Potsie1990

I no longer do it. I find it does absolutely nothing for me and I have no change in symptoms or BP

Hi dear, sorry for the late response. I often use the Now brand from amazon. Their prices are great, and they are very consistent with the aroma. With dottera, you can order the same blend every time and it will smell different every time. Before you rub it on your skin, make sure you test a small area with a carrier oil. I don’t get a reaction when I use it straight but some do if you have super sensitive skin. You can buy amber glass dropper bottles on amazon too and make your own blends.

Yes. Totally get the same things. The worst part is for me, before I even feel a cramp like I have to go, my heart rate soars, I’m dizzy and jittery like I’m going to pass out. I get nauseous too. Then I have to use the bathroom, then I have to recover. Lol some days it’s beyond terrible; others I have no symptoms. Strange but it’s been my entire life and I’m 27 years old

Yes it only lasted a few nights and it went away on its own without doing anything. Then I developed a really bad nerve pain throughout my body which was bizarre, I’ve never experienced anything like that before. I didn’t take anything for it, it lasted a few days, and then mysteriously went away on its own again. I have gotten the strangest symptoms that just come and go. They don’t really make any sense but honestly it’s really hard to try and explain it to a doctor and not sound like you’re crazy so I just chalk it all up to pots and call it a day.

Your reaction to singulair is the same reaction I get to so many things... NyQuil included. I’ve never known someone else to have the same thing as I do, kind of nice to know I’m not alone! thanks for sharing and I hope you feel better

Yes. I had that for the first time a few weeks ago. It happened at night and was literally like my body forgot to breathe and I had to manually do it myself. I had a long day of standing on my feet and was around hair dye fumes but other than that, it was a normal pots day. I didn’t take anything for it and it eventually went away on its own, but it was alarming in the meantime and I had to do some serious mind control on myself to keep from getting anxious and making it worse. Do you have an O2 monitor? I kept mine to check my levels. It will let you know if there’s a serious problem and you should get help right away.

Holy moly! we are in the same boat, like almost to the T! I feel like we could be the same person by your response. I’m doing everything you’re doing now. Let me know if you find out anything. I just met with the immunologist today about MCAS and he said that the people who have it go into anaphylactic shock which didn’t sound like my allergic complaints. Have you been tested for EDS?

Hi there! Sorry you are feeling so terrible. I was in the same position the other night when I reacted badly to some meds I used to tolerate so well. Ugh i keep peppermint oil on hand. If your skin isn’t super sensitive, try one drop mixed with some lotion or oil and rub it on your arms, leg, and chest. It will give you a soothing cooling sensation and if you combine that with a wet cloth on your forehead it will help. another technique that I borrowed from anxiety treatments is grounding. For me, if I smell something strong, it helps me focus on that. It can be anything from perfumes lotion, hand sanitizer, essential oils, etc. I rub it in my hand and cup my mouth and nose and breathe in slowly and deeply. If it’s a smell I recognize and love it helps give comforting feeling when your body and mind are panicking. Obviously it’s not true anxiety but it works the same. Try wetting some socks and wring the water out and put them on. Cooling your feet can help cool the rest of your body. I keep a Rosewater spray next to my bed and I spritz away. Lol I spray it on my chest, arms, face. Try a breathing technique and to get your mind past an pots episode play something on Netflix or whatever that is very comforting and you know very well, like your favorite show. Just let it play in the background and listen to it. Or your favorite music. I throw on some classical piano or Frasier and I try and ride it out that way. I mean, we can’t really control our bodies but one thing we can control is our mind. It’s very very very tough and exhausting but you have to position yourself to face it head on. It’s scary since there’s always something new and strange that’s never happened before but if you can relax your mind and tell yourself you will fight it, you will win. Much love and once this is over rest up well so you can let your body recover. Let us know how you feel later!

Yup, same here. I can’t get any one to give me an IV. I got two bags last Time I was in the ER when the doctor first suspected POTS, felt like a new woman the next day. Everyone is so worried about kidney function 😕

I get them all the time but I’ve never done anything about it. I always just tried to ignore it. Great idea about the magnesium.

I get the b12 shot from time to time. I also take a b complex vitamin gummy from time to time also when I can remember. The shots are nice because it lasts a lot longer

I use dawn dish soap for everything. Lol it cleans my bathtub, toilet, shower, dishes, marble floor, countertops, walls. And when Im having a great day it works wonders for deep cleaning hardwood floors and baseboards and cabinets. Haha i also use clorox wipes for sanitary purposes. They make eco friendly non toxic versions as well. i recently “pickled” leftover random citrus peels in vinegar. I put it in a hugeee pickle jar. You can dilute that with some water and use it to clean grease and oily things. The scent is so lovely and it’s like magic... no vinegar smell at all! Method almond hardwood floor cleaner is everything. So is pretty much anything they make lol Whole Foods 365 brand has a laundry soap I’ve been using. They use essential oils for the fragrance and it’s very light, haven’t had any issues with the skin. Also super cheap. A huge jug of detergent was $10 and cleans very effectively.

