I agree with Izzy on the dizzy symptom. I’ve had random dizzy spells, and it was to the point that I couldn’t hardly get up and do anything. So, it can be pretty disruptive.
Omg I love your pain scale! At the doc they ask me my pain scale and I’ll be like “idk 3? “ cause I don’t know what to compare it with 😅 Luckily my amazing momma steps in and she’s like “ when she says 3 it’s a 6” which is way more accurate lol 😂
That's why for Wilderness First Responder training, they tell us to ask it on a scale of 1-10 with 10 being the worst the patient's ever felt, but they also tell us to ask the patient what his/her worst pain was from in order to get an idea of what kind of scale we're working with - for some people, a 10 might just be a paper cut, while for others it could be a broken femur.
Sounds like you've got such good care options over there. Especially for POTS. I was recommended by a cardiologist to drink more water, cut out caffeine & add 6g of salt to my diet daily lol. When I told him I drank 4 litres of water a day with a litre of electrolyte in summer he told me I had a drinking disorder. When I told him eating salt causes painful small bruises on my calves he said "that wouldn't happen" 😂🤦🏽♀️ What I actually have is type 1 diabetes & hyper POTS & still no POTS treatment cuz I can't get the official testing without getting my instability sorted so I can stand but every Dr I've spoken to about my EDS says it's manageable with exercise. 🤦🏽♀️my bones have structurally changed due to the instability that was not investigated for a decade. I was told I imagined my pain from subconscious emotions & was disabled because I chose to avoid those feelings. 😂 Got to love the healthcare expertise. All of this is "recommend to an enemy" & that enemy would be the drs that ignored me from birth.
Your comment is everything! I feel so validated....same experience right down to the T1D! Smh....I can't even believe someone else has gone through a similar torture. I asked a question about lack of money being a symptom lol.....the Drs. they don't help, they seem to dismiss things and they don't care that I am physically unable to work at many points. It's frustrating. I hope you will speak up about your health battles and maybe start a channel or a FB page or something, Good Luck!!
I'm with Mickey I would rather throw up then be nausea all day. I just discovered you 2 channels and I'm so happy t don't feel alone. I'm going to share with my husband too so he can better understand what I go through
I have severe vertigo so Dizziness and losing consciousness is very relatable when an episode hits. Cannot move for hours when it's so severe while other times it's not. 😓 I cannot imagine going through anything else on this category. Vertigo and arthritis is enough. You guys are so strong going through this. 🥰
This was extra fun for me being I already follow BOTH of you awesome ladies! And I can relate because I deal with POTS myself. You BOTH are AMAZING! Keep up the inspiring work!
This was great ladies. I have idiopathic gastroparesis. Bloating is annoying. The worst is stomach pain/nausea/too hot & cold/dry heaves for two days. Then the trip to ER and trying to talk a doc into giving me a couple of small doses of morphine to "reset" me. Half the time they shove me out the door after some iv fluids and no morphine because well there are too many junkies. Can't take Reglan because it gave me tardive dyskinesia. Thanks for the video. You ladies are awesome.
Consider asking for a low dose of valium or xanax both will stop stomach spasms. Also having a doctor prescribe this allows for a hospital to administer it with less hesitation bc you are already taking it under a physicians care. Fenergen is also a highly effective antiemetic that can be prescribed by a physician and administered commonly for spastic vomiting in hospitals. I was diagnosed over 10 years ago with HEDS and having the right pharmacopia is essential to getting nausea and vomiting under control. Taking a prescription proton pump inhibitor can help with excessive acid production, as nausea/vomiting begins take benadryl to dry up mucous, use prescription sublingual zofran for nausea, and a prescription antispasmotic like valium to " reset" the system and stop the spasms which will cause you to continuously wretch and heeve. If you do get into one of these episodes a light weight ice pack(bc heavy ones can make nausea worse or can't bare the pressure) on the abdomin it helps create the cooling effect without drinking fluids that will make you vomit longer. The longest episode I had was 3 1/2 years of daily nausea and vomiting, the correct collection of medicine and also self knowledge of when to administer them has made a world of difference. Best of luck to you.
