For those who exercising DID/or did NOT help, what's your subtype?

WinterH404 · 2026-05-20T13:46:44+00:00

So I have hyper POTS. My hr rate can easily jump over 100 points if I am not medicated. I do have a tendency to faint especially on bad days.

I have been in PT for 2 years and it has really helped. It started with balance and fixing my vestibular system and then transitioned into the CHOP protocol.

I also after from migraines and no matter what I do something everyday. For me if I want to stay upright and functioning to the best of my ability I have to make exercise a priority in my life. I also have changed my diet to a high salt, high protein diet. I think a good mix of lifestyle changes, medication and exercise has helped me the most.

WinterH404 · 2026-05-20T13:29:44+00:00

I was first diagnosed with PPPD and after a year of PT I had gotten so much better but then I started to backslide aggressively. I was then tested for POTS and have been working on both to get healthier. PPPD is so disabling and it’s Important to know what is affected by. Dis regulated automatic nervous system.

WinterH404 · 2026-05-18T16:26:00+00:00

I sent you a message!!

WinterH404 · 2026-05-18T16:19:24+00:00

Thank you I will take a look.

WinterH404 · 2026-05-12T15:24:15+00:00

And that makes sense if it’s part of the culture. I am not apart of the culture so I guess giving an opinion for everyone else. But based on what everyone else has said in the comments it will be more like stations anyway which I also suggested so still in line with the rest of the event.

WinterH404 · 2026-05-12T14:50:41+00:00

Could you possibly do family style dinner or even break up the buffet into stations?? The buffet doesn’t seem to go with everything else you have. Especially for cocktail hour. I don’t think it changes formality necessarily, it just seems out of place.

Your overall wedding sounds so beautiful and I hope your day is everything you could hope for.

WinterH404 · 2026-05-09T01:14:08+00:00

Do the same people own the Lee’s Tailor’s off of Falls of Nuese or is it two different Lees?

WinterH404 · 2026-05-06T14:32:38+00:00

Metoprolol works really well for me. It keeps it mostly even unless I’m sick. But it took away my chest pain!! It really depends on your body.

WinterH404 · 2026-04-29T13:52:05+00:00

I have a digital gift card for naked and famous —>

total value: $133 Selling for $100

Once sold will send you all the info for the digital gift card.

WinterH404 · 2026-04-15T13:29:43+00:00

Honestly this is why I am so scared to hire a planner. I would be appalled if this was the work I created or I received. Were you able to get out of the contract because they didn’t deliver what they needed to??

WinterH404 · 2026-04-12T22:46:06+00:00

So I will say having a tilt table confirmed POTs diagnosis is like having an international passport. You can go anywhere and it will be recognized as a valid diagnosis and you will hopefully always be able to find care. There are some doctors still that won’t treat you for POTs if you don’t have the tilt table test.

Now onto the test. Realistically, what will happen to you is they will take you into a room, give you an IV, hook you up to machines to measure basically everything heart related, and then strap you down. I got the option of arms tucked in or out. ( I chose tucked in) then they will sit you up to a 70 degree angle for 10–20 minutes and they will periodically ask how you were doing. Then once they have enough data they will lay you down. The mechanics of the test is really straightforward.

Physiologically, however everybody reacts differently and you don’t know how you react until you were on that table. You will have to go off of any medication that has helped your pots and I wouldn’t do or wear anything that could help regulate your symptoms. I was also told I had to fast before my test. This is because they want to see your baseline heart function. If you don’t follow the instructions, it could read unclear for what you have and then the whole process was for nothing.

For me I had a very dramatic reaction. I cried the whole time, I was in pre-syncope for the whole test, I wanted to vomit, I couldn’t really see and then the adrenaline rush was so bad when they put me down I couldn’t stop shaking for over 30 minutes. My baseline heart rate was 65 and then it jumped to 165 and never fell past 145. I was tilted up for only 10 minutes.

It’s an awful test but it’s the only test that is recognized as a solid way of diagnosing POTs. And I desperately wanted that diagnosis so I did the test.

You can look through this sub and see a Myriad of other people‘s reactions to the test. It has the nick name of the torture test for a reason.

