How Our Gastroparesis, EDS, and POTS Differ | Ft. Simply Hannah
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- Опубликовано: 28 авг 2024
- Video on Hannah’s channel: • Video
Hannah’s channel: / glamourprincess411
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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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
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Puberty hit me and my gi track has never been the same.
The same thing used to happen to me all the time, fainting on the toilet. But mostly from severe stomach pains, my blood pressure would drop. I also have POTS and GP. So glad that I found your channel, it’s so relieving to find people I can relate to.💖
Hi Micaela, I have POTS too. Cause can be HPU, metabolic disease. Can be treated very well and other autoimmun diseases can lessen/ disappear.
KEAC INSTITUTE, Dr. KAMSTEEG
English speaking (click) for more Information. Daily loss of essential vitamins etc. Inborn, different from of liver detoxification. Maybe you want to check it out.
Tons of people got help...
Good luck 💓
Plus you might want to check your adrenal gland...CONN SYNDROM. Too much Aldosteron, too little Renin....one aspect of POTS.
Can be treated well with e.g. Spironolacton, Epleneron.
And HISTAMINOSES check.
All goes together.
Very interesting how so many of us differ in so many ways.
Prayers going up for anyone who has POTS and GP, my sister has POTS I don’t have GP or anything like that, but I can only imagine how rough it is! I do have EDS and my sister has Fibromyalgia.
I am waiting on the results of my gastric emptying test, but I have always had pretty severe constipation. I have more issues sometimes with a decent amount of liquid, it seems to also sit in my stomach longer than is should. I have orthostatic hypotension/intolerance and I have the same issues. I have also experienced feeling like I was going to pass out on the toilet more than once. Mine has gotten a lot worse as I have gotten older. There is no treatment that they can do for me. It is amazing how different EDS and the co-morbid conditions affect us.
Melody Ross Do you have an update?
@@winniemaereact1391 Thanks for asking, the test results said normal online, but still haven't heard from the office to see what else it could be. My stomach was having a good day that day, so who knows.
LOVE LOVE LOVE THIS!! It has been 6 years for me and 10 days ago I was diagnosed and given Domperidone and Tecta. I cannot believe how amazing I feel now. I was vomiting every day, the pain, the malabsorbtion, it was all horrible. I feel so good now I thought I may have died because I felt so good. Thank you for your videos! I plan on uploading mine soon on my struggle.
I have watched Hannah also. I know she's been having a rough time. She's had so many serious issues. It's one crisis after another. I'm so hoping her conditions get under control. She's a lovely person. I'm wishing her the best.
my eyes and nose often seem to drip a lot when i sit in the bathroom, probably not at a risk of fainting though but i always thought that felt weird
My Chiari specialist/neurosurgeon is who first led me to ultimately getting my hEDS diagnosis… which over time, and progression of symptoms, led to more diagnoses of several more co morbidities. I also deal with the GI motility disorders and I just received my diagnosis of POTS (on my 2nd tilt-first DX’d with vasovagal syncope and orthostatic hypertension.
I had suffered in silence for many years assuming that my symptoms were just my fibromyalgia or cfids that I was DX’d with years prior. I stopped going to the ER/doctors earlier due to the medical ptsd acquired over the years. I finally visited a neurologist that I knew (I used to work for his brother who is also a doctor). Then my Chiari was caught by accident on an MRI that was looking for something different (“pinched nerve”)… that changed everything because the Chiari specialist that I later found, ended up being knowledgeable in Chiari and the conditions that many Chiarians tend to have alongside their Chiari (such as EDS, CCI, etc…). If not for him… if not for my Chiari journey… I would not have the answers that I have now. My journey is far from over … (currently undergoing further testing, due to a recent stroke and some other findings)💜🦓💜
Even though I figured out that I have EDS like a year ago, and I knew that gastroparesis is a common comorbidity, I didn’t figure out that I had it too until last month. My gastroparesis had been pretty mild most of my life, like I would have nausea in the mornings, and feel bloated after most meals, but i was always told it was just anxiety, and it was just a minor inconvenience, didn’t really bother me that much. Over the past few years it’s gotten slowly worse, I was vomiting a few mornings a week, but I thought it was still stress, anxiety, whatever. And then the stress of the pandemic triggered a flare. Couldn’t eat anything, totally lost my appetite, threw up anything I tried to eat. Lost 60 lbs in 6 months and finally put the pieces together. Now I know what it is, I’m managing it with a gastroparesis diet I found online, and sticking to mostly liquids, in small, frequent amounts. It’s pretty boring but I feel better than I have in years, I’ve only vomited a couple times and the nausea is nowhere near as bad. I guess I’m one who has never had much pain with gastroparesis, it’s always been nausea, vomiting, bloating, on-and-off kind of switching between constipation and diarrhea.
