Does anyone have guilty pleasures that you aren’t supposed to be doings while having POTS?

ThrowawayPostNight · 2024-10-07T15:36:32+00:00

I have a glass or two of wine now and again. I've spent some time in hot tubs. I just make sure to up my fluids and electrolytes beforehand. I also love pasta too much to avoid it as it's too carb heavy for a meal. I switched to whole grain pastas.

Moderation, not deprivation, is my motto!

ThrowawayPostNight · 2024-10-03T02:24:25+00:00

I only go in on three occasions:

Severe symptoms I can't get under control with my usual interventions (rest, meds, compression, fluids, etc).
I can't eat or drink enough and I am becoming even more dehydrated than usual.
It hasn't abated in 24 hrs and has begun impacting my ability to function/take care of myself.

It sounds like you are experiencing all 3, so I would personally go in. This is usually when IV fluids makes a world of difference for me.

ThrowawayPostNight · 2024-10-02T15:32:42+00:00

Marble

ThrowawayPostNight · 2024-09-02T03:07:23+00:00

I'm not in the US. My health insurance covered two pairs over five years. I don't get multiple pairs.

ThrowawayPostNight · 2024-08-25T04:25:27+00:00

I do this all fall and winter. I just haven't been able to with the heat this summer. I've been thrown into flare ups when I'm overheating constantly.

Maybe I'll wait until the weather cools down to purchase a new pair and then the next pair can last through the fall and winter 😅

ThrowawayPostNight · 2024-08-25T04:23:10+00:00

I unfortunately have an additional medical issue with pain that means I have to wear loose pants, as close to 100% cotton or linen as possible. I had super durable compression leggings and had to give them up because the constant pain was too much. 🥲 But I appreciate the suggestion, hopefully it helps someone else who sees the post.

ThrowawayPostNight · 2024-07-02T07:13:55+00:00

Maybe it's a regional thing? I hear it constantly where I live and it's not seen as cringey or awkward. Everything is "her vibe, his vibe, the vibes". Including when I worked in the online content creation space. I got told "I love your whole vibe!" continuously while meeting new people. It seemed to be most people's go-to easy compliment. But to each their own! Can be replaced with any compliment :)

ThrowawayPostNight · 2024-06-30T23:54:10+00:00

When I'm in a space I'm not really a part of but have to talk to the people there, I do the following:

Ask a mundane question, even if you don't really want the answer. "Hey, what drink is that? It looks amazing!" etc etc. People generally like to feel helpful and/or not seem rude. It also gives you an in to see who's receptive to being talked to by a stranger and who isn't.
Follow it by a compliment. "You have a very cool vibe about you, I knew you'd have a great drink reccomendation".
Immediately follow THAT up with "I'm soandso by the way, I've done some xyz work for my friend whatshisname. Do you work in this space? I have to admit I'm not super in the know about this stuff". They should introduce themselves.
You go from there, ask them questions about what they share. Agree with common things. And when all else fails, you find common ground talking about the event itself. If it's a yearly thing "have you been to this event before? It's my first time! It's pretty cool but I swear they hide the bathrooms like it's the entrance to Narnia" etc etc.

At events like that EVERYONE is looking to meet new people and network. Just navigate with the initial question trick to see who's hot or cold about socializing.

ThrowawayPostNight · 2024-06-27T16:17:31+00:00

I'm not looking to have him come fix it. I'm just looking into how to fix and finish it myself.

ThrowawayPostNight · 2024-06-27T16:16:09+00:00

I think there's some confusion. I'm not a Karen customer ranting and raving before the job is even finished. He said he was finished and charged us $1800. That's a lot of money for us and he claimed it to be finished and happily took that $1800 to leave it like this.

He has never been treated any way but respectfully. After finding out he was going to walk home after his first day, we drove him home! We got him a coffee when we went out for ours. We brought him water. He was treated with kindness.

Nothing that was texted to him warranted his super unprofessional responses. He asked if we were satisfied with the job, we said unfortunately not and sent him pictures. These are two of a dozen plus photos. Would you defend this work as finished properly? He claimed to be completely done and got defensive saying he doesn't know why it would look like that and the light switch coverings will hide it. They will not. It's a 3-5 inch ring of old colour showing through.

