Liquid IV has helped me tremendously with my POTS! It's an electrolyte mix and it got me through a week long trip to Disney World without fainting! The only downside, I would say, is that you can taste the salt, but it's honestly really easy to ignore
I've heard good things about this, thanks for the tip! I will need to give it a try! Electrolyte supplements haven't helped me in the past, due to malabsorption, but it's worth a shot!
How did you get diagnosed at such a young age I am having to figure it all out myself... tell the doctor what I think I have to see if he agrees. I just got diagnosed with EDS at 60.
Oh how I wish I had the funds for these items . Super bummed that I can not get my disability approved. I worked in Pharmacy for almost 20 years so that's irony for yah.
Weird recommendation, but have you looked into Posture collars? They come in all shapes and sizes, and I'd assume you can get custom made ones. Usually used in the BDSM community, but they're often made to be worn for long periods of time if you find a high quality one.
Sorry I'm so late to the game here, thanks for making this video. I was officially diagnosed with hEDS a few months ago about 6 years after I got Me/CFS from mono and my EDS and PoTs symptoms took advantage of my deconditioning. I looked this up in hopes there would be info on how to do things like laundry without help, I'm on the second floor and my shoulders make even carrying my laundry down. I just want to feel a little more independant. :(
I've been using compression calf sleeves (like the kind marathon runners wear) for the past five years, and they've helped me a lot! I have several pairs, and wear them pretty much all the time. My favorite brand is called 2xU. The ones that are mostly spandex feel the best on my skin, although I appreciate the ventilation of the weaved ones a lot during the summer. Calf sleeves do a great job of minimizing the severity of my EDS POTS/dysautonomia. (I also take Mestinon during the day and a small amount of Clonidine at night to manage my EDS POTS/dysautonomia.)
I just found your channel and its blowing my mind. Listening to you describe things and explain things it's like freaky how much it sounds like you are describing my life. A lot of these tips I've learned along my journey, but it's always great to fine some more tips!
I'm a newer soul only about 8-12 years old. I have non diagnosed eds. The won't give me a diagnoses even though my older brother tested negative for vascular eds. They tested my bother first because his lungs collapsed 2 times in one year. They say "I'm too young to have chronic pain so I'm just exaggerating some growing pain" I really, REALLY want to go kick the doctor's hip and say it's just a small growing pain.
I used to hate the liquid IV’s, they only taste okay when cold. My mother made me drink them, and take my medicine as usual. After taking all of those, and doing them daily when needed. I’m doing well, and they taste okay now!
Have you ever considered using a rollator walker? I got one this year and I love it. There's little to no resistance when pushing it and the seat is very comfortable. I used mine for SF pride this year, and it allowed me to sit anywhere at anytime. Added plus, people move out of your way when you're traveling around with a mobility aid, it was like the seas were parting for me haha.
Thank you! I have thought of that, but my shoulders and wrists are so weak and hypermobile that to lean on anything for very long periods of time would really mess me up. I still have a damaged thumb joint from using a cane ten years ago when I had my hip replaced. I know it's a great solution for a lot of people, though! ❤️
Well sum beach...I have had those sleep and clothes issues...I have had POTS my entire life, diagnosed back in 2007.... I never knew the two was associated....Im in Oklahoma too!
@@AngelaHepp all I have is the VA...my doctor is learning about it right alone side me, neither one of us know much but we try....I found vids on here that I plan on showing her...they explain what it's like for me day to day....Check with OU medical in OKC...I saw on one of the POTS websites about them doing a couple of studies
Funny note on the weighted blanket I have PTSD and PoTS so I really really need the weighted blanket however I do also struggle pulling the blanket up because I have osteoarthritis my left shoulder so when i pull it doesn’t go up
I hadn't tried it yet when I made this video, but I have since and it helps me slightly more than the others, but not enough to really make a difference in my symptoms, sadly. 😢
Hi Angie! New subbie here. My 16 year old daughter was recently diagnosed with eds and it's looking like the pots diagnosis will be coming soon. Thank you so much for this video, cant wait to try some of this for her.
I’ve found with Eds I can only sleep on my stomach with a flat pillow under my head. I also cannot sleep on a regular bed. I sleep with a memory foam mattress topper on my floor. I just found it helps my back feel better. I know stomach sleeping is supposed to be bad but it’s the only thing that relieves my pain
I realized not long ago that I started sleeping on my stomach instead of my side or on my hips and without a pillow underneath my head and I don’t wake up as much
Angie Hepp what was the tincture that you took at night called?? I've recently been diagnosed with EDS and I have really restless, painful sleeps. Could you let me know please??
I have my medical marijuana card, so I take a 4:1 CBD:THC tincture at night. My local dispensary ran out of this brand (Paragon Extracts), so I now use a 1:1 tincture (Twisted Extracts) and a full dropper of the 1000mg CBD oil from Nature's Ultra (I share about that here): ua-cam.com/video/-oxzlrYtemo/v-deo.html
My doctor prescribed me a low dose of Clonidine before bed to mitigate my restless, painful sleeps caused by EDS. A couple of my doctors mentioned that its sister drug, Tizanidine, is another option. Clonidine is more common in treating POTS, though, so that's why we opted for that one.
I just found you and wow you sound exactly like me except a little further along in understanding how to help your body. I will be checking more of your videos! Thank you!
