definitely try to find a new doc. my first cardiologist was the same and didn't want to medicate me in my early 20s. but there are very simple and safe meds you could try like beta blockers. as far as activity, you may want to invest in a bike or even just pedals. i have something like this https://www.amazon.com/Portable-Pedal-Exerciser-Vive-Equipment/dp/B01G8ZU2QW. it's nice because you can stay seated, or even sit reclined while being active. it's also nice for the winter when it's too cold to walk.
Also to anyone interested - My girlfriend and I have been buying unsweetened koolaid mix, stevia, and this awesome electrolyte formula called LyteShow. All you need are a few drops of it with the koolaid mix. It’s a great alternative to Gatorade zeros!
Here is a link for the electrolyte formula if anyone is interested!
LMNT electrolyte powders (1000 mg per packet, cheaper to buy in bulk).
All the ice packs! I have several different types, but these that fit around the neck are my favorite. https://www.amazon.com/Wearable-Reusable-Cool-Time-Activity/dp/B08BLQJPZJ/ref=asc_df_B08BLQJPZJ/?tag=hyprod-20&linkCode=df0&hvadid=459479355973&hvpos=&hvnetw=g&hvrand=7784290040215003916&hvpone=&hvptwo=&hvqmt=&h...
Not sure what link you sent was the right one... It's a 50minute long YouTube video and I couldn't find anything with BP in it.
I have a BP cuff similar to this one that I use when checking orthostatic vitals once a week or so. (Amazon
As for doctors, try either a cardiologist or neurologist first for the basic tests (EKG, Heart monitor/Holter, stress test, echocardiogram) to make sure everything is structurally sound.
If you're not confident that you're taking your pulse right, you can buy a cheap pulse oximeter online or at a pharmacy. This is the one I have...it's cheap and I find it to be accurate enough for monitoring my POTS symptoms.
its way too common which is so sad :-( ive never actually met another disabled person around my age and its upsetting (but not surprising) to hear that you’re struggling to get diagnosed like i did! these are the compression socks i use, theres usually more colors but i like these because they are insanely cheap and such good quality! i hope it helps <3
Trioral works best for me and is cheaper than the other brands! It's $40 for 100 packets, each packet makes 1 liter of oral rehydration solution. https://www.amazon.com/Rehydration-Organization-Poisoning-Electrolyte-Replacement/dp/B00OG8G9UM
Not what you're asking, but there are salt capsules like these if you're just trying to increase your sodium intake and don't feel like eating something. Welcome to the sub and I hope you find what works for you!
Liquid IV is a powder add in that has electrolytes. Found here: https://www.amazon.com/Liquid-I-V-Multiplier-Electrolyte-Supplement/dp/B01IT9NLHW It helps a lot with hydration.
Running helps me mentally more than anything. But yes it has helped with symptoms as well. I still get flares but anything you can do to strengthen your legs will help with lightheadedness. I will say to be careful if you faint- I rarely pass out. I run 2-3 times a week normally.
My brain fog still isn’t great to be honest. It doesn’t help that I have frequent migraines though. I’m still in college and get good grades though.
Have you heard of mask brackets? They were reccomended to a family member with autism and they keep the mask off the face for a little more room to breathe. It seems like a great idea and might be worth a shot. Here's one I found on Amazon.
FlexiFreeze Professional Series Ice Vest - Charcoal https://www.amazon.com/dp/B07FSSD1LS/ref=cm_sw_r_cp_api_glt_fabc_T43S6VQHE31JNB0MHDHA?_encoding=UTF8&psc=1
This is the one I have and I like it. I am pretty big chested with a small waist and the sides are adjustable. I think my problem with the chest is that it’s hard to feel the cooling effect through my bra and I really need the cold right there 😅
Giotto Large 1 Gallon/128oz Motivational Water Bottle with Time Marker & Straw,Leakproof Tritan BPA Free Water Jug,Ensure You Drink Enough Water Daily for Fitness,Gym and Outdoor Activity https://www.amazon.com/dp/B0868Q7M18/ref=cm_sw_r_cp_api_glt_fabc_CK9BF0VG0P4D8GPX796Y?_encoding=UTF8&psc=1
I love mine. It’s pop-top, holds a gallon, and had a very strong attached strap. Easy to clean. I nick-named it “hydration nation”. It has time markings on it that remind you to drink, along with encouraging sayings. I never thought I could actually love a water bottle to this extent!
Doctor's Best High Absorption Magnesium Glycinate Lysinate, 100% Chelated, Non-GMO, Vegan, Gluten & Soy Free, 100 mg, 240 Tablets https://www.amazon.com/dp/B000BD0RT0/ref=cm_sw_r_cp_api_glt_fabc_HB6D5BBPECB8V0W7GKBH?_encoding=UTF8&psc=1
I take these regularly, 1.5 pills a day split morning/night. when I get a lot of PACs I up the dose to 1 in the morning and 2 at night, so 3 pills total.
