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Thank you so much for sharing your experiences and tips. Hugs to you! I’m just learning about what’s happening after 6 episodes in the last year.

I wish my voice had this power. I really like this, it's very expressive. Thank you for sharing.

aw. well done for posting this. many many people can relate! hope youre ok 👍

YOU are an amazing young lady. I’m 61 and my hypothyroidism after 25 years went nuts a couple years ago. I have body temps that have gone as low as 92.9 when I’m having an episode. No official diagnosis but my cardiologist believes my symptoms and believes hypothyroidism plays a role. About 35% of Dysautonomia patients have hypothyroidism. So many squirrly symptoms, painful and what I call mentally and emotionally disturbing. I believe I have a form of Dysautonomia and I can’t tell you how many doctors in the ED have said to me “you look fine”. Makes a person want to scream. Wishing you, and all of us dealing with this, the very best.

I feel bad for you, but sometimes we can’t control sound. Usually you know like on often times when there’s thunderstorms, the thunder can be pretty loud, but I know how you are.

Do you feel like your diaphragm shuts down when you have these episodes? Like do you stop breathing?

I think I have Asperger’s or soem form of autism, should get tested first. But I feel like I have a lot of those symptoms that come with it

My daughter just had this happen immediately after routine bloodwork. She fainted once before but this time we went to ER bc she had seizure-like convulsions. She has no other health issues and has never fainted except one other time when blood as drawn. But she is on accutane and I’m wondering if that has anything to do with it

I need to know if anyone else with autism sees faces- when you look at people do their faces look distorted, I guess. I feel like, because I rarely make eye contact- maybe that’s why sometimes faces look terrifying. Anyone else deal with this?

Hey, thanks for sharing this. I have been diagnosed with ADHD since I was a kid and now I'm almost 22 and trying to figure out if I have ASD. I think sometimes I can get sensory overload too, but maybe not to this extent and I think maybe in some different ways. I can definitely shut down and not be able to think or function when I get too overloaded with things, that's for sure. My boss at work has evenbtold me she notices this. And there are certain things that are especially uncomfortable and difficult for me, like doing dishes. Also when it is really loud in the living room it often pushes me to go to my room where it's quiet cuz I just get so uncomfortable and anxious and aaaaaa. I'm also prone to getting understimulated as well, but I think that comes more from the ADHD. It's hard for me to know for sure things, proably shows I may have some alexithymia like youbwere gonna talk about. XD Again, thankyou so much for sharing this, it was definitely very informative even if it wasn't what you planned. I feel like I can imagine what your feeling in this at least to an extent. I hope you are doing well and well regulated. ♡

Lol is there planned sensory overload?

They got rid of the term Asperger now autism is defined by levels autism is commonly paired with intellectual disability, but not always.

i would love to see a locomotive park next to this persons house for 5 years

delete person

Sometimes i feel like my head is shrinking so its smaller than the sound

Antidepressants have really helped me. I would get so mad and triggered at everything that disrupted my thoughts and my speech. I feel like the Zoloft dampens the sensory and trigger overload.

A skull full of hornets who are trapped inside and stinging over and over trying to escape.

I have described it many times as bees in my head or being stabbed. I sat up straighter when you said that tbh.

This caused me so much anxiety and immediately made me cry. Thank you for sharing; it hits differently when it's unscripted.

Thank you for sharing this video. Now I don't feel so alone when it comes to being agitated with the sound of air conditioners. I am undiagnosed and started learning different terms of Autism and starting to see that I've suffered from a lot of the symptoms from early childhood that non of the adults put two and two together on. It really affects my relationships living with people because I can't be around other peoples noises. Their TV's, their music, loud traffic, etc. I let my agitation build up for months or years and then eventually I snap and I have to start going to the bookstore (which gets too stimulating too with the music, etc.) and now I found that libraries are way better reserving private rooms where doors can be shut and away from other peoples noise. Even birds started getting too noisy. I love nature but a lot of the nature areas I live by are literally located near highways and the sound of that is a disaster. I am literally on the verge of leaving a partner and moving into my own place again because I can't handle all the stimulus that comes with it. I just don't want to be home anymore and I don't think anyone will ever understand how dire it is for me to have complete silence for most of the time. I don't mind people coming around me if I have my own stuff going like TV, Music, etc but I have different tastes than others and they usually don't like my version of media. Anyway, again, thank you so much for pointing this out. I have a clinic I will be contacting so that I can get an evaluation done and confirm what my problem really is and go from there.

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.

Thank you so much for posting this video. Yesterday I went to get a routine blood draw, and while I have had incidents in the past with passing out, this one was severe. Not only did the tunnel vision and walls close in, and I passed out and had rather violent convulsions, which I was semi conscious during…but apparently, when I came to I was violent and combative to the point that I legit scared one of the nurses. This was one of the worst experiences of my life because I don’t remember any of the combativeness

That bee analogy, wow, so relatable.

