organic compound, made from carbons (as opposed to minerals, which are inorganic), and essential for our normal metabolic function and health. Also, like most vitamins, B12 plays a wide variety of roles in our metabolism. The short list of important effects B12 has on your health includes these: Vitamin B12 is essential for the manufacture of red blood cells; a deficiency leads to a cha…

Aloe Vera - diabetes, asthma, epilepsy, burns, sunburns, psoriasis and osteoarthritis

Introduction This fact sheet provides basic information about aloe vera—common names, uses, potential side effects, and resources for more information. Aloe vera's use can be traced back 6,000 years to early Egypt, where the plant was depicted on stone carvings. Known as the "plant of immortality," aloe was presented as a burial gift to deceased pharaohs.
What Aloe Vera Is Used ForTraditionally, aloe was used topically to heal wounds and for various skin conditions, and orally as a laxative.Today, in addition to traditional uses, people take aloe orally to treat a variety of conditions, including diabetes, asthma, epilepsy, and osteoarthritis. People use aloe topically for osteoarthritis, burns, sunburns, and psoriasis.Aloe vera gel can be found in hundreds of skin products, including lotions and sunblocks.The Food and Drug Administration (FDA) has approved aloe vera as a natural food flavoring. Aloe vera ...Lô Hội, Nha Đam..#1 (Photo credit: Vietnam Plants &…