Reacting to GASTROPARESIS TikToks 🤢
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- Опубліковано 10 вер 2024
- Gastroparesis (stomach paralysis) TikToks?! In this video, I react to and review TikTok videos about gastroparesis, or delayed gastric emptying. Gastroparesis (gastro-, "stomach" + -paresis, "partial paralysis") is a stomach condition that's characterized by difficulty and delay in the movement of food out of the stomach and into the small intestine. The normal spontaneous movement of the muscles is somehow disrupted or abnormal, and this can lead to symptoms like nausea, vomiting, bloating, abdominal pain, weight loss, loss of appetite, and many others. While I've mostly recovered from my years with gastroparesis, this disease was by far one of the hardest I dealt with, and I'm passionate about continuing to raise awareness for this medical condition. I also love to bring a little humor into the world of chronic illness. *All gastroparesis TikTokers are linked below!*
🎗 I developed gastroparesis as a result of my hypermobile Ehlers-danlos syndrome (hEDS). If you're interested in learning more, check out this video about my gastroparesis journey: • My Gastroparesis Story...
💊 If you're interested in learning about why my gastroparesis got better, check out this video: • What made my GASTROPAR...
🧬 Reacting to EDS TikToks: • Reacting to Ehlers-Dan...
💓 Reacting to POTS TikToks: • Reacting to POTS TikToks
TIKTOKERS IN THIS VIDEO:
❤️ @ninamariaa4 / ninamariaa4
🧡 @brokeassgymrat / amesthebirdflipper2000
💛 @janaiapeace www.tiktok.com...
💚 @austinchiangmd www.tiktok.com...
💙 @kidsgastrodoc www.tiktok.com...
💜 @stayshasweird www.tiktok.com...
🖤 @gutgalz www.tiktok.com...
SUBSCRIBE TO MY CHANNEL ▶ bit.ly/2M4Ko0c
📸 Instagram ▶ / izzy.kornblau
⏰ TikTok ▶ / izzyk_dna
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
✩ ✩ ✩ ✩ ✩ ✩
WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-dan...
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org...
❤️ cle.clinic/2p1...
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
A gastroenterologist totally dismissed the idea that I had gastroparesis because I am overweight. He flat out told me that EDS does not cause stomach issues and that it was probably just ibs. Then his sanctimonious nurse practitioner handed me a hand out on the diet for gerd and told me to eat less fried food.
This was in the same visit that I told them that I had been unable to tolerate any solid food and had been existing on about 500 calories of a liquid diet for over a month.
This was after a covering doctor at my pcp’s office responded to my statement that I lost 40 pounds in a month and a half by saying “well weight loss is not a bad thing”.
Thankfully my regular pcp came back from her leave of absence not too long after my specialist visit and started to actually help me get back to a livable state. She was the only one who was willing to understand that you can be fat and still have gastroparesis.
oh gosh im so so sorry. It's disgusting how a doctor can dismiss your symptoms based off of your weight. People of any weight can have gastroparesis, and I'm sorry you had to wait for your regular doc to come back and actually LISTEN to you. Weight discrimination is a huge problem in medicine, as I'm sure you know, but I can imagine that when it comes to stomach issues, people are even MORE dismissed and shamed.
Sorry you experienced this. I have hEDS, and have encountered this level of ignorance and negligence from doctors in the past. I highly recommend getting a second opinion from a competent doctor. Here are some handouts of your own to shove in the doctor's face if you're dismissed again:
www.ehlers-danlos.com/2017-eds-classification-non-experts/gastrointestinal-involvement-ehlers-danlos-syndromes/
www.ehlers-danlos.org/information/gastrointestinal-problems-in-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/
I’m so sorry, that’s a huge amount of weight, I can’t even imagine how horrible it was for you
So sorry to hear about the “dismissal factor”. I deal with the dismissal factor in the ER’s as a “Non-compliant Diabetic” if and when I need to go there due to pain or dehydration which can put me into an episode of Diabetic Ketoacidosis (DKA). I had these episodes for five years and finally after I ended up in the ICU for 6 days they suggested I see a Gastroenterologist to be tested for Gastroparesis (GP). Yip. So that explained my “non-compliance” to all who thought I simply was not taking my insulin and/or eating each day until my heart was content. NOT. Also, right after my diagnosis I lost 40 lbs. in one month and then lost so much over the next few months that I was 2 lbs away from a feeding tube. But this is not true for all, I just want you to know I get what it is like to have gone through your similar situation. I have had chronic illnesses since my late teens, so I have a lot of experience with this now that I am 58 years young. So do hang in there and do your best to own your truth, as this may take some time, but once you do you will feel so much better about telling others that, “You are more than able to make up YOUR own mind, but it will not help me change My mind”. Then in the face of anyone who may dismiss you as you also are dealing with what Izzy has on one of her T-shirts for sale, Not All Disabilities Are Visable, you will no longer care what they have to say. There may still be a great website that is something like, “Butyoudontlooksick”. For those who have chronic illnesses that are not visable. A friend also taught me that what other’s think of me is non of my business, so just be true to you. I have finally learned how to do this and now I just let people talk and if I feel the need I just nod, and simply say, “Hmm, that could be something to consider” and walk away knowing they truly mean well, but for those who are chronically healthy they simply live in a different lane of Life and have NO idea of what our lives are like. We have our own Lane to travel, but at least we are NOT alone thanks to Izzy and all who share their stories on UA-cam. I got my best advice on the internet. Izzy is a great source of information so I have taken time to look back on her other videos and learned so very much. By the way, love your name as we here at my house call ourselves the Wolfpack as we have 2 great dogs, one being part Wolf, Chow, and a breed I knew nothing about, but an American Indian dog. We live in the Southwest and both my boyfriend and I love All things from our Native Indians. We even met at a drumming circle several years back and then we moved in together and I got him our dogs, the other one is a sweet little American Eskimo with a Sprinkle of Corgie. Both dogs are the best medicine and bring much joy into our lives. I do wish you the best of luck as you find what meds and/or foods you are able to tolerate. May you be able to find some peace and happiness and the best of doctor’s who will always listen and treat you with the best of care. You deserve it!!