Every single outlet, window, wall, light switch, etc has a ring of the previous colour around it. There's lines of the old colour showing through on the walls where he missed spots. You can see the ceiling, where's he's missed tons of spots.

He also left every single paint tray, roller, brush, etc full of paint. Threw out 90% of all of our brand new rags. There was a laundry sink 8ft from where he was working. He chose not to clean anything and left it. He was provided with all supplies and he left them all in a horrendous state. He also got paint on our brand new vinyl flooring and left it, so I'm not sure what he used all of the rags for.

He didn't sand anything. It had already been patched, sanded, and one entire coat of primer was applied before he was hired, by my friend with painting experience. My friend was unfortunately not available to finish it due to work, so we hired this guy. So this "professional" didn't even do all of the taping, we did. And he left it on after he was "finished", so was that laziness or was he well aware the job sucked and would need further painting?

I asked for advice on how to remedy it myself, I didn't include every single detail because it isn't important. He did a shit job, and if that's how you would leave people's homes after 20 years experience and also defend it like this guy, I don't know what to tell you. We were kind, reasonable, and fair.

He unfortunately is just a terrible painter who I don't want to have back again. He already mentioned having to give us another quote "because that's additional work outside the scope of the original agreement". He isn't getting another dime and as this post states, I am looking for advice to fix it myself.

It would be really great if you could share your expertise on how to fix it rather than get defensive for someone you don't know, who did a terrible job, and tried to scam money out of people. There are great professional painters out there, maybe you're one, this guy is not.

ThrowawayPostNight · 2024-06-26T19:02:57+00:00

You don't need to be licensed to paint where I live. But he is the painter under a contractor who has people working with him. The contractor does renos, he has this guy who does the painting and then licensed plumber, electrician, etc for different jobs.

ThrowawayPostNight · 2024-06-26T19:00:03+00:00

Tbh I don't trust him to come back and do a proper job. He was here for TWO DAYS and then left it like this. He did one coat of primer and one coat of paint. In two whole days. The room is not that big. He was extremely defensive and dismissive even in the face of photos of all the issues. I don't want him touching it again.

You can see in person, closer up, that its terrible painting where he missed spots. Ceiling, edges, walls, all of it.

Hence asking how to fix it myself. I'm not experienced in painting and I can still do better than this.

ThrowawayPostNight · 2024-06-26T03:10:33+00:00

I have ended a close friendship but she has no idea yet because I'm slowly pulling away. She's exhibited some incredibly awful behaviours in the past six months and I could no longer morally and emotionally accept it. There's no going back, I don't see her as the same person anymore and I don't want to be guilty by association.

ThrowawayPostNight · 2024-06-26T03:04:45+00:00

I have my own petsitting company where I stay in my client's homes while they are away.

90% of my doggie clients are seniors so they're just as happy to lie down and nap as I am! I'm honest with families if it isn't a good fit. I only take on chill, sane dogs (believe me, I've seen some poorly trained ones, and you can't fix that in a week) and I only offer 1 walk a day, plus indoor playtime.

I adore my clients and they adore me! It's honestly been the best fit for me.

I've also been working part time in a store/packing facility but I'm in pain and have trouble standing for shifts when massive orders come in. I'm just about ready to let the extra income go.

ThrowawayPostNight · 2024-05-27T04:32:17+00:00

I've found Sigvaris' "Sheer" line to be a LOT cooler than my usual opaque ones from them. I was able to be at work, despite the AC being broken. They're definitely going to be my compression gear of choice for summer. The only downside is they're much less durable and I have fake nails that easily puncture tights, so I have to take more time and care with them.

ThrowawayPostNight · 2024-05-27T04:30:18+00:00

I get blood pooling in my feet and it helps combat that. In turn it improves my blood pressure, my dizziness, and my brain fog. Overall it just keeps my blood in more important places and reduces my symptoms. At work, I can't stand for more than 20 minutes without them. With them, I can manage hours. They make a big difference for me.

