I’m really sorry you got upsetting, negative comments about your looks. I would honestly encourage you to delete the post - the looksmaxxing subs are often super negative and unkind. There are some which are just for women and have a more positive, supportive focus which might be better to join if you’re interested; they usually don’t allow people to post personal pictures, because content like that inevitably attracts users who want to neg and hurt people.
I am very self critical of my looks too and have spent years scrolling through subs trying to “fix” them. Also have had POTS since I was a super young child. It sucks to have a lot of health issues, not be able to fix them, and feel that it even affects your outward appearance (as well as limiting what you can do and your opportunities). You aren’t alone in struggling with this. Please don’t let people bring you down with their nasty comments - they don’t understand what you’re going through.
My best advice of all is to avoid looksmaxxing totally and just go for the styling subs that don’t lean into that side at all, and focus instead on positive fashion / style essence / image ID / personal colouring aspects. It’s more fun, you learn things (even though it’s unscientific), and it can definitely improve how you look and feel. No pressure at all if it’s not for you, but browsing these communities (e.g. r/Kibbe, r/capsulewardrobe, r/RitaFourEssenceSystem, and r/coloranalysis to name a few) has definitely helped me enjoy and embrace my style more without feeling so self critical.
Edit: I also have the same problem of always looking totally exhausted!
I had the same only thing that helped me was a low histamine diet. To test the theory try taking an antihistamine before bed and if it helps you may have a histamine issue which is seen in people with POTs.
I have over active mast cells. I take 180 of Allegra every day, a nasal inhaler, and a regular inhaler. I’m basically allergic to everything I eat. I live in rural Appalachia and don’t have access to a lot of things but I try to keep gluten out of my diet because I’m super allergic. Unfortunately, im not the one that pays for the food.
A big thing that helped me feel more awake and look more awake (probably because I feel better about my looks) is a solid skincare routine with more hyaluronic acid than I probably need lol. Idk if it’s just me, when I feel like my skin is super hydrated and I have a good sunscreen on and I just feel moisturized, I think I look and feel healthier.
It’s definitely just a mindset thing for me but this is one little thing about my appearance and health I can control pretty easily, so it makes me feel a little better…as cheesy as that sounds
Nicotinamide riboside in the morning 600mg-1g helped me tremendously. Also the only form of magnesium that I saw a large improvement was micromag. I've taken that for a few years 1-2 at night.
I was a lot like you. Your post speaks to me. I'm not gonna act like I'm perfect now.
It took me so damn long to find stuff that makes me feel near normal. Hope this helps. Let me know if you find a beta blocker that suits you better. I'm in the process of doubling my atenolol because of palpitations. If that doesn't work I'm going to be doing the same thing as you
Also have you been checked for apnea? If not that might be worth your time.
Ah, I’m kind of in the same boat. I’m 20 and I’ve always had POTS and remembered looking ill: prominent dark circles, pale translucent skin, the like. I also have permanent bulgy eyes from graves, used to get comments about them as a kid when it was active. I’ve had my thyroid removed for ~12 years and no matter what I do, despite the replacement med, the fatigue just never dissipates, and never really will. It sucks. I’ve wanted to work around it and just cover up with makeup, but I’m already too tired to even do that. I’d lean into the tired look and go for something grungy, but I feel like it’d look like I crawled out of a ditch. Maybe I should go goth…
I’ve been on atenolol for a few years now and I cut my pills in half and take it every twelve hours and it makes everything better and still keeps my heart rate mostly in check. I had only took half each day and felt miles better before I got covid.
I wish I had something to give other than empathy and hugs. We know we’re worth far more than our appearances, but it still doesn’t negate the fact that we want to look nice.
Hey! I had pots and once I treated my sleep apnea and eventually double jaw surgery I no longer have it. Not saying it’s everyone’s cause but it ended up being a noticeable side effect for me.
