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  • About Epilepsy
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    What's New in Epilepsy
    Community Voices

    4 people are talking about this
    Community Voices

    Epilepsy seizure in bathroom and stuff

    <p><a href="https://themighty.com/topic/epilepsy/?label=Epilepsy" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7c00553f33fe992254" data-name="Epilepsy" title="Epilepsy" target="_blank">Epilepsy</a> seizure in bathroom and stuff</p>
    3 people are talking about this
    Community Voices

    Wedding Planning, Migraines, and Brain Injuries - OHHH MY

    HI y'all (yes, I am from Massachusetts and say y'all, haha) - my fiancé and I will have been together for #tenyears coming August 17th and we are getting married in October. We are so excited! I

    I had brain surgery for intractable #Epilepsy when I was 17 years old, and he and I have been friends since I was 8 years old - so he has seen it all, and then some. Since we got together when I was 20 years old, I have sustained three concussions, one being in a major car accident in February - each causing my migraines to worsen. And each year, we have unraveled more layers of how my initial surgery impacted my mind and body. We have been through so much, surgeries for me and he has a detached retina that had an old suture come through - and we are *praying* we can find someone who can reattach it. SO, we have been through more than people I have met that have weathered thirty year marriages.

    SO, our wedding is a BIG DEAL for us - however, it has become a disaster! Nobody seems to understand how draining it is to plan, chase down RSVPS (because half our guests didn't even get their invites), manage family opinions, and also look for a new job all at the same time. Did I mention my rock of a fiancé made sure he got a solid job so I could pursue my writing, and #workfromhome because I was in education and got #COVID19 twice? I am generally someone who can delegate well, but this is causing so much anxiety. Has anyone else had to set firm boundaries with family when wedding planning? I know weddings are stressful, but I didn't want it to be this way because of everything I have going on. Advice so welcome. Thank you!

    1 person is talking about this
    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

    31 people are talking about this
    Community Voices

    HOW DOES ONE COPE WITH BEING SHUNNED BY CHURCHES DUE TO NEULOGICAL DISABILITIES? I have always had epilepsy and bad side effects from brain surgery

    Community Voices
    Community Voices

    Here I am

    I have no friends due to epilepsy. The medication is so expensive and insurance runs me down. My family doesn't really understand me and have been abandoned by some. #alone #misunderstood #Epilepsy

    4 people are talking about this
    Community Voices

    Can’t sleep #Epilepsy #Anxiety

    So I’m a teenager going through the time where u have to take things seriously, and I can’t sleep. I was diagnosed with epilepsy when I was around 13-14 years old. And I’m trying to get a better sleep schedule but I just can’t sleep and if I wake up it’s 11 am - 2pm. And it’s weird because during the summer I never had dreams until the times I sleep at 2-4 am in which has been happening starting earlier this week. And some dreams I wake up in fear of what I’ve done in the past or what I’m going to do in the future.

    5 people are talking about this
    Janet Coburn

    Can Sleep Apnea Affect Your Mental Health?