Damn that sucks. Glad there is a success at the end of the story there :)
TW
I starved for over a month and lost 22 pounds, I was literally dying and the ER doc wanted to turn me away. My mother had to fight him for 45 minutes before he caved. THIS SHOULD NEVER HAPPEN
this is so horrible
I was handed a note in an ambulance and told to “avoid thoughts of self harm” after throwing up every meal for a month
I find it really terrible that doctors are so dismissive of peoples suffering with gastroparesis. I’m a first year medical student in the UK and I have already been taught about gastroparesis. Hopefully this will mean more awareness of the condition in the medical community and less patients will suffer like you’ve described in future x
I wish we can interview doctors before going to them. So that we don't waste our time
I always treat my first visit with a doctor as a job interview. I do share your sentiment of wanting to interview them prior to going to the trouble of scheduling and going to an appointment.
I agree completely. In fact, one of my opening questions is often, “So how and when did you know you wanted to be a doctor in this field”? Their reply would often determine whether I would schedule a follow up. We have the right to know their training, etc. I also do my best to research them on the internet and I also go by how well the office is run, if it is clean, and if it feels calm in the waiting room. Then when I DO like them, I tell them, “Well, I think you are the right doc for me, and welcome to Team Heather”. They usually chuckle as they know that I am in need of many different specialists. All of which have been cherry picked and now I get the best of care or I am out of there. As I see it, they work for us as they get paid by their patients!! So best of luck with all finding the right doctors for you!!
You can find the quacks online if you're looking for someone to diagnose you with the disease you want...
@@DulcimeristDoctors aren't hurting for patients.... there will always be enough.
@@parkerjon29 And there are plenty of doctors, so there's no sense continuing to go to a bad one.
Yes, yes yes! my doctors actually convinced me that it was an eating disorder and I ended up in the hospital and in an outpatient eating disorder clinic because I couldn't keep food down at all. in the end, it did turn into an eating disorder because I became so fearful of food/was so tired of throwing up.
I so needed to see this. I am coming to terms with dealing with my gastroparesis and dysautonomia. It can be so awful and lonely and NO ONE can understand. My friends are confused why I don't ever want to leave the house...um because every second is a mystery and a painful episode is likely around the corner!
FOR THOSE IN A DESPERATE POSITION: There is a powdered "food" called the Elemental Diet. It is rapidly absorbable nutrition that hits your cells before even reaching your stomach. The brand I use is Integrative Therapeutics. It kept me out of the emergency room for the last few weeks while I find something natural from this Earth I can eat.
Same boat, due to T1 Diabetes…back to diabetic shake drinks for breakfast and baby food pouches for lunches and snacks and hopefully 🙏🏻 some real “food” for dinner again and trying to find foods that agree with my stomach after about 18-20 months of not being able to eat…thankfully sugars are getting back in line again so 🤞🏻
Love the video! I have gastroparesis and I once had a dr tell me that it was “a good thing” that I lost 70+lbs because I was a little overweight. EVEN THOUGH I TOLD HIM I LOST THE WEIGHT BY NOT BEING ABLE TO KEEP FOOD DOWN OR EAT Because I would constantly vomit!!!!!
Never went back to him.
I feel you, my doctor would praise me for my weight loss when I would come and see her every 3 months for zofran, even after 100 pounds she told me it was stress or me doing it to myself. I have found an amazing doctor now though.
oh gosh that's so horrible. im so sorry that your symptoms and weight loss weren't taken seriously because of your weight.
I hate paying $300 to be told I'm being dramatic.
