Episode 9 - Tips, Trials, and Travel with CVS

Welcome to Episode 9 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).

Join our hosts on this episode as they explore and discuss experiences they learned about traveling with CVS. See how considering triggers, sleep disruption, staying hydrated, nutrition, and more can impact the way you travel with CVS. Learn from the experience and insight from the perspective of a parent and patient with CVS.

For Resources Discussed in this Episode Please See Below: https://www.cvsaonline.org/  

Link to the Treatment Guidelines: https://www.cvsaonline.org/for-health-providers/treatment-guidelines/ 

Support the show here and more: https://www.cvsaonline.org/get-involved/donate-to-cvsa/

Transcript

SPEAKER_00 0:33

The appearance podcast does not constitute important by the secret parts and association.

SPEAKER_02 0:36

Furthermore, neither the critic bombing syndrome association, it's board of directors, employees, volunteers, hosts, or anyone associated with this podcast takes responsibilities for any actions or inactions on your part based on the information provided.

SPEAKER_00 0:43

We do not endorse or recommend any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned.

SPEAKER_03 0:47

Hi, and welcome to episodes of podcast by the Cyclic Bombing Syndrome Association. I'm Belinda Killian, CVSA president and caregiver to someone with CVS.

SPEAKER_00 0:57

And I'm Jason Hersan, a patient with CVS, and then your on and off again host.

SPEAKER_03 1:02

Each episode, we will bring you another CVS perspective from patients, caregivers, clinicians, researchers, and more, because every voice can have an impact. Our goal is to offer a trusted source for these CVS perspectives to be heard to foster crucial conversations, increase awareness, and ultimately change the way cyclic vomiting syndrome is seen and understood. I'm excited to talk about a hot topic that's been coming up a lot lately at CVSA on our online community social pages, traveling with CBS. I think this is a great topic for you and I to talk about because it took us several years and several attempts to not only identify the different struggles that we would have with travel with traveling, but ways that we could be successful traveling with CBS. So a couple of things I thought we could really uh work on highlighting, or I should say uh we should highlight before we get started, is that it took both of us or really um our whole family learning to adapt to what we were capable of doing. Um and first I'll say uh for me, um mainly me, is that I may rest after the vacation person, right? I want to go all out, uh, out before sun's up and back well after the sun is down. Um, I've always said that I'll rest when I'm dead. Um that's not the healthiest way to live, but it works for me. Um, does it work for you or really any chronic illness uh as I'm beginning to learn with migraine? Um so one of you know, one I we need to keep that in mind. Um, as you know, we're already kind of at odds with what CVS would allow us to do. Um, traveling was not always an issue, but like many things, um working and managing CVS, right? We don't want to um mess with what works. So when we find something that works, we tend to stick with it. Um let's let's kind of go back a little bit to um when things were really, really bad with your CVS. I know we're not fond of talking about it um or thinking about it, but uh I felt like we we really need needed to uh at that point push for living life, right? Once you were able to start coming back from being uh as sick as you were, I pushed at the edge and back, right? So people learn from me, learn from me. It's it's a slow process. So, you know, we we did Yosemite, we did Disney. Um and this is where we had to learn to adapt to what you were capable of, right? Because we would try, because we'll we'll also say that you have motion sickness. Yes, that's been something that you struggled with even as a very young child. So uh it also happens to play into your triggers for CVS.

SPEAKER_00 4:24

It does.

SPEAKER_03 4:25

So traveling it can be complicated.

SPEAKER_00 4:29

That's an understatement, but yeah, pretty much. Good way to sum it up.

SPEAKER_03 4:33

Yes.

SPEAKER_00 4:34

So there's a lot involved for sure.

SPEAKER_03 4:36

There was. So let's let's talk about some of the the the highlights of that, right? Um where do you think we should start? Do you want to start with Yosemite or or Disney? Because we tried to do just we tried to venture out on day trips, right? So Yosemite was kind of the first one. Yosemite was the first. Because it was, you know, uh things were bad. As they started to improve, it it made us go, uh, you know, we need to stop putting off to tomorrow what we could do today. So that made me go, I've never been to Yosemite. Let's go.

SPEAKER_00 5:16

I mean, we talked about it for for years.

SPEAKER_03 5:18

For years, yeah. So it was and we just kept putting it off and putting it off. So for some reason, my brain, well, it's because things were as bad as they had been.

unknown 5:28

Yeah.

SPEAKER_03 5:28

I went, we need to stop delaying and just start living our life. So Yosemite. We went to Yosemite and Yosemite was tough because you were still physically impacted by what you had been through on some of your more aggressive coalescent episodes. Um, and we really hadn't funded medication at that point. We were still in the trial and error process. Um kind of figure it out. Right. But we tried to manage with what we had and what we knew were issues for you. So, first of all, uh traveling. Traveling is a big one. Um, so you know, we would use typical motion sickness aids issues, you know, salty foods, making sure you were hydrated.

SPEAKER_00 6:20

Um kind of sticking to the uh anti-metics as well. Pre-treating. Pre-treating, yeah, the salty foods, the hydration's huge.

SPEAKER_03 6:30

But that didn't help you with things like um so the heat, because yes, somebody's warm where it was at the time that we went.

SPEAKER_00 6:38

Especially the time of year we went, yeah.

SPEAKER_03 6:41

Um, so he heat, because some people with CVS struggle with either the hot or the cold, right? So for you it's heat.

SPEAKER_00 6:50

Very heat activated for sure. Yes. I would almost go as far to say it's a trigger as well. It's yeah, very intense heat.