@@Saturns48 Thanks for the tips. I can't take valium. They prescribed it once and it did the exact opposite. Thought my heart was going to explode but I'll look into the others. I take 40mg 2x daily of Omeprazole. I will try the benadryl. I have zofran odt. It helps quite a bit unless I'm at the point of no return. ER docs just don't seem to understand that the patients learn what they need. Thanks again.
Thank you both for sharing your stories with me! I have EDS and I had learned that my dad was the one that I had gotten it from. I have had the one that “ I would want to wish on my enemy, especially if they’re the Devil or the owner of the bowling alley I work at! “ at my work and I just went to the restroom and I sobbed!
I agree that nausea is so horrible, especially when it's to the point where all you can do is lay flat until you throw up. At times I've made myself throw up (not bulimic) just to feel better & I hate throwing up, to me it feels like I'm dying. There's no win win in that situation.
i totally agree with the infusion center one !! i got to lay down but it was still super uncomfortable. i would have to get sticked at LEAST 3 times each (both arms and a hand at the very least) i dont go to get them anymore (yay random gi pain going away!) but man i don’t miss them YES the nausea. omfg. i cant even listen to anything when im so nauseous. i would say its a vibe, but totally ironically (also i would rather vomit than be so nauseous)
My worst EDS (classical) issue was a spontaneous dura rupture/CSF leak. It was horrific. My vibe is synesthesia. I have to occasionally alert my coworkers that I'm hallucinating because of it but I deal.
It’s funny how one of Izzy’s doctors said “EDS doesn’t cause joint pain, it only affects your heart”, and one of Mickey’s doctors said “EDS doesn’t affect your blood vessels, it only causes joint problems.”
Unrelenting, unexplained headaches that are completely debilitating. I would rather have my computer crash while writing a term paper. Unless it was a term paper that I had to get an extension on because of crappy health.
Look up cervicogenic headaches and occipital headaches/occipital neuralgia and see if any of those symptoms describe your headaches. Becuase EDS causes hypermobility subluxation of cervical vertebrae causes spasms and inflammation of surrounding muscles and tissues. Seeing a chiropractor to check your neck and occipital ridge might be something to consider. Occipital neuralgia (aka occipital headaches) causes excruciating headaches, pain in the eyes, neck, and face. Chiropractic adjuadjustment are something to consider. The fix is temporary bc the nature of HEDS or Hypermobility spectrum disorder is that you will have subluxations again, but you can get some relief. Best wishes❤
What about having injuries then not being able to work? Symptom being: lack of money! I don't know how any assistance works once you have a diagnosis in place, but as someone who repeatedly wears the splints, braces and boots then can't do my job...it's torture!!! I also have extreme fatigue and so that's super difficult even for a work-from home job, in addition to wrist/finger issues. It keeps happening and I don't know how to pay for things now.
The lighted headedness is possibly cervicogenic dizziness. This kind of dizziness, light headedness, dull headache is caused by inflamed tissue and subluxation of vertebra and discs in the cervical spine. Anyone who suffers severe headaches should also look up cervicogenic headaches and see if those symptoms ring any bells wear the diagnosis of migraine just doesn't really fit. Best wishes❤
Talking about falling, I just stepped out of our truck on my dad’s birthday after we went to eat lunch and then my family dropped me off at my work and I just took two to three steps and boom down I go! There’s was people outside asking me if I was ok and they were kind enough to help me back up and back into the truck because my sister was going to take me to the hospital and get me checked out, unfortunately our hospital doesn’t know what EDS is and the only thing that they could do was take a X-Ray of my knee and put it in a brace that keeps me from bending it and crutches.
