Living With EDS & POTS | My Medication, Braces & Splints!
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- Опубліковано 16 сер 2024
- Living With EDS /HSD & POTS | My Medication, Braces & Splints!
These are the medications i take for pots and ehlers danlos syndrome / hypermobility spectrum disorder. & I also show my braces, supports and ring splints!
Timestamps!
Medication- 00:41
Braces & Splints- 07:42
CMC joint brace: amzn.to/3C7La35
FAQ
I have hypermobile Ehlers Danlos Syndrome, autonomic dysfunction- including Postural Orthostatic Tachycardia Syndrome, cyclical vomiting syndrome, mast cell activation syndrome and myalgic encephalomyelitis.
I'm also a wheelchair and catheter user.
Time stamps!
Medication: 00:41
Braces & Splints: 7:42
I have EDS as well (Hey fellow Zebra!) and I've found that custom splints have been the best route for me, because my joints are so hypermobile and can bend in unexpected directions, many ready-made products don't always provide the best supports or fit closely enough in the right places. I've been working with a hand specialist who is able to fabricate and order custom equipment, and would 100% recommend it for people who have had issues with subluxations/dislocations and have wasted a lot of money on over-the-counter solutions, it's more expensive and time-intensive, but the end results are worth it!
Thank you for your recommendation! My ring splints were made to fit me & my hand braces are a mouldable plastic and have straps, so I do think they work very well for me already, but I’m sure a hand specialist would be great for a lot of people if they are able to see one :)
Thank you Georgina for sharing your journey with us and educating us along the way! 💛🧡❤
Of course! Thanks for watching!
You're really inspirational and I have some disabilities myself and you're quite the good example on how to be so kind and let illness bring out the best in oneself. The recent clip on Diaper Don was truly classy, IMO. Very kind. In my Church, they teach to be kind to people even if they would not be if they were in your shoes. I don't mean be a pushover. Just magnanemous.
@@josephpacetexas thank you so much, Joseph! Your Church sounds great :)
Evabelle jewellery silver splints are bombbbb, it’s near impossible to get name brand silver ring splints in New Zealand so that shop has been a life saver for me
Glad they’ve been helpful!
Thank you so much for this video! Im in the US & struggle to find the right Dr to see for my EDS. My thumbs are the worst! The exact spot that you are describing...I can't do anything without them popping out of joint or dislocating. I'm in constant pain after & can't even use them. I feel like your video has given me some direction....so again I thank you! 😊💗
You're welcome! Try to find the thumb braces online if you can! And EDS is often treated on a symptom basis, so a rheumatologist or physiotherapist could be helpful with joint problems
@@GeorginasJourney Thanks I will ask my primary care for a referral.
I like your videos...your way of explanation.... softness in voice & simplicity ... More power to you 🧡
Sanu Safalya thank you!
Thanks for the video. Good to see you back. Hope you are well. It's a hard road that we travel but we travel together. Take care 😎👍
Finnroo Home Brewing thank you so much!
LOVE YOU!
Izzy Kornblau love you too! Collab sometime soon? 😂 How busy are you after the August exam?
thank you, thank you!
You're welcome!
I recommend salt stick vitassium to anyone with POTS! It helps me so much more than atenolol (though I take that too). My quality of life improved so much once I started taking it twice a day. I know it won’t help everyone but it’s worth a try!
Also I feel you on dislocating thumbs when pulling pants up 😂 whenever it happens I’m like really???
Fiona M I didn’t have any success with salt tablets or increased salt, but I’m so glad it’s helped you! Crazy how people with the same/similar conditions can vary so much!
It’s amazing how much awareness you and Izzy are both bringing to E.D.S I’m super curious as to if either of you have had genetic testing done
mine is classical COL5A2 type I got my testing through Invitae from my cardiologist
Bethany S that’s so interesting! I haven’t and I don’t think Izzy has either! Do you mind me asking what country you’re from? I know we typically don’t do as much genetic testing here as the US due to how our health system is funded, but I would like to have it done! A lot of my doctors think my type seems like classical due to my tissue fragility, but I’ve not actually been tested
I’m from America invitae has an international number you can use they were super fast they send the test in the mail then you just mail back a blood or saliva sample they also send the results to your dr the out of pocket cost is only $250 American dollars
Bethany S it’s saying I will need pre-genetic testing counselling so only a healthcare provider can order it
I know they offer genetic counseling I’m not sure what their international policy is for it I’d try contacting your primary care physician or a dr you trust to order it for you I hope you’re able to get access to it everyone deserves the right to have affordable genetic testing good luck Georgina 💕🙏🏻
Bethany S thank you, I contacted them and it’s only available to people is America and Canada they said
Wishing you all the best Georgina! Respect!
