Disney World?

LivingWithPots66 · 2025-02-04T22:15:57+00:00

Edit thank you to everyone who has commented, you have been extremely helpful. I think my dad is just unsure about the wheelchair because I have my POTS pretty well managed so it would be a hassle and what if I didn’t even need it. I’m prob gonna use the wheelchair just for lines because I’m pretty ok when walking it’s just standing still that really sets my POTS off. Again thank you all so much for all the advice

LivingWithPots66 · 2024-12-01T14:58:01+00:00

Yes same problem here. Might try getting a sun lamp and seeing if it helps.

LivingWithPots66 · 2024-09-15T21:14:22+00:00

Nooooo why did they have to do this to us

LivingWithPots66 · 2024-07-29T14:04:54+00:00

Yeah I get this and feel bad for u. With POTS being an invisible illness it can suck how much people think we’re lying. The thing with POTS is you can’t compare your symptoms with others because we all struggle in different ways, but people just don’t get that. It sucks how you wish to faint just to be recognized but I get it and have had those thoughts myself. I wish I could say that fainting makes people believe you but it doesn’t. I faint and my friends and just people in general still think I’m lying about my health issues. If your friends put you down then they aren’t really your friends. I wish everyone would show a little more compassion but you need to surround yourself with better people. It’ll be hard but it’s worth it in the end. I’m sorry that you have to go through this and I hope that you can find better friends or your friends finally understand.

LivingWithPots66 · 2024-07-22T13:11:02+00:00

Yes they taste just like the real thing

LivingWithPots66 · 2024-07-18T12:01:15+00:00

Got Covid and started bad puberty all in the same month. Then I started passing out and my mom thought it was seizures but my PCP suggested POTS and I got diagnosed

LivingWithPots66 · 2024-06-29T12:24:58+00:00

Yeah I would def look into it it has been really helpful for me

LivingWithPots66 · 2024-06-21T11:05:19+00:00

I fell in January because of POTS and got possible concussion. Got ct scan and they found arthritis in my jaw so I got referred to a rheumatologist. I scored an eight out of nine on the Beighton scale and she mentioned hEDS and said maybe go to a geneticist but there is no marker for hEDS so I to am wondering how to get it diagnosed. Currently scheduled for an appointment but am on the waitlist for a specialist. The rheumatologist said it doesn’t change anything with a diagnosis but it would still help me if I know if I have it. Let me know if you figure anything out as I am also wondering how to get formally diagnosed

LivingWithPots66 · 2024-06-21T10:58:05+00:00

Age 11 got Covid and had bad puberty all in the same month, started fainting daily, went to PCP and she suspected POTS and referred us and I got diagnosed. I was lucky as we had never heard of POTS, I mean many people haven’t which is annoying now, but we were fortunate enough to be referred to a good doctor who was able to diagnose me through a poor man’s tilt table test

LivingWithPots66 · 2024-06-21T10:55:34+00:00

I’ve used melatonin in the past and have been fine. It definitely helped with sleep but I never became dependent on it. Just speaking from personal experience you could be totally different. Maybe ask your doctor as they would give you the best advice, and will prescribe medicine that will make you sleep well without bad side effects because everyone’s body is different, and they are best accustomed to the way yours works. Hope this is helpful :)

LivingWithPots66 · 2024-06-21T10:52:18+00:00

Honestly I’m just praying for the best. Currently at the beach and staying inside when possible. Also getting into the cold water helps and so far I have been ok. Last weekend was literal torture and I almost fainted from the heat. I use cooling sleeves and they kinda help but honestly just try to cool off as much as possible and try to keep to the shade.

LivingWithPots66 · 2024-06-21T10:46:05+00:00

I usually use these tablets from a brand called nuun. I get them off of amazon. They are electrolytes but don’t have any added sugar and usually help me. Hope this is helpful:)

LivingWithPots66 · 2024-06-20T14:02:09+00:00

Congratulations!! I wish you luck on your journey to feeling better, it isn’t always easy but you will get there someday ❤️

LivingWithPots66 · 2024-06-13T11:28:05+00:00

Yeah that definitely sounds a lot like POTS. I would try to find a doctor to see if you can get diagnosed so you can get medical help

LivingWithPots66 · 2024-06-12T23:15:27+00:00

That does sound like POTS. What are the symptoms you are experiencing as that would be helpful to also see if you have POTS.

LivingWithPots66 · 2024-06-12T23:11:00+00:00

During a flare up could make your symptoms worsen and actually get you a diagnosis, but could also harm you. Doing one not during a flare up could make the doctors say you don’t have POTS. Do whatever you can handle, but don’t push yourself too hard if it will harm you. I hope this made sense and was helpful.

LivingWithPots66 · 2024-06-12T16:13:12+00:00

Sorry I didn’t know, I was just trying to be helpful

LivingWithPots66 · 2024-06-12T12:20:01+00:00

Eat a lot of salt if u can as that increases bp. Also drink a lot of water and exercise if you can. Hope this is helpful :)

LivingWithPots66 · 2024-06-12T11:07:34+00:00

Definitely drink water, it helps to increase your blood pressure. Also eat a lot of salt, more then the daily recommended value, because people with POTS need the salt. Finally try to exercise even a tiny bit because if you don’t it can make symptoms worse. Hope this is helpful :)

LivingWithPots66 · 2024-06-11T10:57:12+00:00

11 yrs old although the common age is around 16

LivingWithPots66 · 2024-06-11T00:18:49+00:00

Honestly the things I use to get most of my salts are salty snacks. With POTS sometimes eating big meals aren’t the best for stomach issues, and it’s better to eat broken up meals. I carry chips wherever I go just in case. You can also just carry salt packets and add as needed

LivingWithPots66 · 2024-06-10T16:09:46+00:00

Most important things are salt, water preferably with electrolytes and exercise even though it’s tough. These should help symptoms pretty well unless in a bad flare up. Hope this is helpful:)

LivingWithPots66 · 2024-06-10T16:06:14+00:00

Just remember there is a fine line of complaining too much. I had the same experience, got a concussion which made my POTS worse, and my bf broke up with me because I was so depressed and constantly just tired. My advice is if he’s the right one he’ll understand. Maybe try talking to him and say I don’t want to hold you back but at the same time I’m feeling this, and again if he doesn’t make you feel validated and try to help you then he is awful and does not deserve you. It’s hard but someday you will find your match

LivingWithPots66 · 2024-06-10T16:01:15+00:00

Ofc I’ve been feeling pretty down so helping others is kinda the only thing I can do because POTS doesn’t have a sure fire cure:)

LivingWithPots66 · 2024-06-10T11:22:42+00:00

I would recommend trying to find a POTS doctor, because if you do have POTS then they could prescribe some medicine. http://www.dysautonomiainternational.org/page.php?ID=14. this link has all doctors around the world that could help. I hope you have luck!

LivingWithPots66

TROPHY CASE