Advice for living with POTS

[@cassandrakagan9800]

1:53 - We take everything with a grain of salt 🤓

[@suzq2744]

Pots isn’t new, that is the thing. It’s been around a long time. There no excuse for these doctors not knowing about this💯

[@jennifermcmillan9518]

I take the coldest shower I can stand. I have a shower chair. Baths scare me because my heart rate actually increases more in a bath than shower. I also keep the bathroom door open if I’m in a small bathroom, like hotel bathrooms so that any steam can escape. It’s the steam that gets the heart rate up. I found that out from a nurse in my 20’s when I went into a sauna at the gym. She and I were talking and I just mentioned I was lightheaded and she explained how steam gets the heart rate up. That’s why POTSies struggle so much in the south because it’s so stinking humid when you go outside.

[@kevinfitzgerald7474]

Every video I've seen everyone looks so energetic but I know having pots is devastating and I have pots bad and im not at the point in healing where they are at yet. I just wish I could relieve some of this massive pressure i get and then I get weaker then very out of breath. I just got diagnosed with this and have had it for yrs.

[@PhuongNguyen-vy9wm]

I was just hospitalized for the first time and been diagnosed with POTS and it has been so difficult. It’s been a week, and I still haven’t been able to get back to normal activities. These tips are super helpful. Thank you! I pray that they will soon find a cure for this.

[@lavenderm9062]

I actually finally got diagnosed with POTS today so this was really helpful!! I actually knew quite a bit about POTS (My sister was diagnosed in 2014 so I learned from her) but this really has been really helpful! I’ll have to see if I can personally handle some of these but seriously amazing video. As usual.

[@prathamrballal1229]

How is ur pots

[@Mushwomb.mp3]

Heat is a vasodilator for the veins, so increases the blood pooling. That’s why showering is so bad.

[@conniemartin313]

I was just going to write that.

[@sabrinacoleman8399]

You should make a new/updated version of this video! since your treatment plan is different now!

[@madelinegates6027]

Thank you so much. My daughter was diagnosed with POTS, and I am trying to learn more so I can understand better what she is going through and find tips for helping her. Videos like this are incredibly helpful.

[@ChronicallyLindsay]

So glad it was helpful! Sending you all so much love! 💖

[@gleader3393]

Randomly found your video on a small Google search. Thank you for the info. I believe I have this. Everything you've said coincides with my symptoms.

[@jessicalingo4346]

Fun tip i got a cirkul at walmart that helps a ton for getting the electrolytes and plain water. They have great flavors that you can adjust if needed. They have hydration, electrolyte and caffeine specific flavors. They have cool bottles, and different size bottles. great way to get plain water (you can turn off the flavor to get plain water) and the electrolytes you needed.

[@madiskae]

Thanks for this video! Always looking for new POTS tips!

[@ChronicallyLindsay]

Of course! Hope some things I said helps 💙

[@Jessicamyers1]

ZruylEKYEayoepyrwroyqqoet

[@emilywood979]

I take baths all the time!!!! I’m also getting a shower seat. I also try to walk my dog every day.

[@shelly7269]

I have MS and POTS. I swear the POTS is harder to deal with and I have a ton of MS symptoms that bother me everyday including extreme pain. Maybe because I’m newer to POTS, but I wouldn’t wish either on anyone.

[@Dulcimerist]

Sorry you have both POTS and MS. Have they tried treating your POTS with Mestinon? It can also reduce some of the MS symptoms as well. www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/

[@shelly7269]

@@Dulcimerist Thanks. I’ll ask about it! I haven’t tried it.

[@prathamrballal1229]

How is ur pots

[@allthingsmaloney5634]

How did you get dx with MS? They were in the process of dx me with MS but stopped when they concluded I had POTS. I’m just afraid I have something else causing the POTS since I don’t have anxiety, no neck injury or concussions, haven’t had COVID yet, etc. These seem to be main causes outside of a primary disease causing POTS. My right fingers, toes and face go tingly numb so this is why they suspected MS. Otherwise I don’t have any other typical MS symptoms like heavy legs.

[@carinaoliveira5850]

My mind is blown!! The fact that you mention to eat small meals…. I’ve always had to eat small meals and if I eat too much I feel awful and actually get dizzy!!