If they get out of control, like hundreds a day/night, I take metoprolol tartrate (beta blocker) and it calms them down. But I reserve those for worst case scenario.
Sodium Chloride Tablets 1 Gm, USP Normal Salt Tablets - 100 Tablets https://www.amazon.com/dp/B000GCN130/ref=cm_sw_r_cp_api_glt_fabc_22NQ28RRGFD7RTNXH773?_encoding=UTF8&psc=1
I use these. They are just sodium chloride. They can be dissolved or swallowed whole. I just swallow them and haven’t had any gastric issues.
I bought these at the recommendation of someone on this sub. I got them in black and they still work really well, no tears or runs. They reach about mid-thigh on me and I have pretty long legs. They stay up well, aren’t irritating, and do a good job with compression. I later bought the same ones in nude and one tore and ran the first time I put them on. Maybe it was bad luck but they seem a little flimsier than the black ones.
All this is to say that I recommend these stockings in black, but not in nude. Good luck!
Salt capsules or just putting extra salt in foods is probably the easiest way to get sodium without eating junk food.
These are my favorite capsules. I usually just take 2-4 a day.
If you have trouble adding enough to help from diet changes alone you can try some salt tabs like these ones
Here it is! This one dissolves immediately even in cold drinks, and tastes the least nasty of all I’ve tried. This is the only one I use since it’s so much better! The container is huge and lasts a while, I try to remover (haha I’m a failure!) to take two tablespoons daily. Your hair and nails will thank you too! I also included a liquid multi vitamin I take, also super helpful for skin, hair and nails. My face and hands are painfully dry, when I take these they are much better!
Great Lakes Gelatin, Collagen Hydrolysate, Unflavored Beef Protein, Kosher, 16 Oz Can https://www.amazon.com/dp/B005KG7EDU/ref=cm_sw_r_cp_api_glt_fabc_Y3P7HEEX964N1FYQ3PF1?psc=1
Mega Premium Liquid Multivitamin... https://www.amazon.com/dp/B071CNR16Q?ref=ppx_pop_mob_ap_share
I like this one
I use the 32 oz and it’s perfect cuz I can set it down next to me and suckle on the straw. Idk if it’s the same as I bought years ago but the one I bought doesn’t fit in average cup holders sadly.
I use this one. I absolutely love it. Nalgene makes really great water bottles that last forever. I was a huge fan of them from my scouting/camping days. I carry mine with me everywhere. It is a year and a half old, I use it 24/7, and it still looks brand new.
It is also nice that it has measurements on it so that I get a general idea on how much I am drinking a day. And I hate water bottles that have a mouth piece thing or a straw. They seem like they never get clean (especially because I use it 24/7) and they are just simply annoying. I just really like bottles with the open tops. Also, the wide mouth top makes cleaning it a lot easier (I use bottle cleaning brush kinda like this one). The loop at the top is nice too because it makes it easy to carry around and you never have to worry about loosing the lid.
You can look up wooden bathtub bench (like this one on Amazon: IPPINKA Bathtub Bench/Caddy Made from Hinoki Japanese Cypress Wood https://www.amazon.com/dp/B07QQ3CY5T/ref=cm_sw_r_cp_api_glc_i_vlFaGbPF5Z7B3?_encoding=UTF8&psc=1) it looks like a bath tray but is also a seat!
Bummer! This is the one I got for Christmas: SP Ableware Maddak Rotating Shower Stool, Adjustable Legs (727152100) https://www.amazon.com/dp/B002S3GP74/ It’s more $ than some of the stools, but I put it on my wishlist because I didn’t want any stability problems (I weigh 230ish). Also I don’t fit on an 11” disk all that well. The legs just fit into the bottom of our narrow tub/shower combo. It’s not padded though.
I do have a long grab bar up, and I can reach it from the seat if I stand up and need extra support.
Just saw on Amazon that suction, temporary brackets for handheld showers exist. Um. Where have I been?
Before being on Midodrine, I found compression leggings to be the most helpful. https://www.amazon.com/dp/B076VKQY8B/ref=cm_sw_r_cp_api_glt_fabc_2Tq2FbDHEX3QK
It took away much of the daytime fatigue and all the nausea. I was able to drive again and make dinner for my family and return to normalcy pretty much. It was just obnoxious to be so dependent on something so hard to put on.
Pharmacies and large superstores like Walmart will have them. Here is an Amazon link: https://www.amazon.com/Omron-Pressure-Monitor-Reading-Memory/dp/B004D9P1A8/ref=zg_bs_3777151_3?_encoding=UTF8&psc=1&refRID=9E693YYA44R7DS4D2TFQ
Santamedical Deluxe SM-110 Two Way Display Finger Pulse Oximeter with Carry Case and Neck/Wrist Cord https://www.amazon.com/dp/B003TJH3LI/ref=cm_sw_r_cp_api_fab_OkIFFbVTGKM01
Exact one that I have! It was a prime item when I got it a few years ago but I definitely love it!