SPEAKER_03 6:57

Yeah, because it's like your body just can't even function once it gets to a certain level of warmth. Um so we try to address all of those, and you know, uh Yosomity is not conducive to any of those. Right. Um, and then you're hiking, which plus the physical exertion. Um, so let's just say that was one of our learning experiences. So we came back and we kind of went over what worked, what didn't, right?

SPEAKER_01 7:34

Yeah.

SPEAKER_03 7:34

Um I have a picture of you in Yosemite and I still kicked myself for making you do that, right? Because you you just look miserable. You were happy we went, but you were miserable. It was rough. It was rough.

SPEAKER_00 7:48

I do remember partly along the uh trail going, you know, at this point you can't really go back from here. You kind of have to go all the way through. I remember part of our conversation after that going, yeah, I was probably too much too quick.

SPEAKER_03 8:01

Yeah. Yeah, but we also made sure we tried to accommodate for things like that. Let's hydrate, let's sit, let's wait, let's, you know. So it just um I had to learn that I couldn't um vacation the way that I tend to vacation. And there was nothing wrong with that. It's a learning experience for me, but we all had to adapt, which bothered you. Um I think that kind of moves us into Disney. Let's talk Disney.

SPEAKER_01 8:36

Okay.

SPEAKER_03 8:36

So or do we talk about prep? What what did we do for some of our prep uh initially? Can you recall? I know I went because you know it's like the way I vacation, I went crazy. I would go, all right, where are we going? I would research hospitals, I would research everything. Not that you knew a lot of that.

SPEAKER_00 8:58

But the same way, because I don't think it is for my end, it was much like that. If anything, it was more kind of self-focused. Um, trying to make sure that I was in the best um condition I could be in. So it really started with the like the the supplements and vitamins, making sure that you know my body's in the best condition it could be in, uh, along with hydration and rest. Those are probably the two best things you can focus on. Um keeping very regimented with them was probably the biggest bit. Um and I know it's not quite what we did for um I mean just traveling in general, but like even for like school at the time, where we'd kind of like during those longer holidays, we'd start the 15-minute increments for how late you were staying up. I know we're traveling, you can't always go to bed the same time every day. So elongating the the time you would go to bed or um even wake up kind of starting with those 15-minute increments. So um, you know, like the typical school night nine's pretty much when I'd be pretty adamant about going to bed. So when you're preparing to travel, you'd start a couple weeks out or a week or so out, elongating the time before you go to bed by like 15 minutes a day, just so you can start kind of building up that um the habit so you're not just surprising your body by deciding to stay up for a couple more hours. Um, just so it you had a a better chance of kind of making it through should any um anything occur.

SPEAKER_03 10:35

Right. So we were trying to lay the best basis if we're changing time zones, if we're but yes, hydration, we would always up the hydration just because we know traveling dehydrates us.

SPEAKER_01 10:47

Yes.

SPEAKER_03 10:47

Um, so that was one of our our big things using um oral hydration supplements, drip drop, IV hydration, you know, tools like that. Um and that's something we try and focus on even while we're traveling, um, is hydration and sleep. Um, so we did try a couple times. Um, Disney, we left in the middle of the night trying to get you to sleep in the car so we didn't disrupt your sleep pattern. So instead we disrupted everybody else's.

SPEAKER_00 11:18

Um also there to try to help combat the motion sickness as well.

SPEAKER_03 11:23

Because you could sleep for it through it.

SPEAKER_00 11:26

You could skip that bit of the struggle.

SPEAKER_03 11:30

And it backfired on us anyway, because you couldn't sleep in the car, much like the airplanes, but it can work for some people that can sleep in those, right? So traveling overnight.

SPEAKER_00 11:41

It's a trial and error.

SPEAKER_03 11:42

Yeah, part of it. Um, so that's you know, those are a couple of my like top tips is try and adjust those, right? Or if you can sleep on a plane or in a car, that was kind of our our first place we started. Um, hydration, we knew it was always bigger. Uh the supplements you talk about, the CVS supplements, uh, making sure you don't always take them, but we know that your levels can drop, especially during an episode. So just trying to keep your coQ10, magnesium, B vitamins higher. Um, was kind of just one of our preemptives helping us to feel better about you know, disrupting your whole equilibrium and processes and sleep patterns. Um, I've seen a lot of people talk about um not telling kids that they're going on vacation or something. So they don't they're they don't have that anticipatory um excitement. Anxiety, yeah. Um, you know, so I've seen people use use that. Um I tried to just be a little more, I mean, I overprepared, obviously, if I'm researching hospitals.

SPEAKER_00 12:58

Um, it can also depend on like the intensity you're used to too, and just kind of like that mental safeguard. Well, it's well, I mean I might have not known at the time. I I I appreciate it in hearing it now, of course. I've that's something I was thinking about at the time.

