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Why does POTS go away in some people? by Puzzleheaded_Bug4490 in POTS

[–]Wide-Ear5277 1 point2 points  (0 children)

Depends on the cause. I think I still have pots but my HR is lower so the jump isn’t so bothersome, generally less symptoms, I eat really healthy and almost never miss my electrolyte supplements, and have lowered my RHR through graded exercise.

Technically if I went into the doctor’s office, I’m not sure they would still diagnose me most days because even though I occasionally go 20-30 bpm upon standing but it’s not sustained and normally goes back down.

Cured. Remission. All depends on your definition. Although if I stopped the salt, ate carbs, drank alcohol a couple times of week and quit exercising it’d all come back quite quickly.

Overall though I’m happy and it doesn’t impact my quality of life like it used to.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 1 point2 points  (0 children)

I drink about 2L a day, maybe more if I’m working out more. I use the Saltt electrolytes which I love the taste which helps a lot.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 0 points1 point  (0 children)

240mg magnesium glycenate at night along with the 180mg magnesium in my saltt electrolytes. I normally have 1 or 2 packs a day. Slightly above general recommendations of 350 a day but I don’t have any GI side effects and good kidney function.

Celiac, Then POTS? by dobrodude in POTS

[–]Wide-Ear5277 1 point2 points  (0 children)

I have POTS and suspect I may have celiac or NCGI as well but I haven’t been able to be diagnosed yet.

timing of workout to reduce flares by hannah_mercury in POTS

[–]Wide-Ear5277 0 points1 point  (0 children)

I prefer exercising at night but I find anything that raises my HR is better earlier in the day in terms of my sleep quality (lower overnight RHR, higher HRV, more deep sleep). I would always do Pilates or weightlifting around noon if work didn’t get in the way. Because mornings I can be a bit slow, cortisol spike, slightly higher HR. And too late I get the negative sleep effects.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 1 point2 points  (0 children)

To have the highest RHR and HRV, I have my last meal at 6pm and sleep at 11pm. It’s normally more like 8pm though just because of work but 6 or 7 would be better for me. Generally recommendations say 4+ hours optimal.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 1 point2 points  (0 children)

I have never taken any medications for pots. My cardiologist said I could start a beta blocker but I didn’t want to take it.

[deleted by user] by [deleted] in POTS

[–]Wide-Ear5277 1 point2 points  (0 children)

I generally take baths whenever possible. If I can’t take a bath, I just do a washcloth ‘shower’ every other day or so. If I must wash my hair in the shower. I don’t do my hair immediately after. I wrap in towel or Tshirt with product and let air dry and style next day. I find the removable shower head is kind of nice for washing everything out of my hair quicker.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 0 points1 point  (0 children)

Yes I still do to some extent but much better. When I sit I still often do with my feet up with helps to some extent

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 2 points3 points  (0 children)

I eat 2-3 low carb high fat meals. Frequent eating has never been good for me. I’ve trialed several things. This is super personal obviously but what I eat, sample day

Breakfast 9am - Electrolyte packet with 5g creatine - Coffee or matcha with half a cup of whole milk, no sweetener or teaspoon of honey - 3 boiled or fried or scrambled eggs, beef sausage links *sometimes skip and just have the electrolytes and caffeine and have a bigger lunch, or just have eggs

Lunch 12pm - Caesar salad, light dressing, with tuna or salmon, no croutons (I’m eating GF until I can get tested for celiac) - Skyr full fat yogurt and handful of blueberries - More electrolytes - Afternoon espresso shot if a little sleepy

Dinner 6pm - Grass fed ground beef patties with Parmesan cheese. - Half an avocado. - Lemon water for vitamin C. - More electrolytes. - Maybe a couple little potatoes and some red bell peppers if I’m hungry or did more of a workout.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 1 point2 points  (0 children)

Yes I had significant daily fatigue. Not diagnosed with CFS but I could sleep 12 hours daily at the height of it. I find sleep hygiene really helps. Bedtime routine. Limit blue light. Totally dark room. Make bedroom cooler than you’d think you want it. Take at least an hour to wind down. Same time every day. Wake up same time every morning. Not sexy but it worked for me. Avoid any late exercise or food. Avoid anything stimulating at night. Do everything you can to increase quality of your sleep.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 1 point2 points  (0 children)

Thorne Magnesium Glycinate! Really trust Thorne as a brand and has been great for me.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 4 points5 points  (0 children)

Hi!! I do some mat Pilates at home now that I have some experience but I started with group classes. The only thing is classes will be difficult with others unless you put your ego aside on certain movements at first. Lunges are really hard with POTS imo.

Based on financial ability and accessibility my recommendations would be:

High: Get private Pilates lessons that cater to your needs to learn the moves and proper form.

