Episode Transcript
Jill Brook: [00:00:00] Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and this is another episode of the POTScast with our most popular and favorite all time guest, Dr. Cathy Pederson, who is founder and president of Standing Up to neurobiology professor, and so much more.
Researcher, POTS expert, POTS mom. I have a feeling she is speaking primarily as a POTS mom today. Dr. Pederson, thank you for being here.
Dr. Cathy Pederson: Thanks for having me, Jill. I really enjoy coming on the show.
Jill Brook: Well, today we're going to talk about something that is is like my bugaboo in life that you seem like you have found a lot of great solutions for. I'm still struggling with it and that is traveling with POTS. You guys have done quite a bit of travel with your daughter's POTS, right? You've even like been to Alaska, Florida, Germany, All over?
Dr. Cathy Pederson: [00:01:00] true. Yeah, we have. It's hard on her. Her stamina is not good, but we do have all kinds of little tips and tricks that we've learned along the way that I'm hoping might help some other POTSies today. So we'll find out.
Jill Brook: And the interesting thing too, I think, is that your daughter has some of the more common POTS struggles with travel, and I have some of the maybe less common POTS and POTS comorbidity struggles with travel that are very different from your daughter's, so it'll be interesting to see what happens.
Thank you. Talk about all that, but I'm excited to learn more tips because I still really, really do not like traveling with POTS. So where should we start?
Dr. Cathy Pederson: Well, let's start with a good road trip. Whether people are going to college or they're going to visit family and friends for whatever reason, this is just part of life and it can be very [00:02:00] strenuous and straining for someone who has POTS and the comorbidities as you were pointing out. So I think one of the big problems, at least for my daughter, in a road trip is the vibration of the car. When she was younger, and we hadn't quite figured out what would work, she would just slump over in the car by the time we had driven an hour. She was just so worn out.
We have found that wearing bike shorts, which I think you and I talked about on the show, A while ago, episode one, actually, I think, really helps her. And the reason that it helps, I think, is because it's squeezing the butt. It's squeezing the thighs so that you don't feel that vibration in the same way.
So that can be really helpful. She has for years, sat on a pillow. Whether she's in a wheelchair or in the car or on a flight or train or whatever it is, you want something that's [00:03:00] really spongy and soft that might catch a lot of that vibration and not pass it on to your legs. I think Jill, you sometimes will lay in the back of whatever you're riding in, maybe on cushions, trying to lay down and Minimize those vibrations.
So that's another thing to do,
Jill Brook: Yeah, absolutely. And I have to say, I actually have a vibration allergy or it's one of my mast cell triggers and it's one of my Bad triggers. So I've even sort of battle tested all the various pillows, and I have to say that the memory foam pillows are the ones that have helped me the most. And some of the mast cell doctors, now this is not just for anybody who has a hypersensitivity to vibrations, but for people who have a true mast cell reaction, to vibration.
They have even sometimes mentioned using things like benadryl suppositories, and I'll let [00:04:00] them give out the details for that, but but I think there's the hypersensitivity just as a POTS patient versus the actual mast cell trigger, which can make it tough for people. So people might, you know, look into whether they do have that as a mast cell trigger, if it's really bothering them a lot.
Dr. Cathy Pederson: right? Absolutely. A suppository is something nobody really wants.
Jill Brook: Yes. And please don't let anyone do that on my saying it, but we'll talk about it on mast cell matters.
Dr. Cathy Pederson: Yeah, so I think vibration definitely is an issue. I think it's really important if it's a longer trip to eat and drink regularly. So I have to say I just moved my POTSie to Florida. I live in Ohio. We, we drove to Florida so that she would have a car that she could use down there. And it was almost a 13 hour trip.
And so we broke it across two days. And a couple things were so important. Number one we stopped to eat and [00:05:00] drink. So be sure that you're getting out of the car, but that you're eating protein, that you're eating some better food, try to avoid maybe the junk McDonald's sort of stop, look for salads or something that's a little bit healthier.