Izzy!! I met you in Charleston when Patel, my neurosurgeon spoke with Miss America! Hope you are good girl! Hi Mickie!! 🫶🏼 I was in a wheelchair at the time but those days and my days on TPN and a feeding tube for formula are behind me as well. Thank goodness, I found the root causes to my neurological, GI, bladder and pelvic conditions and the symptoms associated were surgically addressed over the last 3 years. I wanted to share - My worst symptoms with what yall discussed!! Omg I hate even looking back lol and these are thankfully behind me. I had an OC fusion that corrected my vertigo, dizziness, and severe head rushes or passing out. I’d rank those all with “recommend to an enemy” or “lose my assignment”. Used to, I could have even said “it’s a vibe” on these but I progressed unfortunately. Also with the distention, unrelenting nausea, dry heaving… YALL, I know this is gross but I don’t have a colon due to misdiagnosis with ulcerative colitis that turned out to be nutcracker Syndrome. So a few times, especially if I developed a small bowel blockage- I eventually started vomiting contents from my small intestine…. Yes you heard that right! It was Absolutely the worst thing I’ve ever gone through and I’ve been through a lot! Rank that with “recommend to an enemy & burn my computer and assignment” I’ll just fail the class instead … so so bad. Thankfully i was diagnosed with MALS and nutcracker, had symptoms of both along with bladder dysfunction and pelvic congestion that are now resolved as well. I’m so sorry you’ve had the bad feeding tube pain, Mickey! I’ve definitely had that and still need my feeding tube for meds due to cervical instability im still working on… but I get the granuloma and I have CRPS, so I totally empathize! My ileostomy stoma hurts too! Last but not least, my chronic fatigue which I think is worsened by MCAS sucks … it’s definitely a day breaker.. but I am grateful for all the other things I’m recovered from and I’m continuing to work on myself. It’s a vibe dealing with my medical PTSD and fear of food in working to overcome now that I can eat again! I’ll take it and I hope you two get to meet up in person for sure! Thanks for putting this together, y’all are amazing and an inspiration to all! Much love, zebra sisters! 🦓 💖🦓
I love both of you! And have shared your videos with my niece that has had to have a feeding tube. It’s encouraging to see you have a support network- But I would love you to talk to someone older who has EDS - and the life long toll of falling apart. For me I rank finding out at 60 my insides look like 90-95 is sad small falls causing huge injuries needing all new teeth, never thought that was a part of EDS too. and blacking out and breaking hip 2 times in 3 years, and bleeding out from surgeries, muscles exploding after months of subluxation- going to ER and being sent home, not being able to realign and tissues tears caught up on things. But the worst is unrelenting nausea and exhaustion that is debilitating! Pain can be treated but loss of quality of life from exhaustion and nausea, is harder than all the injuries, surgeries etc. Any suggestions? Thanks for your bright lights!!! 💕🦓💕🦓💕🦓💕🦓💕
I don't get dizzy randomly, but I get tremors sometimes for no apparent reason. My blood sugar is always fine, I'm not anxious, or tired or anything. My hands arms and legs just shake 🤷🏻, I find it so embarrassing for some reason maybe because it's a symptom I can't hide like I can nausea or pain
Been on the wrong meds and having chrons and diabetes. Sore joints and sore for day and riping my ass to bits in flare up and not being able to pass wind
Thanks for having me on, Mickey!!
We will absolutely have to do this again!! Love you so much girly!
I agree with Izzy on the dizzy symptom. I’ve had random dizzy spells, and it was to the point that I couldn’t hardly get up and do anything. So, it can be pretty disruptive.
Such an encouragement for anyone dealing with on going health issues. Thank you two!
Omg I love your pain scale! At the doc they ask me my pain scale and I’ll be like “idk 3? “ cause I don’t know what to compare it with 😅
Luckily my amazing momma steps in and she’s like “ when she says 3 it’s a 6” which is way more accurate lol 😂
That's why for Wilderness First Responder training, they tell us to ask it on a scale of 1-10 with 10 being the worst the patient's ever felt, but they also tell us to ask the patient what his/her worst pain was from in order to get an idea of what kind of scale we're working with - for some people, a 10 might just be a paper cut, while for others it could be a broken femur.
