October 22, 2021
Heidi from Chronically Salty has used her ThermApparel UnderCool Cooling vest to continue to enjoy her life. She has some great tips for going to a concert, or any high adrenaline event safely, enjoying it and surviving. ThermApparel is apart of her tool kit.
Full transcript of How to Prep for a Concert with POTS / Dysautonomia video
Welcome everyone, to Chronically Salty, this is Heidi, I thought I'd make a video about how you can go to concerts with a chronic illness. I have POTS which I talk about on my blog a lot, which stands for Postural Orthostatic Tachycardia Syndrome. It's a form of Dysautonomia and usually what happens with POTS is that when you stand your heart rate increases, and that can lead to blackouts, near fainting spells or fainting completely.
If you think about going to a concert that can be extremely problematic, especially when the concert is a standing only venue. However, I absolutely love concerts, and one of my favorite bands Lord Huron was going to come to Raleigh, NC and I actually got to go to that, but it did take a little bit of some prep work.
First of all I did not stand for four hours straight at a Lord Huron concert, I am pretty sure that would have resulted in a fainting spell, but I do not want that to happen. So you can first check the venue to see if they have any ADA seating. For any venue that has standing only are they actually required by law to have some sort of access for people in wheelchairs, so generally those ADA seating sections also have chairs in case you can't stand that long. So actually, I pretty much feel like I got an upgrade from my ticket because I went to this raised platform area there were seats and actually separated by the crowd by a fence, which was really nice because you could still see through it perfectly, but people weren't up in your business, and I really like having that because I am short I’m 5’ 2” and generally when I went to concerts before I couldn't even see anything. So now I could see everything. I wasn't stuck in the crowd, it was a sold out concert so this was really nice and it's actually cooler when you're up on the ADA platform because you're not being surrounded by bodies. That was a really nice aspect of this entire experience.
I had ADA seating I came in with my walker, my supplies, and my handicap placker so generally if you have a handicap placker, you are eligible for ADA seating, to show them your handicap placker, obviously I did not have to show that because I came in with a walker, and that, that was kind of on purpose because I wanted to make sure I wouldn't have any problems getting ADA seating, because I could have walked into the venue without a walker, but sometimes people think, “Oh, why is this girl dressing up all cute for a concert, she looks fine. Why does she have the ADA seating?”, but I do need ADA seating, so it was nice and you can sit with one friend so I just swapped out my friends and we got to sit together in ADA seating. So that was nice, but the real thing is how do you, other than that, survive a concert with a condition especially, that is sensitive to any adrenaline, or loud noises.
For me, going to concerts, especially ones that involve drums, is really difficult because that will raise my heart rate about 30 points just off the bat. So I really have to be strategic about what I am doing and how I'm preparing for this concert. So what do I do? First of all I will show you my bag. I have one little purse, this is all that I bring with me. Looks kind of big but I'm a small person so it's actually not that large. And within this purse I can carry everything I could possibly need to go to a concert and survive it and have a really good time.
Let's check that out. We're gonna open up my bag. I actually really like this bag. I bought it in India when I was living there, and it's been handy dandy since then. The first thing is, I always bring food with you. Usually, before any adrenaline, or anxiety producing experience. I can't eat that is problematic because I also have low blood sugar. So I need to make sure I have something to eat so that once I am there and I'm ready and I'm starving. I don't pass out from low blood sugar. I like bringing nuts because they have high calories, and they also are salty, so that is a double plus for me so I bring these in, again if you have your doctor's note, they really can't say much about it. Also sometimes I bring in little honey sticks, you can buy them at the farmers market, they're just like a good little bit of sugar in case you need them, but also they can fit really easily in here and it's just like a one and done situation. The next thing that I think is kind of scary in my bag, looking as you can see here is all of my cooling packs. I was wearing a new cooling vest, called the UnderCool. I really like it because it actually goes underneath the clothes.This was nice because no one could tell that I was wearing it, I wore it in the beginning, underneath my outfit and no one could really tell that I was wearing it and then after I gone through security and once you got hot, then I had my friends, shove in the cooling packs when I needed them. That was pretty nice to have, and I was just able to do this and even fit some cooling packs in here as well as in the back when the other ones melted. So that was my cooling pack situation.
Let's look at the cooling packs. I have four of these. These are the four cooling packs that fit into this cooling vest that sits underneath my clothes and these freeze at 70˚F / 21˚C and again these are from UnderCool (ThermApparel UnderCool Cooling Vest) I really actually like this one because it didn't even hurt when I was sitting back against it, like the other ones do and was really comfortable and they also freeze at 70˚F / 21˚C so it did last a pretty good time, for about an hour within the concert, but to be fair at this concert I got extremely hot, so that's actually pretty good for me. So I have four of these in my purse. This is gonna get pretty big but I somehow managed to fit all this stuff in. So yeah, four of these cooling packs.