Have you ever had to take nebivilol for your pots as I have to but I’m a lot younger than you so maybe that’s why I have it and also when your heart rate goes up or down I can only see white does that happen for you. :)
Also I want to add that while I was on Infuvite which is an infusion of basic minerals & vitamins that we are lacking . Let me tell you it’s a 3 hour infusion and it’s but it’s worth every second . I was actually scheduled to have a port placed because I had gotten down to only 1 vein that we could use . When I was doing the infusion I completely quit fainting . I’ve had broken ribs and broken my shoulder in 2 places from having fainted so many times . It would be so nice if we could get the prescription adult I infuvite prescription at home and do it ourselves through a port . Y’all this is a huge game changer for the pots world . I had to quit getting my infusions because it was costing around $300.00 a week and we just couldn’t do it financially. I also got a loop recorder implanted by my cardiologist .
Hello! Fellow zebra here, this was a great video, got some good tips and its always so nice to dind folks who understand you lol. I also choose to treat with natural methods over the docs pills (unless its really bad and i have to take something stronger) although i mkse my own cannabis and kratom products. Had to learn to make my own meds because i hated what a zombie i was relying on the docs meds and i was still unfiagnosed so i had to find ways to manage. Im certain other EDS folks on here know that fight lol. Thank you for sharing!
Thank you for this video! It is very helpful! I am just learning about my EDS after recovering from Chiari decompression surgery last June and ASMR definitely helps me too💜 🦓 💜
I can't wheel myself in a wheelchair either so I need a power chair as well so I totally get it, on days where I hurt a lot or when my hips don't want to stay in I actually use a walker. I can't use it for a super long time since putting the weight on my shoulders will tend to sublux, but it isn't half as bad as using crutches while walking
I actually bought for my (very long very skinny) neck at the pharmacy store, which in Spain sometimes includes the orthopedic devices, and works wonders. The rest of them seems for any other person who's not in chronic pain, I believe.
I'm glad you found one that works for you. Do you know the brand? I ended up getting an Aspen Vista, which is super adjustable and works perfectly for my long, skinny neck.
Have your doctors ever tried you on Mestinon to treat both your POTS and your digestive motility issues? It's an older medication that EDS researchers have repurposed, since it can treat multiple issues associated with EDS with a single medication. It's been a miracle drug for me. Wondering if others with EDS have tried it out as well.
Yep! I'm on it currently. It's helping a little, but the IV fluids help the most. I've tried the compression sleeves and socks, but they don't help at all and just make my joints sublux. 😔
@@AngelaHepp Glad that the Mestinon is helping you a bit. Are you on the usual 60mg three times per day? I just got moved up to 60mg four times per day, which seems to work well for me. (I'm 6'8" tall and 240 pounds, so I might need extra to account for my body mass.) Nightly Clonidine has helped as well, as it increases blood volume by reducing blood pooling. I take 0.2mg of that before bed, and it also helps me sleep. It treats hyperadrenergic POTS by signalling the body not to release as much norepinephrine and adrenaline into the system, so less of that hits the adrenergic receptors. It also calms the "fight or flight" response, which is tied to those receptors.
Thank you for this!! I never knew about eds untill i met my boyfriend, im doing alot of research and taking notes on how to help him. This helped tremendously thank you!
Omg this was such an informative video. Thank you so much for taking the time to make it . And oh mah gawd I freaking love asmr , that is my go to for relaxation . Karuna Satori is a asmr artist on UA-cam .
Hi Angie, love your videos. I had a few ideas pop in to my head. I have been watching most of your videos your quite a while now, but venture in and out over the years, so forgive me if these are not quite the right match to what you personally experience. So definitely the first one is for a different condition entirely and you being a nurse will probably have a sense already if this first idea would be helpful or not but it is something called a Backpod, it is used by those who experience costochondritis, a condition of the ribs. I'm sure you know about these already but your stillpoint reminded me of the Backpod, and I learned about the Backpod from a girl here on youtube who made a video about it and still uses is for her costochondritis that comes from her Lupus, the vid she made about Backpod is here m.ua-cam.com/video/j3fqDIGYGw0/v-deo.html . Then there is another thing that my mom used to run an office and offer as a service, and I remember she did have one woman come in who had a condition of the joints/muscles where she was always in pain, and she came to use the service for a couple hours of relief. What my mom had was called a Float tank or a sensory deprivation tank. Its used as a meditation tool, and is basically a very large tub with a huge cover over it, only 10 inches of water, you can sit or stand in most designs, and when you lay down in the water, you float like a cork in the water because in the ten inches is 800 lbs of epsom salt dissolved into the water, making it like the dead sea where everything floats. Its usually used for relaxation of mind and body, allowing you to process and let go emotionally. But in the case of the woman I mentioned who had some kind of joint/muscle condition, she was bad enough to just be seeking out a couple hours of relief. I have been blessed to work in holistic health where I have seen so many unique and amazing solutions to things, if I come across any thing more, I will have you in mind and will come back with more.
Hello I was reading an article about an association between EDS, POTS, and MCAS. It's a high level of Tryptase protein. When taking medications that would lower this protein level, people are noticing a great difference. Can you make a video about this?
I have an implanted BARD Powerport and infusions 3 times per week for my POTS. It has helped me maintain my independence and ability to drive and go to the store on my own. In the summer (here in Australia) I need my rollator walker with its seat as I need to be able to sit down anytime I stop walking and would be standing still. I've also found that daily exercise to increase my cardiovascular fitness (horizontal) brings my resting and standing HR down and strengthens my muscles so that holding my joints is not so difficult.
I just got a PICC a couple weeks ago and I get fluids a few times a week. It has been a lifesaver in giving me back some quality of life. I'm so glad your medical team set that up for you! I was doing Physical Therapy, but had to stop because I just got too weak to do the exercises. Hopefully now that I have the regular IV fluids I'll get some strength back and be able to start PT again.