SPEAKER_03 13:12

Well, and that's that was the thing, right? Is I think a big part of um even managing your episodes. Um, because no matter how long we would go in between episodes, we always anticipated the next one, right? We always had that that dread, that feeling that that it was looming and it was, we were always just waiting for the next one. And I think when we were able to do the mind shift of going, let's not sit here and worry about it, let's just know that whatever happens, we're just gonna take care of it to try and alleviate that extra stress, anxiety, anticipation. Um, and I think that was a big help uh when it came down to it, right? So although I was telling you, don't think about it, we'll handle it, right? Just trying to take that stress and anxiety off of you. It doesn't mean I wasn't. And part of that is the, you know, talking, uh, you know, preparing for things like if we need to go to an emergency room, what room, what one would we go to? What, you know, um, that was me mentally preparing. Um, plus, when it comes down to like insurance, you need to know what one your insurance is gonna take. Um, you know, so it was stuff like that. I would try and prepare just it in case. So we were just always ready. We we didn't have any surprises. Um from there it was kind of preparing, just I mean, uh as it is, let's let's kind of talk about uh present day. Everybody has something for you, right? Your sister carries your abortives, I carry your abortives, you carry your abortives, your dad carries them, they're in the cars, they're ever, you know, we try and make sure they're just everywhere so we're never without them. So plus, um, you know, we joke about the the vehicle that I bought last has buckets and the floorboards. We we joked it was the perfect car for us because it had built-in vomit buckets.

SPEAKER_00 15:26

Um but we do have storage to put those in.

SPEAKER_03 15:30

That's right, the full ones. Yeah. But you know, having just being prepared sometimes with the basics, because there's times that I just don't leave the house without Ziploc bags, right? Because that's what we would put vomit in. Um, you know, we we do not have um MS's bags uh in the cars, um, you know, under the seats. We had buckets in the cars. Um the backups to the backups. The backups to the backups. The I at one point I had um Mrs. bags that turned liquid to gel that I got off Amazon that were really helpful, especially if we were on the move, because then you wouldn't have to worry about spillage. Um, you know, so there were basic stuff like that that we would think through um and still do.

unknown 16:22

Right.

SPEAKER_03 16:23

Make sure we have all of our medications, we're hydrating, we're getting our sleep from there. It's more about managing temperature. So um we had those cooling towels.

SPEAKER_00 16:36

Yep. Um that we actually used those on that trip to Disneyland.

SPEAKER_03 16:40

To Disney, yep.

SPEAKER_00 16:41

Um lines in the sun for sure.

SPEAKER_03 16:47

Which was of course just draining. Um anything, portable fans. I think we've tried those. Um, you know, when we travel by car, you know, well travel at all, extra clothing in case something does happen, right? Um plus some of the cleaning stuff that we would need. So we've we've find pack and an extra shirt.

SPEAKER_00 17:12

Um for some of the motion sickness thing. We've tried those, uh, the pressure point bands. Those ones have have helped occasionally. Wouldn't say always, but every once in a while they're kind of nice. Um, I usually leave those in the travel bag anytime you know you're flying, especially if you're going to someone that has more motion-based activities, or just a long card ride. Sometimes it's nice to have a little something else that isn't always just medication.

SPEAKER_03 17:38

But and that's a great thing to talk about. So we have we have a couple different varieties of the motion sickness bands. Some of our are the relief bands, which those are electronic. Um, we have some that are pressure point that you can get at a drugstore. Um, so we've tried a bunch of options like that. And um, so let's turn it back to Disney. So the first time we went to Disney um was pretty rough on you. Uh we went in for two, maybe three hours, and then you were just down the rest of the day. You were exhausted. It was, I mean, it was just not not good.

SPEAKER_00 18:19

It wasn't very feasible at that time, though.

SPEAKER_03 18:21

And and I mean, and that was a conglomeration of everything, right? It's the car rides, it's the motion, it's the you know at once, the heat, the exertion. It was the perfect storm for things not working out. And you uh again, because you feel bad about what CVS has done to you, right? That you would just keep apologizing profusely.

SPEAKER_00 18:50

Um it's kind of hard to take everybody out and then be the reason that it holds everybody from going out and having fun. That's never sat well.

SPEAKER_03 19:02

Which is how you feel, right? Um, and again, this is the changing the mindset. Because for me, you know, this is why I led with the listen, when I vacation, I vacation hard, like really hard. So that made it worse, right? Um so CVS uh gave me an opportunity to take a step back and learn that we don't have to vacation that hard. Um, not to say I still don't try, because I do, I push the limit sometime, but it's all changed according to what we can and can't handle, right? And what you can and can't handle and how you're feeling. And I need to be aware of that. So it's a it's a group experience. Is that a good way to put it?

SPEAKER_00 19:57

Um group learning experience, yeah.

SPEAKER_03 20:00

Yes. Um it lets you know how well you're able to adapt. Um and CVS has really taught us how to adapt.

SPEAKER_00 20:10

It is kind of forced us to in some ways.

SPEAKER_03 20:15

So it's uh yeah. So it it was uh it was unfortunate. Um you know, and but we needed you needed to take the time when you needed to take the time, right? Yeah um, so we started calling calling it things like forced relaxation time for mom. For everybody. For everybody. But you know, we we do what we can. Um, and I think that's that's something that I needed to learn. Um but we've we've worked at it and we've fine-tuned it quite a bit.

SPEAKER_01 20:52

Quite a bit.

SPEAKER_03 20:53

So that that trip to Disney, we went back, I think it was three or four late years after that. Where where we had been fine-tuning our traveling, right? Sometimes even just around town, because that 30 minutes in the car can be very challenging.

SPEAKER_00 21:10

Oh yeah. Um to the smaller trips than before then during that time as well.

SPEAKER_03 21:17

So the so all of so that time, that three years, we'd been fine-tuning all of our little regimen. Yes. Um, for for being able to travel, right? What worked, what didn't, what salty snacks were the best, what, you know, um our oil oral hydration. Um even our even um, you know, if you're do if you're feeling minty or salty or you know, we we kind of balance all of those.