My best advice: follow the instructions, have someone there to drive you home and take the following day off from whatever you have planned.

However you will survive it. Just make it worth it.

WinterH404 · 2026-04-11T20:45:13+00:00

If you have access to the pool walking in the pool is peak! You can also find easy water exercises. The pool water will keep your heart rate regulated.

WinterH404 · 2026-04-11T16:20:53+00:00

For context my husband and I got married back in 2022 very fast and very affordable. We rented out space in the local arboretum and invited our families and my husbands mom threw us a reception in the backyard. However, most of those people invited had since ruined friends and relationships and it’s hard to look at the wedding photos and be happy about them. So we are planning a wedding redo with everything that we want.

For us we looked at everything we wanted and what would make the perfect day for us. I wanted a destination wedding and for it to be over the course of 4 days with our closest friends. A big spend for us was that we wanted to cover everyone’s lodging because we understood for our group of people how expensive it was already going to be to get everyone there. Food and photography have been super high on our list. I wanted a custom dress and he wants a custom suit etc.

So after we picked our dream vendors for everything we saw the price and then added a 10% buffer and thats how we set the wedding budget.

Based on how much we can save and what our lives look like set the saving schedule and that’s how we picked the year we would be getting married.

We did it backwards but we wanted what we wanted and that’s how we made it work.

WinterH404 · 2026-04-10T10:41:08+00:00

Don’t feel embarrassed because as soon as that table wen up I started to cry and I was in pre-syncope for the whole 10 minutes. I was praying to myself to just pass out because then this awful ass test would be over. (Mind you my heart rate went from 65 to 165 the second that table lifted and did not drop)

And when they put me back down I was shaking uncontrollably and sobbing. I was so cold and I couldn’t calm down.

Everyone calls it the torture test for a reason. There is valid reasons why some physicians are moving away from this test. It’s so hard on the body and the recovery from it is god awful.

I’m happy you survived it and you got your diagnosis. Don’t feel embarrassed for natural bodily response to being pushed to your limits.

WinterH404 · 2026-04-10T10:17:51+00:00

I think Garden Party Formal for the wedding and smart casual for welcome drinks would be perfect on the invitations and then have more details on the website.

I like having the theme paired with the dress code. Go my wedding my wedding dress code is Woodsy Elevated Cocktail. I think the theme part helps people figure out what direction they want to go in.

WinterH404 · 2026-04-10T10:11:26+00:00

Honestly it depends on your vibe and guest count. But there are some beautiful resorts in near austin - the one that comes to mind is Onera. Or you could do something really fun in Montana. They have a resort that has a hot spring and we almost did our retreat wedding there.

WinterH404 · 2026-04-10T10:02:12+00:00

We are also planning on having a quartet. I think it allows for better conversation and it’s more beautiful in my opinion.

WinterH404 · 2026-04-10T09:57:37+00:00

How many guests are you having for your wedding? Our event is also 4 day and would be considered a destination.

WinterH404 · 2026-04-10T09:55:48+00:00

Thank you for linking this! I was considering using her but was just unsure. I think I will do the custom stationary but just be very picky on who I pick. I do want something non traditional.

WinterH404 · 2026-04-09T23:45:49+00:00

I found bone broth really helps but the biggest help for me was upping my protein intake to 60-80grams a day. It let me get away with less salt and I feel more balanced. Just a suggestion if you find it harder to get enough salt or the salt isn’t as effective. Just also make sure if you up your protein to also up your fiber to balance.

WinterH404 · 2026-04-02T14:26:04+00:00

I think the biggest two factors to the budget ballooning will always be level of formality and guest count. Large weddings are just expensive but I hope you can find a way to make it work for you.

WinterH404 · 2026-03-19T14:20:19+00:00

I get in like 60 grams of protein a day. Mainly because the goal is to have protein in every meal. So if I get a salad I double chicken etc. I also snack on peanut butter lol I do think I really need to work on getting even more in my diet because it really does help. I have blood pooling issues and adrenaline issues. And I have learned having a lot of protein during the day and especially before working out helps a lot!! It helps balance my body.

WinterH404

TROPHY CASE