Posts Tagged fear

[WEB SITE] The Parts of Epilepsy We Often Don’t Talk About

 

Growing up, my biggest secret was that I had epilepsy. I have had it since I was 5.  Neurologists kept saying, “She’ll grow out of it.” I’ve tried medication after medication, trying to control the seizures and limit the number of side effects.  I’ve tried weaning off medication, only for a seizure to return within one or two days. Life becomes more bearable when my seizures are controlled, but I never feel carefree.  Epilepsy is much more than having seizures.

With my epilepsy comes fear.  I am constantly cautious and afraid.  I am afraid of having a seizure during school, at work or in public.  Although I’ve been seizure-free for over a year, I am afraid of driving down the road and feeling that tingling in my stomach and not being able to pull the car over quickly or safely enough. I am afraid of injuring my brain and body beyond repair. I am afraid of who will see me. I am afraid of waking up from a seizure and being alone. I am afraid of forgetting my medication.

With my epilepsy comes depression. For me, epilepsy has always brought along depression for company. With each anti-seizure medication, the depression waxes and wanes, but it always lingers like a permanent resident in my brain.  When I am honest about my suicidal thoughts, doctors prescribe an antidepressant. We both hope the depression will fade, but I am usually met with a new set of side effects.  Together, both conditions appear invincible, but I always fight back. Depression tells me to die instead of taking the pills from the container. Depression tells me the darkness is here to stay.  Depression steals my energy and my smiles. When I am always outnumbered, and the fight is unfair, I wonder how much of who I have become is due to the medication and how much is truly me.

Too often, with epilepsy comes shame. All through grade school, I heard kids at school make fun of seizures and even pretend to have seizures. I listened and watched. As one of the quietest students in class, my lips felt zippered shut, but my face turned red. They did not know what it feels like to lose control of your body. They didn’t know what it was like to wake up confused and disoriented, not knowing how long the seizure lasted or what was happening before it. I was not brave enough to speak up.

My closest friends didn’t know I had epilepsy. I snuck away at sleepovers to take my medication at 8:00 p.m. I made excuses as to why I couldn’t drive, why I wouldn’t drink alcohol, why I occasionally arrived to school late, why I visited a hospital that was over an hour away rather than the local doctor’s office, or why there was a bruise on my forehead.  When I started telling people outside of my family, they would reply with phrases such as “I didn’t know that you were an epileptic,” “I need to be careful around you,” or “At least it’s not something terminal.” They may not have known their words were insensitive or hurtful, but I have never been met with comfort or acceptance after telling my story. Only shame.

Epilepsy can be somewhat of an invisible illness. Sometimes I can hide it. Other times, I can’t. Epilepsy is much more than having seizures.  For some people, myself included, it’s a lifelong challenge.

Having epilepsy can mean battling depression, anxiety, insomnia, muscle weakness, lethargy, weight gain, and a host of other negative side effects from seizures and medications. It can mean staying home from work or school because of an aura. It can mean keeping secrets from best friends. It can mean refusing to give up regardless of what others think and say, how many medications you’ve tried, and the side effects that never subside. I have often wondered who I would be without epilepsy. While I fight the shame and stigma within myself, I have learned and accepted that epilepsy is a part of who I am.

But only one part.

RESOURCES

If you or someone you know needs help, visit our suicide prevention resources.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741.

via Epilepsy Is About More Than Seizures | The Mighty

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[REVIEW] Care delivery and self-management strategies for children with epilepsy – Abstract

Abstract

Background

In response to criticism that epilepsy care for children has little impact, healthcare professionals and administrators have developed various service models and strategies to address perceived inadequacies.

Objectives

To assess the effects of any specialised or dedicated intervention for epilepsy versus usual care in children with epilepsy and in their families.

Search methods

We searched the Cochrane Epilepsy Group Specialized Register (27 September 2016), the Cochrane Central Register of Controlled Trials (CENTRAL; 2016, Issue 9) in the Cochrane Library, MEDLINE (1946 to 27 September 2016), Embase (1974 to 27 September 2016), PsycINFO (1887 to 27 September 2016) and CINAHL Plus (1937 to 27 September 2016). In addition, we also searched clinical trials registries for ongoing or recently completed trials, contacted experts in the field to seek information on unpublished and ongoing studies, checked the websites of epilepsy organisations and checked the reference lists of included studies.