"If I cover my ears I can't tell when it's gone, though". RIGHT!!!

I appreciate you and your dedication to sharing knowledge . It's amazing!!! Deepest Gratitude to you!! You're a Warrior!!💃🙌

God, you are so right about people thinking we're nuts. Thank God I have a team that takes care of me, although I'm hospitalized a lot.

Sorry you got ass burgers, I know there a difficulty

tysm for sharing this, been through the same thing and feel soo much better knowing it is not just me

Wow....Your voice is amazing. I am not into casual platitudes, so please know that I am sincere. Thank you so much for sharing. Kind regards ~

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. ~~ (I make no comment on bedside manner, solely treatment protocol).

U doing better?

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.

More please

A FB tv he’s

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 feel like my body is buzzy and rushy and u said bees in your head.. I feel like bees everywhere too.. and I really have a terrible headache and eyes hurt a lot .. I also lose speech when I have too much to process; if I had a convo for too long I start to shut down cos it’s too much processing in a conversation.. figuring out all the words, meanings behind words, body language.. other things like sounds and distractions and my own thoughts and making words and feeling the world around me (sensory) and we are Severely sensitive to all of that!

Thank you for bravery! Noise was so bad, that I even made sound lower. But video really helped to understand my own feelings.

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!!

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!

My sensory is more visual but once the visual takes over then I can't stand sounds. Usually that is the order but not always. I literally got tears of eyes I felt I know what you're going through.

Thank for sharing. My 22 yr old daughter has been diagnoses with Vasovagal Syncope. First time was September 22, 21. We have seen SEVERAL cardiologists who says oh she need a pacemaker but no one is willing to give her one. The last cardiologist she seen made a referral to the Cleveland Clinic. They have her coming in May and in the mean time I have to watch my daughter go through having non-epilepic syncope seizures. There is a SERIOUS problem in today Healthcare system and once we can get my daughter on the a healthy track her story will be shared I will see to that nation wide. This is not right when Dr's don't know what they are dealing with in patient like this. I'm so glad I know my daughter is not the ONLY one going through this. May we rise up in numbers to bring awareness and to get push for Dr's to GET AN EDUCATION

Thank you, Aubrey. I think we finally have some answers for our 14yr old who started experiencing this just last June. She was finally diagnose last Nov. with Convulsive Syncope but with an unknown etiology but not POTS because all her tests, labs, imaging were negative.

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

This about the air conditioner makes me think about something weird I happened to pick up on maybe 2 or 3 years back. That I didn't want to pour or drink water while it was on. Mainly at night. I can't tell you why, it's just the way it is. Found this helpful.

I'm 68 and was FINALLY diagnosed 14 months ago. Mine is secondary to Sjogrens Syndrome which I've had since birth apparently. My daughter has MCAS. It's decimated my nervous system. It's nearly killed me more than once from low BP with low heart rate and struggling to breathe for which my body has no mechanism to compensate. It's going to kill me eventually as it's progressive but as you say getting the diagnosis after being misdiagnosed with other things neurological it wasn't til I had an autoimmune panel done that we saw the Sjogrens, which explains why. It attacks healthy cells. Pain so horrible it once gave me a tukosabo heart attack from excess adrenalin for too long from pain. I was on opiates from pain clinic for 12 years for central pain syndrome. Now I'm on medical and tramadol for pain, Neurontin & Cymbalta for nerve pain and a host of other 💊. Don't want yo make this long but I'll just say keep it up. Your video was very informative. One more thing. We ARE the toughest people around. My BP was so low all my life that I've had fainting or near fainting episodes since my teens. I didn't even know how to complain about it right as a kid. I spent 2 summers in a hospital for crippled kids that's how early my nervous system started degenerating. I've been falling since I started walking and haven't stopped. My nerves can't communicate with my muscles well, esp my legs. Doctors, educate thyselves!!! I did not have to suffer like I have all my life. You keep doing what you're doing. Its vitall sufferers find out early. FYI I also have 2 college degrees, worked as a nurse 20 years followed by freelance book editor. I went back to school for a 4 yr degree when I realized my body couldn't do nursing any longer. I raised 4 children, travelled, married & divorced 3 husband's and have been chaste for 12 yrs now by choice. Life is too complicated now. I've also lived a lot so yeah we are very tough.

Really moving - you have a real talent,love Southampton, England x Ps have really enjoyed your videos ,they are really interesting ,hope you make some more

I have 100% the excact sympthoms as you have and I have wondered if this is related to epilepsy. Have you shown this to a proffesional that video or tried provoking it with eeg on your head? + if you have any other symptoms like a strong reaction to textures.

No one cars. Ye I said cars, fuck you

Do noises exist you like or tolerate? F E, your own voice is OK, but no foreign voice? How about the wind? Raindrops?

I don't actually believe that all these people actually have autism. There is so much fake crap on TH-cam I don't see how this would be any different.