Edit- also don’t freak out at the heart rate if you think yours is high. I usually cover the heart rate part because it just makes me panic more. I focus on my oxygen level as long as I know it’s ok
I have EDS so idk if its from that or POTS or what but this stuff is the best stuff ever. Its like menthol gel or sth and you massage it in and miracles happen. My Gma found it for me when I played sports in highschool. (Many many years ago)
I used to get the powder packs of Pedialyte but found the packaging to be super wasteful and I was blowing through them so it was getting expensive. I've been using this powder for about 3 weeks now and have definitely noticed a difference! It doesn't have a ton of sodium but the electrolyte balance seems to be helping me and it's zero sugar which is a plus. I don't mind the taste either.
I try to drink 2 16-oz servings a day on top of other fluids and salt tabs 3x/day. It's more cost effective and there's way less waste than buying bottled drinks or the individual packets.
This is not my own hack. Another user (I can't remember who, sorry!) mentioned it and it's so friggin brilliant. Hair dryer holder so your arms don't get tired and you don't get as dizzy
Do you have a fridge on site to keep the medications, or a freezer/fridge in the employee area for food? You could keep a rotating supply of cold gel packs and strap them to your body under your clothes. I do this when I'm working in hot environments and it's unavoidable. One like this covers a large area of the core torso and could go a long way to keeping your temp down.
I used to until my symptoms started to improve. Now that they've worsened again, I need to get one again. I have the Medical ID app on my phone, which shows up on my lock screen where someone can double tap it to find my medical information.
Yes and here's my fave cuz it's light and never gets moldy! https://www.amazon.com/Better-Living-Products-70060-Shower/dp/B00BMU4NSM/ref=mp_s_a_1_9?crid=3RG938OVXRWZ6&keywords=shower+stool&qid=1671202310&sprefix=shower+stool%2Caps%2C92&sr=8-9
I have a Japanese foot soaking bucket. https://www.amazon.com/Inomata-Pearl-Detox-Massage-Bucket/dp/B002TCV6GE I carry my bath items in it and then flip it over and sit on it in the shower. No one knows I’m using it as a stool.
I use 40,000 Volts electrolyte drops. There’s no sugar or anything else, just concentrated drops that you add to water. They absorb immediately in your stomach. I have stomach issues too and can’t take the sugary electrolytes.
They make some super cute shower stools as well if you don't want medical looking chairs. This is one of the spendy ones but they have cheaper options as well like Bamboo. It can look just like a seat for the bathroom for shaving your legs as well.
of course! I found the link I'll put below if you want to look into it !
How about a flip stick? They're really handy. https://smile.amazon.co.uk/gp/product/B008L1ONAS/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Amazon and such, order online. For Instance I use THESE off Amazon.
I couldn't stand full hose/tights style, though it's the best as it also provides compression to your lower abdomen as well, so I went with that type.
You want to get multiple pairs, and after every use you want to wash them in cold water, gentle (or hand wash cold), air dry, no heat. This keeps them effective for the longest, heat will ruin the compression.
I have a half dozen pair and I have to replace them every year or so depending on how frequently I've worn them.
If ordering online, order a single pair first in case they don't fit correctly, and from some place that offers free returns (like Amazon Prime).
Alternatively there are also places that can measure you for custom fit leggings or hose, such as some medical supply stores, but those are significantly more expensive. And there are online sites (just search for custom compression garments). Some insurances might cover them with a prescription from your doctor.
Hey! I have a really great cane that I use when walking my dog (I swear getting a dog saved my life) and whenever I leave the house. I try not to use it in the house but sometimes do need to. It’s collapsible so I can put it in my bag when I’m out if I don’t need it (when sitting down etc.), and then it’s right there when I do! It’s super cute, too. I will say it hurts my hand, but that’s partly due to arthritis. I’m getting a handle cushion to add to it like I had on my first cane (retired to being a backup in the trunk of my car).
I am in the process of being fitted for a wheelchair (my final appointment is this Friday), and I’ll be utilizing that for any and all outings that involve more than just a quick in-and-out of a store (grabbing a drink from the gas station or a few things in Dollar General, both approximately 2 minutes from my front door, for example). I’ll also forego the wheelchair for once a day walks with my dog (my friend handles evening walks for me since by then I’m usually too fatigued from the day to give him the walk he deserves). Walking my dog is great for him and for me (mentally and physically), and helps avoid deconditioning. However, any time consuming errands, social outings and/or trips will default to the wheelchair so I can conserve energy and actually enjoy myself.
My best advice is to get whatever mobility aids make sense for your needs! It’s easy to worry people will stare/ask questions and while some do at times, most people just don’t care because they’re the main characters in their own daily lives. Good luck!