SPEAKER_00 21:50

Um we had them for both uh situations too, because you know, I had headaches along with it. So the peppermint and the mint could help with that. Um

SPEAKER_03 22:00

Which is all stuff we learned along the way, right? So every little helpful thing we just added to our arsenal, right? The wrist pins, the essential oils, the motion sickness, um, hoop dramamine things, and when to use the um drowsy version or the non-drowsy version.

SPEAKER_01 22:18

Yeah.

SPEAKER_03 22:19

Um, but we fine-tuned it to the point where three years later, after going this works, this doesn't, um we went to another theme park. And because you had learned to handle that motion sickness balance so well, um, you were the only person in the family that didn't get sick on some of some of the rides we went on. So it was, you know, we obviously didn't practice enough of what you were learning. Um, but it changed things. It changed a a lot.

SPEAKER_00 22:53

It does change the dynamic for sure.

SPEAKER_03 22:55

So now you don't we still we still live by that regimen that we you know worked on, created 10 years ago, right? This is 10 years ago that we're talking about stuff like that, right? Um and we still to this day stick to that because it worked for us. Right. Um so I wanted first of all, I I I think it's really important for us to talk about it because I you know people really struggle with CBS with traveling, that they have that um anticipation, right? What's what if it goes wrong? What if something happens? What can I do?

SPEAKER_00 23:35

Um other patients I've talked to also kind of have the apprehension to even try because of how much it impacts on their day-to-day life.

SPEAKER_03 23:45

People are worried about it.

SPEAKER_00 23:46

Don't want to even try because of how much they're already struggling. But sometimes just taking that step to try can help at least start feeling better, even if it's not physically, but maybe even mentally a little bit. It's changing mindset. Staying at the same four walls all the time.

SPEAKER_03 24:04

It can be away at you. Which is why you had a mom that went, We need to stop letting CBS control your life. We need to get you out and doing things, right? I don't want you staring at the same four walls. We need to, and you know, we've we've kind of talked about that because we talked about going to see Pitch Perfect even while you were getting sick.

SPEAKER_00 24:30

Um interesting choice, the first movie to go see, but yeah.

SPEAKER_03 24:33

It was. We didn't didn't know about it and then, but it worked out in our favor. And see, that's what I'm saying. It was a happy accident. So go and try and have your happy accident, right? Try it. Right? The the anticipation factors into that that CVS cycle, right? Because you're always anticipating the next issue, the next problem, the next episode when we can try and change the mindset about how we handle them.

SPEAKER_00 25:05

It can take some time to to find that balance between feeling comfortable about it and worrying about it.

SPEAKER_03 25:11

Yeah. But it's that trial and error process that we've all gone through with trying to find the right medications, right? We find what works for us. So let's talk about some of the things that work for us. You've mentioned several of them because we've done the pressure point bands or anti-nause. Um not anti-nause, the motion sickness. But yes, your anti-nause medications as well. You have those. Do you want to talk about kind of your your toolkit? Um, I know you said we've already kind of talked about you starting a few days before, kind of upping the vitamins and hydration, the CVS supplements and hydration. What kind of what do you have in what I would call your CVS toolkit when you travel?

SPEAKER_00 26:04

So for items, I kind of separate it between uh whether or not you're traveling in a car or by plane. Good point. Different kinds of planes of attack, I'd say, for each one of those, especially if they're a longer car ride or longer plane ride.

SPEAKER_03 26:23

So for part part of it starts at that point, right? Because then, you know, that was part of our juggling. Either we're gonna fly overnight and try and knock you out, or drive overnight and try and knock you out. That didn't work for us, but that is something you could try. So that is that is one point. Um give it by.

SPEAKER_00 26:42

Planning it from there. Yeah, that's um it's unfortunately doesn't work for me. But for those who it can work for, that could almost be what to plan around. Because if you can sleep on a car and wherever you're you know planning travel to can be reached by both plane or car, that it would probably be preferable just because you could bypass the whole ordeal doing that in general. Yes. Uh or vice versa, if it's the you know, planes works better.

SPEAKER_03 27:10

Okay, so let's start with let's start with car. If you were going, if you were traveling by car, what would you what would you take?

SPEAKER_00 27:21

So for the uh the basics, obviously, you want to make sure you have all of your um medications, any of your anti-medics, um, your abortives, anything you may need for just your episodes in general. It's like the first thing that goes in the bag. It's almost always packed, have several different um kits, I would say. Um so if you have like the main pack bag where you have all your clothes, always bring another shirt or two extra. Um still to this day, we'll have the one or two shirts extra. Um, but so yeah, it starts with kind of what the um the traveling you're going for. If it is like an amusement park, want to make sure you're prepared for those um more motion uh sick potentially ventures. So I'd have the pressure point bands, I'd take the relief band. Uh, if you're not sure what that is, I'd probably recommend you guys check it out. It can work for some people, some also find it a little uncomfortable. Um, but in those, uh if you're struggling more with headaches as well, uh, because Sevus seems to be quite heavily tied to migraine, um, having some peppermint options. I think we have some chapstick we had tried uh initially that was more uh peppermint based. Now they we have some rollers that's kind of like a peppermint extract.

SPEAKER_03 28:39

Essential oils. Yeah, so we've done the gums mint chapstick, anything that you can kind of get in there because it has anti-nausea qualities, right? You can use the use that um in migraine or not, right? It is it's the same with ginger. You can bring ginger, some of those gingins, um, ginger candy. Some people do drink ginger tea, so whatever works for you. Um you know, some people use the alcohol swabs, which you can't do. But anything like that that you know that can help with the the nausea, that would be kind of I would lump those all together. So, you know, the gums and mints, necessarily you may not want those in your mouths, but smelling them can be helpful.

