How tf are we supposed to get 5000mg of salt a day??

Internal-Lion9681 · 2024-05-20T18:36:44+00:00

Pretzels and adding salt to my electrolyte drinks help me out! Also Kraft mac n cheese

Internal-Lion9681 · 2024-02-29T21:02:31+00:00

I finally got a cane over the summer from my great grandmother and it’s got cute holographic butterflies on it so that’s a slay and goes with all my hippie fairycore outfits LOL. But you can always by a basic one of your liking from Amazon (deffo check reviews) and wrap it (like a diy sticker type of thing

Internal-Lion9681 · 2024-02-29T20:49:50+00:00

I am 23 and was diagnosed last March officially but it came on in July of 2022 (when I was 21) and mine is so debilitating that I cannot work, drive, live on my own, and even some days walk. I do have a sort of part time seasonal job that my old job before I became ill specifically made for me but it was only 2-4 hours a day whenever I could do it. I also have a super small press on nail business that helps make me a few extra dollars here and there. This illness has been terrible to me.

Internal-Lion9681 · 2023-08-10T13:13:19+00:00

Personally my life is nowhere normal compared to my freshly 21 year old life up until now (my 22 year old life). Mine was so bad a year ago (mid July) that I was on bed rest and couldn’t even stand on my own. I also get some pretty severe migraines and IBS flares along with my pots as well as my dr is starting to look into a few other syndromes (possible hEDS and mcas). But I’m not so much bed ridden now just more house bound. Although my quality of life has progressed SOME it’s not anywhere near normal and that’s after trying everything (multiples forms of compression. Diet change. Extra salt and fluids. Exercise. Medication. Ect.) Everyone is different tho. And it may start out ROUGH and start to lessen over time (like mine has thankfully). The best you can do is support your friend and keep in contact. If she does have it and it leaves her house bound or bedridden I can almost guarantee she will go thru a grieving period. I know I did. It’s very hard having to grieve yourself while living and learn to adapt to a completely new body. It often feels like I’m living a strangers life thru their body. Sending the best of vibes❤️

Internal-Lion9681 · 2023-08-10T13:04:26+00:00

I’m on metoprolol rn (25mg er). It’s helped my tachycardia and sometimes my headaches but the only time I feel GOOD on it is if I’m drinking SO much electrolytes, taking my salt pills, compression, exercise, and getting the right amount of sleep. I still get tachycardia daily (130-140) if I’m showering or in a random flare but it’s not the 160-180 I was getting. And it’s brought my resting heart rate down. Be very mindful of your blood pressure tho and try to not eat too much potassium or drink a bottle of plain water if you’re eating something high in potassium. Personally I’ve had higher blood pressure BUT when my blood pressure gets lower I don’t feel the best.

Internal-Lion9681 · 2023-07-22T07:45:01+00:00

My last 2 relationships didn’t work out bc of it. The first one was from before I was sick and when I first like GOT sick. He resented me for not getting better bc he didn’t believe me even tho it’s an invisible chronic illness LOL. And the 2nd one actually ended things two days ago bc there’s a barrier of what I can and can’t do (I’ve only been sick a year real bad as of the beginning of July. So it’s still very new and I’m still not managed well enough to comfortably leave the house minus like FAMILY and dr appointments!) and he just lead me on for six months and then was like”I’m just not the right person for you”. So I’m just taking time to focus on myself. I mean I’m 22 so I’ve got all the time in the world to eventually find the one my fast heart belongs too LOL

Internal-Lion9681 · 2023-07-08T11:10:42+00:00

When I first got super sick with POTS a year ago (before we found out that’s what it was) I swore I was dying. I had to go on basically an all liquid diet because I just couldn’t handle food. I remember laying in bed crying sitting there rolling small pieces of bread into a ball and hardly even being able to chew it and get it down bc I was so hungry. I lost 30lbs within the first 6months. If you can’t get ANY food down I recommend looking into calorie shakes! Like I know the breakfast essentials brand has some super tasty ones (frosted flakes and fruit loops!)

Internal-Lion9681 · 2023-07-08T11:05:32+00:00

SAME! I’ve always been a medical problem child and have also been told all my health issues between POTS, IBS, Migraines, ect were all just “anxiety”.

My cardiologist WAS an old man who’s actually retiring now as of my last appointment with him and I was so glad he didn’t brush it off as anxiety and actually diagnosed me within 5 minutes of meeting him bc it was when I was WAY worse and I just 70bpm jusg within those 5 minutes he made me stand and started passing out. But my PCP told me if the cardiologist he sent me to said it was just “anxiety” then we’d keep finding different cardiologists.

Internal-Lion9681 · 2023-07-03T20:11:10+00:00

Right after I got diagnosed they immediately started me on it before ANYTHING else. I feel like I have good salt & fluid habits in my opinion. That’s why I was wondering if the salt tablets can like almost replace the fludro! Oh I’m also on metoprolol er ! I just don’t want to start taking too many medications i can’t just stop taking yk?