Selection criteria

We included randomised controlled trials (RCTs), cohort studies or other prospective studies with a (matched or unmatched) control group (controlled before-and-after studies), or time series studies.

Data collection and analysis

We used standard methodological procedures expected by Cochrane.

Main results

Our review included six interventions reported through seven studies (of which five studies were designed as RCTs). They reported on different education and counselling programmes for children and parents; teenagers and parents; or children, adolescents and their parents. Each programme showed some benefits for the well-being of children with epilepsy, but all had methodological flaws (e.g. in one of the studies designed as an RCT, randomisation failed), no single programme was independently evaluated with different study samples and no interventions were sufficiently homogeneous enough to be included in a meta-analysis,.

Authors’ conclusions

While each of the programmes in this review showed some benefit to children with epilepsy, their impacts were extremely variable. No programme showed benefits across the full range of outcomes, and all studies had major methodological problems. At present there is insufficient evidence in favour of any single programme.

Plain language summary

Care delivery and self-management strategies for children with epilepsy

Background

Epilepsy is spectrum of disorders in which a person may have seizures (fits) that are unpredictable in frequency. Most seizures are well controlled with medicines and other types of treatments, but epilepsy can cause problems in social, school and work situations, making independent living difficult. People with seizures tend to have physical problems (e.g. fractures, bruising and a slightly increased risk of sudden death) as well as social problems because of the stigma attached to the illness. People with epilepsy and their families may lack social support or experience social isolation, embarrassment, fear and discrimination, and some parents may also feel guilty. Self-management of epilepsy refers to a wide range of health behaviours and activities that a person can learn and adapt to control their seizures and improve their well-being. This approach needs a partnership between the person and the providers of services (e.g. specialist epilepsy outpatient clinics, nurse-based liaison services between family doctors and specialist hospital doctors, specialist epilepsy community teams), as well as targeted services for specific groups (e.g. children, teenagers and families).

Study characteristics

We searched scientific databases for studies in children and adolescents with epilepsy that looked at the effects of self-management of epilepsy. The results are current to September 2016. We wanted to look at several outcomes to see how well people and their families generally cope with epilepsy.

Key results

This review compared six education- or counselling-based self-management interventions for children with epilepsy. Four interventions were aimed at children and their parents; one was aimed at teenagers and their parents; and one was aimed at children, adolescents and their parents. Each of the interventions appeared to improve some of the outcomes studied, but no intervention improved all of the outcomes that were measured. The studies also had problems with their methods, which makes their results less reliable. While none of the interventions caused any harm, their impact was limited, and we cannot recommend any single intervention as being the best one for children with epilepsy.

Evidence for the best ways to care for children with epilepsy is still unclear.

Quality of the evidence

The quality of the evidence is poor because all of the studies had major problems in how they were run.

 

via Care delivery and self-management strategies for children with epilepsy – Fleeman – 2018 – The Cochrane Library – Wiley Online Library

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[BLOG POST] 5 Things Every TBI Survivor Wants You to Understand

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March is National Brain Injury Awareness Month, and as promised, I am writing a series of blogs to help educate others and bring awareness to traumatic brain injuries (TBI).

1. Our brains no longer work the same. 
We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

2. We suffer a great deal of fatigue.
We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see.  I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar.  If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen.  Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.

3. We live with fear and anxiety. 
Many of us live in a constant state of fear of hurting ourselves again. For myself personally, I have a fear of falling on the ice, and of hitting my head in general. I know I suffered a really hard blow to my head, and I am not sure exactly how much it can endure if I were to injure it again. I am deeply afraid that if it were to take another blow, I may not recover (ie, death) or I may find myself completely disabled. I am fortunate to have a great understanding of the Law of Attraction and am trying my hardest to change my fears into postive thoughts with the help of a therapist.

Others have a daily struggle of even trying to get out of bed in the morning. They are terrified of what might happen next to them. These are legitimate fears that many TBI survivors live with. For many, it manifests into anxiety. Some have such profound anxiety that they can hardly leave their home.