SPEAKER_00 29:25

Um much more for the nausea, I'd say like the the salty foods, the snacks. Um, mine's always takes a little bit more to power through. So like the salt and vinegar is always my go-to because they just have a little bit more and they can kind of help stave off the nausea, especially for the longer car rides. And if you're you know looking down at your phone a lot, it's gonna hit a little quicker. So just making sure to not look down or stare at your phone as much.

SPEAKER_03 29:49

Well, typical motion sickness stuff, right? You want the cooler air, the cooler air helps with the colour. Making sure there's running you're you're straight ahead looking straight. So don't look at your phone if you have issues with motion sickness. That's a huge no-no. Um, that that also helped you with you driving. Once you were able to drive, that really helped with the motion sickness. So that's that's kind of a little hint in there, too.

SPEAKER_00 30:17

That's something when you can kind of expand upon because it forces you to really kind of look forward, um, almost completely negating any sort of issues with that as well. So that's that's a good one to consider. I wasn't even thinking about that. Uh, but hydration, gotta keep drinking, no matter how many times you gotta stop to go keep drinking.

SPEAKER_03 30:37

Well, and what we should talk about here is because one of the big things that we struggle with um more flying than driving is the hydration, right? Because you get somewhere, the water tastes funny, it's you know, uh, or yet it's eight dollars in the hotel and you're too cheap to want to pay eight dollars for hotel water. Um, you know, so we also got uh filtered water bottles um that were a little pricey, but we travel with them uh a lot. Um, so that helped us. It was just a way for us to think through what some of our struggles were and the hydration, I think, was really close to the top, you know, sleep and hydration were like our top two.

SPEAKER_00 31:19

They are the top.

SPEAKER_03 31:21

Yeah. Well, I think I do. I mean, for you it might be the motion sickness, but no, it's it's definitely sleep and hydration. Yeah.

SPEAKER_00 31:31

The thing that you're can most easily combat is definitely the the motion sickness. Um, because the sleep you can't really get back when you lose it. So making sure you you have as much as you can is is probably the the biggest contributing factor.

SPEAKER_01 31:46

Right.

SPEAKER_00 31:47

Um, especially because when your body really needs sleep, best thing to give it a sleep. But hydration kind of helps, you know, feel the feel all of the uh internal organs so that they can do what they need to do, especially if you're planning to be in the sun for a while. Um the more fluid you you have in you, the better.

SPEAKER_03 32:09

So that would take us to also the electrolyte drinks. You have, let's talk about the water for a second, because you have a water that is easier for you to drink than any other bottled water. So especially when we're struggling with hydration, um, you will buy a pH balance water because you call it what?

SPEAKER_00 32:31

Yeah, I call it cotton candy water because it it just it feels like it you're absorbing it better right away. It's it's there's some waters, it just feels like it's heavy, it's got a different half to it. But yeah, the I think essentia, uh, the smart waters are usually the two that I kind of gravitate to, especially when traveling, uh just because of how light they feel and how I feel when drinking them. Yeah, easy for you to drink. So much better.

SPEAKER_03 33:03

For you, it does it does make a difference. So that's something I would I would say, you know, if you have one that works for you, definitely stick with that. Um, then altering some of the electrolyte drinks, gatorade, pyraid, um, those pH waters can also have electrolytes. Um, so those can be good to try, especially when you're out and about, or then you could move to some of the ivory ivy hydration, um, cure, drip, drop, you know, oral hydrations that'll help you with your hydration a little bit more. Um what else do you have?

SPEAKER_00 33:40

So outside pretty much everything we talked about, the medications, the small snacks, um, you want to make sure you have those emissis bags or ziploc bags if you're trying to back a little lighter or smaller. Those fit a little bit better in some of the smaller bags when traveling.

SPEAKER_01 33:57

The ziplocks.

SPEAKER_00 33:58

Those cooling towels can be huge if you're gonna be in the sun for long periods of time. You can even use them as a hood. There you have a big enough towel. The small fans can help a lot. Um, sunglasses for those with migraines, I would highly recommend. Um, a sneaky one that I kind of like that I don't feel like many people would try it if you're flying, is uh noise canceling headphones.

SPEAKER_03 34:24

Specific ones, not the earbuds. Headphones, not the earbuds. Headphones.

SPEAKER_00 34:30

But yeah, headphones. Because they could fully seal um your ears and kind of stave off the pressure of the um pressurized cabin when flying. So it doesn't it kind of combats a little bit of the squeeze that you feel when you're uh up in the air.

SPEAKER_03 34:46

And for me, I cannot use those with um migraine disease, um, except for takeoff and landing, because it does help minimize that that pressure, but otherwise I can't stand to have them on, which I know not everybody experiences. I'm I'm a little weird when it comes to that, but I find it super helpful for takeoff and landing for that the the abrupt pressure changes that it helps with that. So um I love that you brought that up because that is something that is specific to flying, um, if that's an option for you.

SPEAKER_00 35:22

I mean, it could also be um for driving too, I guess you if you're thinking about going for long uh inclines or you're in a very mountainous area and you're just continuing to go up, it can kind of help there too. But you're gonna notice it more aptly when flying because of you know how high you're actually going. Um but no, that's uh that's kind of a good stinky one that if uh if you have a chance to try, I'd I'd recommend.