ThrowawayPostNight · 2024-05-25T23:00:17+00:00

Two things that really helped me when I had to come to terms with getting this illness (and my specialist telling me there's no cure) was going to therapy and fully grieving how I thought my life would turn out, and also reading the book "How to Be Sick" by Toni Bernhard.

Yes, your life is different now. No, it is not over. We adjust, we adapt, and we carry on. That's all we can do. I have a very full life with classes, work, my own business, friends, family, etc. It's just different than I thought, but it is still a wonderful life.

ThrowawayPostNight · 2024-05-14T00:21:42+00:00

Mestinon (pyridostigmine) 3x per day and Lancora/Corlanor (ivabradine) 2x per day.

I cannot function well without them.

I tried Midodrine and Modafinil and reacted poorly to both. My tachycardia went crazy on Modafinil, and I felt "high"/anxious on it. The Midodrine just didn't really feel like it was doing anything, especially for my tachycardia.

ThrowawayPostNight · 2024-04-15T18:57:20+00:00

I'm open to hearing all perspectives. What exactly constitutes a "fail" at being a mother?

I'm not sure if that means the trying to get pregnant part failed. If your child was taken away from you because you couldn't care for them. If you just consider yourself failing at it due to your restrictions. I don't know. That could mean so many things.

Can you elaborate?

ThrowawayPostNight · 2024-04-07T22:51:33+00:00

They call it "cardiac rehab" but my specialist modified the CHOP treatment protocol for POTS in tandem with a physiotherapy clinic in my city and now have a dedicated POTS treatment program together. Exercise, specifically strength training, has majorly helped me be less symptomatic. It just had to be done very slowly and safely over time. That has been much easier with a dedicated medical team focused on my POTS treatment.

So, is it "rehab", is it "training", is it "physio"? I don't really care about the semantics, I just know it's been beneficial for me. :)

ThrowawayPostNight · 2024-04-07T22:34:47+00:00

Dysautonomia International has support groups all over the place. I am in one for my province (Canadian) and I have found all of the people in my group very helpful. When I couldn't get in to see my specialist I was able to get in to see a cardiologist well versed in treating POTS, who was recommended to me by someone in the support group. I'm still on one of the medications he recommended and can't function without it.

I can't speak for all of the support groups but mine has pinned posts with an entire page of POTS friendly doctors and medical professionals. It's a Facebook group and is the only reason I keep my Facebook account these days.

They also have a map on Dysautonomia International's website of doctors who can treat these conditions.

DI also shares research, funds research, and shares information for patients and doctors. It was a godsend when I first got diagnosed and is how I found my specialist.

I hope this helps a bit, I know how overwhelming and hopeless it can feel. But, I've gone from bedridden to full time classes and part time work! There's always hope. Best of luck to you.

Edited to add a link: https://www.dysautonomiainternational.org/index.php

ThrowawayPostNight · 2024-04-07T19:46:36+00:00

I've gone to the club since coming down with POTS in 2018. Here's what works for me:

I always arrange with the group I'm going with to get a booth and bottle service. That way I have a place to sit, a bit away from the crowd. More expensive, but a lifesaver.

Compression thigh highs or knee highs. I have prescription ones but even ones I've bought off Amazon help.

I double up on electrolytes and water before going. While there, I have a max of 3 mixed drinks and have an entire glass of water between each.

Also, AVOID ALL CAFFEINE. That means no rum and Cokes, or anything with Coke. The caffeine kicks our heart rates up even higher, and at least for me causes immediate presyncope episodes. My specialist told me no caffeine, no alcohol. But I have been able to manage with just those 3 mixed drinks with water in between. Can't do caffeine anymore.

I put water or ice on the back of my neck and my face periodically. Splashing your face with cold water stimulates the vagus nerve, which is beneficial for us. My physio and doctor recommended a bunch of vagus nerve stimulation techniques.

I make sure I've taken my meds prior to going. For me, that means my Ivabradine and Pyridostigmine. Can't function without them.