A lot of these symptoms seem to be from comorbidities like gastropariesis rather than EDS but was still very fun to watch 😊
Sounds like you've got such good care options over there. Especially for POTS. I was recommended by a cardiologist to drink more water, cut out caffeine & add 6g of salt to my diet daily lol. When I told him I drank 4 litres of water a day with a litre of electrolyte in summer he told me I had a drinking disorder. When I told him eating salt causes painful small bruises on my calves he said "that wouldn't happen" 😂🤦🏽♀️ What I actually have is type 1 diabetes & hyper POTS & still no POTS treatment cuz I can't get the official testing without getting my instability sorted so I can stand but every Dr I've spoken to about my EDS says it's manageable with exercise. 🤦🏽♀️my bones have structurally changed due to the instability that was not investigated for a decade. I was told I imagined my pain from subconscious emotions & was disabled because I chose to avoid those feelings. 😂 Got to love the healthcare expertise. All of this is "recommend to an enemy" & that enemy would be the drs that ignored me from birth.
Your comment is everything! I feel so validated....same experience right down to the T1D! Smh....I can't even believe someone else has gone through a similar torture. I asked a question about lack of money being a symptom lol.....the Drs. they don't help, they seem to dismiss things and they don't care that I am physically unable to work at many points. It's frustrating. I hope you will speak up about your health battles and maybe start a channel or a FB page or something, Good Luck!!
I'm with Mickey I would rather throw up then be nausea all day. I just discovered you 2 channels and I'm so happy t don't feel alone. I'm going to share with my husband too so he can better understand what I go through
I have severe vertigo so Dizziness and losing consciousness is very relatable when an episode hits. Cannot move for hours when it's so severe while other times it's not. 😓
I cannot imagine going through anything else on this category. Vertigo and arthritis is enough. You guys are so strong going through this. 🥰
Mikey, you look so grown up in this video! I suppose we have followed your journey since you were so young so it would make sense :P
That's funny because I told Izzy the same thing, haha!
@@LifewithStripes haha :)
This was extra fun for me being I already follow BOTH of you awesome ladies! And I can relate because I deal with POTS myself. You BOTH are AMAZING! Keep up the inspiring work!
I am with you with the unrelenting nausea. I have been there for almost every day since Thanksgiving.
If you have access to a physician talk about a prescription for sublingual Zofran. It helps a lot with persistent nausea.
Izzy and Mickie! Been watching both your channels for years and I had no idea that you were close. Very neat ❤️ My heart is happy to hear that.
Izzy has been a close friend of mine for over a year! She's amazing!!
@@LifewithStripes Aww that is so great! Sending well wishes to both of ya. 😊
Thanks for the reply. Have a good week ahead.
This was great ladies. I have idiopathic gastroparesis. Bloating is annoying. The worst is stomach pain/nausea/too hot & cold/dry heaves for two days. Then the trip to ER and trying to talk a doc into giving me a couple of small doses of morphine to "reset" me. Half the time they shove me out the door after some iv fluids and no morphine because well there are too many junkies. Can't take Reglan because it gave me tardive dyskinesia. Thanks for the video. You ladies are awesome.
I have gastroparesis as well. Wouldn't wish it on my worst enemy. Hang in there pal!
@@cindimonks5661 Awe thanks. You hang in there too.
Consider asking for a low dose of valium or xanax both will stop stomach spasms. Also having a doctor prescribe this allows for a hospital to administer it with less hesitation bc you are already taking it under a physicians care. Fenergen is also a highly effective antiemetic that can be prescribed by a physician and administered commonly for spastic vomiting in hospitals. I was diagnosed over 10 years ago with HEDS and having the right pharmacopia is essential to getting nausea and vomiting under control. Taking a prescription proton pump inhibitor can help with excessive acid production, as nausea/vomiting begins take benadryl to dry up mucous, use prescription sublingual zofran for nausea, and a prescription antispasmotic like valium to " reset" the system and stop the spasms which will cause you to continuously wretch and heeve. If you do get into one of these episodes a light weight ice pack(bc heavy ones can make nausea worse or can't bare the pressure) on the abdomin it helps create the cooling effect without drinking fluids that will make you vomit longer. The longest episode I had was 3 1/2 years of daily nausea and vomiting, the correct collection of medicine and also self knowledge of when to administer them has made a world of difference. Best of luck to you.
@@Saturns48 Thanks for the tips. I can't take valium. They prescribed it once and it did the exact opposite. Thought my heart was going to explode but I'll look into the others. I take 40mg 2x daily of Omeprazole. I will try the benadryl. I have zofran odt. It helps quite a bit unless I'm at the point of no return. ER docs just don't seem to understand that the patients learn what they need. Thanks again.
