Saline infusions for my POTS

[@kryan2394]

If I hear my doctor tell me just to eat more salt one more time I’m gonna scream. Like how much more salt can a person eat aside from drinking salt water. 😖 adult living with POTS

[@susangutierrez5342]

I have POTS and salt isn't working I took so much as told by my doctor and got kidney stones not fun on I have an appointment tomorrow for the iv picc line i can't wait

[@TiredSunflower]

yeah omg THIS!!

[@loricat5606]

I wish doctors couldn't just deny these things. Happy for you!

[@sandysue8060]

Great video! I'm getting the same treatment for POTS and GP. It helps immensely! I also get infuvite daily, which might help you if you have malabsorption with the gp. Sorry you have to deal with this at 16 years old, but at least you know what you are dealing with. I had no clue what was wrong with me at your age. Stay strong and you have a great attitude! Be well!

[@mouseyyy10173]

What hospital is letting you have the saline infusions. Because mine wont let me

[@emilieh1458]

This video could not have come at a better time! I am currently trying to get my doctor to agree to let me try saline for my POTS. Thanks so much for making this video. It helped more than you know

[@emiliesmith5032]

HI Emilie! I only commented because we have the same name spelled the same way! Emilies forever,right?

[@mouseyyy10173]

Same with me

[@juliagoldsmith-pinkham8719]

Your videos are well put together and you're a great teacher! Thanks for teaching me something new!

[@gracemoote2744]

What type of doctor did you see to get everything set up? I was diagnosed with POTS by a cardiologist who then basically said not to worry about anything and just eat salt and drink fluids. Except drinking too much which could literally be a small glass some days, makes me extremely sick. Every doctor I've seen said it isn't a big deal. I also am believed to have EDS, but no doctor wants to officially diagnois me.

[@haley567]

Grace Moote My cardiologist set everything up for my saline infusions, who then referred me to a general surgeon to get my Groshong Catheter put in place so I’m not getting an IV every time. That’s basically impossible seeing as my veins are crap due to my EDS!

[@inferno2nite]

You have talent! You could work in tv as a presenter :)

[@madison8568]

One of the only perks of me being on TPN and being TPN dependent is that I get 2.5 liters a day of IV fluids and then 8-10 oz of liquid orally. So most of the time feel pretty good Dysautonomia wise. But that is like the only perk of being TPN dependent. It is kind of pain because I am hooked up 16-24 hours a day and TPN has much higher central line infection risks. I have love, hate relationship with my central line. It is very inconvenient at times to keep it dry and we have to be careful with the dressing because of my skin allergies and sensitivities. I am lucky because I have a double lumen central line so I can run two things at once.

[@mattnic6876]

My daughter has Elhers Danlos and POTS. I am getting more and more convinced for her it is the C1 and C2 discs being out of place, due to hyperflexible joints in her neck, that are putting pressure on her vagal nerve and that is causing the POTS symptoms. The vagal nerve is huge in controlling the autonomic nervous system. When it is not working correctly you get fast heart beat, poor digestion, temperature issues, nausea, migraines etc. There is a doctor in Florida, Dr. Hauser, at Caring Medical that does something called Prolotherapy that helps people with Elhers Danlos get their joints back to functioning correctly. One of the things he does is do the Prolotherapy in the neck to get that joints to work correctly to take pressure off the vagal nerve. There is a doctor in Phoenix, Dr. Tima Le, I am going to try first to see if she can help before we fly to Florida. She does the prolotherapy. I am praying it works for my daughter. I have watched a lot of Dr. Hauser's videos and what he explains about Elhers Danlos and the Vagal Nerve fits my daughter to a tee!

[@kimcoons3322]

Taking my daughter to Dr. Patel at MUSC. Hevis a neurosurgeon that specializes in Ehlers danlos and CCI. Definitely worth getting checked.

[@noelbivens8074]

Have you had issues with CSF leaks? Between losing fluid from my CSF leak and low blood volume it takes me 2 to 3 liters of fluid plus drinking as much liquid as my GP will allow to make me feel better. Saline really is liquid gold. Loving ur videos!