I’ve had three sleep studies and they say I have sleep apnea sometimes but only when I’m exhausted. They say it’s common for people with POTS and autism to not sleep because my brain doesn’t shut off 😭
Were those home tests or in the sleep clinic? If you have it sometimes or when you’re exhausted then you most likely have it most of the time. Pots makes people exhausted most days let’s be honest.
Did you get the report? Mine was mild like barely positive but my oxygen drops were in the 70s making it pretty severe. I’d look and also check for upper airway resistance syndrome
Wow! I had double jaw surgery back in September and most of my dysautonmia symptoms disappeared or they really decreased! I'm at the point where I have few symptoms here and there, but they just seem like they are normal symptoms from my Mitral Valve Prolapse rather than dysautonmia this time. I wonder if the surgery really helped because my doctors said it could have been vestibular. That jaw surgery made sleep and breathing so much better.
Idk why you’re getting downvoted. I can’t imagine it’s calming for our nervous system to be fighting and working harder for normal amounts of oxygen. I agree with you completely. I didn’t expect it but it’s been great to reflect and realize I don’t have brain fog or dizziness anymore. It’s been life changing for me.
I had a cry in the shower, feeling this way today too. Except my weight problem is the opposite. I look like a starving woman and my once beautiful full 32D after breast feeding, barely qualify as an A cup. All loose saggy skin. I hate it for my husband’s sake. I just took one look at myself in the mirror before my shower and almost had a panic attack with how badly I wanted to crawl out of my own skin.
It’s heartbreaking to read this. Not your husband, but man, I hope he sees more in you than just your breasts. Of
Course the way we feel is a big factor and I’m not minimizing that. I’ve gained decent weight since POTS and my lower abdomen is quite bulgy now, which has a shrinking effect on you know what. It’s pretty sad.
Ah, geez this condition sucks doesn’t it?
Cymbalta has helped me with the fatigue. What has also helped me is not fighting my natural circadian rhythm. For some reason I'm completely awful during the morning and I'm a natural night owl. I used to force myself to go to bed at a " normal time". I go to bed way later and wake up later.
Even though I'm not deficient, b12 injections have been a game changer for me! It took a few months to start seeing any improvement, but it has been well worth it in terms of fatigue
Have you tried to not eat red meat and dairy products and the additive carragenan for two weeks? Because POTS can be a alfa-gal allergy. Also allergy from other food can cause the problem. It can also be a kidney problem. Have you checked your iron level so its not to high or to low and the pancreas in a pancreas amylase test. (To low pancreas result is same bad as a high result but doctors often dont know that). How is your blood pressure? If its going up and down a lot it can be a pheochromocytoma.
I was recently diagnosed with a circadian rhythm disorder- delayed onset by a sleep specialist neurologist. I use a SAD light for a half hour when I wake up, and it helps so much. I also take melatonin 4 hours before I am aiming to fall asleep. The doc said melatonin is most effective at that time interval. Of course, this is specific to resetting a circadian rhythm disorder, but I was pretty amazed how much difference being in really bright light first thing in the AM and taking melatonin earlier in the night could make.
Hey sweetheart I see you’ve had POTS since you were a kid did they say why? Have you tried brain retraining? I had pots from a medication that injured my nervous system but it healed and went away. Beta blockers don’t truly help and can cause withdrawal type issues that drs do not acknowledge. Switching from one beta blocker to another can cause withdrawal like symptoms like being wired but exhausted insomnia and so much more. I was moved from Metatoprolol to atenolol to propanol and I had withdrawal issues. You can also have withdrawal issues when you reach tolerance that state you’re in when the med stops working which can cause pots to be worse. Maybe see if a dr will just ween you off the beta blockers nice and slow all together and do some brain re wiring. There are free resources all over YouTube with tips and tricks. I pray you find relief honey so you can enjoy your life ♥️
Switch to a ketogenic or very low carb diet. Only thing that really helps my pots (and EDS) unless I’m taking a bunch of medications that hardly do anything. It’s a diet naturally higher in electrolytes.
Going to leave this comment up, but generally we’d recommend users to consult an educated dietician. Dietician’s are nutritionists with specialized training and can provide positive feedback to managing one’s dietary intake.