[@marcgomez6404]

I was diagnosed with POTS last week immediately after my tilt table test. My blood pressure and heart rate increases upon standing

[@ElaMariaLucia]

I was diagnosed with POTS back in 2013. I was fainting almost everyday sometimes 3 times a day. So my main focus at the time was just not fainting. Now I only faint once a year and I’m on meds for the fainting and heart rate. I still get pooling. I never got good with working out. I guess I should try to get back on that. I feel the pooling since the pandemic started mostly because I’m not moving as much as I did before. My goal for this coming year is taking better care of my POTS and maybe getting off meds 😊

[@kkaianala]

I have both POTS and NCS so I feel your pain 😩

[@nightmare3_o]

A tip for the getting up in the morning instead of having a full 5 minutes. I turn on my side and slowly lift myself face down so I can put my legs to the side of my bed and then sit up.

[@kryptiddraws2022]

Recently felt like my world has been shattered, I just was told that my primary care doctor thinks I have pots and am on a betablocker for a month, all this medical stuff is so hard and I feel like i'm just lost now... stomach issues and just everything is really rough and bad. I didn't realize there would be such a community.

[@valeriecullins302]

Try benfotamine B-1 magnesium for anxiety.

[@samanthaketterer3064]

I have worse symptoms in a hot bath, than in a hot shower. My hr is worse laying down that sitting up

[@jujub4473]

Finally getting in with a cardiologist on Sunday June 18th after months of waiting because my PT misdiagnosed me. She said I didn’t have POTS because I didn’t have orthostatic hypotension. ( she thought they were the same thing ) Medical wild goose chase later, I demanded my PCP send me to the cardio and he did! >:) Finally getting properly tested so I can get diagnosed because if she knew what she was doing, I would’ve already been on my way to my old self again. Thanks a lot for ur videos and all the comments, I’ve felt so crazy and alone in this whole experience and this made me feel alot better ! ❤ Nothing but love for my POTS homies.

[@anthonymaltese6207]

I’m 26 years old and I’ve had pots since I was 5 years old

[@mohsinsheikhofficial]

@@anthonymaltese6207 are you fine now?

[@ZoeFouweather]

I have just started researching POTS as I realised I had a lot of the symptoms. Definitely love that my Apple Watch can take my heart rate as that kind of gave me a more physical answer as I haven’t gone to the doctor to try for a diagnosis yet. Definitely going to try to implement a lot of these tips to see if I can make some improvements 😁

[@nishinoyayuu2249]

i got a watch before i got diagnosed with POTS, it picked up my problem, and was fine on my best friend, tho the adults around me tho the watch was not correct because it was cheap, like 25 dollars US. turns out it was spot on. i used it to check my heart rate when i was symptomatic. recently i got slightly more expensive one, as i was going on a trip and wanted it to tell me if it was to high when standing in lines, which it really helped. its amazfit band 5 and if 40 dollars US. it has been great. im planing to upgrade to the fitbit sense as it can do a lot more for me, but the cheaper watches do the job perfectly fine. if your on a budget, the cheaper are great. the fitbit is 300 dollars, where the amazfit is 40 and worked perfectly fine for the job.

[@emilyrose9017]

Like you were saying the fatigue is the worst part, I failed my last semester and I recently had to leave my job so I’m trying to find a call center job so I can be sitting. How do you do it though? I have struggled so much even after a hike with my dog I feel so extremely exhausted for days afterwards.

[@jessicalingo4346]

For me when i bend over i started intentionally deep breath. For my dysautonomia its like my body forgets to breath. I noticed when i bend over and stand back up i get symptomatic. To combat this when i bend over i intentionally deep breath and that someone helps lessen my symptoms

[@CrazieDiva972]

Omg!!! Its been so hard trying to get diagnosed ....i feel that not alot of doctors know about pots...i been fighting. And not gonna give up....i might need to go out of state to get diagnosed

[@Dulcimerist]

Yeah, it's frustrating that many doctors aren't familiar with POTS or dysautonomia. POTS can also be caused by uncommon disorders such as one of the 13 different types of Ehlers Danlos syndrome or other disorder that are poorly understood by most doctors, which only compounds the problems in getting properly diagnosed and treated. Vanderbilt in Tennessee has one of the best dysautonomia centers, if you're able to get there. Finding a specialist would be best, as they'd be up to date on the latest treatment options for POTS. Back in 1996 when I first began treatment for my symptoms, my doctors did the archaic method of just jacking my blood pressure up with Florinef. That caused a lot of other issues, and put my health at risk with severe hypertension. Current POTS treatment options that are safer and more effective include Ivabradine, Mestinon, Guanfacine, Clonidine, or a beta blocker. A dysautonomia specialist can work with you to find the treatment that works best for you.

