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    Community Voices

    Sleep Deprived EEG Tests

    I’m going to be having an eeg test soon for the first time. I just found out its a sleep deprived one.

    Have you had this test and can you tell me your experience with it? I’m wondering why the neurologist ordered this kind (sleep deprived) specifically.

    Did it get you and your doctors closer to proper diagnosis? #EEG #testing #Nerve and joint pain #neurologist #Diagnosis #mobility #Tinnitus #Epilepsy #ChronicPain

    32 people are talking about this
    Community Voices

    Trying not to get my hopes up!

    I’ve had a rough couple of weeks, mostly with my seizures. I’ve been fighting stomach issues forever, but it has been so much worse in the last year. I have an #EEG next week and a #Colonoscopy the following week. I need some answers…that’s something I struggle with the most. I am tired of doing endless medical testing to find nothing to explain anything. I’ve had enough, so any positive thoughts and/or prayers you can throw my way would be greatly appreciated! #Epilepsy #Needanswers #SoDone #mysteries

    1 person is talking about this
    Brian Fu
    Brian Fu @brian-fu

    Staying Awake for an EEG When It Could Harm My Mental Health

    I’ve got to be perfectly honest here. This is not my first time writing an article in the middle of the night. Sometimes I’ve written articles as late as 2 or 3 in the morning, so this is by no means a new experience for me. However, there is a unique reason why I am writing this in the middle of the night. I’ve struggled with insomnia and sleep problems, to one degree or another, for many years now. I had those issues in high school, and coming to college really didn’t help. Middle of the night study sessions, writing papers, and, I hate to say it, there was a party or two that I would stay up late for. All those things combined don’t help create a healthy sleep pattern in the long-term. Even one night of a disturbed sleep cycle can throw off a regularly developed pattern that may have been in place for a long time. Now, this is not true for everyone. People with particular sleep disorders or mental illnesses are at a higher risk for minor disturbances in sleep patterns becoming a larger problem. But tonight, my lack of sleep is not a byproduct of my mental illnesses or physical disabilities but is rather for the purpose of treating my physical disabilities. If I’ve said it once I’ve said it a thousand times on here. I live with a number of mental illnesses, but my primary health concern right now is a movement disorder that I experience, and yet have no name for. I’ve had almost every test conceivable done to explore what this could be, but nothing has shown up to potentially explain my symptoms. My neurologist and I are somewhat running out of options for exploratory procedures to determine what is going on with me. We’ve exhausted almost every possible avenue, and over the next couple of days, we will be trying what are probably the last options. After those, the focus of my medical journey will likely no longer be exploration and trying to find names to diagnoses, but rather finding treatments for the mysterious symptoms I have. But you may be wondering still, why am I writing this in the middle of the night? What does that have to do with this journey of finding an answer to my movement disorder? Like I said, tomorrow and the day after, I’m going to be having what are probably the last viable procedures that could produce answers to my issues. A very quick summary of my symptoms: eye-related tics (hard blinking, uncontrollable rolling eyes, etc.), difficulty walking to the degree that I need a cane, and the most debilitating symptom, dystonia in my arms and hands. Dystonia , for those of you who don’t know, is uncontrollable muscle contractions. My arms will bend and flex and get stuck because my muscles are just contracting uncontrollably. The symptoms have been progressing and getting worse, so a lack of a diagnosis has been frustrating. Especially since a formal diagnosis not only provides some comfort and affirmation but also lays out a clearer idea of what potential treatments are. The procedure I am having tomorrow is what is keeping me up tonight. I’m not nervous or anxious about getting the procedure done, so don’t read that as I am lying awake fearful for the procedure. Rather, me staying awake is a necessary element to the procedure being successful. I am having a form of a brain scan done called electroencephalography (EEG). Now, I am on the verge of finishing my undergraduate degree in neuroscience, so I could go on a long tangent of the details of this procedure but I will spare you that. In summary, an EEG measures brain wave activity by using several electrodes put onto your head. EEG is not the most modern brain scan technique there is, but it can still be very informative, especially in cases where a diagnosis is not clear. There are a couple of different ways EEG is used in the clinical realm. At one point in history, EEG was used to determine whether patients in hospitals were clinically “brain-dead,” but its clinical applications have expanded to diagnosing patients with neurological conditions. But again, I still have not addressed why I am awake so late. There is one method of using EEG in a diagnostic procedure which is referred to as “sleep-deprived EEG.” And it is exactly what it sounds like: I need to be sleep deprived before the procedure. In theory, I can get up to four hours of sleep the night before. I am electing to not sleep at all because I am afraid I will sleep through the procedure, or I will end up sleeping longer than four hours and potentially compromise