What I don't understand is when doctors used to dismiss all my symptoms as an eating disorder (turned out to be POTS and ME/CFS with severe gut problems), they literally just told me to go away. If you don't believe me fine, but what sort of doctor turns away a patient with any eating disorder to manage on their own?? It's baffling.
at this point they seem to be deliberately trying to cover something up i dont know surely they are not this ignorant this is not good enough at all so many people suffering my daughter has been treated terribly x
Doc: Are you diabetic?
Me: No
Doc: you can't have gastroparesis
Me: 🤦
I think the problem is that some doctors just don't understand gastroparesis. It isn't just gastroparesis. My sister has been suffering for a long time with Crohn's flare symptoms and the doctors kept suggesting it was IBS. She's finally on her way to diagnosis. My daughter has the same symptoms as myself and I ended up with Barrett's by 17 at the same time as my gastroparesis diagnosis. The pediatric gastroenterologist dismissed my concerns, meanwhile my daughter feels like throwing up after eating and it causes her a lot of anxiety.. it's frustrating when you aren't heard.
Get a second opinion. That doctor was being lazy and didn't want to do their job. Diabetes isn't the only thing that can cause gastroparesis. Do you have Ehlers Danlos syndrome, which is why your daughter also has issues?
@@Dulcimerist my sister and I were both diagnosed with gastroparesis as teens. Every time we go to a new doctor, that is the response we get.. the response is obnoxious, but it shows that a lot of doctors my sister and I come in contact with are uninformed.
Regarding cause, it seems it is hereditary, but no one has determined what exactly is causing the gastroparesis. I suspect my dad, and strongly suspect my son has EDS, if I don't have it myself. Getting a diagnosis for anything in my area is difficult. I've been living with a mystery illness for almost 4 years and I keep getting passed around from specialist to specialist. (Technically I've had the symptoms for 2 decades, but they ramped up 4 years ago) My son's symptoms are obvious (stretchy skin, double jointed everywhere, dislocation history, frequent pain, fatigue), so I'm hoping he could be the key to helping the rest of us be taken seriously, as terrible as that is..
My gp was caused by hypothyroidism.
I’ve got small fibre neuropathy and this can affect the nerves regarding gastroparesis which I suffer badly with and yet I am overweight despite hardly eating anything and I track every thing I eat, I’ve also got heds, pots, multi system dysautonomia, bile acid malabsorption, and many others
My grandmother had crohns. She got down to 70 lbs and was fading away. She was told she CAUSED it by being too stressed and her psycho church came to her house and gave her a literal exorcism. It makes me so mad. She had 2 small kids at the time too. My heart hurts for what she went through. By the time doctors took her seriously she had to have most of her intestines removed
Doctor Auditions.
They are auditioning for us.. not the other way around. 💜
Hello Izzy, I wanted to say thank you for all you're great video and info on EDS,POTS. You have helped me out alot.💖
Thank you! I'm so glad!
I have to second those feelings of appreciation and gratitude for Izzy's work!
My best friend's GI doc actually told her she looked great when she was at an appointment with him. He knew she had gastroparesis and believed she had an autoimmune disorder. She was complaining about the weight loss due to never being able to eat. He told her, "but you look so good". Seriously bad
I’m one of those people that was left to starve to death by my GI dr before I was able to get another doctor to place a feeding tube. It’s horrible that so many of us essentially have to “prove” to the doctors that we’re sick as if we’re standing trial or something. 😒
On a slightly lighter note, my brother also tells me to do the no make up thing and to look like a slob when going to doctors appointments so they’ll see how shitty I actually feel lol
I’m not really into tiktok but I almost felt giddy seeing these because it feels nice to know that others understand what it’s like (even if I wouldn’t wish this disease from hell on my worst enemy) and that we can kinda joke about our crappy situation. It’s also cool that people are bringing awareness to gastroparesis in a funny way.
omg im so sorry you went through that Natasha
I am still so grateful that I met my GI through an Endoscopy. He is a very sensitive and open-minded Dr, and even the hospital staff were so helpful. Fortunately, I went to Shady Grove Adventist Hospital, one of the best hospitals in MD. I wish it were more common for people with Gastroparesis to be taken seriously and not labeled as having an eating disorder or doing self-harm for attention. I agree with you, the girl with the "always hungry" shirt was hilarious.
Wow, the alcohol thing makes so much sense. I didn't realize that's why alcohol always hurt my stomach and made me feel sick even just with the slightest amount. I always feel so sick. I was never given a gastroparesis diet but just told to take pills for it by my GI Dr. I've just learned throughout the years that there are certain things I just can't eat.
my stomach HATES it too :(
I have a lot of stomach issues and my first gastro doctor threw all these tests at me. Then after a year and a half of not getting better, he basically said "I can't do anything more. Go find you another doctor." Thankfully I did find a MUCH better doctor that's helping me diagnosis and live through everything that I have so far. Don't give up on advocating for your own health.
also i’m so thankful for my doctor, i live in the uk so only saw my paediatrician for the first time in september, and i’m so thankful that he’s referred me for second opinions because now i’m with a cardiologist and i’m about to have my first appt with a gastroenterologist in a few months!!