Then we have my Polar Products, cooling packs that I bring along with me everywhere. These I just like to shove anywhere I can in my body, I can put some here up here, I usually like wearing shorts because I've been shoved them into the front pockets in the back pockets, and sometimes I even shoved them between like my underwear, and the compression tights and they just kind of sit there, so even if you'd have them walk around, they're not going to move anywhere, so really like that. That's nice. So each of these are $15 . I think they are the best thing on the planet. I like these (Polar Products) so much more than these (ThermApparel) for just shoving them places because the technology and this one doesn't really make it squishable, and it's kind of harder to just form to your body, but this one does. This one is kind of half melted so this is what it looks like. I forgot, this has been in here since last night so this is still cold from last night, and it is 3:30 in the afternoon.So that’s kind of nice.
So I have 6 cooling packs that I would bring to a four hour long event, if it is outside and I expect it to be greater than 80 degrees for four hours, I would bring every one of my cooling packs, which is 12 of them, plus the UnderCool now, and that would get me through that event. After that four hours, I would have had to recharge it in some sort of freezer, so I've really haven’t gotten there yet and sometimes I bring a cooler to put them all in if I'm going to be outside. Then I also have these which are other Polar Products. These are thinner, and they go, they're supposed to be like a breast cooler, but you know as you can tell, I don’t have much, so I don’t really know but normally I have that.
I just shoved these here, and actually put this one in here, which was really nice. So these worked pretty well. This one, actually I was wearing last night, and it's still pretty cold in there. It's really nice because my house right now is about 75˚F and this is staying a pretty long time. I really like these. I have a total of about 12 packs, and I have six more in my freezer so if needed I can bring more. So that's the cooling pack situation, that is the most important aspect for me for a concert.
This concert the venue was probably about 65˚F when I first came in, so it's actually really cold but by midway through, once I start not being able to see any more because I'm so brain fogged, I know I'm too hot, and I just start shoving cool packs in and it kind of reinvigorates me for another hour, until the cool packs burn out. But good thing I have more because I just replace them and keep going. So that was really nice to have, and that kept me going throughout the entire process.
The next thing that's really important to bring with you is the handicap placard. I know a lot of people with POTS actually do not have handicap placards, but I would suggest trying to get one. I don't use this all the time when parking. However, when I'm driving alone, I really like having a handicap placard because sometimes it is 105˚F in North Carolina, and I think it's dangerous for me to walk from the other end of the parking lot into a store, walk back out, and then get into a hot car and wait in the hot car in 120˚F in my car until it cools down, so I use it for that in the summer, and then also for very crowded venues like this when there's a very long walk. Then within the handicap placard I have my doctor's note.
The doctor's note is going to help me get in anywhere if security's being annoying. You need to make sure you have the letterhead and your doctor sign it, and everything that you need to have in it. So this says water, electrolytes, and cooling vest and that I might need a wheelchair or assistance. So that is really important because sometimes they are iffy about that, but again they really legally can't do much because of ADA requirements. Especially if it's a public place, so make sure you have that.
Then I have a fan. I like this one because it's smaller than my battery power fans, and it works pretty well, also it’s purple, my favorite color. This is nice and sometimes when it's hot and I have my cooling packs on and maybe my friend's hot so I'll give them this.
The next thing I have in my bag is a mask and I always bring a mask with me everywhere. This mask is an N99. It's almost the end of flu season, but sometimes the scents in some places are really, really strong, and I don't really like it. Last night they actually had incense burning, which didn't really bother me but again I just like to have this around or maybe someone's sitting next to you at the venue. Looks like they had the flu. Yeah, I'm not gonna get the flu from you, and then ruin my whole next week. I really like this one. It's $30, reusable for about a year, it's really nice. I think it's kind of cute. I had another one that was great but I really like the butterflies better. I don't really use it too much but it's good to have.
The next thing is, let's say they have strobe lights happening. I really don't like having that because each strobe light feels like another adrenaline jolt throughout my body and it doesn't make me feel good at all. So I do bring glasses for indoor experiences sometimes, I didn't actually need to use it last night because they're all darker tones, which is really nice but sometimes when they're really bright I just don't like it and I will put these on. These actually are in this gray/brown shade, and it's supposed to be the best shade for people with MS. So I've actually figured that that's probably going to help me too and this actually has been the most helpful shade as well. So I really like that.