Sure! I can’t find the exact one I have but it is similar to this! https://www.amazon.co.uk/Klarfit-Exercise-SilentBelt-Resistance-MagResist/dp/B07NBNNCC1/ref=mp_s_a_1_44?crid=2DAVWKCBBC60X&keywords=reclined+exercise+bike&qid=1669209611&sprefix=reclined+%2Caps%2C131&sr=8-44
I believe there are special tools to help pull them on. This is what came up first when I searched, but there are others https://www.amazon.com/Jobst-Compression-Stocking-Donner-Application/dp/B01LMO5ZJ8
Oof that's rough; I'm so sorry! It's probably worth mentioning that I don't drink alcohol at all and hadn't smoked weed for weeks leading up to that retreat and don't use any other drugs. Listen to your body, take as many breaks as you need, stay on top of your sleep and eating habits, and hydrate a ton!
Also, I know you had said in your initial post that you were drenched in sweat after exercising. I mentioned it in my first response, but I highly recommend Salt Stick capsules! I really think they made all the difference for me on all of those hikes. Also, the first time I tried them, I did a full body cardio workout, which was the most exercise I had got in a long while, and cardio is really difficult for me anyway. I thought I screwed myself and that I would regret it at work later that day, but I took one of the capsules and ended up feeling pretty damn good for the rest of the day, which is so rare for me lol.
These are the ones I have: https://www.amazon.com/SaltStick-Electrolyte-Replacement-Capsules-bottle/dp/B002IY96B0?pd\_rd\_w=LgUzU&content-id=amzn1.sym.deffa092-2e99-4e9f-b814-0d71c40b24af&pf\_rd\_p=deffa092-2e99-4e9f-b814-0d71c40b24af&pf\_rd\_r=CZVH5KGGHX5Q95EG3...
This neck fan has both cooling plates and heating! I have the original version without the heat
Oh yeah. Sodium tablets straight up are notorious for causing nausea so what you want to look for are Buffered Salt tablets. SaltStick is the really go to here. I also love Normalyte rehydration powder for upping my hydration and salt game. They have free samples on their website of both their flavored and unflavored powders. u/potsiewarrior turned me on to the brand and it’s been actually life changing for my mobility
Terramed has leggings with decent compression. Only downside is they are too sheer to wear by themselves as pants.
This is the one that works best for me with my apple body shape. I use one size down from the one they say I should get based on my measurements.
LODAY Waist Trainer Corset for... https://www.amazon.com/dp/B07H1C1YN2?ref=ppx_pop_mob_ap_share
Has anyone ever discussed the possibility of Raynaud's with you? I especially wonder since you commented on another post about pins and needles sensations and now mention your fingers going with and nails going blue. Those aren't necessarily covered under a diagnosis of POTS.
I use a foldable one I got from my local pharmacy (pretty sure it's a knock-off of the Hurry Cane), which I like well enough. I know a lot of other POTSies use a cane that can fold out into a chair, and I've heard a lot of great things about those.
Compression socks are such an easy no effort solution that I wear them just about every single day without issue. If you're self-conscious just wear long pants, no one will be able to tell your wearing them.
They're really not even a mobility aid unless you want to consider them that, athletes, nurses, people who travel, and people who work on their feet all day wear them too.
My doc wants me to wear waist-high compression stockings and I can assure you that's a whole nother story lol
I wear these ones from Amazon because they're really cheap and do the job. Comrad makes socks that are both compression and stylish and less medical if that makes it easier for you, they just cost more
This water bottle has been a game changer for me. I was looking for one with the time stamps but couldn't find one that was big enough and didn't have any obnoxious motivational slogans. Ended up writing my own on this one and it's been great. The carrying case is also awesome; I can shove my little wallet and phone in there and go. I prep my mix (i do powerade/salt/electrolytes/water but ymmv) before I go to bed so I can grab it out of the fridge in the morning and chug a good amount before I start my day.
Near constant nausea is one of my worst symptoms so I always have gaviscon, gasx, eno effervescing powder, arrowroot crackers, and jello on hand too.
For salt - Cup a Soup with saltine crackers is my go-to breakfast. V8 with an added pinch or two of salt when I need a boost. Pickles, jerky, salted nuts are also helpful. Cliff bloks with salt are pretty good too but can be high sugar.
For headaches - advil/tylenol doesn't touch them but robax usually takes the edge off.
Things I avoid: simple carbs (though you can pry my saltine crackers from my cold dead hands), alcohol, greasy foods, caffeine, heat... I'm probably forgetting some things.
Other things that help me (bear in mind I'm fairly new to this and don't have an official diagnosis yet, this is just the results of lord of research and trial and error): SLEEP. I cannot emphasize this enough; if I don't get 8-10 hrs per night I feel horrendous. CHOP workout program. Lower carb/higher protein and fat diet (my fats come from avo and coconut/olive oil).
Any questions feel free to ask :)
This is the one I got, it looks like its currently unavailable on amazon but you might be able to find it elsewhere or something pretty close to it! I think I paid around $60-$70 for it.