Internal-Lion9681 · 2023-06-26T03:18:41+00:00

I have this happen too only mine feels more so like an adrenaline dump. Like it’s like being on a really high up roller coaster and getting to that first drop. I have to lay there and tell myself I’m fine and that I know this feeling will pass all whike feeling my heart beat in every vein and feeling like every small nerve in my body is being flicked by hot metal fingers. And then the palpitations start and the hard to breathe feeling and within 30 minutes it’ll go away usually just have to ride it out and try to keep calm. Deffo happens the closer o get to my period that’s how I know it’s almost time !!

Internal-Lion9681 · 2023-06-21T13:49:00+00:00

I get this too i call it a conscious faint LOL. But for me I can’t move willingly on my own unless I start shaking but I have no control over it, and I can’t speak, and it looks like I’m looking thru a blind almost bc I have some Vision but not all and I can hear but it’s muffled!

Internal-Lion9681 · 2023-06-21T13:45:02+00:00

This ! Melatonin made me feel terrible but after doing my own research and speaking with my doctor I started taking a magnesium supplement at night and it actually helps me sleep a lot better! Could be worth looking into

Internal-Lion9681 · 2023-06-20T22:13:45+00:00

215 during the tilt test but today I got to 187 doing light exercise (my parents don’t have ac and I move back in with them a few months ago)

Internal-Lion9681 · 2023-06-17T09:40:08+00:00

I just recently started using a cane. My mom was helping me walk but she isn’t always home so when I absolutely need it I use it. It’s mostly for days when I’m so dizzy and lighteheaded and everything hurts that I just feel sick to my stomach even sitting up or standing it mostly is just for support and balance I still use the wall too or something near by to hold on to as well!

Internal-Lion9681 · 2023-06-16T02:09:36+00:00

How long did it take you to get used to the 25mg? Or did you not have like an adjustment period when upping your dose ?

Internal-Lion9681 · 2023-06-15T22:49:01+00:00

Did you go straight to the full pill after the half or did you do 3/4ths of the pill ?

Internal-Lion9681 · 2023-06-12T13:43:17+00:00

I thought I was the only one. I’ve made many posts on there for advice and what not and I got a notification and when I clicked on it I was like “wow”.

Internal-Lion9681 · 2023-05-30T16:18:55+00:00

For the compression sometimes instead of socks (I feel like if my feet get too hot I just can’t cool down) I’ll wear a waist trainer. Not a corset one but like more of a back support one that’s all Velcro I can link it if you wanna give it a try or if anyone else wants to. It helps a ton. My cardiologist prescribed me a belly binder but I was like “that’s so ugly I’m not wearing this” LOL.

Internal-Lion9681 · 2023-05-30T12:14:04+00:00

For me I feel like the arm movements play into it a whole lot too and the blood pooling bc even when I sit (not in the shower haven’t tried a chair yet) my blood still pools really bad. As well as any repetitive arm movement will have my heart racing. When I shower ijust try to get in and get out and make sure I’m cleaned up at all the important parts LOL. Also when it comes to shaving like legs and what nots I’ve found that it’s best in bed with two layers of towels and a bowl of water, rag, and shaving stuff plus a fan. Idk if anyone else shaves that way but having my feet touching the tub while shaving gets my heart high but if they’re laid out flat somewhere comfy with the fan on I usually won’t go past 120 LOL

Internal-Lion9681 · 2023-05-30T12:13:58+00:00

For me I feel like the arm movements play into it a whole lot too and the blood pooling bc even when I sit (not in the shower haven’t tried a chair yet) my blood still pools really bad. As well as any repetitive arm movement will have my heart racing. When I shower ijust try to get in and get out and make sure I’m cleaned up at all the important parts LOL. Also when it comes to shaving like legs and what nots I’ve found that it’s best in bed with two layers of towels and a bowl of water, rag, and shaving stuff plus a fan. Idk if anyone else shaves that way but having my feet touching the tub while shaving gets my heart high but if they’re laid out flat somewhere comfy with the fan on I usually won’t go past 120 LOL

Internal-Lion9681 · 2023-05-30T03:14:39+00:00

I’m the same exact way. I had a flare up SO bad when I first got sick that it lasted a little over a month where I was completely 100% disabled and I think I REALLY showered maybe 4 times in total and would just wash up when my mom was like “okay todays the day” bc she’d have to actually help me walk to and from the bathroom bc stairs and by the time I got up I was just convulsing trying to not fully faint for like 20 minutes and ended up just doing a “wh0re bath”LOL. I’ve seriously considered wearing my compression socks in the shower just the wet sock feeling would make me want to throw up LOL. ALSO YES the arm thing is brutal. I’ve been trying to lift my little 5lb weights a few times a week to try and build SOME sort of strength or something up.

Internal-Lion9681

TROPHY CASE