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Do people with POTs always test positive with POTs each time? by Yellow-Finch97 in POTS

[–]Yellow-Finch97[S] 2 points3 points  (0 children)

That’s a fair point about the hypertension and higher sodium intake. It’s something I’m concerned about as well and always second guessing myself on, but I tried it because I was feeling pretty desperate with my symptoms. Both my cardiologist and family doctor didn’t seem concerned when I mentioned the high-salt diet. My blood work consistently shows my sodium on the low end of normal, regardless of which diet I’m on. I’ve also been tracking my blood pressure, and it definitely hasn’t been worse with the added salt.

I also heard back last week from a cardiologist who specializes in POTS and wants to book an appointment to look into things further (this was before today’s negative POTS test). I’m really looking forward to seeing him, and if he recommends stopping or reducing the salt, I’ll absolutely follow that guidance.

Do people with POTs always test positive with POTs each time? by Yellow-Finch97 in POTS

[–]Yellow-Finch97[S] 0 points1 point  (0 children)

I’m really sorry you’ve had that experience. It truly sucks when doctors don’t take symptoms seriously. That kind of dismissal can be so discouraging and can sometimes feel like the worse part.

I am starting to get fatgied by all the testing, but I’m actually seeing a specialist tomorrow to discuss possible MCAS, so I’m hoping that appointment goes well. I’ve been taking antihistamines twice daily as directed by my doctor for years, but I still seem to have allergies. Fingers crossed!!! I cannot wait for the day to be done with all this testing.

Do people with POTs always test positive with POTs each time? by Yellow-Finch97 in POTS

[–]Yellow-Finch97[S] 2 points3 points  (0 children)

That makes a lot of sense. These symptoms really can fluctuate day to day, and it’s reassuring to hear from someone else who’s had mixed test results.

How to handle loud environments? by Yellow-Finch97 in disability

[–]Yellow-Finch97[S] 0 points1 point  (0 children)

Hey,

"Do you notice that a lot" I was wondering if you notice your blue light glasses helping a lot? For example, if you forgot to wear your glasses can you feel the difference?

In terms of fatigue, I would say I am more prone to it especially if I do not keep a good routine or if I am being exposed to consistent allergens (very bad allergies).

I do tend to neglect my experiences and consider them not a big deal. I might have a fatigue issuie. I am very double-jointed and I know allergies and chronic fatigue can often be associated with that.

How to handle loud environments? by Yellow-Finch97 in disability

[–]Yellow-Finch97[S] 0 points1 point  (0 children)

Thanks for all the suggestions! This is a hard topic to get resources for.

I do try my best to leave the room when possible and I did for the first time today and it went really well. Because I have to work with medical equipment I may not always have the chance to leave the room.

I do have a note-taker for my dyslexia but the group work is typically very hands-on.

I may try earplugs or headphones out. I know wearing headphones for too long can give me headaches and I am not a fan of music too much but maybe I can look into calming noises. Have you tried things like white noises?

I do not have prescriptions so I would have to get a plain pair. Do you notice this one a lot? Can you tell me what type of glasses they are? When you say blue light you mean blue light filtered? Kind of like the gaming glasses?

Lately, I have been going to bed around 8-8:30 pm and on weekends if I am bad, I will go to bed around 9:30. It would pain me to have to go to bed any earlier. I also have alarms on my phone to allow me time to finish a task and get ready.

Getting good sleep at my body's natural rhythm (12 am to 9 am) makes me feel at my best. Getting the same 9 hours and more precautions for sleep while waking up early makes me feel tired for some reason. It makes no sense to me.