[@samanthasvideos9262]

I have pots as well and fluids help at the ER. How do you get my cardio doctor to change her mind to no to yes LOL. And what doctor would I go through that for?

[@Emily-ci4cl]

I have a friend who got her primary doctor to approve her getting a port.

[@hurricane_valence]

I got my pcp to approve

[@hurricane_valence]

I have gastroparesis and pots, and I get em at my hospitals infusion center once every 2 weeks

[@motionless_horizon]

My cardio is refusing, so now I'm completely out of options. I've tried every medication and treatment besides iv saline, but nothing works. I'm sick of having to go to the er multiple times a month just to take up a bed and spend hours to be told nothing is wrong, just to get saline. I'm having to get a wheelchair now because of my POTS and I don't know what to do. I'm 16, I wanna have some normalcy back

[@marcop4136]

thx for the outtakes ❤👍 made my day blessings and best wishes from germany

[@michaelweiss6791]

Hello Mickey it was a pleasure to meet you on June 1st at Target.

[@jacquelinesmith-jackson2815]

I was just wanting you to know a little about me and what I have been through. I also go through the 👁 inflammation and it’s called Uveitis, it can lead to cattaracts, glaucoma and iritis.

[@michimelody4036]

Do you have RA?

[@curtisbemis6640]

I have just be diagnosed with pots and I can say its horrible !! Cant wait for my infusions and feeding tube for my gastroparisis !!! Ur videos are awsome !! Keep making them subscribed and follow ur channel always !!

[@KnightessAndHerNobleSteed]

I get 2 litters 3 time a week at home for dysautonomia♡ YES I CALL IT LIQUID GOLD♡♡♡ I do this and midodrine I have a port I wish I could get a portable pump I'm stuck home all day Monday Wednesday and Friday

[@Faleth]

I have an appointment on July 26th 2024 to ask my doctor for a port. I have POTS, EDS, and Gastroparesis and I started iv fluids more recently. I have overused my one and only good vein for around 15 years now (tested for different disorders and got iv fluids multiple times a year since I was 4. I’m 19 now.) and last month it gave up and formed too much scar tissue to access it. I’m terrified and in pain every time I get an infusion because my veins are too small and they can barely access them. Any vein that isn’t in the bend of my arm will make me pass out if attempted to be accessed. I got Charlie horses that lasted over a HALF HOUR the last time they tried my forearm. Without infusions, my heart rate while sitting in my wheelchair outside can get anywhere from 130-175. After an infusion, my heart rate rarely crosses 120. I fought my doctor to get more infusions than once a week so I’m terrified of what he’s going to say when I ask for a central line. My mom has some of my same conditions (gotta LOVE genetic disorders!) and just got approved for a port. I’m hoping that my story might make him more open to the possibility of getting a port. Ever since I came into the world, I could not drink enough for even a normal person. I’ve had heat exhaustion more times than I know because of this chronic dehydration. My doctor is pushing back at the idea of iv fluids because he doesn’t want me to lose the ability to orally intake water, but when do we give up on my useless mouth??? I’m 19! I haven’t been able to drink properly for all 19 of those years. Why are we so focused on saving a function that has NEVER worked?? Infusions help me become a normal functioning person that can process food and toxins and posture changes!

[@natashak3387]

Hello my friend! I've watched your videos in the past. I'm going to finally be doing infusions through my port soon. I'm not able to be outgoing as I was in the past because I literally will pass out. I have a lot of medical issues and this extra complication is frustrating for me. It's so scary when my hearing, site, brain, vitsls, etc disappears. My Cardiologist was originally being anti-fluids and wanted to put me on steroids, but thankfully my amazing PCP talked to her and my port supply company and they are all on the same plan. I pray that this treatment plan helps me as well. So happy it helps you. Any insight would be greatly appreciated.

[@natalietippetts4394]

Hi, my name is Natalie Tippetts and I also got diagnosed with POTS 2 weeks ago. I was wondering if you could tell me, in your opinion the worst part about having it and how you would get people to understand what you're going through. I am doing a project on POTS so it would be very helpful. Thank you.