This is a really fun video and a fun way to kind of spin our everyday realities :)
Thank you both for sharing your stories with me! I have EDS and I had learned that my dad was the one that I had gotten it from. I have had the one that “ I would want to wish on my enemy, especially if they’re the Devil or the owner of the bowling alley I work at! “ at my work and I just went to the restroom and I sobbed!
I agree that nausea is so horrible, especially when it's to the point where all you can do is lay flat until you throw up. At times I've made myself throw up (not bulimic) just to feel better & I hate throwing up, to me it feels like I'm dying. There's no win win in that situation.
i totally agree with the infusion center one !! i got to lay down but it was still super uncomfortable. i would have to get sticked at LEAST 3 times each (both arms and a hand at the very least)
i dont go to get them anymore (yay random gi pain going away!) but man i don’t miss them
YES the nausea. omfg. i cant even listen to anything when im so nauseous. i would say its a vibe, but totally ironically (also i would rather vomit than be so nauseous)
My worst EDS (classical) issue was a spontaneous dura rupture/CSF leak. It was horrific. My vibe is synesthesia. I have to occasionally alert my coworkers that I'm hallucinating because of it but I deal.
It’s funny how one of Izzy’s doctors said “EDS doesn’t cause joint pain, it only affects your heart”, and one of Mickey’s doctors said “EDS doesn’t affect your blood vessels, it only causes joint problems.”
Unrelenting, unexplained headaches that are completely debilitating. I would rather have my computer crash while writing a term paper. Unless it was a term paper that I had to get an extension on because of crappy health.
Look up cervicogenic headaches and occipital headaches/occipital neuralgia and see if any of those symptoms describe your headaches. Becuase EDS causes hypermobility subluxation of cervical vertebrae causes spasms and inflammation of surrounding muscles and tissues. Seeing a chiropractor to check your neck and occipital ridge might be something to consider. Occipital neuralgia (aka occipital headaches) causes excruciating headaches, pain in the eyes, neck, and face. Chiropractic adjuadjustment are something to consider. The fix is temporary bc the nature of HEDS or Hypermobility spectrum disorder is that you will have subluxations again, but you can get some relief. Best wishes❤
My favorites!!! and I'm in LOVE with this video idea 😂
i loveee this idea LMAO so creative
What about having injuries then not being able to work? Symptom being: lack of money! I don't know how any assistance works once you have a diagnosis in place, but as someone who repeatedly wears the splints, braces and boots then can't do my job...it's torture!!! I also have extreme fatigue and so that's super difficult even for a work-from home job, in addition to wrist/finger issues. It keeps happening and I don't know how to pay for things now.
The lighted headedness is possibly cervicogenic dizziness. This kind of dizziness, light headedness, dull headache is caused by inflamed tissue and subluxation of vertebra and discs in the cervical spine. Anyone who suffers severe headaches should also look up cervicogenic headaches and see if those symptoms ring any bells wear the diagnosis of migraine just doesn't really fit. Best wishes❤
Found your channel through izzys beautiful channel and your awesome and interesting both of you are awesome and beautiful love you two
I love this kind of video! And yes, you and Izzy have to meet up!
Talking about falling, I just stepped out of our truck on my dad’s birthday after we went to eat lunch and then my family dropped me off at my work and I just took two to three steps and boom down I go! There’s was people outside asking me if I was ok and they were kind enough to help me back up and back into the truck because my sister was going to take me to the hospital and get me checked out, unfortunately our hospital doesn’t know what EDS is and the only thing that they could do was take a X-Ray of my knee and put it in a brace that keeps me from bending it and crutches.
Izzy!! I met you in Charleston when Patel, my neurosurgeon spoke with Miss America! Hope you are good girl! Hi Mickie!! 🫶🏼 I was in a wheelchair at the time but those days and my days on TPN and a feeding tube for formula are behind me as well. Thank goodness, I found the root causes to my neurological, GI, bladder and pelvic conditions and the symptoms associated were surgically addressed over the last 3 years. I wanted to share - My worst symptoms with what yall discussed!!
