Epilepsy Awareness Day 5: Brain Fog

I’ve looked up “brain fog” and its description is a bit different then what I have experienced in relation to epilepsy and migraine. The symptoms I experience included:

  • troubles thinking
  • short term memory issues
  • No concentration or focus
  • feeling like I’m outside of what is happening
  • unable to process what is going on around me
  • problems thinking of words
  • problems remembering what words mean
  • problem solving
  • can’t remember what I’m doing
  • mobility issues
  • Problems going place to place. Like I have trouble walking from my room to the kitchen because I don’t remember where the kitchen is or what the word kitchen means. What is that? Why should I go there? How do I get th486485bae049d82fdd26f3daac7c7614ere?
  • confusion and frustration

Brain fog is a symptom that can be a warning sign and is a symptom experienced while recovering from the seizure. It can last a long time or just a few minutes. I usually  experience brain fog for long periods. It is frustrating, especially when the people around me are not understanding. Its especially hard when it happens in public places. There is nowhere to hide and difficulties communicating what is happening. Which is problematic more so if brain fog is a warning sign. There are symptoms a lot worse and more dangerous then brain fog. I think brain fog is more annoying and frustrating symptoms of seizures and migraine. It is one symptom that makes it hard to pass interviews and keep managers happy.  But the most important thing about brain fog is that it is a single that there is something amiss with my neurons.

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Epilepsy Awareness Day 4: Pookie The Dog

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This is Pookie, she is named after Garfield’s teddy bear. I lived with Pookie for a few years and she slept with me. After a few weeks she started asking me to take naps. She was so insistent that I went with her. She would always lay across my chest or behind my back, forcing me to lay on my side. I noticed that every time she laid across my chest I would have a dizzy spell or vertigo. One day mom came in my room and I was having a seizure. Pookie was laying against my back and keeping me on my side. Pookie had no training. It is something she started doing no her own.

Service  Dogs for Epileptics are dogs that have been trained to assist people with epilepsy. They are trained to alert their handlers, protect their handler’s from bodily harm, emotional support, and get help if needed. Having a service dog can also give the handler confidence to go places without a guardian or such. That freedom can help them become more active in the workforce and social gatherings. These dogs changes a person’s quality of life.

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Epilepsy Awareness Day 3: Types

Unlike the media would have you believe, seizures come in a variety of visuals and lengths. There are about 40 types of seizures. And it is not uncommon for a person to experience more then one type of seizure if they have frequent attacks. The image above explains the basics of the different types of epilepsy. The is a difference between epilepsy and seizures. Epilepsy is a condition where the patient experiences several seizures because their is something wrong in the brain. A seizure is what happens to the body during the episode. So if a person has a head injury and experiences one seizure, they don’t have epilepsy. But if the brain was damaged and the person keeps having seizures then the person has epilepsy.

I had my first seizure when I was 19. A genetic defect. I am diagnosed was partial complex epilepsy several years after my first attack. I went several years having frequent seizures. I had an atypical start so it made it difficult to diagnose? I think it had to do with my pain. I had my first seizure on the same day I had my first migraine.

What I do: Usually, my arm with tremble and I start to act a little weird. I will make weird decisions. Then I wonder around, fiddle with my clothes, and mumble. Then my body will get stiff, I’ll fall down, and start shacking. Not like on TV. I start shivering all over my body and now and then a limb will jerk. Sometimes I will stop breathing. After a few minutes I’ll stop and then few minutes latter come to. I will not remember what happened that day and sometimes the night before.

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Epilepsy Awareness Day 2: First Aid

First aid for seizures is not common sense. It is not fair to assume that people know what to do when a person has a seizure. In my experience a person’s first reaction to a seizure is fear and panic. Its because people are uneducated.

To make things even more confusing, different types of seizures require different types of first aid. If a person falls down and convulses they need different treatment then someone who is wondering around or staring out into space.

This image does a good job outlining basic first aid for both. There are two things I would add. First, if the person doesn’t wake up within a few minutes after they are done jerking call an ambulance. It is not something you sleep off immediately. Second, all seizures have one thing in common, when one first comes out of it the person is in a haze. If the person does not regain cognitive abilities they need to go to the hospital. There is a series of questions to ask to test that. Waite a few minutes and then ask:

  1. What is your name?
  2. Do you know where you are? (Where are you)
  3. What is 2+3
  4. Who is the president?
  5. How many fingers am I holding up?

EMTs will wait a few minutes and ask the question again if you get a question or two close or wrong. Like I usually say my name is Josh, which is close because it is my brother’s name. If you fail the test EMTs rush you to the hospital. That is why I would recommend adding this to the list.

A unique part of seizure first aid is to be careful not to hurt yourself. Do not help someone fall unless the person is going to fall on something bad. Usually the fall is not what hurts the other person, but it will hurt you. Be mindful of the epileptic’s arms and legs, always sit behind the person. If you get kicked or punched its going to hurt. Do not stick your fingers in the person’s mouth, it could get bit off.

what-to-do

 

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Epilepsy Awareness Month

November is Epilepsy Awareness Month. I could not find a blog challenge, I find this aggravating. I have decided to make one up as we go.