Jason Donarski-Wichlacz from Duluth, MN, received a TBI in December of 2014 after being kicked in the head by a patient in a behavioral health facility. He speaks of his struggles with anxiety:

I never had anxiety before, but now I have panic attacks everyday. Sometimes about my future and will I get better, will my wife leave me, am I still a good father. Other times it is because matching socks is overwhelming or someone ate the last peanut butter cup.

I startle and jump at almost everything. I can send my wife a text when she is in the room. I just sent the text, I know her phone is going to chime… Still I jump every time it chimes.

Grocery stores are terrifying. All the colors, the stimulation, and words everywhere. I get overwhelmed and can’t remember where anything is or what I came for.

4. We deal with chronic pain.
Many of us sustained multiple injuries in our accidents. Once the broken bones are healed, and the bruises and scars have faded, we still deal with a lot of chronic pain. For myself, I suffered a considerable amount of neck and chest damage. This pain is sometimes so bad that I am not able to get comfortable in bed to fall asleep. Others have constant migraines from hitting their head. For most of us, a change in weather wreaks all sort of havoc on our bodies.

Lynnika Butler, of Eureka, CA, fell on to concrete while having a seizure in 2011, fracturing her skull and resulting in a TBI. She speaks about her chronic migraine headaches (which are all too common for TBI survivors)

I never had migraines until I sustained a head injury. Now I have one, or sometimes a cluster of two or three, every few weeks. They also crop up when I am stressed or sleep deprived. Sometimes medication works like magic, but other times I have to wait out the pain. When the migraine is over, I am usually exhausted and spacey for a day or two.

5. We often feel isolated and alone.
Because of all the issues I stated above, we sometimes have a hard time leaving the house. Recently I attended a get together of friends at a restaurant. There were TVs all over the room, all on different channels. The lights were dim and there was a lot of buzz from all of the talking. I had a very hard time concentrating on what anyone at our table was saying, and the constantly changing lights on the TVs were just too much for me to bear. It was sensory stimulation overload. I lasted about two hours before I had to go home and collapse into bed. My friends don’t see that part. They don’t understand what it’s like. This is what causes many of us to feel so isolated and alone. The “invisible” aspect of what we deal with on a daily basis is a lonely struggle.

Kirsten Selberg from San Francisco, CA, fell while ice skating just over a year ago and sustained a TBI. She speaks to the feelings of depression and isolation so perfectly:

Even though my TBI was a ‘mild’ one, I found myself dealing with a depression that was two-fold. I was not only depressed because of my new mental and physical limitations, but also because many of my symptoms forced me to spend long periods of time self-isolating from the things — like social interactions — that would trigger problems for me. With TBI it is very easy to get mentally and emotionally turned inward, which is a very lonely place to be.

Also, check out my other blogs on the Huffington Post:
“Life With a Traumatic Brain Injury”
“Life With a TBI: March is National Brain Injury Awareness Month”

I invite you to join my TBI Tribe on Facebook if you are a survivor, or loved one of a survivor.

via 5 Things Every TBI Survivor Wants You to Understand | HuffPost

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[WEB SITE] Social Anxiety – Voices4Hope

SOCIAL ANXIETY

Girl with anxiety can't speak, talking in group


Social Anxiety is a feeling of discomfort, fear, and apprehension that is based on interactions with others. Social Anxiety specifically refers to a fear of being negatively judged or looked down upon by others. Social Anxiety can not only be felt during an interaction but also felt when thinking about past and future social interactions. Social anxiety is very commonly felt by people with other mental health conditions. 
Anxiety
Some of the main social interactions that stir up social anxiety are

 

VISIT —> Social Anxiety – Voices4Hope

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[WEB SITE] 5 Things Every TBI Survivor Wants You to Understand

  1. Our brains no longer work the same.

We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

  1. We suffer a great deal of fatigue.

We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see.  I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar.  If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen.  Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.

more–>  5 Things Every TBI Survivor Wants You to Understand | Amy Zellmer.

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[WEB SITE] 5 Things Every TBI Survivor Wants You to Understand

1. Our brains no longer work the same.

We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

2. We suffer a great deal of fatigue.

We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

Continue –> 5 Things Every TBI Survivor Wants You to Understand | Amy Zellmer.

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