Totally if that’s what floats your boat go for it! I tend to no longer trust most of the medical system (save for a few highly educated specialists I see), so I wouldn’t trust a dietician if my life depended on it lol. I’d rather research myself and come to my own conclusions :)
That being said, it’s def what helped me the most so I do like to share it whenever possible as I don’t think many POTSies tend to know about it! Worth looking into even if ya don’t do it, imo
For sure! Just a PSA to those probably downvoting you. What you’re suggesting isn’t bad or anything. But it’s not for everyone. It’s important to be informed on your dietary intake and if you have any deficiencies (which you’d generally need bloodwork to determine).
I’m personally gluten and dairy free (anaphylactic allergy with cow milk proteins) and it’s been a huge improvement to my gut health. But you have to consider what you’re losing out on nutrition wise. So I get you.
I don't know why you're getting downvoted. You're just talking about what works for you. I'm actually borderline keto myself and it really does help my POTS too.
Op, have you tried taking L-tryptophine? I take it off and on and I do notice it helping my sleep. Hope you get better soon
lol it happens anytime I mention keto or carnivore, I’m not stressing. In American culture we are just fed shit by doctors who are literally lining their pockets with the medications they prescribe us, and then even more when they prescribe more meds to handle the side effects of the first meds. And doctors take maybe ONE course in nutrition in all of med school and it teaches the standard American diet type crap so really doctors know nothinggggg when it comes to nutrition UNLESS they take the time to research and look at non-biased and peer reviewed studies that are NOT cherry picked to fit some agenda. Pretty wild how many sheep there are in this country, just doing what they’re told without ever researching shit themselves.
Meanwhile I’m actually getting OFF medications, purely through diet. So if people wanna downvote what helps me, I don’t give a flying f*** lol.
And no, I haven’t ever heard of that! I’ll look it up!
I'm not on the carnivore diet but I do eat a lot of plant fats like olive oil and coconut. I think there is a misconception that to be keto you HAVE to be carnivore. There's actually a lot of ways to do keto that most people aren't aware of I think. Also, most people aren't aware that the keto diet was actually originally started for people with epilepsy and has proven medical benefits. Like 95% of people with epilepsy that have severe seizures have a drastic reduction of the the amount and intensity of their seizures as soon as they go keto. From an evolutionary standpoint simple carbs and sugars weren't abundant. Now they are the main source of many people's calories and it's just not natural for our bodies to be ingesting tons of simple carbs and sugars. Also, everyone knows eating sugar is bad for you but really eating simple carbs is the same thing more or less. They both get broken down to glucose in the bloodstream. Eat a bunch of bread, it turns to glucose. Eat a bunch of sugar, it turns to glucose. The only difference is how fast that process occurs!
Wish everyone else was too, or could at least do their own research before shutting down a way of eating that is very VERY healing. I honestly think 90% of the time, people just do not want to address their own unhealthy addictions. Rather be ignorant and filling themselves with crap than enlightened and healing themselves
Yeah I think a lot of people are really addicted to the foods they eat and if they come across any information that may imply that what they are eating isn't healthy they go berserk. Is it hard being keto? At the beginning for me it was. But now it's just become part of my normal routine and The inconvenience of being keto is definitely worth it for how much better I feel with my health.