I have one by Balance. It has Bluetooth so it will automatically store your stats. You just have to download the app. Doesn’t hurt at all. I keep this one at home and just bought a wrist cuff for my purse Bluetooth Blood Pressure Monitor Cuff by Balance, Free App with Smart Connected BP Monitor, Upper Arm Cuff, With Large Digital Display, Kit Complete with Soft Carrying Case (Bluetooth New) https://www.amazon.com/dp/B06XSYBLT8/ref=cm_sw_r_cp_api_g9JtBbY028N5T

Funny enough not really... or not enough that I noticed anyway. I often crave tangy vinegar-y things... but maybe that’s my body’s way of craving salt!

Hugs

Yes, if you have amazon prime fresh ($15/month) or Prime now, it’s a life saver! If you live in a city where Prime Now is available it comes with your existing prime membership. It’s free grocery delivery from Amazon (which is like your standard grocery store), Whole Foods and Bristol’s farms. I think the minimum you have to order is $35 worth of goods for free delivery, or you can pay the $4.99 delivery fee if you need less. I shop mostly from the Whole Foods store since they have the best quality and and it’s really amazing! They offer their 365 store brand too so you get all the same sales and things you’d get in store! And, it’s at your door in two hours or less. You can get everything there! From chicken, milk, eggs, exotic fruits, baking stuff, medicine, makeup, dog treats, everything a normal Whole Foods has. Even sushi! (Although I think delivery sushi is questionable regardless of origin). And amazon store has 365 brand goods now also since amazon acquired WF. if you have a problem with your order, just call the customer service and they fix it for you right away. So easy and Convenient. My entire life is from amazon lol

You know, I’m in the same boat. I try to do things as quickly as possible. When I’m ok, my husband is lucky to get fancy dinner plated like a 5 star restaurant. But when I’m having a flare up, I do whatever I can get on a paper plate lol I live in Los Angeles and here we have free grocery delivery from Whole Foods through amazon prime now. I get all of my groceries delivered twice a week. So, I buy meat (for him) that’s pre cut so I don’t have to cut it (I don’t touch flesh and if I have to I wear gloves lol) I get frozen vegetables or fresh and I usually make one pan or one pot meals. I have a mini toaster oven that I roast things in, but I always make super easy, but visually impactful meals. Lol I made Côtelletes d’Agneau à la Provençale (fancy way to say Frenched rack of lamb with Provençal sauce) in 30 minutes and my husband literally thought I spent hours on it. Our friend, who is a Michelin starred chef by the way, actually thought I hired a chef for the evening. I posted the photo on my IG story and he couldn’t believe I had made it myself. Haha 😂 if they only knew! on bad weeks, Trader Joe’s is my life saver. They don’t have delivery but They have pre grilled chicken (not frozen, artificial grilled chicken!) Tikka Masala packs, fresh pasta packs, grass fed beef roasts etc ready to go. It’s microwaveable and it tastes like you cooked it yourself or from a restaurant. I try and get to Trader Joe’s when I’m feeling ok and I stock up and keep it in the freezer. Plating makes a huge difference too. For me, it takes the same effort to stack things on top of each other for a gourmet presentation and throw some garnish (I have garish already chopped and sealed in a plastic bag) than it does to place it side by side. Granted, it’s only us and two dogs so the human meals are smaller in quantity than a family with kids. But, I make full size meals (for him) and usually put half in the freezer. I’ve made a big batch of roasted fennel, endive and petit carrots roasted in butter, Chardonnay and pancetta and kept them in the freezer in individual portions so I can just pop it in the microwave or oven with the chosen protein for him. Im High raw vegan-nutritarian so my meals are quite different. But, some nights I will eat all the same things just minus the meat. For myself, I keep the big plastic containers full of organic spinach and bags of frozen fruit for smoothies. I buy either the Trader Joe’s brand or Whole Foods 365 (their generic) and for us in our area, the prices are actually much cheaper than your regular grocery store. I keep whatever fresh fruit that is in season in bulk on the counters. I cook homemade meal mixers for my dogs as well. Every Monday I make a huge batch for the week. I have two dogs that are over 100lbs. Its just one pot of a few pounds of grass fed ground beef (or whatever good ground meat WF has on sale), bag of frozen organic spinach, olive oil or coconut oil, dried herbs, and either rice or potatoes or oatmeal for their starch. I mix it with their holistic dry food. They get half dry and half of my homemade. It’s cheaper and healthier than canned food. My precious girl got cancer last October and beat it with her treatment and surgery. Our oncologist vet actually said her diet aided in her recovery and building her immune system back up quickly. Literally, you’d never know she had cancer. Same with my boy who broke his knee when he was 1 (he’s a clumsy one lol). He eats very well and he jumps and runs like he has a normal knee! And he has two screws in there! When I can’t cook, I keep WF brand “365” pizza in the freezer for emergencies for him. It fits perfectly in the small toaster oven, tastes great, and when it’s ready, I sprinkle fresh parmesean, parsley and a quick drizzle of trader joe’s bottled balsamic glaze. Sometimes I’ll place a handful of arugula in the center and it looks like a gourmet pizza. My Toaster oven is a life saver. Lol I’m lucky in the sense I have two Viking ovens in the kitchen but I literally never use them. My $35 toaster oven from Walmart is my go to. Lol Easier to clean and it’s right on the counter top. Heats very quickly too. I cook cakes, desserts, etc in it. i have a mini George Foreman for when I need to grill something. I have a counter height bar chair that I keep in the kitchen. I sit when I need to chop or cook something on the stove. Cooking is something I think I will always do myself. I don’t think I’ll ever hire someone to do that for my family, at least not in the immediate future. Some of our friends have chefs that come in a 1-2 times a week, or a maid that cooks for them. I have to know exactly how things are prepared, what’s in them. Maybe when (and if) I have kids I will consider that but as of now, not interested and unnecessary. We use Postmates or Door Dash (restaurant delivery) for our bad days and weekends Im excited to see who else will share tips! I read articles from themighty.com and Pinterest and learn new things everyday.

