ER Trip for Dysautonomia Flare | Convulsive Syncope caught on Camera
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- เผยแพร่เมื่อ 19 ก.ย. 2024
- Intro Ends at 6:00 ! May is Ehlers Danlos Syndrome awareness month. Dysautonomia is a common comorbid condition for people with Ehlers Danlos.
Related Videos:
• What is Dysautonomia? : • What is Dysautonomia?
• Convulsive Syncope Vs. Seizures | My experience : • Convulsive Syncope vs ...
Postural orthostatic tachycardia syndrome (POTS) is a condition characterized by too little blood returning to the heart when moving from a lying down to a standing up position (orthostatic intolerance). Orthostatic Intolerance causes lightheadedness or fainting that can be eased by lying back down.
LINKS:
Dysautonomia International: www.dysautonomi...
page.php?ID=34
POTS: myheart.net/po...
Ehlers Danlos Syndrome(s): www.ehlers-dan...
Mass Cell Activation Syndrome: www.mastcellac...
Note: I have currently not been diagnosed with this. I am undergoing testing. Unfortunately, diagnosis is complicated, so it might take a while to know if this is something I have or do not have. However, I have been having many random allergic reactions that trigger my POTS. MCAS is commonly found in POTS and EDS patients. Sometimes called “the trio.” MCAS, POTS, and EDS. Because having one chronic illness isn’t enough, right? 🙄😂
OMG it's exactly what I do! I've been telling the docs for 5 years, since day 1: THIS IS POSTURAL. I was diagnosed w POTS in 1996 at age 19. It was treated and, as predicted, went into remission until menopause, and now it's flaring like mad again. I've been to every frigging specialist you can think of and have been told all these years, "It's all in your head." Hooooly cow, finally! Omg I'm crying! It kills me that anyone else deals with it. I'm so sorry. Thank you for posting this!
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
There isn't much content on "convulsive syncope" or non epileptic seizures, so thank you for posting. I've suffered from these for 8 years. My father is a trauma surgeon too, so the gaslighting for years has been really traumatizing.
I was just diagnosed with POTS on my 8th year of suffering. I recently confirmed a dysautonomia diagnosis with a specialist as well. I've caught my episodes on camera too and will have to post. Sometimes they last for hours. I never knew what was setting them off. I have a feeling when our blood volume or electrolytes crash our pupils stop constricting with light. Blood pressure regulation stops as well and our bodies try to jerk or spasm our system back into functioning. So light or movement can trigger more spasms if we are already crashing. I can't speak sometimes during my episodes when they are bad and I cry. I'm fully aware what's going on, but can't operate my body like I want to or communicate. The spasms hurt too. Its like doing 1000s of weighted sit-ups in a min. I usually get aura migraines the day before or day of these, so I know before they happen that I might be in trouble. This happened once at a big family event and I had to hide in a bathroom stall while the episode passed.
It can be lonely going through this journey towards sustained health especially when so many Dr's aren't helpful. Please keep sharing updates on your journey. Hope you are doing better today!!
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
Thank you for posting!!!!! This gave me a reference in that I was unconscious throughout my 15 minute episode. After describing what the EMTs witnessed, I was told by a neurologist that he had felt I had experienced convulsive syncope.
Kristina Ofcakencoffeepls I’m so glad I could help!
Just an FYI, before they were treated they would get much more intense than this and would sometimes look like a full on grand mal seizure, and sometimes it is very mild. So convulsive syncope can range a lot in intensity for me! I still occasionally get it but it is much more mild than the grand mal seizure looking ones from almost 2 years ago! Again I’m glad I could help! 💓
Thank you so much for sharing. I first started with 'TIA' symptoms. With in a year, I started doing seizures. Some like yours, some just full body craziness. I remember it all, and can even talk some through my teeth during them. The most my Neurologists can say, is that it isn't epilepsy so it must be linked to my dysautonomia. Especially since they tried all the seizure meds, and I am allergic to them. Gotta love MCAS. People just don't realize there is a link. We need more people like you telling their story. Raising awareness.
A quick question: Do you feel them coming on (I do)? and Do you end up having a bad headache afterwards?
Thank you so much! And I sort of feel them coming on yes. They happen when I start to pass out sitting up or laying down.
Thank you so much for sharing! I have POTs as well and have always said I'm one of the fortunate who doesn't pass out, but then I got to wondering what "fainting" or "passing out" was like for others and I found your video. I get exactly like this when I'm flared up badly. I had no idea it was a form of syncope! I'm going to bring it up with my Dr next time I visit. Thanks again for sharing!
Thank you for sharing this. I have recently been diagnosed with POTS and I’m still waiting to be seen at the autonomic nervous system clinic here in Boston. I started getting this kind of intense shaking two weeks ago, and my regular PCP didn’t recognize it as a symptom of POTS, and became concerned I was having a seizure. I tried to explain that it wasn’t really seizure like as I’m awake and aware during it. This video is going to help me explain to the next doctor I see.
My daughter was diagnosed with POTS last year and also suffers from convulsive syncope. IV are so valuable during a flare. She has been treated by Dr Blair Grubbs at the University of Toledo Medical Center and the Dysautonomia clinic there. It has been a lot of trying meds and treatment but they have been a wonderful help.