Angie Hepp So glad to hear you got a PICC. That is where I started. The port is so much better for showering and staying clean as you can go dressing free between needling. Infusions allowed me to start exercising again and improve my cardiovascular fitness. Thanks so much for your videos. They help me feel not so alone. Being diagnosed with EDS and POTS as an adult is a strange journey.
I’ve been watching ASMR videos for WAY longer than I’ve known I have EDS! The first time I heard about it I knew immediately what the sensation was...I’ve been experiencing it “out in the wild,” so to speak - very very occasionally - since I was a kid. I always thought of it as “that feeling I get when someone does something nice for me.” So maybe not surprising that my biggest trigger is the “personal attention” type video...and there ARE some VERY weird ones of those out there...but when I need to de-stress the good ones are invaluable. (I’ve also really been getting into Korean cooking ASMR...something about the obvious amount of effort put into those videos hits my triggers!)
Angie Hepp the ones I really like are Cooking Tree and y.na__homecafe. Mesmerizing. And they don’t show their faces so there aren’t a bunch of creeps in the comments!!
Subluxation in EDS occurs because ribs are held in by tendons and strong collagen, which EDS sufferers do not have, or not in correct amounts. This allows the rib to slide around, and when it slides up or "floats", you get subluxation.
Thigh high compression socks have worked best for me but with shoulder issues I’m not sure what would help :( as for pots try lemon perfect. It has electrolytes and vitamin c (the peach raspberry and dragonfruit mango are my favorite) it can be a little tart so you may want to dilute with water
I haven't! I have a Bauerfeind, but I don't wear it because it's puts too much strain on my neck and I end up trading one pain for another. I will look into the one you recommended. Thank you!
I found a lot of relief from weed as well! I’m in Oregon and found it easy (but expensive) to get my card. But now I’m pregnant, so just about everything besides my prenatals are out the door for helping my pain. Doesn’t help that now everything is significantly worse with the relaxin hormone... and tens units never work!
Angie Hepp do you know if any of your children have it as well or show any symptoms yet? I know I started at about 12. And does the sense of constant flaring go away after pregnancy, or does it just get worse during and remain?
My children do show signs, yes. Our EDS specialist says that it is still too early to warrant genetic testing, as puberty has a major effect on the connective tissue. So if they are still showing signs after puberty, we will definitely get them tested. I am proceeding as if they do have it, though, so we can take precautions that they don't injure themselves or put unnecessary strain on their bodies. No trampolines, etc. My symptoms have gotten worse with each pregnancy. My joints have become louder and more painful, tears are happening, my POTS symptoms are all worse, and my GI symptoms are much, much worse.
I have tried a couple, but they haven't been effective at all. I've been getting IV fluid infusions which have helped more than anything lately while we try to figure out if I have MALS (which my EDS specialist strongly suspects).
Yeah, it sometimes takes some experimentations before finding medications that work for EDS POTS. Beta blockers are usually tried first, but I reacted adversely to those. Ivabradine is very similar to beta blockers, but it doesn't lower blood pressure like beta blockers do. Clonidine and Guanfacine calm the sympathetic nervous system (fight or flight response) and lessens tachycardia and stabilizes blood pressure, and also increase blood volume by reducing blood pooling in the limbs. Mestinon treats EDS POTS by stimulating the vagus nerve, which also allows it to treat the gastroparesis or digestive motility issues that often also accompany EDS. I personally take Clonidine and Mestinon, and have had excellent results with them treating my EDS issues.
What doctors do you see in Oklahoma for EDS and POTS? I am from Oklahoma, but I will be living in Virginia for another four years. I am afraid I won't find good doctors when my husband retires and we go back to Oklahoma. It will be important because my kids also have EDS and POTS and we all have many medical appointments.
I see Dr. David Chorley in Tulsa for EDS. Jacey Thomson is a fabulous EDS-savvy PT in Claremore. I haven't found a local POTS specialist, sadly. I had to go out of state for my MALS surgery.
Have you tried the supplements on the Deborah Cusack protocol? I have been using most of them for 4+ years now. The protocol has made a huge difference in my EDS symptoms.
Yes, I've focused heavily on diet, nutrition, toxin-free living, etc, for the past twelve years. I have no doubt I'd be a lot worse off if I wasn't already doing all of that.
Thank you so much for sharing these helpful tips! I don't have my formal diagnosis yet, but am certain this is what's been going on with my chronic illness journey. I hope your day is low-pain and stress.
I have tried two soft cervical collars I ordered on Amazon, but my neck is so long (thanks to my Marfanoid habitus), that they do nothing for me. 😔 I've yet to find a collar that's tall enough for my giraffe neck, lol! 🦒
No. It's a genetic mutation, present from birth, like Downs Syndrome. It is common to experience rheumatoid arthritis and other autoimmune conditions along with EDS, though. But EDS it not itself an autoimmune illness.
Hey! My mom and I happened to find your channel and watched your video. It was like watching a video of myself. I have EDS and POTS as well, which you know isn't fun in the least. My main thing was your explanation of compression socks, because I actually use those and they do work for me, but there's a catch. I used to use full ones, but the ankle dislocations were unbearable, so I got ankle compression sleeves, then foot compression sleeves. They form a complete compression, but only on the foot and calf, and don't even lightly compress my ankles. They don't touch. So, that was my workaround for that problem. I luckily have more function in my shoulders, but they are constantly dislocated so it's no bueno. I use forearm crutches to walk because my lower half is my problem area. Pillows for life. When you said that about holding the hair thing up, I laughed out lout. I hate doing things where I have to hold something up for extended periods; it's really painful and exhausting. Anyway, I need to make a hacks video! I've developed some things of my own!