[@rebeccadillon7532]

Im new to pots and orthodontic hypotension thank you.

[@Dulcimerist]

Sorry that you have both. Is yours idiopathic, or do you have an underlying medical condition like Ehlers Danlos syndrome or Lupus?

[@gabrielekolar3008]

@Odile Lalanne they said "and"

[@xcbailee6748]

Thank you I just got diagnosed today this helps a lot

[@cynthialedesma7466]

Thank you, for this inspiring video currently going through this.

[@movewithdonna]

Really helpful video, thank you. I've recently been diagnosed with pots

[@SessaRose14]

Hey I was diagnosed with POTS 6 months ago. I pass out 8 or more times a day. My doctor told me to get a service dog. So we are working on that. You didnt mention anything about a service dog in this video. Maybe you could benefit from one as well :) Might be something helpful to look into :)

[@Dulcimerist]

Sorry you pass out that many times per day. I also have POTS, and it used to be very severe. Hoping you can get a really nice service dog! Which medications have they tried for your POTS? With me, Mestinon and a small nightly dose of Clonidine has worked really well. Other good POTS medications include Guanfacine, Ivabradine, or beta blockers.

[@Jessicamyers1]

No

[@allthingsmaloney5634]

How are you doing now?

[@The-edit-girl]

I LOVE your wall

[@atthecrosshealing]

How do you keep weight on? I’ve had pots since I was a young child and can’t keep weight on. Nausea ruins it most days.

[@Dulcimerist]

Sorry you have that. Do you experience gastroparesis or digestive motility issues?

[@atthecrosshealing]

@@Dulcimerist yes both. Flare ups are bad. Some days I eat fine other days can’t.

[@Dulcimerist]

@@atthecrosshealing Have they ever tried you on Mestinon to treat your POTS and your gastroparesis/dysmotility? I have the same issues, and Mestinon has worked really well for me. It stimulates the vagus nerve and parasympathetic nervous system, which is how it's able to treat both the POTS/dysautonomia and the digestive motility issues. My POTS and gastroparesis/dysmotility are caused by my hypermobile type Ehlers Danlos syndrome - have you been screened for that?

[@atthecrosshealing]

@@Dulcimerist I don’t have eds and I’ve never heard of that rx but I’ll look into it. I take salt tabs and cyproheptadine which helps the motility and digestion

[@yvetteramos-realestate385]

What kind of exercises do you do for POTS?

[@Dulcimerist]

Calf raises can help a bit.

[@leahburdette303]

I love your POTS videos...💙

[@ChronicallyLindsay]

Thank youu!! Glad you enjoy them 💙

[@marissabohl7122]

Im waiting for a diagnosis 🙈

[@nicolenepelzer5522]

I have had pots for a year now and it sucks!! i love watching videos about others that also go through it,makes me feel less alone! i have not had a diagnoses from a doctor as I have given up. but i do know its pots. omg the fatigue is SO BAD :( it doesn't feel like a normal tired,more like somethings sucking the energy right out of you. i dont bath in hot water at all as my heart starts to beat too much and then i start to feel sick. my pots gets better sometimes then all of a sudden its bad again, does that happen to you too? i love your videos :) keep up the good work.

[@lavenderm9062]

Don’t give up. It takes on average 6-8 years to get a diagnosed! It can’t be helped but we have to keep fighting to be taken seriously. You just gotta keep fighting for a diagnosis

[@Dulcimerist]

Keep advocating for yourself to get your diagnosis, as Zoe mentioned. POTS can be tricky, since it can be followed by a cardiologist or a neurologist. You might even have an undiagnosed medical condition causing your POTS. (For me, it was hypermobile type Ehlers Danlos syndrome.) Don't give up!