Edit: I realized this made it sound like I’m totally self-diagnosed and self-treating. That’s not the case, I did figure it out on my own but I went to my doctor and told her what I thought was going on, and she agreed with my self-diagnosis and ordered tests to confirm.
Hannah - it’s interesting that mono triggered your symptoms, because that was also the case for my sister and I. My only issues prior to that were migraines, ankle sprains, and rapidly progressing nearsightedness.
Mono made everything worse for me. And I ended up with CFS afterwards.
I got my hEDS diagnosis on Tuesday (I'm gladly taking tips!:)). I'm relieved, kinda shocked but I'm mostly just getting used to it. I have been watching you since March, and you've really helped me. Thank you! Now I just have to learn how to live with my new normal...:/
If you aren't already, work on a foam rolling/stretching/phys therapy joint strengthening regimen. I was in PT for much of my twenties for various issues. After my diagnosis, I got hyper mobile targeted physical theraphy. What a big ole difference!!
Toilet passing out, maaan, thanks for mentioning that, now I feel way less silly about it.
I feel like this conversation happens every time I meet another person in the real world who has E.D.S.
Oh my word, yes. Gastroparesis is sooooo hard to deal with! I got diagnosed with it 16 years ago. It got better for a time but then got worse. I've been much better since March when I, reluctantly, gave up dairy. But nothing is worth the horrid stomach pain and nausea. :'(
I’m so glad they have the resources for you two. When I was growing up I went through the the dizziness standing up and didn’t have the resources.
I'm sorry to hear you went through this without the proper resources and support. It took me so many years to finally have a diagnosis and treatment, but it was so hard going through it without answers and treatment
Hey one of the things I was thinking of was that my symptoms weren't that bad (for someone with chronic illness) when I just didn't do anything, though my quality of life was low. When I tried to engage in life I would get really intense symptoms like intestinal bleeding, throwing up after meals, fainting when standing up, dizzy spells, blcking out, temperature fluctuations, cold extremities...I wondered if these symptoms can be triggered by cortisol levels because it always felt like I had an intolerance.
My doctor recently started me on Mestinon to treat my digestive motility issues, and it's a miracle cure! It stimulates the vagus nerve and parasympathetic nervous system to relieve gastroparesis and digestive motility issues. It's great that researchers have been able to repurpose this 75-year-old medication for new uses! At ten cents per pill, it's also very affordable.
The Mestinon has also greatly reduced my hEDS dysautonomia/POTS, which is a major bonus!
I was diagnosed with colonitis after infections i got on June 2 2020. I have EDS. I am now wondering if i have gastroparesis. It seems to not matter what eat. I am having problems making solid poop. I do not vomit.
I have POTS or something like also.
@@eastlynburkholder3559 Definitely get that checked out by a gastroenterologist. My digestive dysmotility issues made my poop way too solid. A gastroenterologist would be able to figure out what's going on with you.
@@Dulcimerist thanks Dulcimerist
Also I thought this was funny, my father says he doesn't have EDS because when he would dislocate it was only in very extreme circumstances that would cause anyone to dislocate like swimming and the chronic pain isn't chronic because if he lies on a flat surface for two hours at 2pm everyday, and only sit in very specific chairs the pain is managed and therefore it is not chronic. I know TMI, but it's so frustrating for trying to get the family history for the geneticist.
His descriptions actually reinforce the evidence that he has EDS.
Does anyone else watch these kind of videos thinking "Thank god I only have mild symptoms, look how much worse I could be!" then find yourself thinking "Wait, this is so much more serious than my symptoms, maybe I'm imagining my illness, why can't I function at all when I'm not this bad?" ....then realise that it would take a fairly serious case to inspire someone to dedicate a RUclips channel to an illness, & they're not necessarily representative of the degree of severity of the majority of sufferers? Then spend the rest of the video feeling nothing but respect & awe at the determination & capacity of RUclipsrs with illnesses to produce such regular & quality content when they feel so yuk. Anyone? Or is it just me?