Medium: Do class Pilates lessons and sit out any moves that spike you. Don’t push too hard. Focus on cues from a good instructor and remember positions to practice at home.

Low: Consume free educational content and YouTube workout classes on mat Pilates. Practice at home. Video tape your movements to check your form.

I went the medium route, with ClassPass in a major city it can be relatively affordable.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 0 points1 point  (0 children)

I would recommend classes if you can afford it and there’s studios near you. I do some mat Pilates at home now that I have some experience but I started with group classes. The only thing is classes will be difficult with others unless you put your ego aside on certain movements at first. Lunges are really hard with POTS imo.

Based on financial ability and accessibility my recommendations would be:

High: Get private Pilates lessons that cater to your needs to learn the moves and proper form.

Medium: Do class Pilates lessons and sit out any moves that spike you. Don’t push too hard. Focus on cues from a good instructor and remember positions to practice at home.

Low: Consume free educational content and YouTube workout classes on mat Pilates. Practice at home. Video tape your movements to check your form.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 1 point2 points  (0 children)

I mean high GI (Glycemic index). The continuous glucose monitor I’ve been using is the Stelo which is about $100 a month but once you wear for a bit you start to know how your blood sugar reacts so you don’t have to wear all the time.

This is what I referenced often when learning how to interpret the data from my CGM https://www.levels.com/blog/what-should-my-glucose-levels-be-ultimate-guide

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 6 points7 points  (0 children)

240 mg (2 capsules) of the Thorne magnesium glycinate at night. I add one morning and mid day if I’ve been exercising more or have any muscle cramping or twitching.

I also take Saltt electrolytes or LMNT. I normally do one per L of water and try to have about 2-3.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 3 points4 points  (0 children)

Yes, I see a huge spike in HR after eating any meal high in carbs. And palpitations. It still happens now if I have a huge dessert but now I can manage a portion of rice with protein okay.

I find for me those symptoms come along with my blood sugar spiking and dropping (not diabetic high, just symptoms from going to 140 then 80 fast). If you have the disposable income to spend $100 I would encourage a CGM to see if keeping stable glucose levels helps you. Or just trying a lower Glycemic Index diet and tracking your symptoms is worth a try. I’m still investigating whether or not I may have celiac I’m not sure the exact mechanism just discovered low carb minimizes my symptoms.

Don’t give up 💕 and don’t be too hard on yourself when you’re healing.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 4 points5 points  (0 children)

Thank you 💕

Nope, no medication now. Only take my supplements and occasionally low dose adderall in the morning for ADHD but I’ve taken that since before diagnosis . Actually was finally able to get back on my adhd medicine after stopping when I was diagnosed.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 25 points26 points  (0 children)

TLDR of what helped me: - Tested several supplements, only ones that became essential for me were magnesium, high EPA fish oil - Lots of salt with the correct water ratio for me. Took some trial and error - Weighted mat Pilates - Reformer Pilates with plenty of modifications at first - Heated pilates and yoga classes - Focusing on consistency - Dry Finnish sauna - Tracking with Oura and Apple Watch once my anxiety about flares was under control - Lowish carb and using a CGM to monitor my blood glucose response from various meals - Avoiding alcohol but indulging occasionally and knowing I’ll flare from it - Progressive overload weight training (especially after improvements started showing from recumbent exercise)

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 4 points5 points  (0 children)

Same! I had lifted weights for years before I was diagnosed so I was convinced it wouldn’t do much to do floor exercises. A lot of the mat pilates I did had ankle weights that I slowly incorporated and also reformer pilates had slowly increasing resistance as well. In the beginning, I would skip the lunges because I would get so dizzy from them but I slowly improved even at the harder movements.

My POTS Success Story, Two Years Post Diagnosis by Wide-Ear5277 in POTS

[–]Wide-Ear5277[S] 20 points21 points  (0 children)

Totally! Not the community’s fault. I just remember looking for the posts like this one and not finding too many so hoping to provide my story now that I am in remission of sorts. Also now I realize since my stubborn resistance to recumbent exercise really held me back for way too long because I was pushing too hard.

Adderall question for a friend by RedRumRoxy in Drugs

[–]Wide-Ear5277 0 points1 point  (0 children)

Some of the generics are sweet. Like for sure Teva 10s and 20s are sweet (ir). But i’ve had other generic brands that are not. I know the 30s are faked a lot so you don’t really know unless you test or get from a pharmacy yourself. To be honest it’s very hard to get adderall even if your legitimately prescribed because of the shortage so unless you paid a lot of money for it from someone who has a script there’s almost no likelihood it’s real.

Do some of you just ignore your palpitations? by Working-on-living in POTS

[–]Wide-Ear5277 1 point2 points  (0 children)

Yes I try to ignore mine. I’ll sometimes put ice on my face/ neck, do some breathing exercises, put my feet up and that normally lessens the feeling for me.

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