John D. Thank you so much!
Very helpful! I’ve literally just uploaded my EDS diagnosis story
Small and Strong ive just subscribed! Looking forward to catching up on your videos!
Great video, Georgie! Thanks so much! xxxxxxxx
Penelope Polins née Meyer thank you! I’m glad you liked it! xxxx
Ondanzatron has improved my quality of life SO much I’m so glad you get to use it!!
sophie louise thank you! I just feel so bad as I know there’ll be a lot of people who need it, but won’t be able to access it 😌
Georgina's Journey thanks for educating me on that, it’s much easier to access in the US. It’s helpful (if quite sad) to understand others’ experiences
sophie louise you’re welcome- my friend Izzy is from America has told me how different it is there with ondansetron/zofran! After discussing it, we also realised there are a couple of medications that are easier to get in the UK than the US as well, so it goes both ways!
Georgina's Journey I love Izzy too!! The HSD/EDS community (including you!) have been an invaluable resource for me these past years being. Thank you for sharing your life!!
sophie louise I’m so happy it’s been helpful for you, even if only to make you feel less alone with all of this 💕
It's interesting to hear what others use to manage their conditions. I'm also on Ondansatron and it took my GP a long time to agree to it because of the cost. But no other anti sickness really worked for my Gastroparesis. I don't really use splints but sometimes think I probably should to try and help some of my dislocations! XxX
Jenny Cole I’m glad you’re able to get it too now! And it’s so tricky when so many dislocate- if I braved all my joints that dislocate, I’d be covered aha, so I understand that! The thing & finger braces are essential for me though as I deal with dislocations of those joins 10+ times a day otherwise 😅 xx
Ondansetron is my life saver. I can’t eat without it.
love you Georgina, such a helpful video!❤️
Glad it was helpful!
Loved this video!! There’s a few meds I haven’t tried on there so might suggest to my doctor and see what they say ❤️❤️❤️
Beth Gallery so glad you liked it! All except cimetidine (cos I haven’t noticed a difference with that 🤷🏽♀️😂) have been life-changing for me, so I hope they can help you too! 💕
I’m also on birth control for mental health reasons so it’s got a lot of uses.
Emily Bannon I didn’t realise it could be used for that, but I’m so happy it’s helping you too! 💕
Georgina's Journey yeah it because hormonal changes affects my chemical levels in the brain and cause increase in symptoms ( or something similar not a doctor)
Hi lovely, really love your channel 🥰 all your videos are so informative and I love your positive attitude in the face of chronic illness.
I have POTS and epilepsy history of CVS. I am currently waiting to get tested for mitochondrial disease.
I take the same anti-emetics for my Gastroparesis and gallbladder motility problems.
I had the same issues with ondansetron I have been sick for several years and only just got my gastro to prescribe it for me.
Thank you so much! And I'm glad you're finally getting some help with it, it's horrible that people are often left to suffer with symptoms like nausea and vomiting for so long! Really hope this is the start to things getting a bit better for you x
Georgina's Journey Thanks so much. It is bad. It took years to get a gastro referral as they kept saying it was an eating disorder. In the end the gastro said you can’t leave her being sick for this long with no investigations so my GP made the referral. I was diagnosed with motility issues which lead to the PoTS diagnosis.
I watched your video on emetophobia. I’m sorry you had it but it a comfort to see others stories about their struggles with it.
I have it from having really CVS attacks that would not stop.
It is getting a bit better but it is still a struggle having a phobia and chronic nausea and sickness.