Oh how exciting! I’ve got to work on my bread making skills. I’ve been watching the Great British Baking show so I’ve been inspired to try my hand at a few recipes. Looks so good!

Omg the doctors I have are all not helpful and I live in Los Angeles Lol the 3 recent ones can tell me I have DYS/PoTs so I’m definitely thankful, but outside of that they offer no solutions or have no real education. But I’m going to try and research and present them with information and see if I can help them help me. ive been prescribed midrodrine but I have a history of violent side effects to vasoconstrictors so I’m terrified to try it. I wear compression stocking but meh. I don’t feel like it’s that helpful but then again maybe I just dont wear them as much as I should. im trying the salt but the latest doctor said that may not be necessary for me since I barely sweat at all so I’m not exactly losing fluids. I’m going to go see an immunologist and see if I can get tested for MCAS, which i am pretty sure I have as well. Thanks for asking 🙏🏻

Congrats! I was just diagnosed with POTS/Dysautonomia but I have not found out what type I have yet. So happy for you! I cried when I found out too. Ugh, what a battle we fight.

Hi everyone! I just wanted to start a thread for all of us ladies (and gents!) who are going through whatever cocktail of chronic illness we have. I would like to share and collect tips and tricks for beauty and fashion and tips for how to keep us looking as great as we can and feeling as confident about ourselves as possible! Let’s be honest, it takes a physical and emotional toll and when you are feeling terrible, who has time to care about how you look? I personally have my own tips and tricks that I learned on how to achieve a glamorous look with minimal effort that I’d like to share with you. Please feel free to share any tips you know so we can start a thread for others to reference! Hope this helps someone. If this is in the wrong section, please forgive me. If you just let me know, I can post it in the appropriate area of the forum. Ps, Please forgive my typing. I’m using one thumb with a combination of speak to text so there may be grammatical and punctuation errors. Here we go! Face: B.B. cream (contains many serums and sun protection and benefits in one) Maybelline age rewind concealer. Has a sponge applicator so make its easy to apply Toning spray mist, great for vasovagal episodes since it’s a cold mist but also hydrates your skin! Spray SPF for the chest and body so you don’t have to use precious energy to rub it in. Lol Lips: Revlon color-stay 16hr lip color. You can apply it once in the morning and will stay on for more than 16hrs as long as you’re not eating very oily food. Having a little lip color will help bring some color and life into your skin. Maybelline super stay 24 hr lip color. Same type of product and you can apply once in the morning and have it all day lip stains Eyes: Eyelash extensions. Whether professional or DIY, you will wake up glammed and go to bed glammed. The professional extensions Are a little pricey per set and require driving to an appointment at the salon or having someone do a house call OR you can DIY with the Ardelle kit sold at all major stores. (Amazon, cvs, Walmart, target, etc) you just need lash tite glue (light or dark or what comes in the set)and you can pick up the lash trios (3 knots on a small strip) or the individual lashes. It takes less than 10 minutes to do yourself. When I’m feeling well, I just bring a stool, sit down and put them on. Fills take even less time! Lasts up to 2 weeks and will brighten your eyes and be one less thing you have to apply. Brows: Professional Microblading. If you’re able, professional microblading is a life saver! It looks so natural and I never have to do my brows. Completely waterproof and lasts for years! Wunderbrow. For those who don’t know. It’s a wateproof eyebrow color/gel makeup. I have never tried it, but some people swear by it. Henna brow tinting. I have the DIY kit from amazon. I did this before I got my brows microbladed. The color lasts up to 2 weeks depending on your skin type Body: For those who are able, Jergens natural glow lotion. Gives a nice glow wherever applied for those (like me) who don’t get out much or are very pale. I find it hides my livedo reticularis from POTS but unfortunately, I don’t do it as often as I’d like. Any good smelling lotion for days you may have not been able to shower. Lol Hair: Call me crazy but Wigs. There are plenty of nice wigs, I own synthetic