But I couldn't believe how well she did. And she had a great big water bottle. That she just kept chugging and she had electrolyte drink in there, but we were traveling and we had the car stuffed with things for her apartment, so she had those little electrolyte packs. We just kept refilling the water and then putting a powder electrolyte drink in there.
That boy, that worked so, so well. I couldn't believe how well she did. I think going right along with that is be sure that you're taking those medicines. At their normal time. Now that can be hard, especially if you're traveling across time [00:06:00] zones. But you really want to try to keep your body in that routine.
I think that's just so, so important when you're traveling. Stepping back from that, things that you can do maybe as you're packing, always pack a little extra medicine. We've seen in the past few years, think about COVID a few years ago where people weren't able to get off of the cruise ships because there was COVID on board.
And they were stuck for a week or more, longer than they should have been on those ships. Always be sure that you carry at least a few extra days worth of all of your medications, just in case something happens.
I have to say, we flew to Washington, D. C. a few years ago, our family actually was winning awards for some of the advocacy stuff that we had done with POTS, and Lily was a teenager and she won in that category, and it was a wonderful experience, but the conference happened to come [00:07:00] right at the time that one of her medications was due.
So at that time she was taking Concerta, that's a schedule 2 drug, and so that would be Concerta, Adderall, Vyvanse, sort of things. And you can't get it 3 months at a time, it has to be every 30 days. And you have a 3 day window. During which you can get this medication. And we were gone for that entire three day window.
And so it turns out, I talked to our pharmacist and I said, look, we're going to Washington, DC. We're going to be gone during this window. I don't know what we're going to do. I don't know pharmacies. Will they fill the prescription in DC? They said, no, we can talk to the insurance company. We will fill it before you leave.
So I think that's really important for people to know that even with those sort of finicky schedule two medications, they won't do that every month, but in special [00:08:00] circumstances, you can get those a few days early if you need.
Jill Brook: Well, and what's going through my mind is, is that's one reason to get friendly with your pharmacist before you need that. So that when you do eventually ask, they know you, they know you're not a drug seeker and they are more likely to take care of you.
Dr. Cathy Pederson: Right. I think even if it's not the individual pharmacist, but you're going to the same pharmacy, where they know exactly as you say, that you're picking up the same medications on a regular routine every month is super important. So find a good pharmacy, good for price, but also good with that kind of service where where they will help you with those kinds of problems. The other thing I would say is Some POTSies are more stable than others, so if you tend to flare and need to go to the hospital or an infusion center to get IV fluids or some other kind of medication, be sure you know where those [00:09:00] places are Along the route and then also at that destination because that can just save time if you're flaring.
You're not thinking well to get that medication that you need. Be sure you have your insurance card with you when you're traveling and if you use an HSA or FSA card, Where you've got an account where you just pay for that medication, be sure you have that with you as well, so you don't have to take it out of your regular account.
And then the last thing, I think there's so much technology for this now, but be sure before you go that your list of diagnoses of medications, allergies, emergency contacts, all of those things are updated on your phone. So that again, if you're not thinking well, you're brain foggy, you're flaring, you're really struggling, you can just hand over your phone, you open that app or the notes, wherever you've kept that, and be sure that [00:10:00] that healthcare practitioner has what they need.
To be able to treat you. So I think those are all sort of good general things when you're thinking about a road trip or really any kind of,
Jill Brook: Yeah. Can I add a couple from my experience? One is just a silly one. When I'm on a road trip, I feel so much better if I'm singing and I don't know what is up about that. I just know that I get brain foggy and lethargic and headachy and yucky if I'm just sitting there or having a normal conversation.
But for some reason, if I sing and I think maybe it's something about A little extra oxygen going through, I don't know. So my poor husband has to has to hand over the playlist to me and and we sing for part of it. I know a lot of patients who, if they tend to get IV fluids, they will sometimes strategically time it.