So glad that you found a good doctor who can put you in touch with the proper resources! I have friends in the UK who have EDS, and I've heard horror stories they've been through while trying to navigate the the healthcare system in the UK.
Same here! Im in the uk and will finally see gastro in May! I’m currently being treated for suspected gastritis and suspected gastroparesis but i really want some actual tests to confirm.
Great vid.
I relate to the idea of being anxious about trying new foods/eating out or at someone's house (Not so much of an issue these days. Ha.)
I don't have gastroparesis, but do have some other issues that make my relationship with food... interesting. (SPD and a digestive system that is sometimes, and very suddenly, angry for no reason I have been able to determine.)
Most days, my main issue with food is that certain foods (texture is a big trigger) are very difficult for me to swallow and can make me feel very ill or even throw up.
It's awesome growing up with this issue when your parents think you're just being picky. Sigh.
Unfortunately, my son seems to have inherited many of my issues. Poor kiddo.
Anyway, if you got through this, thanks for reading my novel.
I was one of those people left to starve. Luckily I got a double diagnosis of gastropaeresis and MALS (look it up if you have EDS, POTS, & GP). Then I was in the process of getting cleared for MALS surgery and literally every doctor I encountered on the way said to me "my only goal is to keep you alive until your surgery" nothing else. My kidneys were failing and I was on a feeding tube, but I was alive. Update though: the surgery cured my GP and I got my tube removed and now I eat whatever I want!
What were they able to do for you in surgery, IF it not too personal to talk about. Many would love to know of all options that are able to help, let alone cure it altogether!! I am so happy to hear you ARE feeling much better and that you can get back to thriving in life rather than just barely surviving from the sounds of it. So good job, and kudos to your surgeons!! May you enJOY each and every day with your newfound health!! We ❤️ to hear good stories with such positive outcomes!! Yay 😊
Glad to hear that!
The first one is so me with my gastritis, but I can't even drink water (just a few sips) because it will hurt, but also being hungry hurts because there's only acid there and it's hurting my stomach, it's like
"eat and be in pain and have nausea
Or
don't eat and be in pain and hungry"
Antacids?
I've suffered from chronic headaches, respiratory problems , nausea, and joint issues since I was a child. You can visibly see my knees inverting despite the fact that I've never been severely overweight or pregnant. I've broken bones by stretching my feet, and experience headaches so bad that I see stars and experience vomiting fits. There's more than enough of a family history of disorders that should be the first thing my doctors tested for, but I have a problem getting them to acknowledge that it's anything other than a bad vitamin D deficiency. I couldn't even get a diagnosis of PCOS with a family history of it until I let my full beard grow in for an appointment.
went to the doctor today, she agrees that I might have hEDS! I'm going in to go through the diagnostic criteria with her more thoroughly next month! she also agrees I might have POTS! I finally feel like I'm being listened to, and your videos helped
Hi Izzy! I can't believe I wasn't subscribed before... your videos were among the videos that started the lightbulb moment in me that EDS was actually my issue. I wouldn't have been able to take the hEDS diagnostic criteria to my doctor without them. Now I'm a disability advocate and educator! :) Thank you for all you do, while being funny, warm, AND informative.
It took me getting to 89 pounds for them to put in a feeding tube. I had to go through a psychiatric evaluation to prove that I didn't have an eating disorder before I got the tube and the nutrition I so desperately needed.
how tall are you?
They r saying no feeding tube for me since i am about 5ft6 104 pounds and can take only 1200-1300 calories daily that too only.liquids calories and one small sandwich..
Maybe when i get to 90 pounds they will take.me serious this sucks
Aw! I made it in your video! 🥰 I’m glad you liked my wine video 😂 Of course I don’t really do that (it was just water and food coloring), but I had fun making that video. Some people really do put alcohol in there tubes. I’m just too much of a lightweight when it comes to alcohol, and it makes my GP flare so badly
I am going on 3 years of being diagnosed with gastroperisis and this is a very quite killer and needs to be really put in the spot light like other major illnesses, cause my day to day is a tornado it can be good and then turn to hell!! I am worried every time I eat, don't get me wrong i have a good life but this is just a horrible disease. The bloating and pain is so painful
It's such a difficult and painful condition. I wish there was more awareness and im hopeful that the medical field will be able to continue to improve the treatment options
@@IzzyKDNA yes absolutely 🙏🏼❤
@@IzzyKDNA They're definitely working on new treatment options! I recently got put on Mestinon, which is a 75-year-old medication which researchers have recently repurposed to treat both gastroparesis and POTS. I'm impressed that researchers found a new use for an old drug, and I'm absolutely amazed at how much better I feel! The bloating and abdominal pain are gone, and the POTS is pretty much gone as well!