and I have custom human hair wigs as well. They are a life saver. Personally what I do is I only buy wigs that match my own hair, so it looks natural when I blend it with my own hair in the front. It’s the same color and just thicker and longer than my own. I have all over blonde highlighted hair with a small root so usually I just (when I can) pop into the salon and get the bangs/front pieces I will have out highlighted so it’s fresh and matched. It’s a lot quicker and cheaper that way. For my human hair wigs, I have my stylist style/curl the hair for me, and give it a good spray. I don’t wear them all the time but if it’s done properly, you can get up to 20 wears with it without the style falling out and needing a wash as long as you take care of it. For those wondering how it stays on : my human hair wigs are lace front, although I don’t wear them that way. I have clips sewn in around the hairline of the wig, like the kind for regular clip in extensions. I have long hair but I Bobby pin my hair to my head (loosely, can’t have my arms up too long) but leave about 1-2cm if hair out around my hairline. Then I put the wig on just behind my own hair that’s left out, and it’s clipped by my ears and temples. Brush it so it blends and voila! It does not move or judge and when the wind blows it’s your own natural hairline so it’s undetectable! Or I slick my hair back in a twisty thing and jaw clip. It’s a quick, pretty updo and looks a touch nicer than a saggy ponytail which I am ever so guilty of. Lol Nails: Unfortunately I have no tips for nails. Mine are a wreck all the time now Lol I can not paint my own and I can’t make it to the salon yet to get them done so any tips would be appreciated Fashion: The easiest way to look put together or somewhat decent is adding a little jewelry. I am known for my earrings always have big and bold (and blingy) earrings that I throw on and it jazzes up any outfit. Baseball caps. It hides your hair on days you can’t do much with it. Fashion turbans or big sunhats. I have a fashion velvet turban and with my big vintage style sunglasses I have a whole Teggy French moment! Pretty headbands Big sunglasses to hide everything 😂 Flowy sheer summer tops. Keeps you cool for temperature regulation problems. And kaftan style dresses. Makes it Look like I’m trying to look good even tho it’s just my glam version of a MooMoo. Lol Cute sandals/flats. I can’t wear my heels much anymore so I wear pointy flats or kitten heels. It’s just high enough to wear with about anything and can help dress up an outfit yet not so bad that you’re dying from pain or falling from weakness. I recommend splurging on a nice pair of shoes. Something that is comfortable and makes you happy! It will provide you with comfort and also dress up your outfit and help you feel more presentable overall. Also, having a cute handbag/backpack to store all the medicine and BP monitor and snacks in helps. Sick day clothes... I felt bad because I realized how far I let myself go around my husband and I wanted to try and feel a little more put together even when I’m not feeling so good. So, my solution is workout clothes. Lol it’s comfortable, cute, and looks somewhat more appropriate during the day than a stained T shirt and sweatpants. Lol it doesn’t have to be expensive! I actually found some clearance items from Walmart.com since I can’t make it to an actual store yet that are my absolute favorite! Plus, it might motivate you to start walking a bit more or wanting to exercise! Well, this is all I can think of for now... please add any tips you have so we can build a POTS beauty/fashion/life help thread!

No problem! And you know, don’t worry about the fruit if it causes too many problems for you. A whole bag of Baby spinach with unsweetened vanilla almond milk, stevia and ice is so delicious and mild. So easy on the stomach. You can always try packing in the greens and veggies! I’m so glad you’re feeling better!

Oh how exciting! I’m glad you were able to do all of that! Well that gives me hope. Maybe I will just clear my schedule and try it out. It’s nice to know it only lasts 4 hours and I can cut the pill to test it out first.

I do wear the stockings... but honestly it’s the muscle weakness that’s really getting to me lately, and I don’t really see an improvement when I’m wearing them. I do it anyway just to cover my bases. I wonder if they are the right compression? Lol I got them from amazon, who knows if they are really tested. Thanks for the recommendation.

Thank you! I’ll go check it out.