SPEAKER_03 35:49

I'd recommend, yeah. That's now I don't like to fly without them because it has made such a a big difference. And yes, I only use them for takeoff and landing.

SPEAKER_00 36:00

Um have said they've tried earplugs too um for those, and it kind of has the same effect. Um that's a great point because it's one to try as well if the like the noise canceling headphones I know aren't exactly the most approachable item to to have on hand.

SPEAKER_03 36:18

I I've seen some earplugs that are specifically for migraine for flying. So it makes sense that those that those would work. You brought up flying. I think one of the big things is uh the str the stress when flying. Right. Make sure you have time in between your flights, right? Because that just adds to the stress. Um, you know, if something happens, you're delayed. Um yeah, but you know, carry-ons you're carrying your medication anyway, so that should be helpful. Um, do you think do you think car travel or air travel is harder for you?

SPEAKER_00 37:03

I mean, I think it depends on the duration, more so than the um the option. Right. Because the the duration is gonna be more of a battle of attrition than either one is by default. Right. Um, I'd say initially the car rides were harder because we were driving longer than we were any of the flying we had been doing. Um so it's when the duration comes in that I would say there was more of a struggle with them.

SPEAKER_03 37:34

And now that you're driving, do you feel like it would be different? Do you feel like you would choose differently from initial?

SPEAKER_00 37:42

I'd still say it depends on the duration because that fatigue can still come in there even when you are driving, um, especially long distances with like stuff without stopping much.

SPEAKER_03 37:54

So let's go back to kind of the planning. Do you feel like the planning has actually helped reduce your episodes?

SPEAKER_00 38:08

Um I would I would say at the very least, for those that it doesn't, it helps minimize the intensity. Um because a lot of it comes from the anxiety as well, because I I don't do well with anticipation as well either. Um it's one of those hurry up and waits, and then we're just sitting there at the anxiety building rather than uh being able to kind of act on anything. Right. So that kind of prep beforehand, it kind of helps me work through that a little bit. So it definitely helps limit what it could be, you know, compressing into than when it decides to to no longer be compressed, um, for sure. But um when you when you've prepped sufficiently and you're still kind of waiting, it can still kind of be an issue. But the more you go through that regimen, the the more apt you're gonna be um if it comes up, especially if you start getting more comfortable with it, because it can it could definitely um in some cases, I'd say, uh especially for those we've had in the past, almost kind of negate any of the issues we had because some of those times we've just continued to prep and then we've been so prepared and nothing happened, and we're just do we need all of this? Do we really need to keep doing this? But um well, and that's yeah, it's part of the trial and error. Right.

SPEAKER_03 39:41

It's part of the trial and error where we go, okay, so we probably don't need to go to this extent, right? Me looking for hospitals, emergency rooms, urgent cares. Um, now it's would be hydration places, right? Um, do I need that? Right. So it's it's things we change as we go through. And now we're so apt to functioning, you know, with with traveling now, because we've been doing it for several years. Um we don't even notice it anymore, right? Like it's almost just like, all right, three days before vitamins, you know, it's like we nobody has to say anything, it just happens now. Um you know, so I think that's uh that's part of it. Um can we turn it back a second to let's kind of talk about the uh emotional side of traveling with CVS, if you're okay with this, right? Because we talk about the um kind of the fear of becoming a burden, right? And how that impacted you and you know, how I was able to uh uh adapt and kind of change my way of thinking. Not everybody has that, right? Not everybody has family or extended family or whoever they're traveling with, friends, um, you know, co-workers, whatever you're traveling with, they don't always understand, right? That this just isn't something you can you can control. Um so to me it's kind of how do we handle that, right? We we know that, right? And we're all pretty adaptive, but not everybody has that that ability. Um so I would say choose your travel companions uh carefully um when you can. If you can, definitely. Um solo travel is a coping mechanism, right?

SPEAKER_00 41:48

I mean it can and the and the circumstances prevent for it or allow for it. It's kind of hard if you're traveling with uh other, you know, uh work partners or any of that for sure. I could see because they're not gonna be super f familiar with anything you may be struggling with.

SPEAKER_01 42:07

Yeah.

SPEAKER_00 42:07

But friends and family can also have that same issue where they don't understand. Um so just really having those conversations is kind of where I would start. Not always up front if you think it's something you're gonna be okay with, especially if it's during like your okay um period of your episode, you know, those four stages where you're in that well phase, you might just be able to completely omit it. Uh, but if you're in that like second to third phase, we are probably heading towards a little bit of a downside. Being up front with that can be good. Uh explaining it to them as best you can, um, or you know, cheat with a brochure. That kind of helps explain it if you're you know a little lost for words.

SPEAKER_03 42:53

I mean, I think that's tough, you know, because uh first of all, if you were in actively in an episode, we wouldn't be traveling, we'd be canceling.

SPEAKER_00 43:02

No. Um but you can't always be. Right. And not everybody can, right?

SPEAKER_03 43:09

Yeah, so it's that's a I think it's a it's a difficult conversation, right? Because although we're very open, not everybody wants to or can be. Um you know, and that I think CVS patients are already tasked with so much, right? There's so much that you guys go through, and you know, that fear of being a burden, um, you know, feeling like, you know, you you ruined everything for everybody. You didn't. Like I said, it just it made me slow down. You know, and there's there's nothing wrong with that because actually I I learned to slow down and and enjoy things way more than I was allowing myself time for. Um there those are hard conversations. To have.