    My husband and I both have sleep apnea. We also both have depression, or at least he does, and I have bipolar disorder with a pretty hefty depressive bent. Sleep apnea is a medical condition in which a person stops breathing multiple times a night. The body responds to this by resuming breathing after a second or two, but sleep disruption has already occurred. For my husband, this occurs up to 60 times a night, while it happens to me more like six times. Technically, my version is called “hypopnea” (hypo+pnea – low+breath; apnea, a+pnea – no+breath.) The body depends on breathing, of course, for oxygen, but it also depends on sleep – which is disrupted in sleep apnea – for proper functioning. REM sleep, for example, is vital for dreaming, which has multiple beneficial effects on the body and mind. REM sleep has been known to be altered in depression, and studies have suggested that it is involved in modulating mood symptoms, including psychological distress in general. One of the more observable symptoms of sleep apnea is loud and prolonged snoring, which both my husband and I have experienced. While I was traveling with my mother, she even requested that I let her go to sleep first since my snoring kept her awake. But what does sleep apnea actually do to the brain? Surely lack of oxygen to the brain has some effect. Indeed it does. According to research conducted at UCLA, “gasping during the night that characterizes obstructive sleep apnea can damage the brain in ways that lead to high blood pressure, depression, memory loss, and anxiety.” Sleep apnea has been associated with difficulty concentrating, memory problems, poor decision-making, depression, and stress. A study published in Sleep Health found that untreated sleep apnea increases the chance of anxiety by over three and a half times; depression, by more than three times; severe psychological distress, by not quite three times; and suicidal thoughts, by more than two and a half times. Sleep apnea has also been associated with PTSD. The Journal of Clinical Sleep Medicine recommends that “in individuals with [obstructive sleep apnea] and psychiatric illness, treatment of both disorders should be considered for optimal treatment outcomes.” Studies suggest that sleep apnea is linked with changes in at least two neurotransmitters in the brain (GABA and glutamate) that combine and coordinate signals that help regulate emotions, thinking, and some physical functions. Researchers plan to investigate whether treatments for sleep apnea will help these brain chemical levels return to normal. SSRIs (selective serotonin reuptake inhibitors) such as fluoxetine and sertraline (Prozac and Zoloft) are thought to be valuable in treating sleep apnea. One study indicated that SSRIs may be a good treatment option for [sleep apnea], particularly for those [patients] with epilepsy. Another study showed a link between “having sleep apnea and increased odds of having a mental health issue” or symptoms such as anxiety or thoughts of suicide. Treatments for sleep apnea include dental appliances to be worn while sleeping, lifestyle changes, and even surgeries. These treatments sometimes address snoring directly, but not the underlying mechanism. The more effective treatment is “positive air pressure,” delivered by CPAP machines. CPAPs use positive air pressure to keep the sleeper’s airway from collapsing, which is what impedes their breathing and jolts their brains into resuming it. They consist of a unit that generates air pressure, a hose and mask to deliver it, and assorted straps to keep the hose in place throughout the night. The masks can be ones that cover the entire nose and mouth or cannulas that are simply placed in the nostrils. There are also cushions on the masks or available separately that reduce discomfort as well as waking up with “mask face.” Many people find the masks uncomfortable to wear all night, but others use them not only at night but also for naps. Unlike a ventilator, the CPAP doesn’t breathe for a person. It allows them to breathe more effectively on their own. Diagnosing sleep apnea requires a “sleep study” ordered by a doctor. Assorted leads are attached to the subject, who then spends all night sleeping (or trying to). Breathing rate, heart rate, oxygen saturation, and other parameters are measured and a record is kept of the number of times the subject stops breathing during the night. This is sent to the doctor, who can then prescribe a CPAP unit and mask. Dan and I both use CPAP machines. They are a bit inconvenient, especially when we travel and have to take power cords so we both can use them at the same time (and power converters when we travel abroad). When it comes to packing, the machines are a bit bulky and somewhat heavy. Still, we take them with us religiously. Has sleep apnea treatment improved our mental health? It’s hard to tell, especially since we’re both taking SSRIs anyway. I know correlation isn’t causation, but our depression and bipolar have certainly eased up since we started getting treatment and our sleep cycles have become more regular. But if all it does is stop the snoring, that’s still a win for us. So, if you snore a lot and have a mental health condition, you might want to be tested for sleep apnea and treated if you do. Like chicken soup, it can’t hurt and might help.

    Lessons I've Learned as a Social Worker for People With Disabilities

    Since I first told people I was going to study social care, people have told me “Oh, you’ll have a wonderful experience going into that!” or “That will suit you as a career.” Having my brother in my life has brought me down a path of patience, encouragement, and open-mindedness — which I know will go a long way in the social care sector. However, after recently starting a new job in social care, I’ve learned things I never thought I would and felt emotions I struggle to understand. Doing things one way for so long because I know what works for my brother has challenged me in social work because I slowly have to start opening my mind to other ways of doing things. I am learning that I should never have expectations or preconceived ideas about how to help others. Just because a person has a disability you generally understand doesn’t mean you know their individual needs. In my new position, I’ve started working with a young adult who is autistic and non-verbal and has epilepsy. Being able to bring ideas that have worked for my brother into this man’s life has been hugely rewarding. I can see a benefit to bringing these ideas in, and I have found that even bringing a simple idea that worked for my brother has ended up making this young adult’s milestones and successes more profound. One thing we were always told in social care is to separate our personal and work lives. I always thought this was a cold-hearted way of working in the field. Our clients depend on us, so the thought that I can’t even think of them outside of work hours just didn’t seem right to me. However, working in a social care job has shown how important it is to find balance. If I bring this young adult’s challenges home, I’d struggle to look after my own mental health, which I need to succeed in helping him. It’s OK to not think about your clients when you go home — it doesn’t mean you don’t care about them. It’s often important to look after your well-being and “switch off” from work to give your clients the care they need. I have also found the “paperwork” side of social care to be eye-opening. I was always someone who enjoyed administrative work and staying on top of my checklists. In social care, every aspect of a service user’s life is to be written down somewhere. There’s a different form for everything — incidents, family contacts, and sometimes even clients’ food intakes. We always have to make sure everything we do “ticks a box.” I completely understand that we fill out paperwork for our clients’ safety and well-being — making sure everything we do benefits them in some way. However, I feel sometimes we receive the message that the paperwork is more important than the service users themselves. This paperwork has been put in place to protect service users and staff from harm, but what harm have they gone through to need this extensive paperwork? I always worry that if service users saw the amount of paperwork going on behind the scenes, they’d view themselves as case numbers instead of people. If you are considering a job in social care, my advice would be to treat clients like human beings. At the end of the day, these are their lives, so coming into their worlds putting in little to no effort because you are tired or cannot be bothered is not acceptable. Let each day your clients have with you be a positive experience for them — no matter how small. Not all days will be “good,” but not all days will be “bad” either. You can make sure that even on hard, stressful days, your clients have you with them every step of the way. Try your best, and don’t be afraid to ask for help. Treat your team and your clients with respect. Social care isn’t an easy line of work, but I am proud to say I work in such an impactful field.