I have a pair of 20-30mmhg custom compression stockings that work SO well at controlling my heart rate, but they take me no joke 30 minutes to put on and are very uncomfortable to wear for an extended period so I only recommend them if you know your going to be on your feet for a considerable period of time
Day to day I wear these ones because they do the job, are pretty comfortable, hold up well, and are cheap
First, you need to check whether the tablets are buffered – it’s not standard. Cheaper ones will usually be unbuffered. Look on the label for “buffered” or “slow release” or similar wording.
Buffered tablets generally cause less nausea but some people still find them hard to tolerate.
And always take them with food.
I have heard several POTs specialists say that they encourage their patients to get their increased salt intake via food, either adding high-salt foods, or adding salt during cooking, or just sprinkling it on.
The reason being that it seems to be better tolerated.
This hand-out has some explanation and ideas, I think:
Another thing to consider is whether it is the extra salt, the extra water, or both causing the nausea.
It might be worthwhile backing off a little and seeing what happens. Your stomach may be able to adjust later to a gradual increase.
As to the salty taste in mucous, that might be something you have to put up with if the extra salt helps your symptoms.
Finally, if none of this works, please try your doctor again and ask them for alternative options.
Hope you can get it all sorted out to feel some benefit. It does sometimes take a while and there is trial and error.
What electrolyte supliments are you taking? Sodium, potassium, magnesium, and calcium are the big ones. If I am too low in one of those I get really thirsty. The electrolyte tablets that I take have all of those I believe. I usually take 3-5 capsules with a glass of gatorade if I can't stop being thirsty. I'll put a link to the ones I use:
Best wishes to you ❤
I do a lot of programming for my job and need multiple monitors, so I've always been frustrated that I feel better when I'm in bed but I'm limited to just my laptop screen there. I need to feel well and have my monitors.
Today I got the desk I'm linking below, and I'm thrilled!! It's sturdy enough that I can bolt my dual monitor stand to it just like a regular desk, and my CPU is exactly the right size to squeeze into the little shelf area (I didn't install the shelf). The keyboard tray adjusts so that I can stay in a more ergonomic position.
I do wish that the part that comes over my bed was a little longer, because I do have to sit pretty close to the edge to use it, but I improved that a bit by sliding the little lip piece over to the side. For $125, I couldn't be happier.
I don't profit from anyone using this link and there are tons of other similar desks out there. This just happens to be the one that works for me!
Message for the Sick has been so helpful for me. A tiny book but very powerful and comforting when I feel like you do.
Nope, absolutely no such thing as a cushion for a shower chair. Some people ask Reddit about stuff that takes literally 10 seconds to find online. Im sorry to bust your butt(pun intended), but honestly.
Sure! I bought this one https://www.amazon.com/DEERFAMY-Camping-Ultralight-Carrying-Backpacking/dp/B093H8C6XR/ref=mp_s_a_1_7_sspa?crid=39EBBVNN1V9CM&keywords=foldable+travel+stool&qid=1659466452&sprefix=foldable+travel+stoo%2Caps%2C490&sr=8-7-spons&ps... and was also looking at this one https://www.amazon.com/Lightweight-Collapsible-Telescoping-Retractable-Travel%EF%BC%8CHiking/dp/B09MK68VSL/ref=sxin_20_pa_sp_phone_search_thematic_sspa?content-id=amzn1.sym.707693a7-0d1e-4cb0-960c-55bd57be6bd4%3Aamzn1.sym.707693a7-0d1e-4cb0-960c-5... ❤️
I got one of those stools. It looks like a small bag but can be folded into a chair, which makes lines much more easy.
And I'm sorry but I would really reconsider your relationship if he doesn't WANT to understand you. I was fainting daily for some months and still my father told me to just pull myself together. Fainting still doesn't make people see it, when they can't feel empathy. Pls take good care of you, I did faint a whole lot until I hit my head the wrong way on the floor and now I have brain damage. Pls get a wheelchair before fainting, it's insanelye easy to severely get injured. And even mild concussions have long lasting impacts.
The stool https://www.amazon.com/Specone-Collapsible-Lightweight-Portable-Retractable/dp/B09MNLQ4XV/ref=mp_s_a_1_1_sspa?crid=38OZQBZ6E11FT&keywords=stool+carry&qid=1659437308&sprefix=stool+carry%2Caps%2C169&sr=8-1-spons&psc=1&spLa=ZW...
How do you feel about compression shorts or abdominal binders? Studies suggest they may be even more effective than socks, and I find them to be a bit cooler. I often use them with socks, but if you really can't tolerate socks, abdominal compression alone might be better than nothing.
There are lots of options, but it can be challenging to find the right one. I've heard folks on this sub recommend shapewear, binders with velcro like this one, or corsets. I personally use shapewear shorts that go from mid-thigh to high waist; for me, they're very comfortable and they seem to offer some small benefits to dysautonomia/pots symptoms.
