What is Autonomic Dysreflexia and how does it affect spinal cord injury?
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- čas přidán 12. 09. 2024
- This is an informative video about Autonomic Dysreflexia (AD) which is a condition that affects anyone who has a spinal cord injury T6 level and above.
**This is a very serious condition and should not be taken lightly.
- For physicians or anyone wanting more information please visit - www.livetoroll.org/ADinfo
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The pressure in my head that I've had from Autonomic Dysreflexia is literally the worst pain I've ever felt. A few months after coming home from the hospital I had AD for almost a month. At the time, I had never experienced AD so I didn't know what it was. I went to the Emergency Room and they told me it was something else and would go away but it didn't. I would have the AD, urinate, and then it would go away but would come back in 30 minutes. Eventually, a nurse knew what the issue was and said that my bladder was not expanding whenever it would get full. They prescribed me the wrong medication, which was for older people that had trouble urinating. The prescription was then changed to Oxybutynin and now I take Myrbetriq, which is way better in my opinion.
Hey Mason sorry for the late reply.. I was at the Abilities expo then traveling for rugby last weekend. That sucks that they mixed up your meds and triggered AD but great a nurse actually figured it out. I think at least 75% of AD is bladder or bowel related. I actually take both oxybutin and myrbetriq which I think has been working well for me. Hope you don't have any issues with it anytime soon but if you want some of the cards I made let me know and I'll get some sent out to you.
Yep just had Botox in my bladder helps a little bit but I still AD when my bladder fills thinking of getting a super pubic getting tired of the constant time spent straight cathing
If you want to join the live stream today and ask catheter questions in the chat I'll be sure to answer as best I can.
Oh! Whats with the cliff hanger? What was up? Dude, I've followed you for sometime now and I must say unequivocally this was by far the best video you've done! Get in touch with some official organization and get that card made into a medical alert standard piece of official SCI ID!!!
GREAT IDEA SEAN!! This is exactly the type of shit that needs to be broadcasted instead of most of the crap even I do...... You Killed It!
Thanks dude! I really appreciate that! I would love for a big organization to get these out to everyone that needs one or turn it into an official SCI ID on a medical alert ID or something.
And the big cliffhanger is I had bladder stones and a really bad UTI.. Not super exciting lol
@@LiveToRoll Still sitting on you AQ t-shirt! Get me ur nu address and its yours.
The Christopher Reeve Foundation has wallet cards for AD, but I don't know how they are supposed to fit in a wallet. www.christopherreeve.org/living-with-paralysis/free-resources-and-downloads/wallet-cards#free-wallet-cards-with-vital-information
its truly amazing how many 'medical professionals' have never heard of it, or just nod, and pretend to understand when ya mention it. ya REALLY have to be proactive with AD! i carry around little pamphlets to give to people when i have to go to ER, or have other procedures done etc.. i cant fault them for not knowing about it - BUT its super important to make sure everyone on your care team knows about it, and how to respond when the first signs appear! for me, the first symptom is sweat on my brow - i cant sweat at all normally - and all my friends know if they see that happening - to stop and check everything out. most of the time my friends notice it before i do LOL everyone's is different - but for me, it starts with sweating, then i get confused, then headache / blurry vision - and when it gets really bad.. SPASMS.. like BAD! I also carry around emergency meds now and make sure they're on me at all times! this can escalate FAST! i almost wanna get a tattoo on my chest with the reeves foundation AD website address on it hah! thanks for the video man!!
*edit* i was typing this while watching the video and got to the part about your pamphlets lol
after having a really bad incident with this once in the ICU - i went back and they actually had me talk at their next staff meeting about AD to make SURE at least some people hear about it!
Yeah dude it's crazy good little most hospital staff knows. That's really cool They had you come to a staff meeting to help out the people that work at the hospital. I wish everybody was as on top of it as you are and your friends seem to be, my friends are the same way most of them can tell when I look like something is wrong. I'm glad to hear you have meds and a plan for AD emergencies. Email me and I'll see if I can send you a stack of the cards to give to people in your community.