I recently lost 30 pounds over 6 months because I had a bad flare of Sphincter of Oddi dysfunction along with mild gastroparesis. Bones were sticking out out of my back, my face was drawn and I looked emaciated. A woman I know told me I looked fantastic. That made me feel sick. My neighbor was also envious of my weight loss and when I told her she didn’t want to lose weight the way I did, she told me that yes, she would. I went through hell and she knew it but our society is so sick the way we value women by the weight that women will opt for protracted misery to lose weight.
Unfortunately, she’s right. Most people don’t even look fat women in the eye. Of course she’d rather be sick and thin. At least people would treat her like a human.
@@dewilew2137 what a profoundly accurate statement. The thing is, my neighbor isn’t even overweight and a beautiful woman by any standards, that made it even more painful for me to hear.
7:12 is kim possible! She’s so awesome & has a great sense of humor! She has said though that it’s not actually wine it’s water with food coloring 😜
The amount of times people and doctors have mistaken my gastroparesis for an eating disorder…literally makes me so mad
6:20 it could be doctor's treasure hunt. You may thing you found gold after weeks of search, but it could be false gold and then you are back to the beginning
me: *definitely don’t have gp even tho i’m being tested soon and my dr thinks i have it,,, but i definitely don’t have it aha*
also me: damn maybe i do have this,,, i should probably stop trying to avoid this condition just because it seems serious and i’m kinda scared that i do actually have it lmao
literally me all the time even though im diagnosed. I'm like, well what if it was just a fluke? Or what if they are wrong? Then I feel sick and I'm like YIKES JUST KIDDING I def have this. But on a serious note, I'm really glad to hear that your doctor is testing you for it. It can definitely sound like a scary condition and it's not easy to deal with, but everyone's case is totally different and it's very validating to have a name to your symptoms. Good luck with the testing!
This is the situation I’m currently in as well. I have EDS/POTS/MCAS. Have all the symptoms of Gastroparesis, I’m being tested for it soon, my doctors think it’s likely/possible...but I tend to point to every tiny little thing I can as evidence that I don’t have GP.
It's good to know for sure if you have it or not, since it can point your doctor the right way in treating you so you can feel better. I ended up getting tested, and was blessed by my doctor prescribing Mestinon to treat my digestive dysmotility issues. It has been a miracle for my digestive issues, and has also knocked out my POTS. It's like a magic pill for my EDS issues.
I begged my Dr. To help me. I kept saying I just can't eat. 100 lbs loss later I ended up with Gastroparisis and pots. Swallow study day they wanted me to stand still for two minutes. I have pots and can't stand. They refused to make accommodations for me . Fired my Dr. On to the next wish me luck!
I love this comment section. Such a lovely community. Pardon me while I mildly rant. It’s crazy how many doctors I’ve had that don’t understand gastroparesis. I was dismissed from the hospital this morning and told by the admitting doctor that the only thing that could have possibly made me ill was noncompliance with taking my insulin, and that it had absolutely nothing to do with vomiting violently twenty times in six hours. And that I don’t look underweight now, so my reported weight loss of twenty pounds in just two weeks must either be a mistake of some kind or I was overweight in which case I needed to lost twenty pounds. Despite me currently weighing barely 100 pounds at five foot two. That hospitalist even said the next time he saw me in the hospital, I wasn’t leaving until I got a complete psych eval. Fingers crossed I never see his face again.
While looking for a doctor that would listen to me and treat me the way I need, I was accused of doctor shopping or looking for a doctor that would tell me what I wanted to hear. This was by my former therapist.
I love your tiktok reaction videos so much the tiktoks are great and then you're so positive about them and always have something funny and interesting to add
Thank you so much!! 😍
I’ve had a few sips of beer and gotten sick. Champagne takes a sip and a half to make me feel drunk. Wine? All I have to do is SMELL wine! If we’re going out for a drink, I am a cheap date🙃
I don’t have gastroparesis .
i finally got a dr who believes and listens to me!
Girl I was bauling over the toilet a couple days ago while throwing up half my stomach or more it's been like this for months it's just the new normal for me
Hey there that’s fantastic news that your gastro has settled down…mine actually fluctuates quite significantly from my blood sugar levels getting worse or improving so maybe whatever was causing your body the stress was what made yours flare?
This was so relatable!
IF a person with EDS has gastroparesis...and they're are NOT eating...their muscles waste...which leads to FURTHER JOINT INSTABILITY!!...DOCTORS NEED TO WAKE UP!!!😮
Sulfites? There’s more sulfites in Champagne than red wine...
I’m so glad you make these informative videos so first of all THANK YOU so much for that. Here’s my weird question… Does anyone ever deal with these symptoms but only like in the first half of the day? The mornings are always nausea and dizziness for me however as the day progresses I seem fine.( at least much better). I have no idea why, but it is so similar to the symptoms you talk about with Gastroparesis. I’m just trying to get some answers myself. Thank you for reading!
Yes! I was like that for most of 2019 and up until March 2020 when I was put on Mestinon. It was POTS related for me. I kept ginger ale under my bed to drink before I got out of bed and I was at one point taking zofran every day until I got on Mestinon. Then a little later I was put on Midodrine and now the nausea is almost completely gone. I might have it from time to time instead of daily.