That sounds like I great hack! I've seen the compression calf sleeves, but I never knew that had just foot compression socks. Cool! It's also neat to know I'm not the only one whose ankles sublux from socks, LOL! My tennis shoes do the same thing. I just ordered some lighter, stretch-knit ones to see if they're any better.
@@AngelaHepp Glad this could be of use! Here are links to those items so you can look at them in case you want to try them: www.amazon.com/gp/product/B01N01YZPP/ www.amazon.com/gp/product/B01M2B4FDG/ Your shoulder complication might make it difficult to pull them on, but what I do is roll them up beforehand, then unroll them onto my legs instead of pulling them on. Less stress on the shoulders and elbows. They are lifesavers for me, because I don't use a wheelchair (might get one for future use), and use forearm crutches to walk. Without these, I can't stand up for more than a few seconds unless it's cold. With the cold, my vessels constrict too much and it causes problems for my extremities and blood flow. As for shoes, I am super complicated because for one, I hate shoes, but need them during daylight hours because I'm violently sensitive to light (porphyria); for another thing, I have extremely wide feet (size 9 Men's EEEEEE - AKA sasquatch), so finding fitting shoes is a chore in and of itself--most cost over $200. How I got over the ankle thing with shoes is kind of funny. My mom found some relatively inexpensive EEEE-wide shoes (they're a bit narrow, but they'll do), and I removed the laces because I have a hard time with those. I added velcro to them so I don't have to worry about tying the dang things, and they don't really bother my ankles because that part is low enough not to touch them. Separately, I purchased combat boots and cut the bottoms off (they can't fit my feet, anyway), just for the appearance. I attach those to the tops of the shoes and they act as spats, but are mobile. I use ankle braces for when I am having issues with dislocations, though. Loose shoes are a definite. Ankle braces need to be picked out by you, because I find they are hit-and-miss. Find ones that are comfy, hold the ankle stead, but don't spread the joints or you'll be miserable! I'm actually really excited to meet someone with the same complications as I have. Granted, I have a couple other extremely rare conditions (doctors go nuts over me because of all that), but meeting more people who understand that I'm not lazy, I'm falling apart, is a nice feeling.
@@AngelaHepp Oh and I almost forgot! I actually use pink Himalayan salt to ease POTS. A lot of the supplements out there are plant-based and I don't eat plants.
Thank you! I take Himalayan pink salt in water as well, about 8-10 grams a day. It helps some, but mostly when I keep up with my IV fluid infusions, too.
Sorry you have that, but glad that you have a diagnosis. Are they going to run you through a tilt table test? That's how they diagnosed my POTS, which eventually led to my hEDS diagnosis.
If you have dysautonomia, yes, most definitely. I have poor temperature regulation and go from freezing cold to sweating in minutes. I also sweat buckets at night, and wake up with soaked pajamas.
TIMESTAMPS:
1:19 Mattress and pillows
3:55 Clothing and undergarments
5:56 2-minute hair hack
7:57 Meds & supplements
9:45 Heat therapy
10:21 Compression socks and electrolytes
12:43 Car hacks
13:18 Braces and splints
18:56 Mobility aids
23:25 ASMR
26:00 Cooking and food prep
27:19 Weighted blanket
27:46 Bedtime routine
Liquid IV has helped me tremendously with my POTS! It's an electrolyte mix and it got me through a week long trip to Disney World without fainting! The only downside, I would say, is that you can taste the salt, but it's honestly really easy to ignore
I've heard good things about this, thanks for the tip! I will need to give it a try! Electrolyte supplements haven't helped me in the past, due to malabsorption, but it's worth a shot!
You must have great doctors to help support your needs.
I agree with this! Liquid IV is the only one that's honestly helped me a lot!!
Im 16 and i got diagnosed with eds, pots, and pcos a few months ago and its been really hard to cope! I really appreciate this video
That's so young to be diagnosed! I hope you have been able to deal with it ♥️♥️
How did you get diagnosed at such a young age I am having to figure it all out myself... tell the doctor what I think I have to see if he agrees. I just got diagnosed with EDS at 60.
My partner suffers from EDS and POTS. I’m gonna try some of these out with him so he’s in less pain :)) x
I hope they help him! ❤️
Oh how I wish I had the funds for these items . Super bummed that I can not get my disability approved. I worked in Pharmacy for almost 20 years so that's irony for yah.
Weird recommendation, but have you looked into Posture collars? They come in all shapes and sizes, and I'd assume you can get custom made ones.
Usually used in the BDSM community, but they're often made to be worn for long periods of time if you find a high quality one.
I just found you, and I'm late to the party, but Nuun helps my POTS and is a sugar free electrolyte!
I'm so glad it helped you! It did nothing for me, but it did taste yummy. 😊
I didn't try it I'll try it
Thanks for sharing. Just diagnosed with EDS and trying to learn all I can!
Sorry I'm so late to the game here, thanks for making this video. I was officially diagnosed with hEDS a few months ago about 6 years after I got Me/CFS from mono and my EDS and PoTs symptoms took advantage of my deconditioning. I looked this up in hopes there would be info on how to do things like laundry without help, I'm on the second floor and my shoulders make even carrying my laundry down. I just want to feel a little more independant. :(
I've been using compression calf sleeves (like the kind marathon runners wear) for the past five years, and they've helped me a lot! I have several pairs, and wear them pretty much all the time. My favorite brand is called 2xU. The ones that are mostly spandex feel the best on my skin, although I appreciate the ventilation of the weaved ones a lot during the summer. Calf sleeves do a great job of minimizing the severity of my EDS POTS/dysautonomia. (I also take Mestinon during the day and a small amount of Clonidine at night to manage my EDS POTS/dysautonomia.)