[@prathamrballal1229]

How is ur pots now

[@StarGretchen]

I'm lucky that I don't have pots but the video is very informative. ❤

[@DonnaMaay]

When I sit down, my dizziness symptoms aren’t relieved- does this mean it’s not POTS? I pray it isn’t POTS to be honest but it’s been mentioned to me by my GP that it could be POTS. Thanks in advance

[@kkaianala]

It can still be pots my symptoms don’t go away easily either but consult with your doctor

[@tjmiller5060]

Once I am standing up the clock starts ticking…I know when I am reaching my syncope limit. At that point sitting down does not help at all. I get a racing pulse….severe nausea and muscle cramps. It takes me a good 30 minutes with my legs elevated to even begin to feel normal again. I lose consciousness very quickly…my husband is so used to it…he just lays me down flat on the floor.😏 I went into town yesterday and it was +90° outside. I sat in a smoothie shop for about 30 minutes before walking to my truck. Once I got inside it was so hot, I had trouble breathing and blurry vision. I parked under a tree in the parking lot until my vision improved. My husband was in constant contact with me by phone and encouraged me to get in my back seat and raise my legs up. I have never had such a severe episode before. I think the severe heat exacerbated my symptoms. I got the only migraine I’ve had in the last six months after I got home and laid down. The headache lasted all night. 😣

[@ar4b3ll4]

so tmrw im going to the doctor cause i think i have POTS. i’m learning about POTS cause i just knew about it but those are my symptoms (btw i’m going to get checked i’m not saying i have it but i will let y’all know!!)

[@DoorDashers791]

Feel like passing out with this. I guess walking makes it worse

[@Dulcimerist]

Standing still is typically the worst thing for POTS. For most people, keeping the legs moving through walking improves blood circulation and reduces blood pooling in the legs. Walking for a while and abruptly stopping and standing still can be really bad, though.

[@DoorDashers791]

@@Dulcimerist Look at my KZbin channel got like 50 videos of me with pulse readings different

[@prathamrballal1229]

It's pots

[@DoorDashers791]

I'm wondering if its multiple sclerosis related..I have multiple sclerosis I have pots syndrome 1 month. Cardiologist gave me a beta blocker..

[@Dulcimerist]

Yes, MS can cause some issues like these. Is the beta blocker working well enough? That's usually the first type of medication they try.

[@DoorDashers791]

@@Dulcimeristbeta blocker medication metoprolol works 60%

[@DoorDashers791]

@@Dulcimerist I have videos on my KZbin channel

[@Dulcimerist]

@Hailey Medeiros Researchers have discovered different types of POTS and different possible causes. My POTS is associated with my hypermobile type Ehlers Danlos syndrome, a genetic condition which causes the collagen in my body to be weaker and more flexible. Blood vessels are made out of collagen, and the extra stretchiness causes vasospasms that lead to my POTS, migraines, Raynaud's, and other issues. I also have traits of hyperadrenergic POTS, which is caused by too much norepinephrine and adrenaline being dumped into circulation and oversensitivity of the alpha and beta adrenergic receptors. That's why beta blockers can help certain people. Since those only block the beta receptors, that treatment ignores the alpha receptors. The medications Clonidine or Guanfacine can work better to treat POTS in certain people, since they signal the body not to dump so much norepinephrine and adrenaline into circulation. These two medications treat hyperadrenergic POTS right at the source.

[@Dulcimerist]

@Hailey Medeiros Definitely try to get in to see a geneticist to screen you for all collagen based disorders. You still might have hypermobile type Ehlers Danlos syndrome - look up the video by Izzy Kornblau on how to get diagnosed with hEDS, as she runs you through the criteria. Other disorders such as Marfan, Loeys Dietz, or Stickler syndrome could be possibilities. Non-medication options to help reduce POTS include putting on more leg muscle so you can tense up your leg muscle when you're dizzy so you can avoid fainting. Calf compression sleeves like marathon runners wear can also help. Sports drinks like Powerade or Gatorade can help. Hopefully your mom can warm up to the possibility of low doses of medication to manage the POTS. If you have the diagnosis of POTS and faint, be sure to tell them you have untreated POTS. Perhaps the paramedics or ER would give you intravenous saline, which can be a huge help for POTS patients. Some POTS patients even go to an infusion center to receive IV saline on a regular basis to manage their POTS symptoms. If you do find yourself able to speak with a medical professional with regard to POTS, perhaps you could ask for free medication samples to help manage your POTS to help prevent you from fainting and getting seriously injured, and mention that your mom won't pay for any medications you're prescribed. If your mom is open to over-the-counter health supplements, ParaSym Plus is a good OTC option to try for POTS. It helps the autonomic nervous system work properly.