the results. But this raises an interesting, you could say, conundrum for me. I already struggle with insomnia and an inability to fall asleep, and an inability to stay asleep. That problem clearly gets in the way of every aspect of my life. Everyone needs sleep, that’s why we all do it, and you know as well as I do the detrimental effects of either getting too much sleep or not getting enough sleep. So, when I found out that I needed to be sleep deprived for this procedure, I wasn’t really looking forward to it, to say the least. But my drive to figure out what is going on with me supersedes my desire for a good night’s sleep. Also, just to be brutally honest, there’s a solid chance I probably wouldn’t have slept very long tonight anyway, so how much am I really missing out on? Now, if insomnia was my only other medical-related issue, other than the movements, this situation would be a little more manageable. But I do not have that luxury of insomnia being my only issue. If you have ever read an article of mine, you will know that I have three main mental illness diagnoses:  bipolar disorder 2, attention-deficit/hyperactivity disorder (ADHD) and an unspecified anxiety disorder. For all three of those things, one factor of my daily life that is very foundational to treatment effectiveness is my sleep, especially for bipolar disorder . People without mood disorders  can attest to sleep problems leading to irritability, feelings of depression , and general mood instability. But, for those of us with mood disorders , difficulties with sleep have an exponentially larger negative impact on mood stability. So how do I balance these things? This is a very isolated incident. I am likely not going to need another EEG, and there aren’t really any other medical procedures that require sleep deprivation, at least none that are relevant to my situation. However, this just raises a larger, more philosophical question for me about my lifestyle and my priorities. What is it that I value more: finding solutions and answers to my movement disorders, or maintaining my mental stability and improving the effectiveness of the treatments I am already on? In the perfect world, I shouldn’t need to balance the two, because there would be a way to treat one without affecting the other. As I’m sure you are all aware, we do not live in a perfect world. And this is not an ideal situation for me, to put it bluntly. But it does get me thinking, and it is something I think that the larger community of people with mental illnesses and physical illnesses need to consider, especially those of us who deal with both at the same time. The question we need to keep on our minds is this: what is it that we value most? Which of our health challenges takes priority over the others? Is it even fair to prioritize multiple health conditions over each other? Does it get to the point where juggling these things eventually becomes self-destructive, rather than productive? I don’t have the answers to these questions necessarily, mainly because the answers are different for each person. Everyone has their own unique set of challenges, medical or not, and requires a unique set of solutions to those problems. Despite popular media perceptions of disability and mental illness , there is no magic pill or single treatment that works for everyone all the time. And because of that, each individual person needs to determine what requires the most attention, or the attention the fastest, depending on the number of factors you have to deal with. And because I am a science major, I deal with a lot of math, so I like to think about this in a somewhat mathematical way. And I promise I will not propose a math analogy that requires a math degree to understand. If someone were to show you an equation like 2 + 2, you could probably give an answer to that relatively quickly. If someone were to show you an equation like 2 + 2 x 4, it may take slightly longer to come up with that answer. You may see where I’m going with this now. The more numbers, the more functions, the more variables you add to a math problem, the more complicated the process for answering the question will be, and it will take more time. Now, to relate this back to the purpose of this article, the more health conditions, or the more challenges someone faces in life, those serve as additional elements that make the equation difficult to answer. Having to juggle multiple problems creates an issue of, “Which problem comes first?” Again, I don’t have the answer for you. Frankly, I don’t have an answer for myself either. All I know is this: By taking a chance on finding an answer to a very complex problem that I have, I am also risking exacerbating another serious problem I have. Will taking that chance ultimately be worth it? Well, that will come with time to determine. For right now, I am going to be awake for the rest of the night of the writing of this article because I am hoping that tomorrow, I could get some more answers to an issue that is starting to greatly inhibit my life. But it is something that I would propose to all of you. Consider what you value most, which issues or problems or challenges in your life you think require more attention right now, and also weigh the costs and benefits of dealing with each one. Life is not an isolated journey. No one has the luxury of only ever dealing with only one problem at any particular given point in their life. We all need to learn how to juggle a bit. Just remember, you aren’t expected to have everything figured out about all of your challenges. Be kind to yourself, do the best you can, listen to those around you who know what they’re talking about, and at the end of the day, do what you think is right.