@@LiveToRoll yea for sure! email incoming!!
Hey thanks for doing your channel I watch it all the time very informative and entertaining I’ve been able to fix a lot of crap after watching your videos! Keep up the good work!
Thanks dude! I'm really glad the videos have been able to help a little. Sorry you're still dealing with the AD but hopefully you can get that worked out soon. 👊
Thanks for made this video Shawn 👍🏼 hope you're having a great days today
Thank you for this great info. You are right, doctors know nothing about AD, even if you explain them ! I had that crazy experience too. Hope the card might help.
Yeah I've had a lot of bad experiences myself and talked to way too many people lately that have had the same thing happen. I don't know if the cards will help but I truly hope they can.
My friend Felix was sick, he thought he had the flu but he didn't have a fever. When I got back from out of town 3 days later, I noticed his foot and ankle were swollen and sort of purple. His Ankle was fractured and he had no clue when he had hurt it.
C-7 complete here. I usually deal with Autonomic Dysreflexia everytime I have a bad case of UTI. My spasms just go haywire and I get all dizzy & confused and my blood pressure always drops so I have to have both of my legs raised up in a 90°angle (95°angle in a worst case) right away before I start to faint. It then usually subsides after an hour or two. Regarding those sudden goosebumps and body hair standing, I get them most of the time when a tiny pressure sore(s) appears and in a couple of cases, when my lower body was actually being attacked by red ants! The first time it happened, I was awakened by a sudden weird goosebump attack when that first happened. Then I noticed around several ants crawling on my bed and right arm. It was a good thing my Dad was here so I asked him to check the lower parts of my body if there were any cuts or sores and that's when he found out that were around at least a hundred plus of little red ants chomping down on me. After he took care of all the ants and their trail in a genocidal manner, parts of my legs and ass were left with blisters & cuts. The second time it happened didn't last long 'cause my therapist took care of the ants right away after she came back from the kitchen. Crazy experience. Thanks again on a very informative video and always be in the best of health, man. 🖒
Yeah UTI's are a big trigger but it's weird how we all have different ways our bodies respond and how one thing will do something to a person but have another affect someone else like dropping your blood pressure. I've met several others that are the same as you but mine goes way up. And I've actually been attacked by ants twice but they weren't red ants.. Just regular black ants and but they bit the crap out of me lol.
@@LiveToRoll: I used to think that all of us SCI folks' blood pressures drop when experiencing spasm attacks but when you told us about yours going up I was kinda surprised. That is pretty scary since there might be a chance of having a cardiac arrest or heart attack. I could say that we are blessed to have medical establishments nearby to go to just in case a serious health problem like that comes up. Damn them ants. They just don't have any respect for anything except insecticide. 😂
I deal with this everyday. It's starting to get old. I'm getting tired of the constant struggle. Anxiety, pain,depression is killing me.
Sorry to hear that bro.. I hope things get better for you. Depression can be really hard to deal with without a SCI so I hope you can get help. Where are you located?
Ben Tipton did you think about this: link.springer.com/chapter/10.1007/978-94-017-7509-0_36
The AD will disappear.
@@apocallypto that wouldn't help me. I don't have that issue. But thanks.
@@LiveToRoll Alabama.
@@LiveToRoll 4 years & 2 surgeries later & now autonomic dysreflexia only bothers me when I need to use restroom & or if I'm hurting somewhere. Life is better. LIVE TO ROLL! FIST 👊 BUMP!!
thx so much for educating us!
Greetings and great video! Very informative 😉
Did you made it on your own that card info ? It's really handy good iniciative
Yes I made the cards myself to give out to people that need them 👍
Thanks 👌🏼😎♿
where can I get the AD card?
Email me your address and I'll send you some cards.. shawn@livetoroll.org
thank you for the video
You're welcome, thanks for supporting us as a free community resource by watching. :)