[@M4R3B34R]

why is it so hard to get saline in the Uk . 😭

[@rae1957tn]

I was at the dentist and my B/P was 78/44. Then my dr did some test and I have adrenal insufficiency. Good luck sweetie

[@seraphinarizkallah]

You are awesome:) I know you have a few chronic illnesses but I am wondering specifically how has your POTs been lately years later?

[@nicolepfeiffer1938]

Are you able to do saline infusions at home? I live rural and my nearest hospital is 1.5hours way. I feel like i would be confident to do it myself.

[@haley567]

Nicole Pfeiffer Hey! I do weekly saline infusions for my pots, so I thought I may answer since no one else has:) I have what’s called a Groshong Catheter (it’s about halfway between a picc line and a port), and with this I am able to do my own infusions. The company who set all of my infusion therapies up for me is also the pharmacy that gives me all my supplies has a policy that a nurse has to come to change my dressing, but other than that I’m completely independent! I am able to change my dressing on my own (I learned how to and it’s been great for times it gets wet or other emergent instances), however I only do when absolutely necessary so I don’t mess with their system.

[@nataliehobart5752]

@@haley567 how did you get them to agree with it? i get super dehydrated all the time and my pots specialist put me on beta blockers and it made everything worse. he’s super against saline and my primary doesn’t know what to do. i’m so lost

[@michimelody4036]

Okay my bp is normally really high. I'm always sweating too. I just got diagnosed though. This is all so new to me. I have no clue what I should be doing. I'm getting my adrenals tested by my geneticist since she's the one who originally caught the POTS. I've been putting off this test since apparently you have to wake up and do the blood work at 7:30am.... And... That's REALLY early. I'm determined to do it tomorrow. (15th time I've said that)

[@madelynblair2734]

I recently learned that I might have POTs AND I have super low iron levels, and I’ll find out in a month if I definitely have POTs or not. Fingers crossed that I don’t have it...🤞🏻

[@abbycockrell3229]

I have recently started home infusions with peripheral IVs any tips or tricks for living with a peripheral IV I have just had my second one placed at home we were having to go to urgent care every 2 weeks to get infusions so my cardiologist reluctantly prescribed home infusions

[@SpoonieEtte]

Michelle, if I had a question about EDS but I wanted to keep it private, is there a way to email your or anything please?

[@ChronicallyKats]

Hey there. Thank you for posting this video. I am going to a new doctor next month that treats POTS and EDS. And he does IV saline infusions for apart of POTS treatment, which I'm hoping to be starting for many reasons. I also have Gastroparesis and it's hard for me to get the amount needed to drink as well. Are you on any other medications for your POTS? Like for Tachycardia? Also was wondering what is better for long time us, A PICC line or Port? Thank you! And I'm glad that treatment helps you.

[@cindyshaw5867]

ports are better for long term use, actually most DRs only use PICCs for short term use like 4 weeks to 8 weeks where ports can be used for many years without the need for a change, I known someone with the same port and using everyday for 20 yrs, as long as it is taken really good care of they can last along time but sometimes infections do happen with ports to and sometimes they have to be changed out. I only heard of a few people having to have their ports taken out and replaced due to infection because they have really strong and good antibotics for port infections. so if you are in the situation where you have to choose port or PICC go with the port. you wont be disappointed plus with the port when your not accessed you can bath and shower/swim without a dressing with a PICC line you have to always have a dressing on it even if your not using it and you have to keep it dry and wear extra water prof dressings when swimming bathing showering.

[@hurricane_valence]

I get these for my gastroparesis and pots

[@jillianryanhooks2707]

Do you have an estimate on the cost per treatment (in terms of all of the equipment)? Right now I’m having to pay $115 per liter (administered by a professional at my home) through a private company and I’m hoping to switch to something cheaper and more independent.

[@catmomlavender3036]

I'm sure it's with insurance and probably her mom takes care of the costs if there is a co-payment/ cost.

[@wujiajia5314]

Have you ever tried physical therapy? Do you have to try it before saline therapy?