    Community Voices

    A Diagnosis After 12 Years #Epilepsy #EEG

    About 2 months ago I started seeing a new Neurologist...I've been having migraines since I was 7 and having seizures since I was 8...Having been twelve years since I began having seizures I still wasn't technically "epileptic" (as my former neurologist didn't believe I was)...My new neurologist then suggested a five-day epilepsy study and I happily agreed (as maybe I'd finally find something out)...And the results shocked me.

    After the first day of my study, I expected my neurologist to say I was seizure-free (as I didn't feel like I had any that day), but I found out that I was having small 1-5 second seizures very often throughout the day, and having much longer 30-60 second seizures while sleeping!!

    After the study was over she told me there was zero argument, I was epileptic...And even though we didn't find a trigger for my seizures, it was still somewhat comforting to know that I had proof of my seizures (as I've been doubted by nearly everyone)...The only thing left is finding out when I'm having these seizures (as I don't even notice) and then finding out what is specifically causing them...

    2 people are talking about this
    Community Voices

    Hello everyone! I have an EEG tomorrow morning for my generalized epilepsy does anyone have tips to stay awake?

    Does anyone have any tips to stay awake I’m currently struggling bc my anxiety has been horrible and making me mentally exhausted I have to be sleep deprived I have to stay up till 12 a.m and go to sleep then and wake up at 4 a.m. if anyone has tips that works that would be amazing! #Epilepsy #EEG #Anxiety #SeizureDisorder

    4 people are talking about this

    Study Links Brain Activity in Hippocampus, Amygdala to Depression

    New findings published in the journal Cell suggest certain brainwave activity (or communication) between the amygdala and the hippocampus may correspond to depression and anxiety. The study, conducted by researchers at the University of California at San Francisco (UCSF), pointed out not just how interesting their discovery is, but how powerful these results can be to show you’re not “making up” a mental health condition. UCSF scientists built on previous research that shows how the brain plays a role in mood disorders and anxiety. They did this by analyzing results from EEGs (electroencephalography) placed on and inside the brain to monitor brain waves in patients with epilepsy. Over the course of seven to 10 days, all 21 study participants wore EEGs and self-reported their moods. When the researchers compared the self-reports to the results from the EEGs, they noticed changes in the brainwaves (communication) between the amygdala and the hippocampus. Both the almond-shaped amygdala and the hippocampus are part of the limbic system , which is sometimes characterized as the “feeling and reacting brain.” The amygdala is what helps us recognize danger, which has long been tied to anxiety, our response to perceived danger . It’s also important for memories, which tend to be strongly related to emotions. The hippocampus helps form and store memories, as well as attach emotions and sensory information to them. Researchers identified that more than half of study participants who already had more anxiety showed distinct communication patterns between their amygdala and hippocampus. These same participants with a strong and active link between these two regions of the brain also reported a depressed mood, which was shown on the EEG results. The researchers hypothesized a lower mood could be related to more emotionally charged memories in those who experience higher levels of anxiety. Co-lead author of the study, Vikaas Sohal, a psychiatrist and neuroscientist at UCSF, told The Mighty more about what they found in their research: The hippocampus and amygdala have long been implicated in memory and negative emotion, respectively. So it may be that when you are feeling down, you are thinking about a sad memory, or that feeling bad triggers the recollection of sad memories. The idea that negative emotions and memory are linked is a long-standing idea in psychiatry and psychology, but we may have found the brain networks that are responsible for this link. The new study’s finding is significant because though researchers have long known the hippocampus and amygdala are related to anxiety and depression, this may be the first time scientists have pinpointed the exact brain networks responsible for this link to mental illness. However, if you live with a mental health condition, Sohal said this study further identifies a biological reason for mental illness that could help reduce the fear and stigma surrounding mood disorders . “I think the most important thing is that it means when you are feeling down or anxious, it’s not just something you are imagining or ‘making up.’ These feelings seem to reflect specific, measurable, quantifiable patterns of brain activity,” Sohal said. Sohal added in a statement , “It’s really powerful to say to subjects that when you’re feeling down it’s due to communication between these two brain structures at a particular frequency. It helps everybody think about these things in a way that is destigmatizing and empowering.”