Omg I hate even looking back lol and these are thankfully behind me. I had an OC fusion that corrected my vertigo, dizziness, and severe head rushes or passing out. I’d rank those all with “recommend to an enemy” or “lose my assignment”. Used to, I could have even said “it’s a vibe” on these but I progressed unfortunately.
Also with the distention, unrelenting nausea, dry heaving… YALL, I know this is gross but I don’t have a colon due to misdiagnosis with ulcerative colitis that turned out to be nutcracker Syndrome. So a few times, especially if I developed a small bowel blockage- I eventually started vomiting contents from my small intestine…. Yes you heard that right! It was Absolutely the worst thing I’ve ever gone through and I’ve been through a lot! Rank that with “recommend to an enemy & burn my computer and assignment” I’ll just fail the class instead … so so bad. Thankfully i was diagnosed with MALS and nutcracker, had symptoms of both along with bladder dysfunction and pelvic congestion that are now resolved as well.
I’m so sorry you’ve had the bad feeding tube pain, Mickey! I’ve definitely had that and still need my feeding tube for meds due to cervical instability im still working on… but I get the granuloma and I have CRPS, so I totally empathize! My ileostomy stoma hurts too!
Last but not least, my chronic fatigue which I think is worsened by MCAS sucks … it’s definitely a day breaker.. but I am grateful for all the other things I’m recovered from and I’m continuing to work on myself.
It’s a vibe dealing with my medical PTSD and fear of food in working to overcome now that I can eat again! I’ll take it and I hope you two get to meet up in person for sure! Thanks for putting this together, y’all are amazing and an inspiration to all! Much love, zebra sisters! 🦓 💖🦓
I love both of you! And have shared your videos with my niece that has had to have a feeding tube. It’s encouraging to see you have a support network-
But I would love you to talk to someone older who has EDS - and the life long toll of falling apart.
For me I rank finding out at 60 my insides look like 90-95 is sad small falls causing huge injuries needing all new teeth, never thought that was a part of EDS too.
and blacking out and breaking hip 2 times in 3 years, and bleeding out from surgeries, muscles exploding after months of subluxation- going to ER and being sent home, not being able to realign and tissues tears caught up on things. But the worst is unrelenting nausea and exhaustion that is debilitating! Pain can be treated but loss of quality of life from exhaustion and nausea, is harder than all the injuries, surgeries etc.
Any suggestions?
Thanks for your bright lights!!!
💕🦓💕🦓💕🦓💕🦓💕
no suggestions....hope things are more manageable for you right now.
Waking up from surgery after being intubated, not being able to talk and being in pain is the worst!
Amazing work you gals!
I don't get dizzy randomly, but I get tremors sometimes for no apparent reason. My blood sugar is always fine, I'm not anxious, or tired or anything. My hands arms and legs just shake 🤷🏻, I find it so embarrassing for some reason maybe because it's a symptom I can't hide like I can nausea or pain
What a cool idea
I'm surprised you didn't rank putting your joints back into place. I'm sure you are so used to it when that seems like a huge task to me.
Hey it’s really you Nicki, Stranger long time no hear, lol. Looking awesome ♥️🇨🇦🌏🇺🇦
For me, I HATE, DESPISE, having horrible horrible nausea, but not being able to throw up. It’s bad. It SUCKS.
The chairs are so uncomfortable at the infusion center.
Don't want you to think I'm being rude but I just wondered how your video I saw hospital asking us all to pray for your
Feeling like u need to vomit in public : would recommend to an enemy 😭
Hi this was very interesting
You look so beautiful 💐💐💐
Been on the wrong meds and having chrons and diabetes. Sore joints and sore for day and riping my ass to bits in flare up and not being able to pass wind
I love you been sad I just lost my best friend on February 26 I been crying for hour non stop
I sipped school today to be for myself and I needed some time to cry the funeral is this Friday
How is your sister doing?
Pretty good! Theres lots of updates on instagram if you want more details.
As I said on Izzy's channel. As much as I loved watching the two of you, I just could not watch the hyperextensions(?) you did.
yesss the embarrassment factor of blacking out
IT'S SO EMBARRASSING!!!!