Posts tagged: dysautonomia
The mystery of how I got to my bed has been answered. I can always count on my deoxygenated brain to find I way to record a video.
Invisible Illness Week’s - 30 things
1. The illness I live with is: Dysautonomia, neurocardiogenic syncope
2. I was diagnosed with it in the year: 2011 with NCS and dysautonomia in late 2012
3. But I’ve had symptoms since: I’ve always felt physically strange since I was a kid. But the illness got worse early 2010
4. The biggest adjustment I’ve had to make: Not being a full time student and or having to take off school. Not being able to drive most of the time due to randomly fainting. Not being able to work
5. Most people assume: I’m being over dramatic. That it’s all just anxiety or depression
6. The hardest part about mornings are: Getting out of bed slowly enough so I don’t faint. Trying to get to my beta blocker when my legs are weak and my heart is racing.
7. My favorite medical TV show is : Monsters Inside Me
8. A gadget I can’t live without is: iPod Touch
9. The hardest part about nights are: Constant insomnia and the fact that I’m pretty much tolerant to every sedative known to man (except weed but I run out of that all the time). Chronic neck pain. Restless legs and body. Racing heart and pounding headache.
10. Each day I take : Atenolol, Lexapro, Reclipsen, Klonopin
11. Regarding alternative treatments: Weed and ASMR
12. If I had to choose between an invisible illness or visible I would choose: Visible. Just so I feel people will take me more seriously and not pin it all on my bipolar and anxiety. I’m anxious all the time because I most of the time have absolutely no idea when I’m going to faint. Who wouldn’t be out of their fucking mind?
13. Regarding work and career: Had to medically withdraw from school. Working seems to be out of the question unless the job requires me to sit most of the day
14. People would be surprised to know: I can’t work out because it causes me to faint. Even a brisk walk on a treadmill. I fainted during my stress test. That is medically documented so I’m not making this shit up.
15. The hardest thing to accept about my new reality has been: How isolating this illness is. I miss my friends dearly but the unpredictability of my illness makes me unable to go out and see them. I’ve become so weak that I can’t spend as much time with my family because I need more sleep to be even able to wake up and function somewhat. I can function normal only about five hours per day, after that I have to find a bed and rest. My life has come to a standstill. All my friends are graduating college and studying abroad and I’m stuck in my house all day.
16. Something I never thought I could do with my illness that I did was: Be my own advocate.
17. The commercials about my illness: Don’t even exist.
18. Some things I really miss doing since I was diagnosed are: My friends. Being able to sprint down the beach. Working out, skiing, horseback riding, hiking, exploring the forest, going outside and taking photos.
19: But it was hardest to give up: School and my social life. Working out.
20: A new hobby I have taken up since my diagnosis is: Tumblr, reading, long hours of video gaming.
21: If I could have one day of feeling normal again I would: Have a full day with all my friends and family.
22. My illness has taught me: Time goes by fast.
23. Want to know a secret: I think about getting high all the time to escape this reality.
24. But I love it when people: Take my illness seriously. Realizing that I’m not at fault for this problem.
25. My favorite motto, scripture, quote that gets me through tough times is: “Children sing the church choir at the newly built church. When ever I walk past it, my heart screams. There’s no forgetting the Past, the Present, or the Future. Will only the believers be led to salvation? That’s stupid. Why can’t we be perfect? Why can’t it be?”-Dir en grey
26. When someone is diagnosed I’d like to tell them: Be your own advocate. Don’t let a doctor make you feel like you are crazy or that it’s your fault. Do as much research as possible and talk to others with your illness.
27. Something that has surprised me about living with an illness is: The strange things that can trigger it.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom always has my back. She’ll get me water and salty food when I’m unable to get up. She takes my illness seriously.
29. I’m involved with Invisible Illness Week because: Because people like us need a voice.
30. The fact that you read this makes me feel: Like more people care.
Fuck my dysautonomia and my over sensitivity to drugs.
A rare smile from me. I avoid smiling as of late because I don’t like the fact that the left facial nerve isn’t at 100 percent. I’ve only met one other person on Reddit who has this problem because of their dysautonomia. For some reason when I get syncope attacks, the left side of my face droops. The more severe the attack, the more my facial nerve is effected. My doctor said that because my dysautonomia is related with my nervous system and vagus nerve, that my facial nerve can be effected too. The problem isn’t getting better like the doctor said though. I just hope my facial nerve will not be permanently damaged from the repeated attacks.
Things accomplished tonight:
Went to therapist at 7:30
Fainted in the kitchen and fell on my fucking face
Upon falling on my face I didn’t break my glasses
Laid on the floor waiting for my mom to serve me mac and cheese
Ate said mac and cheese on the floor
Syncope: Greatest Hits (On the floor)
There’s a year waiting list to see Dr. Grubb. Looks like I have wait longer to figure out what’s causing my dysautonomia.
I hate when I randomly get a heart palpitation. It feels like somebody is squeezing your chest and all the air gets forced out. Almost passed out from it. It’s also scary because for a slight second you think you are about to die, then it passes and this hot flush comes over.
So I got a gas cramp…usually I just let out a fart but something different happened this time. As some of my followers know I have a condition called neurocardiogenic syncope which is triggered by my vagus nerve and low blood pressure. Most of the time it’s because I get up too fast or I’ll have a week of low blood pressure were I have to rest. But sometimes I’ll have freak events like fainting triggered by sneezing or coughing or laughing too hard. This evening was probably one of the most embarrassing and unusual causes of my syncope. I was sitting in the den with my mother watching TV when I felt a gas cramp come on. When I went to fart it felt like somebody punched me in the stomach. I looked over at my mom and she said the my lips were pale. Last thing I remember. Aparently my head flopped over and I passed out. That being punched in the stomach feeling was the second branch of my vagus nerve being triggered.
Son of a bitch, this is not how I want to start my week.
I’m tired of people of telling me to get active when they don’t understand how hard it is to exercise when you’re constantly fighting passing out due to low blood pressure. Hey assholes! Your blood pressure regulates itself like it’s suppose to. I have a medical condition where my body sucks at it. I take a pill the sort of controls my blood pressure and the rest is crossing my fingers hoping I don’t pass out.
Laying on the kitchen floor eating pickles cause my blood pressure is too low. It’s been awhile since it’s hit me that hard lol
Do I have to wear a fucking g-suit to keep my blood pressure up?
Anyone with dysautonomia/POTS/NCS developed at severe intolerance to coffee and stimulants? Before I presented with NCS I could drink up to three cups of coffee a day and feel fine. I recently had half a cup of coffee and it made me break out in a profuse sweat, it made me have whole body tremors, and made me so nauseated that I threw up. It lasted the whole day.