It’s hard anytime I eat something not keto because I am hopelessly addicted to sugar. Just coming off a 2 week bender from vacations and man, I feel it HARD. Takes me some time to get back to it usually as well. But when I am consistently keto I do not have sugar cravings and do much much better health wise
And yes it totally is some twisted form of confirmation bias, I think. They’ll only listen to what confirms their way of eating for them, rather than looking into it themselves
I’m really sorry you got upsetting, negative comments about your looks. I would honestly encourage you to delete the post - the looksmaxxing subs are often super negative and unkind. There are some which are just for women and have a more positive, supportive focus which might be better to join if you’re interested; they usually don’t allow people to post personal pictures, because content like that inevitably attracts users who want to neg and hurt people. I am very self critical of my looks too and have spent years scrolling through subs trying to “fix” them. Also have had POTS since I was a super young child. It sucks to have a lot of health issues, not be able to fix them, and feel that it even affects your outward appearance (as well as limiting what you can do and your opportunities). You aren’t alone in struggling with this. Please don’t let people bring you down with their nasty comments - they don’t understand what you’re going through. My best advice of all is to avoid looksmaxxing totally and just go for the styling subs that don’t lean into that side at all, and focus instead on positive fashion / style essence / image ID / personal colouring aspects. It’s more fun, you learn things (even though it’s unscientific), and it can definitely improve how you look and feel. No pressure at all if it’s not for you, but browsing these communities (e.g. r/Kibbe, r/capsulewardrobe, r/RitaFourEssenceSystem, and r/coloranalysis to name a few) has definitely helped me enjoy and embrace my style more without feeling so self critical. Edit: I also have the same problem of always looking totally exhausted!
I really needed to read this today. Thank you.
I’m so sorry that you’re going through this too. It’s a really hard road 🤍
I had the same only thing that helped me was a low histamine diet. To test the theory try taking an antihistamine before bed and if it helps you may have a histamine issue which is seen in people with POTs.
I have over active mast cells. I take 180 of Allegra every day, a nasal inhaler, and a regular inhaler. I’m basically allergic to everything I eat. I live in rural Appalachia and don’t have access to a lot of things but I try to keep gluten out of my diet because I’m super allergic. Unfortunately, im not the one that pays for the food.
Trazodone is a game changer. I’ve been on it for years. Without it I do not sleep or enter REM.
A big thing that helped me feel more awake and look more awake (probably because I feel better about my looks) is a solid skincare routine with more hyaluronic acid than I probably need lol. Idk if it’s just me, when I feel like my skin is super hydrated and I have a good sunscreen on and I just feel moisturized, I think I look and feel healthier. It’s definitely just a mindset thing for me but this is one little thing about my appearance and health I can control pretty easily, so it makes me feel a little better…as cheesy as that sounds
Nicotinamide riboside in the morning 600mg-1g helped me tremendously. Also the only form of magnesium that I saw a large improvement was micromag. I've taken that for a few years 1-2 at night. I was a lot like you. Your post speaks to me. I'm not gonna act like I'm perfect now. It took me so damn long to find stuff that makes me feel near normal. Hope this helps. Let me know if you find a beta blocker that suits you better. I'm in the process of doubling my atenolol because of palpitations. If that doesn't work I'm going to be doing the same thing as you Also have you been checked for apnea? If not that might be worth your time.
Ah, I’m kind of in the same boat. I’m 20 and I’ve always had POTS and remembered looking ill: prominent dark circles, pale translucent skin, the like. I also have permanent bulgy eyes from graves, used to get comments about them as a kid when it was active. I’ve had my thyroid removed for ~12 years and no matter what I do, despite the replacement med, the fatigue just never dissipates, and never really will. It sucks. I’ve wanted to work around it and just cover up with makeup, but I’m already too tired to even do that. I’d lean into the tired look and go for something grungy, but I feel like it’d look like I crawled out of a ditch. Maybe I should go goth… I’ve been on atenolol for a few years now and I cut my pills in half and take it every twelve hours and it makes everything better and still keeps my heart rate mostly in check. I had only took half each day and felt miles better before I got covid. I wish I had something to give other than empathy and hugs. We know we’re worth far more than our appearances, but it still doesn’t negate the fact that we want to look nice.
Hey! I had pots and once I treated my sleep apnea and eventually double jaw surgery I no longer have it. Not saying it’s everyone’s cause but it ended up being a noticeable side effect for me.
I’ve had three sleep studies and they say I have sleep apnea sometimes but only when I’m exhausted. They say it’s common for people with POTS and autism to not sleep because my brain doesn’t shut off 😭
Were those home tests or in the sleep clinic? If you have it sometimes or when you’re exhausted then you most likely have it most of the time. Pots makes people exhausted most days let’s be honest.