Also increase your water and salt intake if you can. That really does help.
the nurses are worse so many comment on my daughters weight saying things like awww your tiny your lucky as she is on drips and morphine etc or no wonder you are so thin another one said i will be the one to tell you something is wrong with you when refusing pain meds in a bad flare up given paracetamol and told to take it when she cant stop vomiting terrible treatment xx
oh gosh that's horrible that they would say this!
"You're doing this on purpose. You need to seek mental health counseling." "You're just depressed. You need to go on antidepressants." "You have anorexia dysphoria. There is nothing else that could be wrong with you." For TEN years I've heard these things over and over.
Anorexia nervosa*
hey im really thankful for your chanal and you have helped me so much. im trying to gwt a POTS and EDS dignosis but its been so hard,
I'm sorry it's been difficult to get tested for EDS and POTS - It can be so hard to find a doctor who knows enough about them to diagnose them. If it means anything, I think that it's easier to get tested for POTS than it is for EDS and having a diagnosis of one will likely make it easier to be tested for the other, so it might be a good idea to try to find a cardio. just a thought!
@@IzzyKDNA thank you. I live in a small town and I'm under 16 so they keep saying it's in my head and one doctor even refused to test me even after being in the hospital m my mum also thinks I'm to young so it's a bit annoying cause no one believes me
I agree with Izzy on getting diagnosed with POTS and other co-morbidities of EDS first. They diagnosed me with POTS and Neurally Mediated Hypotension first, and then other doctors saw that and noticed my hypermobility. I had doctors tell me it's "all in my head" as well, which delayed my diagnosis and got me on medications that gave adverse reactions - one of those sent me to an ICU with convulsions and I nearly died. I highly recommend you what the webinar on UA-cam called "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki. It goes into depth about how POTS happens in EDS patients, and why EDS and POTS often get mistaken for psychiatric disorders. That webinar changed my life, and helped my doctors to find better medications to treat my EDS.
@@Dulcimerist thank you so much I'll look into that soon
@@joshlartter5612 my POTS symptoms started at age 8. All four of my kids have hEDS and orthostatic intolerance. These conditions (EDS in particular) are genetic so there is no such thing as too young when it is a disease we are born with. It's just a matter of when the "switch" is turned on and symptoms start showing. My EDS symptoms didn't start until my 20s, but in my kids they began much earlier. My middle son is only 11 and has more symptoms than I do.
I had a doctors office put in my medical records that I do heroine 1-2 times a week. He totally ignored my gastroparesis even though I was throwing up 5-8 times a day and couldn’t keep down water.
Doctor shopping.....I think of it like dr dating
lol
doctor browsing? 😂
😂love it!
Waited 4 years for POTS diagnosis. Still waiting on my digestive system diagnosis…since 2005. I no longer count the dr I have seen.
I had one doctor write my pyloric spasms from my gastroparesis as cartilage pain...what???
Well... I've never had the issue with trying new foods and getting sick. I'm a super taster, so... I have a limited diet as is. The Gastroparesis just meant I couldn't eat those foods!
...probably also good that all alcohol tastes and smells like vinegar to me...
I’d imagine alcohol would be okay in a G tube like a NG or PEG, but idk about it going into a J tube which goes straight into that part of the intestines 🤔
it pains me that the medical system of the USA is as bad as it is. i have been suffering from eds, pots and gastropareses symptoms severly for the last 12 years and so far ive only gotten the gastro diagnosis. The drs dont want to listen to me or my brother (who is having the same issues) we have been tested for everything else and all the results have come back negative. im almost 30 and a single mom who is physically unable to work medical care here is crap!!!
I have severe gastroparesis and have not been able to eat solid foods for SIX MONTHS... I've now lost over 70 pounds. I can't get my inurance to pay for ANY medications that could help and the last time I tried to bring up my inability to eat my doctor told me 'well who told you to only be on a liquid only diet. Go eat.' .... excuse me?! I told him that I **CAN'T** eat. he told me that was a good thing and to keep up the weight loss until I reach a 'normal weight' then they will 're-evaluate' where I'm at. They literally want me to starve to death. I manage to get down 3-500 calories a day with liquids and thats it. I'm at my wits end .
That's awful! I can't believe the doctor told you that 😬
Doctor shuffle!
great name hahhahaha
@@IzzyKDNA thanks! I've seen thousands of doctors in my life. A lot of them thought I was drug seeking..... I'm allergic to opioids🤦♀️. So I started calling it that. I also now ask my new doctors how much they like blank puzzles.
6 years, over 100lbs lost, finally got some answers and a surgical consult. I'm hoping to finally not have to worry about my doctors letting me die.