The next thing in my bag is earplugs. Earplugs have been the most beneficial thing for me for any loud concert experience I've been to with POTS. With each concert has been a trip, but this one by far was my best one and I actually finally figured out how to use them, but these have a noise reduction rating of 30. I thought that the Eargasm brand would be better, and they actually only have a noise reduction rating of 15 and 30 is the max you can get in a single shot so these are the ones that I use, and they are very helpful, I definitely have them with me at all times, because they are very useful and I use that as well.
Next I have hand sanitizer, of course, because you never know what germs these people got going on. Also, gotta look cute, got my lipstick. I really like Burt's Bees because guess what, they don't have shea butter in half their lipsticks. I am allergic to latex and latex is in shea butter as well, so this is really nice to have. If you look at my pictures, Yeah, I was rockin’ it. Looking all cute in ADA. Then also, of course, my tickets, that's important.
Then I have the more medical side. I guess, for me, I don't know if that was not medical enough for you, but I have a bag full of salt pills. This is where it gets kind of sketchy looking and my bag has kind of a hidden compartment so I kind of put these in there first because it looks like these could be illegal drugs, but they're not, their salt, so I have my salt pills with me. I also have a pill crusher. I have a couple Trioral ORS which each have 2.6 grams of sodium in them. I gotta make sure I bring that to a concert in case it gets too hot.
Most importantly I have my drug box. I actually do not use many drugs at all for POTS, I only use one drug for POTS specifically, which is ivabradine to bring down my heart rate. Here's the problem with that. I have what I think is more like Hyper POTS, adrenaline and anxiety are gonna make my POTS go wild. So if I'm at a concert and I'm excited my body does not know the difference between excitement and running from a bear. I have to make sure that I am heavily medicated at a concert, and when I go to a concert, I the most heavily medicated I've ever been just so that I can go and enjoy myself somewhat and it still doesn't even really make it that much difference but it definitely makes me able to go.
What I do specifically for that is, I use my max dosage of ivabradine for that situation. I also make sure that I hydrate as much as possible before the concert. Then specifically for a concert situation, I actually take Xanax. A lot of people with POTS and Dysautonomia like being on benzos, daily, but I really do not want to have an addiction problem. I don't really think it's necessary in general for me to need to have it daily, but sometimes I really need to have it to blunt that adrenaline effect, as well as it actually helps my recovery time. It used to be that after a concert, I would be recovering for a week, but now I'm kind of feeling tired today and I didn't sleep at all last night because of the adrenaline, but I'm sure that like tomorrow, or even next day it's gonna be fine. So that is why I use it.
But despite that I'm not actually using Xanax to its greatest amount. My body is so sensitive that my max dosage of ivabradine is 5 milligrams a day, which is the amount of one morning pill for most people. So when I'm talking about Xanax, I actually get it compounded at a compounding pharmacy, and they will actually make it to any strength that I want. I told my doctor that I want to do 1/4 dose of the smallest amount. So you guys, if you do take Xanax, you're probably going to laugh but my Xanax, is actually only .125 milligrams, with a pill, with a filler of salt, of course. And so that is what I use, about an hour before going to the concert and I like to use that as well for tests or interviews. It really helps me just kind of tone it down a little bit so I'm not shaking the whole time. Because shaking and having nausea from the adrenaline just makes the concert really annoying. So, now, I really just tried to take it, I hate taking it. But at this point I just realized that no matter how I am feeling that day I just need to do it so that I can enjoy my concert because I did not do that for Iron and Wine, back in the fall, and it was hot in there, and I thought I was dying, so I am not doing that again. Now I just have my method, I drink up. I salt up. I take extra heart meds, and I take a low dose, Xanax, in preparation for the concert. That is very important for me. Those are my drugs that I take, not too many.
That is pretty much it for my bag. As you can tell my bag is not really that big, but I do fit everything in there and that was really what helps me get through concerts. I do bring a walker, of course, I love my walker, it has a compartment underneath that I can put everything in. Security never looks there for some reason, but you can just put food in there and maybe that will help you get some food through security.
I really do like bringing it in because it also expedites the process because people do not see that I am someone who's struggling standing in line, outside of the gate and if I do have a walker and it’s hot, then there's been situations in the summer where there's a long line, waiting for maybe an hour hour in line, that's dangerous for me, so I will just go up with my walker and roll on through, because there's no use and me making a scene then having to call EMS because I had to wait outside. I'm not going to do that. If it’s in the winter then of course not but if it's in the summer, I am doing that and that has been helpful, as well as having the handicap placard. I do have a permanent handicap placard, but a lot of people, you just go to your doctor and talk about why you're using it, then I feel like they should be able to help you out with that because you’re using it for different reasons than just better close to the place. Again, if you're using a handicap placard, and you do not use a wheelchair, do not park in the van accessible parking spaces, because then they could not go to that place at all, so generally I will avoid at all costs parking in one of those spaces, because that is actually reserved for people who are using a wheelchair ramp. But I do like having that so that I can have access into places like this, and access ADA because that is really beneficial for me and helps me have fun doing things I never thought I'd be able to do again because it used to be that talking on the phone was too much adrenaline for me and I would just be laying down for an hour and last night I was jamming out to a concert for three hours and survived, even though I am really tired by that.