I don’t pass out often with POTS so last time I did it was in public so I ended up in an ambulance and a trip to the er I was in the hospital from like 8am to 3 pm the next day they gave me continuous IV it helped so much I still felt crumby but the iv and Zoloft helped so much apparently my blood pressure wouldn’t go up and heart rate didn’t go down
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They do now have a specific drug therapy for dysautonomia They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. I also have Ehlors-Danlos. They now believe dysautonomia is connected to auto immune. Sadly, we are still the Guinea Pigs, but they’ve made incredible strides.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
I just started having the same thing. I was diagnosed with Dysautonomia in December 2017. My recent ones are more convulsive than previously. I ended up getting diagnosed with non epileptic seizures in may. This is due to speech loss too.
Just had one for the first time last night and it was the most scariest thing I've experienced, mine just happened while I was standing in my kitchen and I just fell back everything went black, and than i started to just look around and I was so slow could barely speak I would say 1-2 words and than just breath slowly, I tried to sleep but kept going in and out of consciousness, and just been up since. hopefully I will have a good sleep later
So, if your refusal to have blood drawn - while *simultaneously* stating your preferred/expected course of medical/infusion care - was the context in which the first doctor stated that you were putting him in a bad position - he was correct and you were.
You may have already had draws that week - but his treatment must not be based on the work of other facilities, or from other moments in time.
I'm surprised that you didn't reflect on how medically critical it would be that they have a snapshot of your current hydration, magnesium, sodium, potassium (and other electrolyte) levels before just administering the potassium infusion that you requested. Then, if infusion *_were_* indicated, the data gathered would inform precise calculations to determine the concentration and speed of delivery for that very vital/lethal mineral. You were apparently having cardiac symptoms, and were presenting with convulsions. Too much or too little, could result in an acute cardiac event, or death.
Add to these facts that, for instance: magnesium is needed to help your cells access potassium and calcium. So, even if you were hypokalemic - if you *also* had low magnesium - a hospital negligently agreeing to infuse you with potassium at your word would be, at the least, ineffective.
In addition, electrolyte imbalance can also be a sign of, for example: kidney dysfunction, so the ER doctor would likely want to look at that - especially if you are communicating that this is a recurring situation, and it is increasing in frequency and severity.
Then, there is the obvious need to exclude any other substances, alcohol, and check to see if you are pregnant.
I understand wanting to cut to the chase, especially when you've been through this before - but holding up a desired outcome by refusing the trite inconvenience or discomfort of one more stick was not the most effective approach. Also, consider the fact that by not relying solely on patient's oral history, or *even* another physician's conclusion - overlooked or co-occurring conditions may be identified.
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(I make no comment on bedside manner, solely treatment protocol).
Thanks for this. I have Scleroderma, MCAS and VVS with Convulsions. I will shake bad right after passing out but will be shaky for like 10+ minutes afterwards. I don't know why that is, and everyone thinks I'm having Tonic Clonic seizures...I have to explain to them it's a Autonomic issues but... 🤷♀️ I also have a really hard time with Doctors and ER visits.
Not a lot of information on Convulsive Syncope.
What else triggers the convulsions? Are they triggered by cold air?
I have POTS and convulsive episodes which my cardiologist thought were TIAs, but now I wonder if they are from POTS instead.
Mine have been triggered by cold air, lights, eating, pain, and stress.
And I also had it coming out of surgery.
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
@@MichiaMakes I'm so sorry about how you were treated. ❤️
Yes all of those can be triggers for me! Also heat, noise, and fragrances or chemical smells plus weather changes
Awww im sorry.
Do you feel like your diaphragm shuts down when you have these episodes? Like do you stop breathing?
I wonder if the extra saline has negative effects
Greg LaPrade IV saline is one of the best treatments for Dysautonomia/ POTs
@@whimsicalaubrey1413 Terrific of you to respond! But are there any negatives to it at all? Any side effects?
Greg LaPrade I’m not certain. Not that I am aware of. Like all things, everyone reacts to things differently. Someone with my same exact conditions might have a bad reaction to it even though it helps me a lot. I do know that probably the majority POTS patients love it. I’m sure there are some people who react to it badly, though.
Greg LaPrade you could think of it as a more direct way of receiving fluids and sodium (two of the most important thing for POTS management.) I use electrolyte drinks that have sodium and potassium and drink about or over 100 oz of water a day. IV is even more efficient at hydration than doing that because it goes directly into my blood stream instead of getting absorbed through my stomach. Some Dysautonomia patients have a hard time keeping anything down, and electrolyte tablets aren’t really an option for some because of the GI upset it can cause. I have a friend like this. She can’t really use electrolyte drinks. For these patients, IV saline is one of their only ways to really get hydrated since their stomachs can not handle it. Giving someone with Dysautonomia fluids directly into their blood stream completely bypasses any stomach issues. The only negative thing I could think of right off the top of my head would be that if the fluids are given at a fast drip rate, it can make us feel bad. Slow drip rates are safer. Sometimes it can cause tremor or temperature changes, also. My body is terrible at regulating temperature , so sometimes the IV will lower my body temp. To me, these are minor side effects in comparison to what I would go through without it. I can’t speak for everyone, though. I hope I answered your questions
@@whimsicalaubrey1413 Thanks, that's a very thorough answer! In the 90's they were saying that everyone took in way too much salt in general. I think they're backing off on that now, though, anyways.