There’s nothing you can do about people judging or making comments, just try and ignore it. I’m a wheelchair user due to POTS and it’s quite difficult for me to stand up or use my legs so I generally don’t in public but I still get endless stares, weird comments, rude questions etc. When I’m on my own, I usually just put my headphones in, turn up my music and try and zone everything else out.
How easy it is for your friend to be independent will completely depend on what type of wheelchair she has. If she has a standard wheelchair like this then her arms will get tired very quickly, and she will need a lot of help. If she has an ultralight custom fitted active chair like this then she will probably be able to self propel independently, but she still might want or need help for big hills or inclines etc.
I’m waiting on my first custom chair which means I have to let people push me because it’s difficult for me to self propel my current wheelchair. I don’t like it because I’d much rather be in control of my own movements. I would also much rather be able to choose to only let people I really trust push my chair, and at the moment I’m not able to. For example - I sometimes need my dad to push me and he thinks it’s hilarious to start pushing me and then just let go at random, ‘pretend’ to push me into the road, let me veer off and almost crash into the side of the path when he’s pushing me as a ‘joke’ etc. He also refuses to listen when I warn him about bumps or cracks which I know my castors will get caught on.
I second the food processor (I used for chopping nuts, finely chopping spinach, etc.), the blender, rice cooker, and waffle maker.
I also have a chopper thing I use when I make salads. I still have to cut the vegetables up a bit to make them fit on the cube blades but it saves a lot of time and energy. I also have osteoarthritis so chopping is painful for me.
I also think automatic mixers are worth it.
I think having good meal prep containers are great too. Whenever you have the energy, prepping meals for when you feel like garbage is really useful.
I use this one and love it! I just add heart rates, blood pressure, and the temperature outside (the high. Tx is too hot lol) in the notes section. They have the same one with a more polite book cover if you like as well
I've had pots for a few years and caught covid about 2 months ago, unvaccinated. It was really mild and I was able to move around still, but after it cleared up, my POTS symptoms were worse. I'm just now starting to feel back to normal POTS. Cardiologist said it would take 2 months at the start of it all, and therapist says the more extreme depression and anxiety will also pass which it has slightly. I just kept forcing myself to move around and do chores and stretches n such. Even repotting plants, or writing. Anything you can do to not get too stagnant. Push the fluids (Hydrant/LiquidIV), take a B vitamin (I use this every morning and it helps a ton: Jarrow Formulas Methyl B-12 &... https://www.amazon.com/dp/B01IJR5VM2?ref=ppx_pop_mob_ap_share) and some vitamin C. I'm also taking Midodrine which my doctor upped the dosage since COVID lowered my blood pressure even more and also did a round of heavy steroids while sick. Might still be an option for you. Hope any of this helps.
No problem. If a wheelchair is the right thing for you (and you can’t get one through insurance/your doctor), it’s probably a good idea to measure yourself and then go on eBay or other sites to look for a second hand active manual chair (some brands to look for include - rgk, quickie, tilite). Using a cheap basic wheelchair like this one will be difficult no matter how strong you are, it won’t be very comfortable to sit in and self propelling it is likely to damage your shoulders.
It could work but it depends how much support you need when walking. If you push down on the handles on a rollator it gives you more support, but with a wheelchair you can’t really get support using push handles without the wheelchair tipping backwards.
My legs are quite weak and I found that with a rollator I could take more weight on my arms whereas walking with my wheelchair I was having to really focus on using my legs to keep myself upright as well as pushing the chair forwards because if I pushed down on the handles at all the chair would tip back (and the chair I have is an invacare action 2ng - built for stability and not a very tippy active chair).
Another option if you’re usually with another person when you’re walking around could be a 2 in 1 rollator/transport chair. The Rollz motion is one of the nicer ones I’ve seen but you can also get cheaper versions like this one.
Have you looked into MCAS (Mast Cell Activation Syndrome)? The scientific literature suggests that many people with POTs also have MCAS--and a decent amount of women have the trifecta (POTs, MCAS, and Ehlers-Danlos Syndrome). I was recently diagnosed with POTs and am waiting to see a functional medicine doctor to discuss the other two conditions--but the more I read about MCAS the more I am convinced that it is the culprit for my nausea, tremors, and similar GI issues. I have been on a low histamine diet for only a week now and I cannot explain how much better I feel. The GI issues stopped, I have more energy, and my POTs episodes went from 4-7 times a day (with blacked out vision and occasional loss of consciousness) to only once every other day (without any vision loss). After two years of debilitating fatigue, constant dizziness, GI issues, and brain fog, I'm finally starting to feel more like myself again. Not going to lie--the diet is not easy (it requires a lot of cooking and prep work)--but the food is tasty and to me it is 100% worth it. I'm not a doctor, so this obviously isn't intended to be medical advice, but wanted to share in case it would help someone else feel better.