I live in venezuela, where medical care is shitty and expensive and public healthcare is non existent and I am one of those who was left to starve and feel like I was dying. Namely, Clínica el Ávila said I was doing this to myself in the ER, and even tho I had to pay for the emergency they never bothered sending an specialist to see me. I hate them so much. But I guess it's nothing compared to what Urológico San Román did to my mother. The ignorant and useless doctors there didn't want me and my mother that she has heart failure. Maybe they expected her to die.
after much trial and error Ive found that the ONLY alcohol i can drink that doesn't hurt my stomach and make me vomit are Moscow Mules. The ginger beer in the Mule actually calms my stomach and the drink definitely doesn't make me flare up, especially compared to literally any other kind of alcohol (and i love so many kinds!) I would highly recommend Moscow Mules for anyone with GP or stomach issues!
In November of 2020 I started to get nauseous in the morning and would vomit so I didn’t eat so early. It progressed until the first week of January 2021 when I stopped being able to eat anything and was vomiting around 20 times a day. That was also the start of my MANY lengthy hospital stays (I’m talking 1-2 weeks, minimum). They tested me for everything and then decided it was my G.E.R.D (gastrointestinal esophageal reflux disease) and prescribed protonix. All that did was cause my face and throat to swell horribly and they finally gave me an NG, then NJ tube, but only when in hospital. The doc and all his wisdom just said I was trying to be bulimic and that’s not the way to lose weight, even though they had me under 24hr supervision to see if I was doing something to myself. He also said to just eat a sandwich, so I did and threw up on his foot. By the 3rd or 4th month I had lost 10 pounds and my heart, liver and kidney’s were starting to have serious issues and I was at serious risk of organ failure. I did something all docs hate and googled my meds I was on since a few were increased in dosage. Turns out I had something quite serious, I had serotonin syndrome (serotonin toxicity) caused by my Effexor. My doc took me off of it and I slowly, very slowly made a recovery.
This was really interesting. Red meat is an issue for me as I find it real,y hard to digest xxxxxxx
I've never had red meat but i've heard that it's hard for others with gp to digest!
I am searching for a diagnosis. Right now I have HSD as a place holder until I can see the geneticist in ONE YEAR BECAUSE THATS THE SOONEST THEY CAN SEE ME. also. Doctor wanted an echo for obvious reasons. And they SCHEDULED ME OUT 3 months!!! It’s crazy. On too of that I have lost 50lbs in 5 months because I live off a liquid diet. But the doctors aren’t concerned because I am still “over weight”. Like. My labs are awful because I can’t eat and they dismiss it because of my weight. It really sucks.
I also have PCOS. So losing weight is not easy for me. So 10lbs a month is HUGE.
I lost 60 lbs in 6 months and a GI physician said “well, now your BMI is normal!” 🙃 then repeatedly asked me “are you sure you’re not doing this (throwing up) on purpose?” And said “I think it’s just anxiety.”
I’ve thrown up 1-5 times every single day since 12/2020 - that’s 2 years and 11 months. I was diagnosed with gastroparesis in 4/2021 but they called it “mild” and didn’t care. I’ve gotten “second opinions” before, but if you’re a “healthy looking” young female, all of your health problems are apparently caused by mental illness.
I’m a healthcare provider and I’ve given physicians articles from scientific journals on treatment plans but they don’t care. I’m 27 and I’ve given up at this point.
I was sent for testing last month, gastroenterologist said it’s or gastroparesis. Took the very long test, surprised the doctor listened to me about symptoms and sent for the test. For several years, finally get tested. Did the egg with toast stuff, egg was nasty but worth going over the test. Results were sent to me not to long wait days after when the dr looked it over. Came back with, yes you have it. Still in a mix “happy ish” that kinda happy of getting finally know what’s been wrong all this time and mixed with, 😑 well know what’s wrong, now kinda changes a lot. (On top not related to this video but cardiologist said pots to me and gave suggestions what to do to manage it) don’t give up on finding what’s wrong. Took over 8+ years and to many dr visits to count. Now just sorting my random often allergic reaction type issues)
2:12 I agree with this point. I can’t relate on the digestive half but i have knee pain and nobody believed and my parents never took me to the doctor. It took until I couldn’t walk for them to take me to the doctor. I feel that’s pretty dumb
Fun video! My gp is mild at the moment. It sort of flares up from time to time. I never know when.
Alcohol is my absolute worst trigger, ends up in vomiting every time
I had pretty much every issue and symptom listed in the first 50 comments below for 50 years. Then I quit eating meat. That's all I did. That was 5 years ago. Haven't had a single stomach issue, or any symptom of "anything" since then. I don't go to the gym, ever. I walk about a mile maybe 3 times a week and sometimes I ride my electric bicycle for a few miles, maybe once a week. But hey, I'm 55 freaking years old and about 30 lbs overweight. But my doc says I'm healthy as a horse. I still eat cake, ice cream, chocolate, junk food, chips, pizza, french fries, grilled cheese, you name it. Just no meat. Oh, and I don't take any prescription medications or herbal supplements at all. I wish more people would see how simple it is to fix nearly every ailment people have these days.