    Jonelle Cavill

    Advice for Parent Whose Child Was Just Diagnosed With a Brain Tumor

    Yes, your beautiful baby boy has a brain tumor. The neurosurgeon will tell you he can get it out and then you can go home and heal in about a week. But he doesn’t get it all, and you won’t go home in a week. It’s not going to be an easy road. Things aren’t going to go back to normal — ever. The quicker you accept this, the faster you can find a new normal. The days following surgery will be almost unbearable. There will be seizures and EEGs and CT scans and MRIs and lots and lots of meds. And very little sleep. Jonelle’s three children. There will be doctors you love and doctors you hate. There will be nurses you love and others … not so much. Research everything and don’t ever stop asking questions. He’s your child and your responsibility. Become the expert. You will miss and worry about your daughters and husband so badly it will physically hurt. They will be fine. Your husband will take care of things you never thought he could. Give him more credit. The girls’ teachers will be in awe of their strength and ability to carry on and perform each and every day in school. And your community and circle of family and friends desperately want to help. Let them. People are amazing. There will be those special few, though, who are just there for whatever you need. To sit and just be quiet. To not ask too many questions. To help carry the load when you miss work. To not give advice or tell you that everything happens for a reason or God only gives you what you can handle. To say, “This really
 stinks. How can I help?” Appreciate them. Having a medically fragile child can be overwhelming, but it does get easier. You will settle into a routine. Support groups are out there. These moms will save your life. Find them. Gain perspective. You know how you get stressed about dog hair on the hardwood floor, overflowing hampers and dishes constantly piled in the sink? Forget it. Embrace the mess and find all the joy and laughs you can in each and every moment. You and your family deserve it. Sincerely, The New You The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

    Mom Describes Moments After Son's Seizure

    It was inevitable. I had been waiting for this moment ever since an EEG had shown that my 3-year-old had a propensity for seizures due to the stroke he suffered as an infant. Nothing could have prepared me for seeing my toddler, normally bright and full of energy, rendered completely immobile by the storm going on in his brain. It’s strange to think I wasn’t prepared, considering I was baptized by fear into motherhood when my then 5-day-old suffered nonstop seizures from a stroke that nearly took his life.     But this was different. He had been doing so well and had gradually gotten better over the past three years. I’m seasoned now, steeled even, but that meant I have found more than one companion in these hard times. Fear, always lingering, is easy to give in to during these times. But there is also joy. So this time I give in to joy. And even as my son is loaded into an ambulance with my husband while I stayed behind for our 1-year-old, who still requires my milky reassurance at night, I felt peace. You read that right, peace. If I focus on the fear, I know it will consume me, and I can’t let it. I refuse to become embittered and ruined by these events. So when fear flashes the sight of my son’s blue lips and whispers, “He might not make it this time,” I counter with the knowledge that he’s robust and resilient. And not too long following peace comes joy. Joy comes when my son wakes up at 5 a.m. in the critical care unit and immediately demands television and food the same as every other morning. Joy is when he grabs both sides of my face and touches his nose to mine. Joy is when he’s removed from monitors and is finally mobile. Joy is when he holds my finger in one hand and with the other clings to his father who is also holding our daughter as we walk through the double doors that open automatically for our little family as we leave the hospital. Joy is the huge grin when he gets into Daddy’s truck. Joy is enjoying the beautiful sunset while driving home. Joy is scrubbing the sticky marks from leads left on my son’s chest and washing his smelly toddler body for the first time in days and tucking him safely into bed. Though I feel naïve sometimes, and though fear creeps in every now and then, I will give myself to joy. I will settle into the comforting arms of the peace that follows joy and let tomorrow take care of itself while I enjoy contentment in the wake of trauma. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.