Could you make a video on why you no longer see a chiropractor?
I just found your channel and its blowing my mind. Listening to you describe things and explain things it's like freaky how much it sounds like you are describing my life.
A lot of these tips I've learned along my journey, but it's always great to fine some more tips!
I'm a newer soul only about 8-12 years old. I have non diagnosed eds.
The won't give me a diagnoses even though my older brother tested negative for vascular eds. They tested my bother first because his lungs collapsed 2 times in one year. They say "I'm too young to have chronic pain so I'm just exaggerating some growing pain" I really, REALLY want to go kick the doctor's hip and say it's just a small growing pain.
You need a new doctor. The "too young for chronic pain" excuse is what doctors say when they're being lazy and completely ignorant of EDS.
Keep using your voice!
I used to hate the liquid IV’s, they only taste okay when cold. My mother made me drink them, and take my medicine as usual. After taking all of those, and doing them daily when needed. I’m doing well, and they taste okay now!
I started using Liquid IV and it actually works a lot better from me than the Nuun or Salt Stick Vitassium. Probably because of the sugar.
Angie Hepp
Totally, I take medicine and liquid IVS a lot.
Have you ever considered using a rollator walker? I got one this year and I love it. There's little to no resistance when pushing it and the seat is very comfortable. I used mine for SF pride this year, and it allowed me to sit anywhere at anytime. Added plus, people move out of your way when you're traveling around with a mobility aid, it was like the seas were parting for me haha.
Thank you! I have thought of that, but my shoulders and wrists are so weak and hypermobile that to lean on anything for very long periods of time would really mess me up. I still have a damaged thumb joint from using a cane ten years ago when I had my hip replaced. I know it's a great solution for a lot of people, though! ❤️
Maybe I should bite the bullet and get a rollator...the amount of dodging *I* have to do when using my cane drives me NUTS!!!
Well sum beach...I have had those sleep and clothes issues...I have had POTS my entire life, diagnosed back in 2007.... I never knew the two was associated....Im in Oklahoma too!
Hello fellow Okie! Have you found a doctor to help manage your POTS? I still haven't. 😢
@@AngelaHepp all I have is the VA...my doctor is learning about it right alone side me, neither one of us know much but we try....I found vids on here that I plan on showing her...they explain what it's like for me day to day....Check with OU medical in OKC...I saw on one of the POTS websites about them doing a couple of studies
Funny note on the weighted blanket I have PTSD and PoTS so I really really need the weighted blanket however I do also struggle pulling the blanket up because I have osteoarthritis my left shoulder so when i pull it doesn’t go up
I enjoy asmr, though I've yet to get the tingles. I'm about to go search for my best pairing.
Liquid IV has also helped my POTS a lot
I hadn't tried it yet when I made this video, but I have since and it helps me slightly more than the others, but not enough to really make a difference in my symptoms, sadly. 😢
Hi Angie! New subbie here. My 16 year old daughter was recently diagnosed with eds and it's looking like the pots diagnosis will be coming soon. Thank you so much for this video, cant wait to try some of this for her.
I’ve found with Eds I can only sleep on my stomach with a flat pillow under my head. I also cannot sleep on a regular bed. I sleep with a memory foam mattress topper on my floor. I just found it helps my back feel better. I know stomach sleeping is supposed to be bad but it’s the only thing that relieves my pain
Whatever works for you! ❤️
I realized not long ago that I started sleeping on my stomach instead of my side or on my hips and without a pillow underneath my head and I don’t wake up as much
Thank you so much. I love the “low on spoons” t-shirt idea. It is a great idea to let my family know when I am having a hard day.
Great video!
Yes, I love the t shirt idea! I've created a bunch of fun Spoonie designs that I love to wear: Www.Teespring.com/stores/hope-essentials
Angie Hepp what was the tincture that you took at night called?? I've recently been diagnosed with EDS and I have really restless, painful sleeps. Could you let me know please??
I have my medical marijuana card, so I take a 4:1 CBD:THC tincture at night. My local dispensary ran out of this brand (Paragon Extracts), so I now use a 1:1 tincture (Twisted Extracts) and a full dropper of the 1000mg CBD oil from Nature's Ultra (I share about that here): ua-cam.com/video/-oxzlrYtemo/v-deo.html
My doctor prescribed me a low dose of Clonidine before bed to mitigate my restless, painful sleeps caused by EDS. A couple of my doctors mentioned that its sister drug, Tizanidine, is another option. Clonidine is more common in treating POTS, though, so that's why we opted for that one.
I just found you and wow you sound exactly like me except a little further along in understanding how to help your body. I will be checking more of your videos! Thank you!
Have you ever had to take nebivilol for your pots as I have to but I’m a lot younger than you so maybe that’s why I have it and also when your heart rate goes up or down I can only see white does that happen for you. :)
Compression socks help more with blood pooling.
Yep! But as I mentioned in the video, I can't use them because of my EDS. They make my shoulders, fingers, and ankles sublux since they're so tight.
Also I want to add that while I was on Infuvite which is an infusion of basic minerals & vitamins that we are lacking . Let me tell you it’s a 3 hour infusion and it’s but it’s worth every second . I was actually scheduled to have a port placed because I had gotten down to only 1 vein that we could use . When I was doing the infusion I completely quit fainting . I’ve had broken ribs and broken my shoulder in 2 places from having fainted so many times . It would be so nice if we could get the prescription adult I infuvite prescription at home and do it ourselves through a port . Y’all this is a huge game changer for the pots world . I had to quit getting my infusions because it was costing around $300.00 a week and we just couldn’t do it financially. I also got a loop recorder implanted by my cardiologist .