Now I personally feel better for two days, but then a lot worse when I get IV fluids. So I would not do this, but for people who are really helped by IV fluids, they might. [00:11:00] Do it ahead of time. And then my last one is to maybe think ahead about what you're going to eat and wear for the same reason that you said about once you get there and you're tired and brain fogged you're not going to be in the mood to figure it out.
So a little bit of Googling ahead of time might pay off. So that said, I don't do well on road trips. So I am gonna think twice about all those things you said to see if I can make it. Better. But like, what about booking a hotel? Where can people maybe make up some ground there?
Dr. Cathy Pederson: I think doing a little extra homework before you go can be really helpful actually. So I would suggest looking for a hotel that has a restaurant or at least offers room service. Again, especially if you're traveling alone and you're chronically ill, because you can save a lot of precious energy. by not leaving that hotel again.
Now I have to say, [00:12:00] usually, well, in the past, I've been with my daughter. And so Lily will stay in the room and my younger daughter will go with me and we go out foraging for food. But we never eat out in those situations. We go and buy food and bring it back to the room and then we eat together in the hotel room.
So that's really, really common for us, but especially if you're traveling by yourself. Having that restaurant or an easy food source in the hotel is really helpful. I think having a refrigerator in your room. Many, many hotels offer this now, but looking to ensure that they actually have that can be helpful.
I know my daughter drinks her electrolyte drinks better when they're cold. And so if she can put that water in her big container in the fridge the night before, she's much more likely to actually drink that. And if you're carrying medication, you're worried about heat from the car, maybe sticking that in [00:13:00] the fridge might not be a bad idea as well. If you're going to a big city, you're thinking about a hotel that maybe is, is quite high off the ground has a lot of floors to it, you want to be sure it has an elevator, especially if you can't get a room on the ground floor. So I'll tell you a quick story here. We have traveled a fair amount with Lily, despite her POTS.
And she traveled abroad, she studied abroad, for four months a couple of years ago. And so I'm going to tell you a couple of stories from that, I think, as we go through this episode. But Kate and I, Kate is my younger daughter, who is healthy. Did a lot of the work, really trying to research these hotels. We thought every single hotel had an elevator.
And when you're in Europe, it's not that common. In the United States, it's very common to have an elevator. But in Europe, it's not. [00:14:00] And so we missed on this hotel. It's turned out we were there three or four nights and we were on the fifth floor and so we asked is there anything lower that you can give us because this is terrible.
Kate and I were really huffing and puffing to get up there and poor Lily who had POTS, it was just awful. So be really careful as you're searching that you're filtering for that elevator. We thought we had it and did not. Big problem. I'll give you another example. This one was going to a hospital, I think, and we were going to Cincinnati Children's, I think, and had an early morning appointment, and so we made a little vacation out of it, and we went and stayed in a, in a hotel in Cincinnati, and it was very nice. And it was only three or four floors, but my girls were young, and they wanted to be up as high as possible because you get the best view. We were over the Ohio River . [00:15:00] So Kate and I were out in the pool, and Lily, of course, wasn't feeling well, so she was in the hotel room by herself. I think this happens to a lot of teenagers with POTS.
And doggone it, the fire alarm goes off.
Jill Brook: Oh.
Dr. Cathy Pederson: I'm not there with her, and the elevators don't run. During the fire alarms. And so Lily, I didn't know if she was coming out by herself, if she was waiting for me to come in. So I'm running into the building, which is not a good strategy. I left Kate outside the building by herself, which is a mother I hate to do. turns out Lily was coming down the steps. She made it out by herself. I'm running up the steps trying to find her. She does not do well with big noises and of course this is just mind boggling for anyone, right? It really, those bells permeate every, every fiber. And I [00:16:00] think after that, we asked for rooms on the lower floor, because that was just a disaster for us.