LOL this was sweet and made me laugh
Love Izzy & Love Hannah’s channels I’m so similar to you both hEDS Gastroparesis, intermittent POTS, Enteroparesis & Full Bladder Retention. ♥️♥️ My 4 hr GES was 69% of fluids still there at 4 hrs and 92% of solids still there at 4 hrs 🤦🏼♀️ I’ve pleaded for a compassionate NJ tube been refused lost 4 stone in a year can’t tolerate any solids at all.. not tolerating oral enteral feeds either! Been this bad now 14 mths but had Gastroparesis now almost 6 yrs
I'm subbed to both of you🤗💜
I was finally dx'd with EDS at 46 years... still trying to get my GI issues dx'd. Where you live and where you have access to is all part of the medical game. I live in Texas and have to travel for most specialists because there are zero chiari specialists in Texas, and quite frankly, no EDS specialists either(at least I haven't found one). My kidneys are getting damaged from chronic dehydration even though I drink 64-80oz of fluid a day, but I don't absorb it properly... but none of my dr's feel like i.v hydration therapy is a good idea due to complications of a central line. They feel my kidneys are expendable.
Yes! I watch both of you guys! I'm from Ohio! I love you both! Keep up the good work!
I have GP, POTS, and hypermobile EDS. I just got a gj feeding tube. My POTS used to affect me the most until I got normal people sick and now my GP is the worst now. I agree with izzy that the Gastroparesis is the worst one too deal with. I don't do nausea.
I was so afraid to get a port a cath because in addition to POTS & gastroparesis I have a really rare autoimmune disease. It has caused DVTs and PEs in the past so I’m at risk for blood clots and the immunosuppressants I’m on leave me at risk for infections. It’s an inflammatory vasculitis so my veins are a mess- IV’s are so painful and 99% of the time unsuccessful. My situation got so bad that I had to be hospitalized for severe dehydration from my gastroparesis but I couldn’t get the fluids or medicine prescribed because no one could get an IV going in me even with an ultrasound machine. The nurses tried everywhere even my feet- I looked like a heroin addict. I was searching the internet trying to find something that could help me and luckily I found your friend Chronically Jaquie. She’s my hero and she changed my life. She was fearless! She had a port and did all of her meds at home herself and she was only 19 or 20 then. I learned so much from her! I had several infusions that I had to take every month that were through an IV and excrutiating because of my disease. She encouraged me to keep moving foward and I got my port put in and it changed my life. No more people digging around in my veins, no more missed medication because they couldn’t get an IV line in and the 2 best things- when the meds go in through my port they don’t hurt and I can do most of my treatments myself at home. I now give myself daily hydration and nausea meds at home. The hydration only takes 2-3 hours and I just set it up and watch a show or go on about my day at home. My nurse has trained my dad and both of my sons on how to do it as well so that on days when I’m super sick they can give me my meds and infusions. I know this is a really long post. I’m so happy for you that your health is better now than 2 years ago. I just wanted to share my story (and how Jaquie inspired me because I know you were good friends) with you so that if the time comes where you need or want daily hydration or meds you’ll know a few more people who have done it.😊
thank you so much for sharing this with me!
I love Hannah...im so sorry she has to live with these illness
Did you know that Histaminoses/ histamin intolerance plus HPU and CONN SYNDROM/ adrenal gland (too much Aldosteron/ too little RENIN) can go hand im hand with POTS . Underlying cause very often is the HPU.
Y'all should collab more!!
I’m with you on that one Izzy... Liquids hurt more at first, food is worst later 🤓
I was diagnosed with gastroparesis in 2013 when I was 23. But I’ve always been very sick even as a child. My grandma would have to come help take care of me all the time. For me it’s mostly projectile vomiting and just lots of vomiting and diarrhea all the time. The stomach aches are terrible for me to the point I want to almost just induce vomiting to ease the pain.
i want to induce vomiting when the pain gets so bad but i literally can't bc my gag reflex is SO weak because my vagus nerve is just so underactive
I've been forced to induce vomiting in myself because it's hard for my body to actually make me sick.. but my gag reflex isnt as sensitive as it's supposed to be...