Hello! Fellow zebra here, this was a great video, got some good tips and its always so nice to dind folks who understand you lol. I also choose to treat with natural methods over the docs pills (unless its really bad and i have to take something stronger) although i mkse my own cannabis and kratom products. Had to learn to make my own meds because i hated what a zombie i was relying on the docs meds and i was still unfiagnosed so i had to find ways to manage. Im certain other EDS folks on here know that fight lol. Thank you for sharing!
Thank you for this video! It is very helpful! I am just learning about my EDS after recovering from Chiari decompression surgery last June and ASMR definitely helps me too💜 🦓 💜
I have pots and struggle badly with muscle tension and pain, anxiety, working, and if anyone wants to message me please do🥺🥺
Hey jurnee. I hope your are okay
Body Armour is what I drink and it's perfect. I pair it with a Flintstones chewable vitamin
Omg I have same issue with thermostat, /tempurature...
And I've had that still point inducer for over 15yrs. Lifesaving for that occipital neck pain!
If you like asmr you might like 8D music with headphones on.
I'll have to check that out! Thank you!
I have found Asmr has been amazing for my mental health and sleep which in turn helps my muscle tension
That's wonderful! I find it very helpful, too.
I agree with you 100% it is really soothing to the entire body
I can't wheel myself in a wheelchair either so I need a power chair as well so I totally get it, on days where I hurt a lot or when my hips don't want to stay in I actually use a walker. I can't use it for a super long time since putting the weight on my shoulders will tend to sublux, but it isn't half as bad as using crutches while walking
Weighted blankets are too heavy for me but I find a heavy throw is enough for me
I actually bought for my (very long very skinny) neck at the pharmacy store, which in Spain sometimes includes the orthopedic devices, and works wonders. The rest of them seems for any other person who's not in chronic pain, I believe.
I'm glad you found one that works for you. Do you know the brand? I ended up getting an Aspen Vista, which is super adjustable and works perfectly for my long, skinny neck.
Have your doctors ever tried you on Mestinon to treat both your POTS and your digestive motility issues? It's an older medication that EDS researchers have repurposed, since it can treat multiple issues associated with EDS with a single medication. It's been a miracle drug for me. Wondering if others with EDS have tried it out as well.
Yep! I'm on it currently. It's helping a little, but the IV fluids help the most. I've tried the compression sleeves and socks, but they don't help at all and just make my joints sublux. 😔
@@AngelaHepp Glad that the Mestinon is helping you a bit. Are you on the usual 60mg three times per day? I just got moved up to 60mg four times per day, which seems to work well for me. (I'm 6'8" tall and 240 pounds, so I might need extra to account for my body mass.)
Nightly Clonidine has helped as well, as it increases blood volume by reducing blood pooling. I take 0.2mg of that before bed, and it also helps me sleep. It treats hyperadrenergic POTS by signalling the body not to release as much norepinephrine and adrenaline into the system, so less of that hits the adrenergic receptors. It also calms the "fight or flight" response, which is tied to those receptors.
Thank you for this!! I never knew about eds untill i met my boyfriend, im doing alot of research and taking notes on how to help him. This helped tremendously thank you!
You're most welcome! I'm so glad it was helpful. And I KNOW that means the world to him.
Omg this was such an informative video. Thank you so much for taking the time to make it . And oh mah gawd I freaking love asmr , that is my go to for relaxation . Karuna Satori is a asmr artist on UA-cam .
You're most welcome! Yes, ASMR is the BEST!
I have multiple sclerosis since 2003. I just got diagnosed with pots syndrome 3 weeks ago..
Thank you Angie. Wish you get rid off your soreness.
Hi just a thought but I think explaining the symptoms and consequences of subluxation ^^
Would be an interesting video
Hi Angie, love your videos. I had a few ideas pop in to my head. I have been watching most of your videos your quite a while now, but venture in and out over the years, so forgive me if these are not quite the right match to what you personally experience. So definitely the first one is for a different condition entirely and you being a nurse will probably have a sense already if this first idea would be helpful or not but it is something called a Backpod, it is used by those who experience costochondritis, a condition of the ribs. I'm sure you know about these already but your stillpoint reminded me of the Backpod, and I learned about the Backpod from a girl here on youtube who made a video about it and still uses is for her costochondritis that comes from her Lupus, the vid she made about Backpod is here m.ua-cam.com/video/j3fqDIGYGw0/v-deo.html . Then there is another thing that my mom used to run an office and offer as a service, and I remember she did have one woman come in who had a condition of the joints/muscles where she was always in pain, and she came to use the service for a couple hours of relief. What my mom had was called a Float tank or a sensory deprivation tank. Its used as a meditation tool, and is basically a very large tub with a huge cover over it, only 10 inches of water, you can sit or stand in most designs, and when you lay down in the water, you float like a cork in the water because in the ten inches is 800 lbs of epsom salt dissolved into the water, making it like the dead sea where everything floats. Its usually used for relaxation of mind and body, allowing you to process and let go emotionally. But in the case of the woman I mentioned who had some kind of joint/muscle condition, she was bad enough to just be seeking out a couple hours of relief. I have been blessed to work in holistic health where I have seen so many unique and amazing solutions to things, if I come across any thing more, I will have you in mind and will come back with more.
Thank you for the suggestions! I will look into the back pod and the float tank sounds amazing!
Hello I was reading an article about an association between EDS, POTS, and MCAS. It's a high level of Tryptase protein. When taking medications that would lower this protein level, people are noticing a great difference. Can you make a video about this?
