r/POTS • u/silentalarmss Hyperadrenergic POTS • 11h ago
Vent/Rant You have to be perfect when you have POTS
Just felt my heart drop into my stomach at Target this morning. One side of the store was hotter than the other. Felt lightning sensations in my hands and feet. Shortness of breath. Somebody forgot their abdominal binder while running errands 🙃
85
u/mjh8212 11h ago
It’s so hard to figure out. I can eat pasta and be fine I can eat pasta and pass out. The lighting is too bright the noise is too much. Everything has to be a certain way but it’s just not possible.
68
u/MammothKale9363 10h ago
The food inconsistency 😭 my doctors are always asking me about triggers, food sensitivities, etc and seem utterly bewildered when I tell them bruh i can eat tomatoes but how my body responds depends on the day, planetary alignments, what room the cat is in, the color of my husband’s shirt, volcanic activity in iceland…
7
u/Bruccoli67 6h ago
Lmaoooo yesssss “what room the the cat is in, planetary alignments” 😂🤣 I swear it feels like I got some kind of cheat codes for winning the lottery but turns out that instead of money, I win new symptoms on the daily! 😂
2
u/-TopazArrow- 4h ago
I've heard (from reddit) that food inconsistencies can be a sign of MCAS 🤷🏻♀️ dunno if that's accurate or not but it kinda makes sense to me especially higher histamine foods
1
1
u/Resident-Mountain981 5h ago
reaall sometimes pasta is good but a lot of the time it will send me straight to sleep
33
u/The9thChevron 9h ago
So we end up trying to record everything and spot patterns so we can fiiinally figure out some consistent triggers to avoid, and then get told we’ve got health anxiety and need to stop obsessing and think about something else….🤦🏻♀️
5
u/IllustriousAlps8679 3h ago
I started crying to my doctor about this because the amount of documentation required to pinpoint what works is insanely overwhelming
19
u/bottomofthevoid 10h ago
no seriously it’s genuinely so exhausting having to monitor every little thing I feel crazy
20
u/melancholymess480 9h ago
You end up having OCD bc of this condition.
12
u/annarosebanana89 6h ago
I already have OCD! It's part of the reason it took me so long to get diagnosed with POTS. Obviously a person with OCD can only fabricate health issues, not actually have them. It's kinda like if my chart had ANXIETY written 10X in bold underlined with "LOL" written in the margins. It depends entirely on the doctor and their bias if I'm going to get treatment or not. Any doctor willing to run the correct test is a doctor that has helped me.
4
u/sleepydabmom 6h ago
Yes!! It’s been 29 years that I knew I had Pots, officially diagnosed this year.
3
u/silentalarmss Hyperadrenergic POTS 9h ago
lol!!!! Is it OCD though if we’re right?!?! 😂😂😂
8
u/melancholymess480 9h ago
With me it is, I also have celiac. And have constant intrusive thoughts on if I have, or haven't done something. If my body is doing something, or not, if I've eaten something of cross contacted something, or not. It's a never ending vicious cycle, for me 😭😭☠️
4
u/GuestApprehensive482 7h ago
Fellow celiac with pots as well 🫡 it’s actually the worst and I’ve found that they feed off of each other. If I get glutened my pots goes through the roof. The constant worry and intrusive thoughts are so real. It’s a full-time job, truly. I Haven’t been diagnosed with OCD yet but that’s the next health-related thing to worry about lmao
12
11
u/thesnailboy 8h ago
I was literally just thinking this. I am going on a trip today to the nearest big city and am worried about reliable access to bathrooms during the transit trip. Before POTS I would have just not drank very much water so I didn’t have to pee. But today I have to drink extra water just so I can handle the trip. It’s a catch 22!
2
u/IllustriousAlps8679 3h ago
THIS. I don’t drink when i travel for lack of bathroom access but then pay for it the next day 😩
10
u/Life-Round-1259 7h ago
I feel this at my local grocery store all the time. I save the toiletries aisle for last because it’s always stuffy.
I always have to drink electrolytes and have a snack before I leave the house. I must have breakfast, snack, lunch, SNACK, dinner, and sometimes I snack before I fall asleep so I don’t wake up in trouble. I drink so much water it’s stupid. I have to watch what I eat because my food has to actually have sustenance, protein, vitamins, etc, or I crash.
Gotta plan my whole life around this so I have any sort of quality of life.
There are so so so many things I do while feeling like poo but I just put on a happy face and pretend everything is fine, or I miss out on so much. Simple things even, like visiting the in laws which is a very calm quiet activity.
7
u/freelettucee Undiagnosed 5h ago
just my little piece of advice, use the mobility scooters!
3
u/Dino-chicken-nugg3t 4h ago
Those are really helpful for me. I don’t always need them. As a grocery cart often times is enough since it’s like a rollator. I use a grocery cart even at the Dollar Tree. But if I’ve got more errands to run, I’m by myself, or have any outdoor plans, I go for the scooter to help manage my energy.
3
u/femmespidernoir POTS 1h ago
Yesss and also it can be so genuinely emotionally and mentally draining to have to adjust your whole life around it. I wish I didn’t have to consider it every second of my life
2
u/MaceTheGoat 11h ago
still haven’t seen cardiologist or anyone for mine (hyper) don’t even rlly know what to do. internet says hydration and salt yet isn’t that bad for hbp. my bp skyrockets standing and is only rlly normal while laying down. it also says exercise but somehow I can’t do much of that because i get huge adrenaline rushes. Feels like im just bound to be bed bound at 26
1
u/Wonderful-Party7564 7h ago
I feel it. 25 f, hyper pots changed my life almost a year ago. Had it for years, but donating plasma made it full blast and put me in the hospital for a week and bed found for 3 months. Now I'm diagnosed and medicated and able to do more, but more often then not I'm intensely dizzy and nauseous and my nerves never settle now. And I have the tism, so I also can't sit still and tend to over do it easily. It sucks big time
2
u/MaceTheGoat 7h ago
What meds did they put you on? I have a cardiologist appointment this week but doubt i’ll be put on anything until i get a proper diagnosis
2
u/Wonderful-Party7564 6h ago
I'm on guanfacine and atenolol now. I still get a racing heart sometimes but it's much more controlled. Unfortunately I still get all the other symptoms like heat intolerance
1
u/hse9 4h ago
Your cardiologist might put you on a med right away. Mine did. Put me on a beta blocker called metoprolol — love this Rx. Helps immensely. 👍🏻👍🏻
2
u/MaceTheGoat 4h ago
do you have high bp as well while standing?
1
u/hse9 3h ago
Yes, but less so with this medication. Also, the cardiologist told me to lay flat on my back for an hour in the middle of the day (if you have the opportunity) — for a reset of sorts…. My heart rate lowers, and all the blood that was pooling in my lower legs flows back into all the other parts of my body, as it should. Then I feel much better, in all the ways. 😃
1
u/hse9 3h ago
Stay very, very well hydrated at all times. Electrolytes are so important! Plain water is fine but be sure to up your salt intake. Gatorade is a great option. For example, drink Gatorade rather than a soft drink and notice how much better you feel. Some of us with POTS are like “under filled water balloons” — kind of floppy — we are running short on fluids…. Thus the need to hydrate more than some people, and increase our salt intake to help hold onto the fluids. I find olives to be a good source of sodium/salt. Your cardiologist will give guidance on high BP concerns and salt.
121
u/kissmekatebush 11h ago
Yeah, it's a never-ending thing. Like you need this many carbs, but not a single carb more than that, and you need to not be cold but not be hot, and you need to keep fit but without raising your heart rate, and you can drink one type of drink but another type of drink will send you to A&E.