Xxx
Catherine Booth I’m so sorry you went through that :( But I’m glad they’re finally taking you seriously now 💕 Yeah, my vomiting episodes are what gave me emetophobia (idk if I thought & said it was a stomach bug at the time- I’ve been diagnosed with cyclical vomiting syndrome for just over a year, but it’s only been severely debilitating & dangerous (because of the cardiac events it triggers for me) since around last December). I agree, having CVS with the phobia is so hard, I still struggle with it a lot too xx
Catherine Booth I feel like what I wrote before was confusing as I obviously had dangerous CVS episodes leading to Resus & stuff for a couple of years before (which caused the emetophobia in the first place), but I meant the frequency of my episodes didn’t get bad until last December & now it’s getting dangerous for me to have so many cardiac emergencies so close together
Georgina's Journey I think you did say a severe stomach bug and your heart rate was over 200.
Do you have CVS and SVT? I had SVT as a child, I had an cardiac ablation and that helped but it has come back as adult.
My CVS attacks would trigger SVT attacks and epileptic seizures, it is horrible how badly CVS can affect your whole body.
You mentioned stomach inflammation as well. I had stomach ulcers from CVS attacks and medications.
I had a gastric bleed that needed to be fixed.
I am still prone to ulcers and reflux now.
I’m waiting to get the Mito testing to see if this is all related.
I am not hypermobile so they are looking into mito disease as a cause.
My main issues at the moment are PoTS, headaches and seizures and gastro issues.
It is nice to talk to people who understand what it is like.
Ondansatron never worked for me and it’s so upsetting. I’m on motillium/domperione and pantoprozole for my stomach instead. It works 80% of the time
Everyone’s different, so different things work for different people. I tried a lot of medication before I found these ones, which work for me, but they still don’t work all of the time & they never get rid of my symptoms completely. 80% success with a medication combo is pretty good
Please do a video of who your healthcare team are. Interested in physio and hospital consultants.
Most of my consultants are my local ones, so I can’t share that information as it could lead people to find out where I live. This video was already a very private one where I shared all of the medication I’m on, I’m not willing to share any more personal information than that.
I also take the same Beta Blocker but I have to take the lowest dose because I’m sensitive to Medication also I have had Weight gain, I needed to gain but not to this extreme but even the lowest dosage helps where I can stand for a few Minutes with out my heart Rate goes extremely
I’m glad it’s helping you a little bit! It helps me a little bit too, I’m so grateful for it! I know what you mean about the weight gain, I gained more than I expected to too, it’s weight that I needed to gain as well, but still a shock to the system seeing it happen!
Hey love, have you tried the EmeTerm bracelet yet? That’s what I got with FSA this year and it is pretty amazing! I wanna try that thumb brace you recommended. That looks like it could help sooooo much.
Hi! Thank you for telling me about the bracelet! I’ve just sent them an email to see if they can gift me one in exchange for a review on my channel! I hope they say yes, as I’m always on the lookout for things that can help me and my followers with nausea & vomiting! And the brace is amazing, I hope you’re able to get one of it would help you!
woh,
I was prescribed ondansatron as first call!
Where are you from?
@@GeorginasJourney The South West of the uk xx
@@hewnenthusiasm4059 that’s so interesting! I’m glad you were able to get it :)
@@GeorginasJourney thankyou! It's crazy how different doctors treat!! Also thankyou for being so open, I found your videos long for another going person using intermittent catheters x
@@hewnenthusiasm4059 you’re welcome 😊 xx
Hey, almost every night, midday and before and after dinner I feel sick, almost like when you don't eat for ages and you feel nauseated, but the only problem is, I eat normal, and food doesn't help. My stomache feels empty sometimes and sick but I don't need food at all, I've ate a decent amount. I don't think it is a hunger issue, have you got any advice? Love the videos!
I get this too- and I just follow my intuition, if my stomach feels empty, I eat, regardless of whether I think I've already eaten a decent amount. Follow your instincts of what you think might make it better and see a doctor if you haven't already! Hope this helps!
I can’t find a brace for my middle thumb joint! I’m hyper mobile and I tend to over extend my thumb when texting and stuff but I came find a brace that supports that and doesn’t put pressure on my wrist.
Maybe try a ring splint or find out what the name of that joint is and search for a brace/splint for that :)
I couldn’t tell if you meant the joint at the top which is in the middle of the thumb, or the joint at the bottom of the thumb which is above the CMC joint- I think you mean the latter though, so maybe try to search what that joint is called and then search for a brace for that joint
in the us they love giving odanesteron aka zofran. its awesome
I know! It’s crazy how that’s so different!