[@leep.9808]

take these tips with a grain of sALT HAHAHAHA i'm so sorry that was horrible

[@Mushwomb.mp3]

Do you happen to have any hypermobility?

[@Dulcimerist]

Good question. My POTS is caused by hypermobile type Ehlers Danlos syndrome.

[@Dulcimerist]

Here are the diagnostic criteria for the most common type of EDS, which is one of the conditions that can cause POTS: www.ehlers-danlos.com/heds-diagnostic-checklist/

[@Dulcimerist]

@Odile Lalanne Researchers are suspecting an underlying mechanism of POTS that can be caused by EDS. The more severe cases of EDS that lead to Chiari or CCI/TOS with damage or pressure on the vagus nerve can lead to POTS. Blood pooling issues and other effects of the stretchy EDS blood vessels are also being investigated. In any case, my EDS specialist and dysautonomia specialist have listed my POTS as secondary to EDS.

[@Dulcimerist]

Resources on the Dysautonomia International website clearly state that Ehlers Danlos syndrome can, in fact, cause POTS. That settles that debate. EDS can cause POTS.

[@lolololololutrythcfy]

w palpitations and tachycardia in general bear down and do long sighs

[@margomarquez4082]

I have Dysautonomia POTS , How much water do you drink ? I've increased mine and also salt intake any other tips like for hot days when I have to go out ? , Take care 💖

[@kkaianala]

I have POTS and NCS. My doctor told me to drink 12-15 cups of liquid a day. But you should still consult with your doctor.

[@Dulcimerist]

Sometimes the body can't absorb enough water through the digestive system, and it's common for doctors to prescribe IV saline infusions. It's usually about one liter every three to five weeks, and sometimes POTS patients only really need these during the hot months of summer.

[@susanhorton9492]

how can bowel movent cause problem?

[@Dulcimerist]

The vagus nerve is in charge of the parasympathetic nervous system, which is in charge of digestion and other autonomic functions. Sometimes POTS can show up alongside gastroparesis or intestinal dysmotility or IBS-C. If this is the case, which is what I experienced, doctors will prescribe Mestinon to treat both the POTS and digestive issues, since it stimulates the vagus nerve and has shown to be an effective treatment for both issues. One medication to treat multiple health issues means a patient can be on fewer medications overall, which makes Mestinon an especially appealing treatment option.

[@deanabele1622]

Are you going to try any medication? I read PoTS can be caused by PTSD. Some people said once they stopped having PTSD their POTS went away.

[@savanahhernandez6105]

PTSD never goes away though ?

[@deanabele1622]

@@savanahhernandez6105 Lots of people have overcome PTSD

[@Dulcimerist]

A couple of medications which are sometimes prescribed off-label to treat PTSD - Clonidine and Guanfacine - are often prescribed to treat POTS. Both of those calm the sympathetic nervous system, which is in charge of the "fight or flight" response and is overactive in people who have hyperadrenergic POTS.

[@DoorDashers791]

My blood pressure Increases with a pots episode..

[@DoorDashers791]

@Odile Lalanne cardiologist said inappropriate sinus tachycardia

[@DoorDashers791]

@Odile Lalanne cardiologist said its inappropriate sinus tachycardia

[@Dulcimerist]

@@DoorDashers791 Do you have any odd joint issues, like hyperflexibility or subluxations?

[@DoorDashers791]

@@Dulcimerist I have multiple sclerosis

[@Dulcimerist]

@@DoorDashers791 Have they tried you on the MS medication Tizanidine? They generally prescribe a nightly dose of that to reduce the muscle spams and pain associated with MS, but its mechanism of action also reduces tachycardia.

[@Jessicamyers1]

I have pots 3😔😞😴

[@Jessicamyers1]

Pots

[@kittykatkattitude9777]

A shower chair is you best friend.

[@bayleegalley8152]

I can't view your Amazon list:(

[@prathamrballal1229]

How is ur pots now

[@margomarquez4082]

I have Dysautonomia POTS , How much water do you drink ? I've increased mine and also salt intake any other tips like for hot days when I have to go out ? , Take care 💖

[@ElaMariaLucia]

My doctor to drink 2 cups of water every 2 hours

[@Dulcimerist]

Some doctors will prescribe IV saline fluid a couple of times per month to help.

[@corneliafisher2738]

About 2 to 2.5 liters a day and like 2/3 of what you drink needs to have salt in it.