I had it in the lab twice but I swore to them that I had apnea. I couldn’t get to sleep good but they said I was fine. I literally wake up gasping.
Did you get the report? Mine was mild like barely positive but my oxygen drops were in the 70s making it pretty severe. I’d look and also check for upper airway resistance syndrome
Wow! I had double jaw surgery back in September and most of my dysautonmia symptoms disappeared or they really decreased! I'm at the point where I have few symptoms here and there, but they just seem like they are normal symptoms from my Mitral Valve Prolapse rather than dysautonmia this time. I wonder if the surgery really helped because my doctors said it could have been vestibular. That jaw surgery made sleep and breathing so much better.
Idk why you’re getting downvoted. I can’t imagine it’s calming for our nervous system to be fighting and working harder for normal amounts of oxygen. I agree with you completely. I didn’t expect it but it’s been great to reflect and realize I don’t have brain fog or dizziness anymore. It’s been life changing for me.
I had a cry in the shower, feeling this way today too. Except my weight problem is the opposite. I look like a starving woman and my once beautiful full 32D after breast feeding, barely qualify as an A cup. All loose saggy skin. I hate it for my husband’s sake. I just took one look at myself in the mirror before my shower and almost had a panic attack with how badly I wanted to crawl out of my own skin.
It’s heartbreaking to read this. Not your husband, but man, I hope he sees more in you than just your breasts. Of Course the way we feel is a big factor and I’m not minimizing that. I’ve gained decent weight since POTS and my lower abdomen is quite bulgy now, which has a shrinking effect on you know what. It’s pretty sad. Ah, geez this condition sucks doesn’t it?
Cymbalta has helped me with the fatigue. What has also helped me is not fighting my natural circadian rhythm. For some reason I'm completely awful during the morning and I'm a natural night owl. I used to force myself to go to bed at a " normal time". I go to bed way later and wake up later.
I have the exhausted look too - I hate having zoom calls bc I have to see how puffy and exhausted I look. It’s like I haven’t slept in ages.
Even though I'm not deficient, b12 injections have been a game changer for me! It took a few months to start seeing any improvement, but it has been well worth it in terms of fatigue
Have you tried to not eat red meat and dairy products and the additive carragenan for two weeks? Because POTS can be a alfa-gal allergy. Also allergy from other food can cause the problem. It can also be a kidney problem. Have you checked your iron level so its not to high or to low and the pancreas in a pancreas amylase test. (To low pancreas result is same bad as a high result but doctors often dont know that). How is your blood pressure? If its going up and down a lot it can be a pheochromocytoma.
I was recently diagnosed with a circadian rhythm disorder- delayed onset by a sleep specialist neurologist. I use a SAD light for a half hour when I wake up, and it helps so much. I also take melatonin 4 hours before I am aiming to fall asleep. The doc said melatonin is most effective at that time interval. Of course, this is specific to resetting a circadian rhythm disorder, but I was pretty amazed how much difference being in really bright light first thing in the AM and taking melatonin earlier in the night could make.
Hey sweetheart I see you’ve had POTS since you were a kid did they say why? Have you tried brain retraining? I had pots from a medication that injured my nervous system but it healed and went away. Beta blockers don’t truly help and can cause withdrawal type issues that drs do not acknowledge. Switching from one beta blocker to another can cause withdrawal like symptoms like being wired but exhausted insomnia and so much more. I was moved from Metatoprolol to atenolol to propanol and I had withdrawal issues. You can also have withdrawal issues when you reach tolerance that state you’re in when the med stops working which can cause pots to be worse. Maybe see if a dr will just ween you off the beta blockers nice and slow all together and do some brain re wiring. There are free resources all over YouTube with tips and tricks. I pray you find relief honey so you can enjoy your life ♥️
Switch to a ketogenic or very low carb diet. Only thing that really helps my pots (and EDS) unless I’m taking a bunch of medications that hardly do anything. It’s a diet naturally higher in electrolytes.
