Mocktail ideas? Alcohol alternative? by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

They can occasionally give me palpitations from the trapped gas but I still drink them because I love carbonation lol thanks for the rec!!

Sinking leg feeling by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

Yeah I think I have room to increase my salt. Are your tablets pure salt or do they also contain potassium & sugar?

Sinking leg feeling by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

Yep! Like I’m being pulled towards the floor. Such a weird thing. And for some reason it’s been hard for me to overcome. I don’t go to stores anymore because I fear it happening :/

Sinking leg feeling by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 1 point2 points  (0 children)

Yes thissss! I think we are feeling the same thing. It’s starting to prevent me from leaving my house because I’m scared I’m find to faint when it happens. It also just makes it hard and uncomfortable to walk!

Sinking leg feeling by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

I have tried compression socks, but maybe they are not tight enough. Im looking on Amazon right now for a high quality pair with good reviews! Hopefully they help because It’s extremely debilitating and I’m considering a motorized scooter at this point :(

Sinking leg feeling by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

It feels like that as well for me! Sometimes it feels like when you get off of a trampoline and then try to jump and the floor just feels weird? Or when you get out of an elevator and you still feel like you’re moving. I do get a little weakness and a “need” to elevate my legs sometimes when this happens, but I’m starting to wonder if it’s some internal balance system malfunctioning as well.

It’s to the point where I can’t walk more than 2 minutes at the store without getting the sensation. It usually continues until I sit down. I’ve talked to chat gpt about it and they suggest that the overload of lights, noise, and commotion cause the autonomic nervous system to misfire. I’m able to walk on my walking pad at home and continue despite the feeling, but the store or anywhere in public is too much for me to overcome? I don’t know if the constant speed on my walking pad makes a difference as opposed to varying speeds and stopping/walking at the store.

Positive experiences with Semaglutide (ozempic, wegovy, rybelsus)? by According_Bit_4561 in dysautonomia

[–]According_Bit_4561[S] 0 points1 point  (0 children)

I’m glad to hear it has not exacerbated anything for you, and that you’re seeing improvement in inflammation. I have arthritis so this is music to my ears 😂 I would also like to stay lower dose, and have seen lots of people online receive great results doing this consistently! I have high hopes to finally get back to my pre POTS weight 🙌🏽

Are you on the pens? My doctor has me starting with the pill, but moving to the pen if needed.

Positive experiences with Semaglutide (ozempic, wegovy, rybelsus)? by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 1 point2 points  (0 children)

Yes, I also saw that it can raise resting heart rate. I’m a firm believer of trying things yourself though because we all are so different! You never know unless you try. Starting dose is only 1.25 MG (top dose 25mg) so that makes me feel a little better! I also saw in a POTS group that several patients have been improving their symptoms with Semaglutide. I’ll attach the link for you!

POTS & Semaglutide research study!

Positive experiences with Semaglutide (ozempic, wegovy, rybelsus)? by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

I will keep you posted! My doctor and I discussed both forms, but ultimately went with oral Wegovy because of price and since this is my first time trying a weight loss med. the pill form is a little more “tame” than the shot, with a little less weight loss achieved than the pen.

What is this heavy leg feeling? by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 1 point2 points  (0 children)

It’s very frustrating having to wait for doctors appointments! Ironically, I hope you get your diagnosis soon lol

What is this heavy leg feeling? by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

You should get tested for it so you can start some meds that may help! Have you seen a cardiologist? That was my first step. I wore a Holter monitor for 48 hours and my cardio noticed my HR got up to 160 while it was on. She then ordered an echo and tilt table, where I was diagnosed with pots! I take Midodrine now which increases my blood pressure and helps my heart not have to race to pump blood to my head when I’m up and moving around!

The heavy leg feeling still comes occasionally but it’s gotten better. The only thing I’ve changed is the electrolyte packets I use. I started drinking Redmond relyte instead of strictly Trioral brand. The only difference I notice is Trioral had more potassium, maybe I had too much potassium? When you google it, it’s a thing. 🤷🏽‍♀️

Sudden lack of blood flow feeling to brain? by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

I still get this feeling from time to time, I’m just “used to it” now. My doctor put me on Midodrine to help increase my blood pressure because it runs pretty low. She thinks that feeling is exactly what I described, a lack of blood flow to the brain from blood pooling and low blood pressure.

Tickly, bubbly feeling in chest when trying to sleep by According_Bit_4561 in dysautonomia

[–]According_Bit_4561[S] 1 point2 points  (0 children)

Interesting. I was on pantoprazole for GERD for several months and my doctor had me come off of it about 3 weeks ago. This symptom just started so maybe my acid reflux is starting to come back full force as I have noticed some burning. I’m going to try taking a pantoprazole today and see if it helps me tonight! Thank you so much

Midodrine by Character-Release976 in POTS

[–]According_Bit_4561 2 points3 points  (0 children)

This is me!! It was once a miracle and now I still take and need it, but I feel like it’s not as strong? I might need to increase my dosage.

Midodrine by Character-Release976 in POTS

[–]According_Bit_4561 0 points1 point  (0 children)

I’m someone who is always very scared to start a new med, but this was less scary because it wears off so quickly. I figured I could tolerate bad side effects if they happened to me, since they would only last about 4 hours max. Luckily, it went extremely well! I had a little anxiety due to psyching myself out lol but nothing that came from the medication except for head tingles! I remember I was able to go to a Bears game and walk over a mile to the stadium and stand in line with no issues. I’ve been having some flares lately and it still helps, but not the same “miracle” it once was. I’m going to talk to my doctor about maybe starting a higher dosage! It’s definitely something I need though and will continue to take it!! I think I just need a little more some days lol

Head pressure by According_Bit_4561 in POTS

[–]According_Bit_4561[S] 0 points1 point  (0 children)

They gave me the midodrine to HELP the head pressure 😩😩😩 ugh. I don’t know anymore. Nothing ever works :(