I have an implanted BARD Powerport and infusions 3 times per week for my POTS. It has helped me maintain my independence and ability to drive and go to the store on my own. In the summer (here in Australia) I need my rollator walker with its seat as I need to be able to sit down anytime I stop walking and would be standing still. I've also found that daily exercise to increase my cardiovascular fitness (horizontal) brings my resting and standing HR down and strengthens my muscles so that holding my joints is not so difficult.
I just got a PICC a couple weeks ago and I get fluids a few times a week. It has been a lifesaver in giving me back some quality of life. I'm so glad your medical team set that up for you! I was doing Physical Therapy, but had to stop because I just got too weak to do the exercises. Hopefully now that I have the regular IV fluids I'll get some strength back and be able to start PT again.
Angie Hepp So glad to hear you got a PICC. That is where I started. The port is so much better for showering and staying clean as you can go dressing free between needling. Infusions allowed me to start exercising again and improve my cardiovascular fitness. Thanks so much for your videos. They help me feel not so alone. Being diagnosed with EDS and POTS as an adult is a strange journey.
I’ve been watching ASMR videos for WAY longer than I’ve known I have EDS! The first time I heard about it I knew immediately what the sensation was...I’ve been experiencing it “out in the wild,” so to speak - very very occasionally - since I was a kid. I always thought of it as “that feeling I get when someone does something nice for me.” So maybe not surprising that my biggest trigger is the “personal attention” type video...and there ARE some VERY weird ones of those out there...but when I need to de-stress the good ones are invaluable. (I’ve also really been getting into Korean cooking ASMR...something about the obvious amount of effort put into those videos hits my triggers!)
Oooh, those sound neat! I'll have to check them out!
Angie Hepp the ones I really like are Cooking Tree and y.na__homecafe. Mesmerizing. And they don’t show their faces so there aren’t a bunch of creeps in the comments!!
i think one of rib subluxes alot but i dont get how ribs sublux
Subluxation in EDS occurs because ribs are held in by tendons and strong collagen, which EDS sufferers do not have, or not in correct amounts. This allows the rib to slide around, and when it slides up or "floats", you get subluxation.
Thigh high compression socks have worked best for me but with shoulder issues I’m not sure what would help :( as for pots try lemon perfect. It has electrolytes and vitamin c (the peach raspberry and dragonfruit mango are my favorite) it can be a little tart so you may want to dilute with water
I love gentlewhispering’s ASMR. It’s been so comforting and almost like meditation.
I'll check it out! I love the whispering, too. Tapping and brushing are big triggers for me as well.
Angie Hepp yes! I LOVE brushing. Have you listened to keyboard videos? You might like that. Lots of tapping.
Arnicare for pain is great.
For your shoulder, have you tried a Sulley brace?
I haven't! I have a Bauerfeind, but I don't wear it because it's puts too much strain on my neck and I end up trading one pain for another. I will look into the one you recommended. Thank you!
I found a lot of relief from weed as well! I’m in Oregon and found it easy (but expensive) to get my card. But now I’m pregnant, so just about everything besides my prenatals are out the door for helping my pain. Doesn’t help that now everything is significantly worse with the relaxin hormone... and tens units never work!
Yes, mine got SO much worse with each pregnancy. And I agree, TENS never helped me either.
Angie Hepp do you know if any of your children have it as well or show any symptoms yet? I know I started at about 12. And does the sense of constant flaring go away after pregnancy, or does it just get worse during and remain?
My children do show signs, yes. Our EDS specialist says that it is still too early to warrant genetic testing, as puberty has a major effect on the connective tissue. So if they are still showing signs after puberty, we will definitely get them tested. I am proceeding as if they do have it, though, so we can take precautions that they don't injure themselves or put unnecessary strain on their bodies. No trampolines, etc. My symptoms have gotten worse with each pregnancy. My joints have become louder and more painful, tears are happening, my POTS symptoms are all worse, and my GI symptoms are much, much worse.
Hi Angie I was just wondering if you take any medicine for your pots?
I have tried a couple, but they haven't been effective at all. I've been getting IV fluid infusions which have helped more than anything lately while we try to figure out if I have MALS (which my EDS specialist strongly suspects).
Yeah, it sometimes takes some experimentations before finding medications that work for EDS POTS. Beta blockers are usually tried first, but I reacted adversely to those. Ivabradine is very similar to beta blockers, but it doesn't lower blood pressure like beta blockers do. Clonidine and Guanfacine calm the sympathetic nervous system (fight or flight response) and lessens tachycardia and stabilizes blood pressure, and also increase blood volume by reducing blood pooling in the limbs. Mestinon treats EDS POTS by stimulating the vagus nerve, which also allows it to treat the gastroparesis or digestive motility issues that often also accompany EDS. I personally take Clonidine and Mestinon, and have had excellent results with them treating my EDS issues.
What doctors do you see in Oklahoma for EDS and POTS? I am from Oklahoma, but I will be living in Virginia for another four years. I am afraid I won't find good doctors when my husband retires and we go back to Oklahoma. It will be important because my kids also have EDS and POTS and we all have many medical appointments.
I see Dr. David Chorley in Tulsa for EDS. Jacey Thomson is a fabulous EDS-savvy PT in Claremore. I haven't found a local POTS specialist, sadly. I had to go out of state for my MALS surgery.
Have you tried the supplements on the Deborah Cusack protocol? I have been using most of them for 4+ years now. The protocol has made a huge difference in my EDS symptoms.
Yes, I've focused heavily on diet, nutrition, toxin-free living, etc, for the past twelve years. I have no doubt I'd be a lot worse off if I wasn't already doing all of that.