So, it's something to consider. I don't think that happens very often. But it can happen, and it was a really scary situation for our family. The other thing I would say is for people with POTS or other disorders that really limit their mobility, in the United States we have the Americans with Disabilities Act, and that requires that hotels must be closed.
Comply with basic non discrimination policies. And so they will often have rooms that are designated for people with disabilities. So if you call them and explain the situation, they should have a room that you can use. So don't be afraid to call and ask for these accommodations. [00:17:00] They have to have rooms that are barrier free. That you can roll in a wheelchair directly into the room and then also into the bathroom. They might have raised toilet seats, grab bars, tub chairs, walk in showers and so you can get what you need that way at no extra charge. So if some of those mobility issues are a problem for you or a family member, don't be afraid to ask for what you actually need.
They have to give that to you.
Jill Brook: Yeah, absolutely. And another interesting thing that I've seen some hotels offer now is hypoallergenic rooms for people who have multiple chemical sensitivities or fragrance issues. And I think that not all hotels have those yet, but But if there's no place like that where you're going, you can also start to [00:18:00] look at like Airbnb or VRBO and look for places that either advertise that they are sensitive to all that, or you can oftentimes message the host.
And request that no fragrances be left. Or, you know, I think it's a little bit of a joke among some of my friends in the community where the first thing they do when they reach a hotel room or an Airbnb is they go and they find all of the scented things and they set them outside cause that helps them feel better sometimes too.
Dr. Cathy Pederson: That's a great idea. Absolutely. And for those with mast cell activation disorder, that's really important, is to avoid a lot of those chemicals. My daughter just moved into her first apartment in Florida, and they had one of those scented bead things in the room. And it was really lovely. It was nice of them to do that.
We put it Pretty quickly into the trash [00:19:00] because that's not the sort of thing that she needs and so that's one example where they are trying to be hospitable and for someone with POTS and some of these comorbidities that is not helping the situation at all.
Jill Brook: And sometimes it's a game because there's so many different kinds nowadays and some that plug in and some that hide behind the refrigerator. So yes, finding them all when you first get there can be a little game.
Dr. Cathy Pederson: Absolutely.
Jill Brook: Anything else about hotels or lodging
Dr. Cathy Pederson: I don't think so. I think just be sure that you are willing to let them know what you need. You're not going to get accommodations that you don't ask for, so don't be afraid to ask for the things that you need. I think that's the bottom line.
Jill Brook: and sometimes little things like just asking for extra pillows or asking for an extra hour before you have to check out in the morning. Sometimes they're happy to do that for you at no extra cost.
Dr. Cathy Pederson: We've done that [00:20:00] last one many times. Especially when we were in Europe, if our train left at 1 o'clock, but we had to be out of the room at 12, and many places are very accommodating, especially in her case, we were traveling with her wheelchair, and so they see the wheelchair, and they see the kid, and they're very happy to help with those things, so that's another great idea.
Jill Brook: You know, I just thought of one more thing. The last several Airbnbs that I stayed at, they had the thermostat controlled and controlled so that not very much air conditioning would get used. And so if somebody is, is needing a cool temperature, you might consider contacting the host or the hotel ahead of time and finding out how cool or warm the air is.
The room can be and if they can make an exception for you, if, if it doesn't work for you,
Dr. Cathy Pederson: Interesting, I [00:21:00] haven't seen that happen. We haven't had that particular issue, but yeah, that's a great one.
Jill Brook: well, you know, I'm in California where sometimes it can get very, very hot and there's been a couple of hot nights where I didn't sleep because they, you know, the thermostat would only go down to 85 or something. And so something to know for next time. I'm not sure there's anything that can be done about it, but you can try.
Dr. Cathy Pederson: Never hurts to ask.