SPEAKER_00 44:01

They're very hard conversations to have.

SPEAKER_03 44:03

Well, it took you and I a very long time to be able to talk about stuff like that. Yes and no.

unknown 44:09

Okay.

SPEAKER_03 44:12

There's there's still things. There's days. So CVS has changed the way that that we travel with others, right? What we let others see, um, and what we tell others. So I think, you know, beyond that, because I think we've we've had to do not that we've physically traveled, but we've gone other places where friends and family have been and trying to go, you just need some time, you know, uh is kind of where we leave it. Um, you know, so letting people know, so finding a way for you to communicate with people that you're comfortable with, right? Yeah.

SPEAKER_00 44:52

Um, but it really comes down to knowing your limits. You gotta be familiar with all of the telltale signs that maybe it's time to stop, or if I go past this point, we're gonna have an issue. It can take some time to find those or to recognize them. Um but definitely pay attention to it. Don't don't ignore them.

SPEAKER_03 45:18

Right. You have you have a very staunch line of if I am going for my anti-ametic, that is a you take it and you do not move for 20 minutes. So wherever we are, whatever we're doing, we stop and watch the world go by for 20 minutes. Right. Um, because that's it, it's gives it time to um come to FSE in your system, and that's where you feel like things are going. So set the set the boundaries, right? Let people know. Hey, so we do. We all we all sit down and chill out for 20 minutes if we're just gonna sit there and talk or you know, people watch. I like I like people watching. Um, you know, set the boundaries and do what you're comfortable with, but don't push yourself to exhaustion. Yeah um make sure you're you're setting those those boundaries and sticking to them because they can be very helpful.

SPEAKER_00 46:25

Does help to have um pretty firm boundaries, uh or at least know where yours are, so that you can either let those who are traveling with you know uh before they you know see it in your face at that point, going, Hey, how you doing? And you're like, No, I'm fine. But just keep saying I'm fine. Let them know we're not doing too well. We should probably slow down is probably the the best call to make for those.

SPEAKER_03 46:50

Yes, yeah. So even if we don't finish our hike in Yosemite, we went, we saw things, we walked around. Cross still crossed off. Right. We still would we still did it, we still went, right? Um and I think that's what it comes down to. Is we went, we did what we were capable of. And we all still had a nice time, right?

SPEAKER_00 47:19

Yeah. So let's still got out there to to do something.

SPEAKER_03 47:24

Don't let CVS stop you. Right? I mean, if you're actively in an episode, it will stop you, but don't let it limit you. Yeah.

SPEAKER_00 47:35

I wouldn't I wouldn't let it be the the reason why you're telling yourself you can't. Right. Um it's just find the moments you can and and take them while they're there.

SPEAKER_03 47:48

Plan the best you can without overstressing you, yourself, your loved ones, right? Because we can only we can only plan so much.

SPEAKER_01 47:57

Yeah.

SPEAKER_03 47:58

The rest we have to learn to live with. Really learn to live. Right? Don't let it control you to but still enjoy things, right? We don't want to we don't wanna stare at the same four walls. We want to be able to get out there and and even if we go to a theme park that we can't go on all the rides. People watching's fun, right? It's I think for me it was my it was a big mindset shift um i in learning what we could couldn't do. And then just we kept learning, we kept changing, we kept adapting, we kept trying more things, and now you very successfully uh travel. I can't remember the last time you had an issue traveling and you go what four or five times a year that you travel somewhere. Um yeah, so it can be done, and I think that was kind of more or less the the conversation we wanted to have around the podcast, right? Is talking about it because there's there's a lot of opportunities. Find what works for you, talk to talk to others, right?

SPEAKER_00 49:17

Um be communicated, yeah.

SPEAKER_03 49:19

What what helps, what doesn't. Um, communicating when you're not able to, right? There is no is a boundary.

SPEAKER_00 49:31

Yes.

SPEAKER_03 49:33

Find your boundaries, find your boundaries, you know, find what works for you. Because it's it's possible, you know, it may take a few tries, but I I think overall I think that's kind of what we wanted to talk about, right? Was it's possible, it just may take a few tries.

SPEAKER_00 49:54

No, just like CVS treatment in general. It's a little bit of trial and error to find out what works. Yes. But uh the the best thing to do is to not stop trying for sure.

SPEAKER_03 50:05

I love to hear that from you. Uh it's one travel lesson. You learned the hard way that might help someone else avoid the same mistake. Well, for me, it was probably over planning. There was over planning because I do uh uh like I said, it's um I'm well first I'm a planner. Um but it too much too fast. Um you don't need to plan every second of the day. Sometimes it's nice to just be somewhere like Yosemite and looking at different things for the day, right? If that's what you can do, it's still that is still amazing. Um but you know, for me, yeah, it was the uh you don't need to plan every second of every day. So forced relaxation. But yeah, we you know, I went a little crazy at first with planning like hospitals, emergency rooms, urgent cares. Um, I don't do that anymore. Well, obviously you'd be at the age that you could do that yourself if it was something you wanted to do. But at the time I I felt like it was needed.

SPEAKER_00 51:21

Um but yeah, it also might depend on the kind of individual you are too, because if that's the level of planning that makes you feel comfortable, safe and secure about it, dive in. Yes, no, plan it out. If it feels like that's something that's gonna push you over the edge, worry about it if it happens. Be like, no, we'll be good in the moment.