If you're interested in learning more about the diet, I really liked this book (https://www.amazon.com/dp/1624148468?psc=1&ref=ppx_yo2ov_dt_b_product_details)
Wow thanks for the suggestions! This is what I use to measure out salt .5 gram salt shaker
I also measure out the amount of salt I want in the day into a mini salt shaker so I’m able to evenly apply my salt while knowing exactly how much I’m using!
Frozen Pedialyte pops!
Theoretically, you could freeze any electrolyte water, these just happen to be easy
It's one of these dealies, ends up just a few inches thick, surprisingly sturdy (and I'm fat!) and the shoulder strap works great. If I didn't use a cane though I might have problems getting up again - it's a little low to the ground, like the height of a footstool vs a chair. But I have a cane so I lever myself up with it.
I like SB SOX Compression Socks... https://www.amazon.com/dp/B07G5JW68S?ref=ppx_pop_mob_ap_share socks They're light weight and don't make me too hot in summer heat. Alignmed makes posture shirts and things that help with back, etc. stability.
For the hypovolemia/pots, I find adding salt and lots of water helps (assuming your blood pressure is on the low side, consult your doctor). Keep your head above your waist when bending down (bend at the knees) helps too.
They're talking about a different chair, usually this one or ones like it
Such a good question! I'm navigating this at the moment. I have to take lots of little breaks to lie down and my kitten thinks this is the perfect time to wrestle and get me to play which I don't like as she gets rough and bitey. I've got a few solutions!
I keep a super long wand toy by the bed so she really has to run around for it. I also have a massive padded note board leaning against the wall by the bed so she can climb up it to chase the toy. I also have a teddy bear that I can hold and use for her to wrestle and bite so she doesn't do it to my arm! I also put her cat tree in my bedroom which has dangly toys on it and she'll just lie in the hammock and play with them and still be near me for company. And the best toy is a little electric ball that rolls around on its own that she can chase. It's rechargeable and honestly the best toy ever! I'll put some links for you. Other than that I am trying to establish a routine so that she knows to expect play at times of the day when my symptoms aren't so bad.
These are what I use. You can also get them in boots and Holland and Barratt.
I keep these on hand for my kiddos for when they're sick. The dyes kind of upset my tummy though. In the past I've bought the disposable bags from Amazon and made my own using my normalyte.
TRIORAL is my top recommendation! It's about $40 for 100 packets, WHO-formulated, and the highest concentration of both sodium and potassium I've found in any supplement. It tastes like chalk, so I mix it with Gatorade powder and it tastes nice and fruity.
I'm not a fan of the flavored one so I use daylyte hydration drops they sell from amazon (linked) or their own site
Anyone else use TRIORAL? Tastes like chalk but it's cheap as heck and damn if it doesn't bring the goods.
I like this bamboo cooling blanket. It's a much comfier summer sleep. I keep a water bottle next to my bed and occasionally use an ice pack for whatever part of me feels like it's boiling. As we get deeper into summer, I'll be using that ice pack more often. I haven't gotten around to buying nice sheets yet, but I'm thinking I want either bamboo or linen for their cooling, moisture wicking, and breathable qualities.
I always wear wood socks on my feet and it helps a lot. I had an electric hand warmer from Amazon, but I lost it when I moved. I like to use a hot water bottle hand warmer that straps around the waist at home. Hot water bottle
This slips on any water bottle, so you can use whatever bottle you prefer.
This is what I got now I do it in the yard while relaxing. Philips SatinShave Essential Women’s Electric Shaver for Legs, Cordless Wet & Dry Use, HP6341/00 https://www.amazon.ca/dp/B009T0537W/ref=cm_sw_r_cp_api_i_WBK6HCXZPG0MAFPQXRWX?_encoding=UTF8&psc=1
I recently saw a long handled razor holder like this one !
I don’t have an answer to your question, but I have a suggestion that may help: I bought this great cane chair a few years ago from Amazon and it is a big help when I’m in a POTS cycle.
The one I have is no longer at this link, weirdly, but this one is very similar: https://www.amazon.com/gp/product/B002VWJYT8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
The original cane chair aI had prior to the one above one was more comfortable to hold, but was a pain in the neck to close and fasten every time I moved. That one is here: https://www.amazon.com/gp/product/B006JPYVRI/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I originally got one from my local med supply store, but it was ungodly uncomfortable and impossible to get on properly by myself. I asked for recs here, ordered a bunch of the suggestions, found one that works for me & returned the rest. It's definitely a trial and error thing.
This is what I landed on: https://www.amazon.com/dp/B07H1C1YN2/ref=cm_sw_r_cp_api_i_31HWZY3Z4EWBS51T4F03?_encoding=UTF8&psc=1
I use the version without straps and wear 2 sizes down from what their measurements suggest so it's tight.