I think I have myself gastroparesis or another similar issue after my third day thinking I was dying on the toilet haha. (ED...not the Ehlers Danlos kind of ED) I also have STRONG suspicion my mother and I have hEDS, and she actually does have gastroparesis. I’ve always had these issues but never this intense GI wise. Thought I’d share bc I really said I have this predisposition for this thing Let’s make it worse and restrict.
I think it could be really helpful to see a gi doc about these concerns! Also I want to give you info for the National Eating Disorders Association (NEDA) chatline, text line, and phoneline. They can be really helpful to chat with if you're struggling with your eating disorder - they can give you support and treatment options if you feel like you're ready :) www.nationaleatingdisorders.org/help-support/contact-helpline
Thanks so much! I’m familiar with them! And I’m in therapy. I was recovered a little while and have dealt with this on an off for a few years, plus I’ve come to realize one of the causes of my ed was gi issues in the first place, so I def need to speak with a doc!
So I have pots and I’m a t1d and I can’t imagine having gastro
Many people use doctor shopping as a way to say you searching for a doctor that will give you specific diagnosis (usually one they don't believe you have). I was accused of it bc i was looking for a doctor that evaluates for autism in adults then I also started looking for one for my physical symptoms (hEDS/HSD symptoms and POTS symptoms).
My friend with eds and pots got a doctor taking hare the pots was nerves and maby she should have some until blod presser meds :/
POTS is a nervous system disorder. It is a disorder of the autonomic nervous system. Blood pressure meds do help in addition to up to 100 oz of water per day plus increased salt intake.
For my POTS I take one blood pressure medication (Midodrine) and one medication to decrease my heart rate (Mestinon) and I take up to 3 Vitassium salt pills per day in addition to as much water as I can handle, which tends to be around 84 oz.
Edit: I take the medications multiple times a day, it's just those are the two I take for POTS.
Ugh so frustrating dealing with doctors who don’t believe you. Any tips for the Gastric Emptying Study? I go for mine in 2 weeks.
have sex the day before lmao
It took me months of starving before getting a feeding tube. Then the feeding tube didn’t work and took them a long time to give me a PICC line and TPN.
its the fermentation that causes the pain. Fermentation is trouble for people with GP, being that those individuals are naturally at risk of food fermenting before its vomited or digested.
I don’t have gastroparisis but have had horrible stomach problems since I was a kid.
My old GI dr was like: you are overweight you can’t have these awful stomach problems - if you had these problems you would be tiny
Me: 😭
was told I was anorexic when I explained i cant eat at all and its horrid and I want to gain weight and it took years to get it off my record
I have dysautonomia(doctor diagnosed) and maybe gastroparesis??(self diagnosed). I've heard that they are related and technically have all the symptoms its just all the story's I've heard are WAY WAY worse then what I've experienced. I mean, not to say I haven't been in lots of pain from eating but yea, I'm scared to ask my doctor about it cause what if I don't have it and I'm wrong?? but then again if it isn't that then what is it? 👀
TL;DR
can you have gastroparesis but it not be like really really bad, just enough to be like "this really sucks lol"
I'm sixty three years old. I can't drink milk or ice cream gives me diarrhea. I need help. I've been to doctors. I had a colonoscopy. I've had cancer.I've had a history A historic to me. I can't go to the bathroom in its four days
Can you vomit when you have a feeding tube?
Yes you can!
I go tomorrow to see about a gastric pacemaker. I'm scared! This is a serious diagnosis. , I feel pregnant and bloated every day. Throw up comes up in my throat. Chest pains, back pains and headaches and tired. To me this is not funny! Theres people dieing from gastroparesis. I have gastroparesis, gerd, hedia hernia ,acid reflux, depression bipolar and anxiety. It took 4 months going through pain before i was diagnosed. 🙏 #Godlovesyou
Maybe it’s sulfates and or high histamines ? Idk I think that’s in wine and Champaign
Thank you for sharing.
Omg I need an always hungry shirt
The AMOUNT of times I got complimented for dropping 90lbs from GP. I was starving. I still get people who are overweight make comments about how they need to lose weight too when I disclose and I just 🙃 like. Nooo.
That’s so true I can eat something one day be fine then the next nope. I got severe gastroparesis it’s painful.
How long did it take for you to get rid of gastroparesis? I hope that’s my case, I was recently diagnosed 🥲🥲🥲🥲
Hii! Ive been watching your videos a lot over the last few months. I know gastroparesis is one of your problems, but I know in another video you mention taking prucalopride for slow bowel movement. Have you heard of the new treamtment called Vibrant Gastro for constipation? Im not from the US but thought maybe you might be interested in looking at what it does. I wish I could access it!
Im currently starving. Im on a liquid diet. But its not enough and even a liquid diet im limited with as well.
Maybe the term you are looking for could be doctor dating :)
Putting alcohol in a J tube can be VERY dangerous. Putting it in a G tube is fine.