Thank you so much for sharing these helpful tips! I don't have my formal diagnosis yet, but am certain this is what's been going on with my chronic illness journey. I hope your day is low-pain and stress.
Thank you so much! I'm glad you enjoyed the video. I hope you get answers soon! ❤️
do you have a video where you describe your symptoms from EDS and POTS
Yep! They're in my Chronic Illness playlist. 😊
❤️🌼
Have you tried an inflatable neck brace for both genders all sizes?
I have tried two soft cervical collars I ordered on Amazon, but my neck is so long (thanks to my Marfanoid habitus), that they do nothing for me. 😔 I've yet to find a collar that's tall enough for my giraffe neck, lol! 🦒
I put NUNN tabs in my Selzer. Tastes good and lots of electrolytes for pots
They do taste yummy! Unfortunately, they didn't help my POTS at all. 😭
I just have a question is Eds a rheumatologist sickness ?
No. It's a genetic mutation, present from birth, like Downs Syndrome. It is common to experience rheumatoid arthritis and other autoimmune conditions along with EDS, though. But EDS it not itself an autoimmune illness.
Hi pretty:)
You can’t be older than 29.
Thank you. 😊 I was actually 36 in this video.
SO helpful. Thank you!
You're most welcome! I'm glad you enjoyed the video.
Hey! My mom and I happened to find your channel and watched your video. It was like watching a video of myself. I have EDS and POTS as well, which you know isn't fun in the least. My main thing was your explanation of compression socks, because I actually use those and they do work for me, but there's a catch. I used to use full ones, but the ankle dislocations were unbearable, so I got ankle compression sleeves, then foot compression sleeves. They form a complete compression, but only on the foot and calf, and don't even lightly compress my ankles. They don't touch. So, that was my workaround for that problem. I luckily have more function in my shoulders, but they are constantly dislocated so it's no bueno. I use forearm crutches to walk because my lower half is my problem area. Pillows for life. When you said that about holding the hair thing up, I laughed out lout. I hate doing things where I have to hold something up for extended periods; it's really painful and exhausting.
Anyway, I need to make a hacks video! I've developed some things of my own!
That sounds like I great hack! I've seen the compression calf sleeves, but I never knew that had just foot compression socks. Cool! It's also neat to know I'm not the only one whose ankles sublux from socks, LOL! My tennis shoes do the same thing. I just ordered some lighter, stretch-knit ones to see if they're any better.
@@AngelaHepp Glad this could be of use!
Here are links to those items so you can look at them in case you want to try them:
www.amazon.com/gp/product/B01N01YZPP/
www.amazon.com/gp/product/B01M2B4FDG/
Your shoulder complication might make it difficult to pull them on, but what I do is roll them up beforehand, then unroll them onto my legs instead of pulling them on. Less stress on the shoulders and elbows.
They are lifesavers for me, because I don't use a wheelchair (might get one for future use), and use forearm crutches to walk. Without these, I can't stand up for more than a few seconds unless it's cold. With the cold, my vessels constrict too much and it causes problems for my extremities and blood flow.
As for shoes, I am super complicated because for one, I hate shoes, but need them during daylight hours because I'm violently sensitive to light (porphyria); for another thing, I have extremely wide feet (size 9 Men's EEEEEE - AKA sasquatch), so finding fitting shoes is a chore in and of itself--most cost over $200.
How I got over the ankle thing with shoes is kind of funny. My mom found some relatively inexpensive EEEE-wide shoes (they're a bit narrow, but they'll do), and I removed the laces because I have a hard time with those. I added velcro to them so I don't have to worry about tying the dang things, and they don't really bother my ankles because that part is low enough not to touch them. Separately, I purchased combat boots and cut the bottoms off (they can't fit my feet, anyway), just for the appearance. I attach those to the tops of the shoes and they act as spats, but are mobile. I use ankle braces for when I am having issues with dislocations, though. Loose shoes are a definite. Ankle braces need to be picked out by you, because I find they are hit-and-miss. Find ones that are comfy, hold the ankle stead, but don't spread the joints or you'll be miserable!
I'm actually really excited to meet someone with the same complications as I have. Granted, I have a couple other extremely rare conditions (doctors go nuts over me because of all that), but meeting more people who understand that I'm not lazy, I'm falling apart, is a nice feeling.
@@AngelaHepp Oh and I almost forgot! I actually use pink Himalayan salt to ease POTS. A lot of the supplements out there are plant-based and I don't eat plants.
Thank you! I take Himalayan pink salt in water as well, about 8-10 grams a day. It helps some, but mostly when I keep up with my IV fluid infusions, too.
@@AngelaHepp Yeah, it's rough! Not fun having super rare disorders, for sure.
Thank you❤️🍀
You're welcome! Thank you for watching! ❤️
I got diagnosed with Hypermobility type EDS over the holidays. Still trying to get diagnosed with POTS. thank you for the hacks.
You're welcome. I'm glad you found answers, but so sorry you're having to experience these conditions. 😢
Sorry you have that, but glad that you have a diagnosis. Are they going to run you through a tilt table test? That's how they diagnosed my POTS, which eventually led to my hEDS diagnosis.
Is sweating a part of this hun
If you have dysautonomia, yes, most definitely. I have poor temperature regulation and go from freezing cold to sweating in minutes. I also sweat buckets at night, and wake up with soaked pajamas.
I only have eds but find I have horrendous sweats
@@AngelaHepp Have they tried you on Clonidine to treat your night sweats? It can also treat POTS, migraines, sleep issues, pain, and other issues.
If you have E.D.S don't worry about it I have it too I'm 9 years old and I hope I get better 😰😨😪😓😢😥😭😵🤒🤕😴
I hope your better now