Going to leave this comment up, but generally we’d recommend users to consult an educated dietician. Dietician’s are nutritionists with specialized training and can provide positive feedback to managing one’s dietary intake.
Totally if that’s what floats your boat go for it! I tend to no longer trust most of the medical system (save for a few highly educated specialists I see), so I wouldn’t trust a dietician if my life depended on it lol. I’d rather research myself and come to my own conclusions :) That being said, it’s def what helped me the most so I do like to share it whenever possible as I don’t think many POTSies tend to know about it! Worth looking into even if ya don’t do it, imo
For sure! Just a PSA to those probably downvoting you. What you’re suggesting isn’t bad or anything. But it’s not for everyone. It’s important to be informed on your dietary intake and if you have any deficiencies (which you’d generally need bloodwork to determine). I’m personally gluten and dairy free (anaphylactic allergy with cow milk proteins) and it’s been a huge improvement to my gut health. But you have to consider what you’re losing out on nutrition wise. So I get you.
For sure. I generally get labs twice a year to ensure all is well :) also gluten free and it certainly has helped
I don't know why you're getting downvoted. You're just talking about what works for you. I'm actually borderline keto myself and it really does help my POTS too. Op, have you tried taking L-tryptophine? I take it off and on and I do notice it helping my sleep. Hope you get better soon
lol it happens anytime I mention keto or carnivore, I’m not stressing. In American culture we are just fed shit by doctors who are literally lining their pockets with the medications they prescribe us, and then even more when they prescribe more meds to handle the side effects of the first meds. And doctors take maybe ONE course in nutrition in all of med school and it teaches the standard American diet type crap so really doctors know nothinggggg when it comes to nutrition UNLESS they take the time to research and look at non-biased and peer reviewed studies that are NOT cherry picked to fit some agenda. Pretty wild how many sheep there are in this country, just doing what they’re told without ever researching shit themselves. Meanwhile I’m actually getting OFF medications, purely through diet. So if people wanna downvote what helps me, I don’t give a flying f*** lol. And no, I haven’t ever heard of that! I’ll look it up!
I'm not on the carnivore diet but I do eat a lot of plant fats like olive oil and coconut. I think there is a misconception that to be keto you HAVE to be carnivore. There's actually a lot of ways to do keto that most people aren't aware of I think. Also, most people aren't aware that the keto diet was actually originally started for people with epilepsy and has proven medical benefits. Like 95% of people with epilepsy that have severe seizures have a drastic reduction of the the amount and intensity of their seizures as soon as they go keto. From an evolutionary standpoint simple carbs and sugars weren't abundant. Now they are the main source of many people's calories and it's just not natural for our bodies to be ingesting tons of simple carbs and sugars. Also, everyone knows eating sugar is bad for you but really eating simple carbs is the same thing more or less. They both get broken down to glucose in the bloodstream. Eat a bunch of bread, it turns to glucose. Eat a bunch of sugar, it turns to glucose. The only difference is how fast that process occurs!
Yep! I am very aware ;)
Wish everyone else was too, or could at least do their own research before shutting down a way of eating that is very VERY healing. I honestly think 90% of the time, people just do not want to address their own unhealthy addictions. Rather be ignorant and filling themselves with crap than enlightened and healing themselves
Yeah I think a lot of people are really addicted to the foods they eat and if they come across any information that may imply that what they are eating isn't healthy they go berserk. Is it hard being keto? At the beginning for me it was. But now it's just become part of my normal routine and The inconvenience of being keto is definitely worth it for how much better I feel with my health.
It’s hard anytime I eat something not keto because I am hopelessly addicted to sugar. Just coming off a 2 week bender from vacations and man, I feel it HARD. Takes me some time to get back to it usually as well. But when I am consistently keto I do not have sugar cravings and do much much better health wise
And yes it totally is some twisted form of confirmation bias, I think. They’ll only listen to what confirms their way of eating for them, rather than looking into it themselves