[@UnKNowNZeRo8976]

I have GP and I may have POTS but I don't know yet. I'm going to bring up GP and POTS to my doctor. I may be 12 (Almost 13) but I guess this is what I get for having a mom with chronic illnesses lol. I'll may ask if I can get a wheelchair because I tend to fall because of my chronic illnesses that make my legs weaker and make me really dizzy.

[@usamarafieck1715]

Could you eat a regular meal?

[@tamberjune]

I am going through the same thing now. =\

[@jacquelinesmith-jackson2815]

🍷 💧 the night before the infusion.

[@CatherineBecker]

Do you have an email I could contact you at? I have ehlers danlos and POTS and von wilderbrands disease.. I have a few questions

[@iilavenderii21]

My bp is always low rn its 61/39 im literally dead i take around 1-1/2 teaspoon salt yet it doesn’t go up also my pots is neurological is urs the same?

[@wujiajia5314]

A lot of people with EDS have hypovolemic POTS

[@iilavenderii21]

@@wujiajia5314 turns out I’m suspected hEDS makes sense!

[@iilavenderii21]

@@wujiajia5314 never mind I’m diagnosed now lol and MCAS

[@iilavenderii21]

@@wujiajia5314it turns out ur right and i have hEDS & so many comorbidities including vascular abdominal compressions & went on tube feeds and currently have a port for fluids and meds! EDS is insane!

[@eduardosaavedralopez9881]

Why havent you uploaded More vídeos?

[@abiagilshroer]

my dr is doing the same thing

[@mven331]

I am worried about someone i care so much who has p.o.t.s and god help me if I can I willingly will give my right arm (which btw is my dom hand i do everything with) to help her! I guess to find a way to get her a pump because her insurance will not help her to get it!!! And she won't do what is best for her without it!!!! And I'm extremely sad and motivated to help her i just don't know how being disabled myself I don't have money to give her?!? Please help me

[@Christina-mz4fe]

Markus Venable hello!!! How is she just with eating extra salt and drinking water??? When I have a LOT of salty foods I usually feel better. Pickles help a ton!! Hope she gets the help she needs! I’m praying for you guys!

[@cindyshaw5867]

awwww your so sweet shes so lucky to have a friend like you. And here is how you can help her. Call the American red cross in your town and talk with them about what she needs as far as a pump for IV infusions and they can communicate with the company that makes the pump and they will usually donate a pump to her to keep for her IV treatments. and if she cant get the supplies for the IV stuff like the flushes and saline bags and tubing and new needles for her port or PICC line red cross can help with that as well. they can point you into the direction on where to go for the help so you can help your friend by calling the red cross but have her diagnoses on hand to give them so they can better help. and try to have her there with you and you can work as a team and once shes all set and has all she needs you both can celebrate and she will feel so much better. I hope I have helped in some way I would give you a lot of money to just go buy the pump and all the supplies she will need for 2 months but I have terminal cancer myself and I'm on home IVs and tube feeds as well. I also have the Gastroparsis to. I wish I could help. also try setting up a gofundme that's a site you go to and post a thing and ask for donations you just tell your story on why you need the money and set up an account and once you get the donations you needed you then transfer the funds from gofundme account into your own bank account and then just use that for whatever she needs.

[@hurricane_valence]

I get my once every two weeks over the 90 minutes

[@miawatnik2818]

what type of doctor say yes

[@eparke20]

What size needle where they using that it took eight hours to run a gravity fed liter of saline!!!?? When I had it done even with a small needle (22) it's taken no more than 45 minutes.

[@LifewithStripes]

eparke20 it was a 22 gauge needle but it was more of the fact that we could never get my pole high enough and we had the dial on the tubing that set the rate and we had to run it slow because it would burst my veins. My access was so poor that they were putting it in the tiniest of veins and they would burst so easily so we had to run it slow

[@eparke20]

Oh that makes sense. Glad you were able to find a better solution!!

[@iamboxboy569]

I have POTS but I do not have GP but I still get saline infusions

[@mouseyyy10173]

What hospital is letting you have the saline infusions. Because mine wont let me

[@Jessicurrrrrrrrr]

@@mouseyyy10173 lol

[@kenmiller1145]

You look different in this video

[@robh5748]

so we know how you're dealing with your pots , but what about your hypochondria