These three conditions seem to show up together. I have a friend I met last year who also has all of these.
I’ve had stomach issues since I was born also, I have been since then diagnosed with gastroparesis. I have had c-diff once and they think I have it again.
Hi girls! What a nice double treat! Thank you! xxxxxxxxxxxx
May we collaborate someday and until then please do not stop the entertaining and informative advocacy.
I find liquid really painful immediately after too!
Hanna, you might want to check if you have HPU via KEAC INSTITUTE, Dr. KAMSTEEG, NL.
Other form of liver detoxification. Inborn. 10 % of the population have it. Dailx lack of essential vitamins etc.
KEAC INSTITUTE is English speaking....
Yes I have GP and totally do so bad with liquid for some reason!
Hey, just wanted to talk about possibly why liquids cause you more problems and I know you said you have a high pallet too and I deal with something similar! I know for me it’s because of my tongue thrust and I end up swallowing more air when I drink liquids!
I have epilepsy with uncontrolled seizures and diabetes, as well as gastroperesis. I'm underweight but also anorexic so it is a crazy combo of things. Do u have a support group for those who suffer with chronic illness?
there are definitely a lot of support groups on facebook! just search the condition you're looking for in the facebook search bar.
loved this! just subscribed to your friend hannah!
I’m suffering so much right now. A geneticist said I am on the EDS Spectrum hypermobility type but will not diagnose me. I’m struggling to find an EDS specialist in California to properly diagnose and treat me. I’m so weak from the constant pain any recommendation of word of encouragement would be nice. Thanks Izzy
I just subbed to Hannah’.
this was super helpful for me
Sorry girls, I am so sorry you have this so bad. Please take good care of yourselves!
Hi you’re Hannah’s friend right?
Hi Izzy
Could you please tell me which Consultant you saw in Scotland. I live in Scotland and I need to find someone who understands POTS and other EDS related problems.
Thanks.
Sure! I saw Dr. Christopher Lang. He wasn't a specialist or anything but he was so helpful!
@@IzzyKDNA oh did you see him at a hospital?
Oh I found him. He's now a cardiologist and works at what looks like a private hospital in Edinburgh. That's great thanks for the information. I'm not sure who I really need to see.
Well we are still on lockdown. Well in Scotland the highest vulnerable group are still in lockdown and as I'm on oxygen that means me! The government have been extremely helpful. They gave me priority delivery slots each week. Also people can get a box of food completely free each week if they need it. I haven't ever ordered one of those because a lot of it I wouldn't be able to use and I don't really need FREE food. I will leave that for those who really need it.
Question on being Propanolol (maybe that’s how it’s spelt) do u have issues where it makes tingling or nueropthay worse? I actually got off of it cause we realized it was making it worse, but my doctor then told me I had no more options and honestly I still am couch bound most of the day. So I decided to go back on the med, wasn’t sure if you might have had the same issue?
I got tingling in my feet which is a side effect of the drug
Lucy Horton okay! Thank you, that makes me feel better! I get it in my feet, legs and scalp, plus some pain and I told my doctor and She basically told me that it wasn’t normal and couldn’t be the med. until I stopped the med and it stoped with it, then I think she kind of believed.
Personally for me propranolol did nothing for me. I started to take it for my tremor and migraines but at a full dose saw no difference. Went off it still nothing.
Somehow propanolol managed to raise my BP not lower it
Can EDS be progressive to the point where symptoms get worse day to day, and to the point where you had no symptoms a month or two ago to terrible symptoms now?
i don't know im sorry. you should ask ur doc. but ive never heard of someone say that that happened to them
@@IzzyKDNA Ok, thank you. And I guess I should say that I haven't really had bad EDS symptoms until now. I've always had other problems such as being diagnosed with IBS years ago and POTS a year or two ago also.
I've also had constipation for years now and just always thought it was normal and that if I said anything I would be overdramatic but its definitely something I want to look into
@@lucadbernholtz839 I hope you can figure out the cause!
Vasovagal presyncopy is caused by an overactive vagal nerve. Lol ask me how I know 🤣🤣🤣
I now know this since 2020.