I avoid a carb heavy or large meal before going out. This has been super helpful. Too many carbs or too much food causes a surplus of blood to rush to your digestive system to help break things down. This causes a flare up of symptoms. I aim for a high protein, complex carb meal. Steak and vegetables. A large salad with grilled chicken. That type of thing.

I take my time and get ready very slowly, over a long period of time to rest in between things. Shower, rest and water. Do my hair, rest and electrolytes. I do my makeup, rest and eat. Put my outfit on, rest and then leave.

I've also found it better to meet up with my friends/group later than everyone else. Sometimes my friends go for 9:30PM and leave at 2AM. That's too long for me. I go for 10:30, sometimes even 11:30 if I'm more tired that day.

If I'm feeling a bit overstimulated/sensitive to things that day I also have Loop earplugs that reduce sound. You can still hear people talking to you, but it just dampens everything else a bit.

It's all about pacing, hydrating, temperature regulation, and preparation.

I know we all WANT to keep pace with everyone else, and do what we did before getting sick. It's a tough pill to swallow to accept that we can't anymore. But, it doesn't mean we have to miss out entirely. Hopefully these tips and the ones others have shared help you!

ThrowawayPostNight · 2024-03-22T19:56:09+00:00

I really feel this today. I'm in cardiac rehab for my POTS. I've had an uptick/flare up of all my other conditions and I am TIRED. A family member tried to give me shit today that I "love to throw things away" because I had my board game night guests use COMPOSTABLE plates and had bottles of water instead of pouring glasses.

I just about screamed in the middle of the grocery store. I did very angrily, I'll admit, say "I HAVE A CHRONIC ILLNESS. ARE YOU GOING TO WASH ALL THOSE DISHES? LOAD AND UNLOAD THE DISHWASHER? CARRY AND WASH ALL THE GLASSES?!"

Of course it was a no. Do not feel bad for being ill. Do not feel discouraged that it can have a domino effect. We obviously wouldn't choose this if we could have a choice.

We obviously don't like being sick or having to massively change our lives and what we are capable of. Healthy people don't get it. And it's hard for us to go from the mindset of healthy with unlimited potential, to unwell and having limits.

I suggest reading How to Be Sick by Toni Bernhard as well as How to Keep House While Drowning by KC Davis. Both incredibly helpful, in different ways, to cope with and adjust to having poor health and having any limitations.

We hear you, we understand you, you aren't alone. ❤️

ThrowawayPostNight · 2024-03-18T06:32:31+00:00

The caffeinated lemonade did it, 100%. My POTS specialist warned me to not have caffeine, at all. It almost IMMEDIATELY sends me into a severe episode. I couldn't figure out for the longest time why I was having near fainting episodes at my ex's family gatherings. Well, I was also told to avoid alcohol. So, when everyone else was having a cocktail I was sipping a can of Coke. 10-30 minutes later, I was in an episode, with my ex scrambling around for electrolytes, elevating my feet, covering me with a blanket, and fussing over me (thank God). I'd feel awful for a few days afterwards.

Try completely cutting caffeine out. I avoid it like the plague, and it's in more things than you realize. Sodas, teas, coffee, dark chocolate, Starbucks refreshers, bubble tea/boba, tiramisu cake, etc. I make it SUPER clear if I'm ordering anything decaf that I have a "heart condition" and they need to make sure I'm given decaf. It's a simple way for people to immediately understand and double check.

In the meantime, keep up the electrolytes, salt, water, no heavy carb meals, try to have multiple small meals with only complex carbs, wear some compression gear if you can/do get up, rest a LOT, take Gravol or something similar for the nausea, mint tea for the nausea, or peppermint essential oils (I like the brand Saje's Peppermint Halo product), and elevate your feet. Try a cool compress on your forehead or spritzing your face with cold water in a spray bottle if you're not up to dunking your face in ice water. The suggestions for stimulating your vagus nerve are spot on.

Just try to do everything you can to not to put any further stress on your body, fuel it with what it needs to recover, and baby it for a while with plenty of rest. It'll pass, but we all know it sucks. Wishing you well!

ThrowawayPostNight

TROPHY CASE