SPEAKER_03 51:43

Well, I think that's a great, great place to kind of wrap it up, right? Because it really is about learning what works for you. Yeah. Um, feeling confident in what works for you or what um you're comfortable doing, right? Um and plan for that level. In the meantime, there's little tips and tricks that you know we've talked about, what we carry, what other people carry. You know, for you, salt and vinegar, for me it's furritos. They're so salty for emotions like this. You know, I'm like, it's finding what works for you. Um, and then making it make you successful, just like trial and error medications. This is trial and error vacationing. Um, do you have anything else you want to share before we wrap up today?

SPEAKER_00 52:36

I would I would say more so about nutrition, no, because some people don't want to eat because then they feel like they have something to to throw up, especially with like the hydration.

SPEAKER_01 52:46

Okay.

SPEAKER_00 52:47

If anything, I wouldn't be afraid to to to eat and hydrate as much as you can. Because A, your body needs it, and B, it's better to have something to throw up than to have nothing to throw up.

SPEAKER_03 53:00

Well, you learn a lot less strenuous on you. You learn that from experience, having something in there versus the dry evening.

SPEAKER_01 53:07

Yeah.

SPEAKER_03 53:07

Um, but that's a good point. So that is something we should talk about before we wrap up, is because there are people that um also have food triggers, right? Um, and you know how I am with traveling because I have dietary restrictions. So a lot of times I travel with my own food. It's just easier. You know, so that could be something if you have food triggers, that could definitely be something that you need to consider, right? Um, because uh I've traveled enough that some places it's very difficult for me to eat. Um, and that is why I've learned to travel with my own food, to learn what's safe for me. Um, and that can very much come down to things with with um traveling with CVS, um, really with any chronic condition that involves any kind of food, but not getting the proper nutrition or you know, struggling with nutrition or the food triggers, that's something you definitely need to be aware of. So that was a that's a really good point to make as well. I feel like although we've been talking for quite some time, that it only would continue. So I would say, um, you know, look at some of the online communities, CBSA online communities. So there's you can find it uh via the CBSA website, um, our social media pages. Also, people are talking about it. We posted about it because people shared a lot of the things that they take, you know, even blanket comfort items, blankets, comfort items, eye masks, right? Um so there's a there's a lot of those options as well, um, especially if it's applicable for you. Um, not necessarily you, but um, you know, things like that can help. So it's it's a lot of thinking about uh what works for you, what doesn't work for you, what could be helpful, especially if you're thinking, you know, food-related triggers, motion sickness triggers, uh infection. Infection's a big one, right? Sometimes you pick up some of the nastiest bugs while you're traveling. Um, you know, well, don't let that discourage you everywhere. Yes. Be like us. You wear masks, you wipe everything down, you you've become germophobes because infection triggers are a big thing. Um you use a lot of hand sanitizer.

SPEAKER_00 55:38

Bring hand sanitizer.

SPEAKER_03 55:40

But it is think you know, you're thinking about what works for you, what works for your triggers, right?

SPEAKER_00 55:45

Um know your triggers.

SPEAKER_03 55:47

If you know your triggers, because that can start us on a whole nother conversation.

SPEAKER_00 55:51

But whole other conversation.

SPEAKER_03 55:53

What we've learned has been based on our triggers. Your triggers. Um, I say our triggers because you know, migraine. Um, but yeah, no, I think those are those are all really good um ideas. And you you brought up the food thing, which was good because that's uh something that a lot of people struggle with and have with CVS or the food trigger. So make sure that's something that you're aware of as well when you're traveling. Uh I think that's most of what I had. Did you have anything else you want to bring in there?

SPEAKER_00 56:27

No, I mean we covered everything we at least I can think of for this topic.

SPEAKER_03 56:32

Okay, perfect. Well, I appreciate uh talking with you today, Jason. It was good to see you again. Me too. Good again. These communities, the online communities, uh e-newsletters that CBSA has, uh, support group pages have been really meaningful in us learning about all of these tips and tricks. Uh, and we have also shared them as well. This is just kind of a new platform for us to be able to talk about it. So um thank you for trying to keep me on track and um sharing about your um your experiences and and what works for you. And I'm very excited um to hear that you know things are really going well with your traveling in your CBS. Um, it's it people are really excited to hear that there are people that manage um CBS episodes pretty well. So I'm excited that you're one of them because there's times that we didn't think that would ever be a thing.

SPEAKER_00 57:29

I was also one of those who didn't think it was possible either.

SPEAKER_03 57:35

It's terrible that we're giggling about it. It's terrible because it was such it was such a rough time. Um, you know, and it's it's tough when we talk to people um that have that same thing, right? That they're that they're struggling um and they don't want to keep trying. Um that's a whole other podcast because we could talk about that, right? That it it was um it was very difficult, the whole trial and error process, but your proof that it works, your proof that the trial and error works on finding, you know, what works for you for traveling, to the point where you know the rest of the family all got sick in a theme park and you were the only one that didn't. So thank you for sharing with us today, um, Jason.

SPEAKER_00 58:21

Of course. I hope it uh can help some others out there who are also struggling. Definitely. Just keep keep powering through how it works, and uh hopefully one day you'll be good too.

SPEAKER_01 58:37

I like that.

SPEAKER_03 58:43

Thank you for listening to Episodes, a podcast from the Cyclic Vomiting Syndrome Association. Be sure to subscribe, support, and share. We're here to amplify CVS perspectives, spark meaningful conversations, and help change the way that cyclic vomiting syndrome is seen and understood. Don't forget to like, follow, share, check out resources on the CVSAonline.org website, and keep the conversations about CVS going.