Rides I have no problem with, however standing in line was a big issue for me. I purchased a seat/cane and that helped a lot. We also got the daily passes that allowed us to skip some of the lines. This chair is similar to mine: https://www.amazon.com/gp/product/B002VWJYT8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I have really bad pooling in my hands. Wearing these with the rest of my compression gear helps: https://www.amazon.com/dp/B003AKOLB6/ref=cm_sw_r_cp_api_i_6DGN84NCWMWCNMDKZW8B?_encoding=UTF8&psc=1
I also end up putting my hands up on my shoulders a lot on walks, which helps too
It’s on Amazon. This is the brand I got.
Literally using my Battery Operated Fan, Super Long Lasting Battery Operated Fans for Camping, Portable D-Cell Battery Powered Desk Fan with Timer, 3 Speeds, Whisper Quiet, 180° Rotation, for Office,Bedroom,Outdoor, 5'' https://www.amazon.com/dp/B07QKMZ4NR/ref=cm_sw_r_awdo_4W82839V5JZEEKXGT3J8 as I type this lol saves me!
I have something similar to this fan that I keep handy during hot months.
Neck Fan, Portable Fan Personal Fan Hands Free Bladeless Neck Fan 3 Speeds Adjustment 360° Cooling USB Wearable Fan Rechargable Hanging Neck Fan for Women, Men, Office, Travel, Outdoor https://www.amazon.com/dp/B08ZRVLBZ1/ref=cm_sw_r_apan_i_9JDCB8398EWXMHBCQCEJ
My kids are adult(ish), but I recall how awful those early years were!
One thing I found to be helpful was telling them (in age-appropriate terms) about my limitations. They were a huge help once they understood I just couldn’t do certain things. Kids are a lot more accepting and understanding than we often give them credit for.
Another big help was buying a cane chair. It was ugly, yet one of the most brilliant things I’ve ever bought. It looked somewhat like this one, however mine was gray and had a larger seat: https://www.amazon.com/Drive-Medical-Folding-Lightweight-Adjustable/dp/B005JIMORU/ref=sr_1_4?crid=3QKX1A8GFY3XB&keywords=Drive+medical+cane+chair&qid=1652289351&s=hpc&sprefix=drive+medical+cane+chair%2Chpc%2C76&sr=1-4
Next, if you’ve not gotten one yet, tell your doctor you need a handicap pass so you can park closer. I argued with my doctor because I didn’t want one - I figured there are plenty of people far worse off than me with just POTS, but he made some compelling counter arguments. Thank goodness I listened to him. I don’t use my pass often, but when I need it I’m so glad it’s there.
Here you go!
I get the matcha from Amazon here: https://www.amazon.com/gp/product/B003KYSOCE/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
(it’s a bit pricey, but it’s the best tasting one I’ve had. Make sure your matcha comes from a radiation-tested company. Apparently due to the nuclear fallout there are places with unsafe food).
1/2 -1 tsp matcha powder 2 oz water 3 oz milkadamia original macadamia milk (or any other plant milk) 1 oz canned coconut milk (I use ArroyD) 1 1/2 tsp sugar or to taste (I use Florida crystals)
PREP ALL THINGS PRIOR TO HEATING INGREDIENTS!
Use a small sieve to help break up the matcha into a matcha cup or shallow bowl
Place the sugar into a large, 4-cup glass measuring cup or other high sided container. (I use this frother and place all the milk and sugar in it at once: https://www.amazon.com/gp/product/B07CNG6RM7/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1 )
Heat the water to 175*F (I use an electric kettle that has preprogrammed temps - 175 is “green tea”.)
Pour water over matcha and whisk in a “zigzag” formation gently but quickly while the milk frother is running.
While you are whisking the matcha heat the two milks 160-175*F.
Pour the milks into the sugared 4-cup glass measuring cup and froth with a milk frother.
Pour the milks into the matcha and swirl gently by hand to combine.
It is ten times easier to do this if you have a milk frother, an electric pre-programmed kettle, and some matcha supplies (bowl, wood whisk, etc). Luckily you only need to buy the supplies once.
Matcha is good for POTS people because it contains L-theanine which keeps you from getting that “jolt” that coffee or tea can give.
It’s helped me a lot with my blood pooling and I sleep better which then helps all of my symptoms. It did take about two months for me to notice a difference. Now if I sleep in another bed I don’t lose the benefit quickly, but I do notice I don’t sleep as well.
I bought a wedge to put under my mattress from Amazon. There are different incline amounts as well.
My partner was struggling with sweating overnight no matter the room temperature, so my mom suggested these bamboo sheets: https://www.amazon.com/dp/B071H4TKJM/ref=cm_sw_r_cp_api_i_2HWH5YM69H8GM2X81ZXB (Not sponsored) They’re really breathable plus they have deep pockets and an elastic securing strap which I love because lifting up the mattress to remake the bed every day is so exhausting. I haven’t had to resecure it between weekly washes in the months we’ve had them. Hope this helps :)
This is the one I have, and the bamboo ones are cute too if you search spa stools on amazon or google. Mine is a year old and looks brand new. $30, not bad!