I have a folder of memes aaae8ddf6f91768ab39283fc9db4c2cd7nd pictures about being being sick. I am going to use one of those everyday to inspire something that spreads awareness about epilepsy or my experience as an epileptic person.

I have hazel green eyes.

 

 

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Epilepsy Awareness: Day 1

November first is All Saints Day. As a Protestant, we celebrate All Saints Day by remembering those who have past away who were strong in their faith and celebrate those around us who have strong faith that encourages and helps those around them. But Catholics are must more selective.  There are 40 saints for epilepsy and two that had epilepsy (http://catholicsaints.info/patrons-against-epilepsy/http://catholicsaints.info/patrons-against-epilepsy/). How do you choose a Saint to pray to? I have no idea, but most choose St. Valentine (https://www.epilepsy.org.uk/about/st-valentine-epilepsy-patron-saints). He was known for miraculous healing of all sorts and epilepsy was top of the list. 5a606ba2d2329a74ea3ffc1007eb389e

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Invisible Disabilities Week

Invisible-Disabilities-Week-2017-October-15-thru-21-2017-1024x1024

The theme this week is “Invisible No More.” I have been thinking about it off and on all week. I hope it is just because of the souring pain levels, but I have not thought of an uplifting idea of how to make migraines and epilepsy visible. I could revamp my wardrobe? Wear themed jewelry?  I don’t know if I want to loose compete control over who knows and who doesn’t know. On some days dealing with the stigmas are very hard to keep civil, like days I’m falling and someone saying I shouldn’t drink during the day…

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Join the #MakeItVisable Movement

The Pain Foundation has teamed up with Healthline to bring awareness to invisible illnesses and conditions. Hear is how to participate:

  1. Share a photo or video that makes your condition visible on Instagram with the hashtag #MakeItVisable
  2. Healthline is donating 5$ to the US Pain Foundation for every submission.

The campaign last through the month of October.

https://www.uspainfoundation.org/news/makeitvisible/https://www.makeitvisiblecampaign.com/

 

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Medical Marijuana: Smokes

Marijuana smoke is the only danger to one’s health that I’ve come across. The best way  to avoid this harmful side effect is to eat magic brownies.

Have you ever thought about what your actually doing while smoking? You are lighting plant matter and paper on fire. Then you hold the fire close to you and stick it right in front of your face. You are also inhaling solid and liquid particulates and a list of harmful gasses from the paper and plant as you bask in the smoke cloud.

Marijuana smoke poses the same health risks as tobacco smoke, a forest fire, any smoke.

First hand marijuana smoke has been found to cause damage to the respiratory system. It can cause things like bronchitis and respiratory infections. Second hand smoke exposure can be harmful to the blood vessels.

The marijuana smoke contains chemicals that can lead to cancer but no long term research has been done yet.

https://teens.drugabuse.gov/blog/post/secondhand-marijuana-smokehttps://teens.drugabuse.gov/blog/post/secondhand-marijuana-smoke

http://onlinelibrary.wiley.com/doi/10.1111/resp.12298/full

http://herb.co/2017/04/20/weed-smoke-vs-cigarette-smoke/

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I Hate Pissing Contests

I went to a family reunion this weekend. We always go a day early so we have time to spend with my Great Aunt. One of my cousins is a drama queen. This time she was milking for sympathy because she was diagnosed with chronic migraines. She had her first in April and was diagnosed shortly afterword. We had a short dialogue about her first migraine, her doctor, and medicine. Most everything made me think, wait what? I told her it takes patience, cooperation with her doctor and faith in her medical team. She reminded me that she actually has a life, a kid, a job, still in her 20s and I don’t have any of those things.

I staring at this girl in amazement. I couldn’t find a shred of sympathy or compassion. That made me question myself. I know what its like to be blinded by the pain and my migraines last for several days. I know her pain. I remember how hard it was when it first started in my 20s. I thought I should feel sympathy, logically it is the correct emotional response, but I didn’t. I pitted her lack of understanding and was disgusted by her attitude.

I figured it out. She wanted compassion from me while trying to one me up and hurt my feelings. She wasn’t asking me about migraines or coping at all. She told a story about her last ER visit, she stared at me. My last ER story was 10x better, I could have also pointed out why she was treated so horribly. I didn’t say anything. Her last doctor appointment. I didn’t say a thing. Her job. Silence. She was aggravated. Yup, this was definitely a pissing contest. She was baiting me and showing off. I was pissed.

I believe that these pissing contests are toxic. I don’t like it when someone tells me I have it worse off or someone has it worse off then me or at least its not cancer. We shouldn’t get stuck on who has it better or worse off. We shouldn’t compare suffering. When we do we loose chances. We can learn from each other, confide in each other, be friends or mentors. We can’t be those things if we are stuck in a pissing match.

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