@@GeorginasJourney its scary how some medical protocols vary in each country. How hard is it there to find specialists who understand. Here its rediculous. i had to travel almost 2 thousand miles just to have brain surgery because of the type of specialists i needed and they diagnosed me with EDS at the same time.
@@josieeaton1116 it is incredibly difficult to find specialists who understand here & some treatments that are available in the US aren’t licensed here at all, e.g. saline infusions for POTS, just isn’t an option. However, due to England being so small, you generally don’t have to travel too far to see most specialists (you’d be able to drive there in a day). However, we don’t have specialists for as many conditions as America, so some people have to travel there & also to access treatments that we don’t have here (I’ve had friends who fundraised for certain cancer & CF treatments there, for example)
@@josieeaton1116 so you’d either be travelling less than 250 miles if we have the specialist & treatment you need, or 4,400 miles if we don’t
Thanks I am also having Heds,and lots of other
Robert Max you’re welcome
Pra que serve essa medição ???obrigada
Your question doesn’t make sense in English, sorry! I don’t know what measurement you mean
Hiya, does anyone in the comments know about any splints specifically for wrists or toes? I can never find anything for those and they dislocate frequently 🤦🏼♀️
There are loads of wrist splints online which you can find by googling it 😊 If you need a soft one, try searching ‘wrist support’ or for more immobilising ones try searching ‘wrist splint.’ Amazon is also a good place to look, as the most highly rated or ‘Amazon’s choice’ products are usually really good options
You can also search ‘toe splint’ on google & it comes up with quite a few options, although I don’t know if any of them are what you’re looking for, as I’m unfamiliar with toe splints, but you should definitely be able to find a wrist splint on there 😊
@@GeorginasJourney thank you so much! Xx
I'm only 15 and have EDS
Any advice
EDS is too broad of a thing to give advice for all of it. If you have any specific questions, you can comment them & I will reply. The most general advice I can give is that if a doctor doesn’t take you seriously about something, see if you can see another doctor
@@GeorginasJourney I am apparently boarder line were it's if got more hypermobility compared to any other inner organ problem not to mention. My rare conditions I was born with such as Congetical Diaphragmatic Hernia were brief description I had surgery to fix a hole in the diaphragm were my organs passed through the hole an I breathe from 1 ling only and I have asthma.
So I have REALLY horrible difficulties in my writing had left hand so it's really hard to write for everything but what would be the best and cheapest race to buy from Amazon for a left wrist in UK money please??
@@theeverythingkid I don’t use wrist braces & it depends what level of support you need, so you’ll have to just try googling whatever you’re looking for
@@GeorginasJourney yeah I tried that and most just doesn't seem effective in the specific areas I need such as certain knuckle or certain part of the wrist
May get a brace for the CMC joint. Are either of these braces similar to the ones you wear? (1) www.arthritissupplies.com/push-thumb-cmc-brace.html (2) www.amazon.com/MetaGrip-Thumb-Brace-Relief-Osteoarthritis/dp/B00GTXCMCG
The ones in the link above have a pair of straps on the dorsal side; does yours have the straps as well? (couldn't tell from the video). Also, do you find wearing the push ortho thumb brace eases pain from holding the computer mouse? (I mean a regular external computer mouse, not the one built in to the laptop).
Yes, mine looks exactly like those and yes, mine does have those straps- that’s how it stays on your hand.
I don’t know if it’s helpful when using an external computer mouse, I haven’t used one for many years
@@GeorginasJourney Thank you so much for the reply and for clarifying! I really appreciate it.
Where did you get your black thumb splints from?
That name on the box is where it’s from, so, Ossur. I bought them from their website
Is there any chances that POTS will completely go away?? i saw some studies which says there are some patients who recovered completely within years.
Justin studies suggest that, but I don’t know anyone it’s happened for. However, my cause is genetic, and it’s less likely to improve in those cases
@@GeorginasJourney Oh I'm sorry for that, but if it's chronic does it affect our life expectancy?
Justin no, not at all. Chronic just means long term
Do you have any neck or back issues?
Maria Mitsios for the most part, no