Those are my tips and tricks, read the blog post for more information and also to see step by step what I'm packing in my bag. I think it's really beneficial for people who have never been to a concert before or any kind of high adrenaline environment so that you know how to prepare for that and to keep yourself safe. Thanks for joining, and I hope to see you soon.
Full transcript of the unboxing video
Hello everyone, for my blog I often talk about cooling products for people with pain tolerance. I use cooling products because I have POTS, which is a part of Dysautonomia. Some of us can’t really sweat anymore, that’s me, we have to use cooling products in the summer so we don't have heatstroke.
Before I used this one, which is a Polar Product cooling vest, as you see here there are three pockets in the back and one on each side to hold one of their Phase 58 Packs.
I live in North Carolina so it gets very hot here, and I bought two sets of the packs and one cooling vest and that cost me about $350 with the 10% off for people with MS. So I had this, and then I saw this other new product online that’s called UnderCool and so they sent me a free one. Thank you very much, they are thanking me but really I should be thanking them.
"You're the coolest person we know. Thank you.” This one (ThermApparel UnderCool Cooling Vest) is really cool because it’s worn under your clothes. What I don't like about this one (Polar Products) is that when you wear it, you look like some sort of bomb vest school girlscout. It pops out here, it does have pockets which is nice but I don't think it's really aesthetically pleasing.
So I really like having this one (ThermApparel UnderCool Cooling Vest) which is supposed to be invisible, and sometimes even indoors is too hot for me so this one I could wear indoors, hopefully under scrubs. When I volunteer at clinics, and not have to worry about people being like...what’s your problem.
This is wrapped so beautifully as you can see. I got the black one and we'll see what it looks like. This one is extra small. They also have this technology which is PCM (Phase Change Material) that freezes at a certain temperature.
One thing that we did really like about the Polar Products phase 58 packs is that they say it freezes at 58˚F but honestly it doesn't really freeze really well unless you put it in the freezer. This one is supposed to freeze at 58˚F and it does actually stay pretty cool all night if you use it in bed when it's kind of hot.
But this one (ThermApparel UnderCool Cooling Vest), you can see here it's already somewhat cold and it's about 75 degrees outside right now so it's supposed to freeze up at 70˚F so this is a really good sign already.
These are a cool pack that has four sets of cool packs for the back. It's really just nice because it will fit right here in the back. And it's supposed to keep you cool, so we'll see. I'm gonna put this back in, and just try it on and see what it looks like. I am really excited because I think this will make me feel like an undercover agent, ready to save the world with my cooling vest, and hopefully it will be invisible under some of my clothes.
So, and if not, that's okay, I don’t really care but we will see what happens. I will first put it on over my clothes so you can see what it looks like, and then I will change, and we'll see what it looks like underneath.
The only thing I can really sell right now that I don't really like about this product is that there's no cool packs in the front, which this one (Polar Products) has cold packs in the front which is really nice, but maybe I'll just use the Polar Products boob cooling stuff, which is like a little bra insert. As you can see I don’t have much up top so I pretty much just threw them on top and hope for the best.
I might put that on top too (Polar Products) if it’s really hot, but this (ThermApparel UnderCool Cooling Vest is nice because it actually fits pretty well I think. It's like a little holster here, but I already feel the cool on my back, which is really cool through my clothes, and it hasn't even been in the freezer yet. So I want to pause this real quick, change it to underneath and see if you can see it on me.
So now I put this on and I am wearing a sports bra so it's fine. This is nice because it comes out with some compression at the top of my compression pant line, which is nice because some people with POTS wear abdominal binders and I don't have one actually, so, now I have one.
In the back it comes up to here, but the real test is, can you really see it. Alana can you see it? it.
Yeah which is really awesome, because now hopefully I can go places and have people don't notice that I'm different. My plan for the summer is that it gets up to about 112˚F in the summer in July here.
I'm hoping to just combine the two, so I have one on the outside and one on the inside so when I go inside I'd already have the under one (ThermApparel UnderCool Cooling Vest), and then I go outside I can have it like this, which would be nice for like shopping and going in and out of my car. So that's my hope for the summers to combine these two so that's not too hot, but we'll see what happens. I'm hoping to give this a whirl over the week. Thanks for joining.
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