Jill Brook: Okay. So like, what about trains? Transcribed Or buses, airlines. And
Dr. Cathy Pederson: traveling alone. In Europe. And so Kate and I went with her. We traveled before we dropped her off in Wittenberg, Germany. But then she stayed for four months. And so she was taking classes over there.
At spring break, a lot of the kids went to [00:22:00] Italy. And so Lily went with them. And when she was with them, that was fine. But again, she is chronically ill. She is not as healthy as most people her age, and she knew that she wouldn't be able to manage the trip that they were planning. So instead of staying for the entire spring break in Italy, she flew home after four days. So that she could rest for the second half of the spring break. This was really scary because she was flying by herself on international flights. And she had never flown by herself domestically, let alone crossing borders like that. But she did a great job as it turns out. So once you buy your ticket, and it doesn't matter if it's an airline, it's a bus company, a train company, go to that website.
And search for accommodations. There's a place on there for you to request accommodations. [00:23:00] These can be as simple as food preferences, if you've got allergies or things that you need special. But for her, she was doing it for mobility assistance. So she was traveling with her own wheelchair, but she didn't have anyone to push it.
So she really needed someone to be able to get her. So, they had someone waiting for her at the time of check in that took her essentially from the curb of the airport through security and to the gate. Now, they'll do that even if you're traveling with a family and so even when I'm there, often when we go to check in, they assign someone and when you do this, folks, you skip the regular lines, when you have that TSA guide, they take you to a special gate, they look at your passport or your driver's license, [00:24:00] whatever it is that you need to show, and then They streamline you through that security and they will take you directly to the gate and then leave you there.
And so they did that for her when she was flying from Germany to Italy. She had a little brain fog moment and they asked if she needed her wheelchair at that transfer point and she said no. That could have been a disaster because some of these airports are huge. And walking is not her best thing, especially when she's traveling, she's already been on a flight with all this vibration, with all the noise she's already not feeling good, guaranteed. She ended up being lucky. The departure gate was very close to where she actually had arrived, but this could have really been a disaster for her, so don't be afraid to ask them to pull that wheelchair off the plane. [00:25:00] And have someone take you to that next gate. She was in Germany at the time. So she flew into Berlin, but she needed to take a train an hour to where she was actually studying. She did the same thing with the train company. It's Deutsche Bahn in Germany, but any of those companies will do this. She signed up for accommodations. She had two men. That got her onto the train, and so I saw this actually when I was there, we had accommodations, they have this little mini elevator, is the best way to describe it, where you can roll her right onto it, and then it lifts her up, The three or four feet, and they can insert it right into the train, so she didn't have to stand to climb the steps, she didn't have to get out of the wheelchair, so they had that ready for her, and then she had a connecting train.
Now, it wasn't really at a station, it was one [00:26:00] of these plastic, what do you call them, one of these plastic stops that cover sort of three sides with a roof. And it was cold and it was late, so she's got these two big guys, and she's sitting in the middle of these tracks in this little cover. There are no restrooms or anything there.
And then they got her onto the next train. Now she happened to come in so late at night that they just were headed for home, so they got off on their individual stops. But they had arranged for someone at her destination to get her off of that train. This is a long way around. To say, if you need help, ask. These companies can and will help people with disabilities to do what they need to do to be able to travel. I was never more thrilled than when she texted and said, mom, I made it. [00:27:00] I was really worried about this, her flying by herself from Rome to Berlin, but she did it. I was really, really proud. and very relieved at the same time.
If you're flying, you can ask for a bulkhead seat so that you've got more room to move your legs around, try to prevent that blood pooling and that sort of thing. If you're carrying a lot of medication or if you've got some kind of a medical device that might be difficult to get through security, Have a note from your doctor.
So when she was studying abroad, she was there for four months. We took all of her prescription medications and the over the counter medications, plus all the salt tabs and stuff. I mean, it was ridiculous what we were carrying. We never got stopped, and we traveled to several countries before we ended up in Germany.
But I think if we had not had that note from the [00:28:00] doctor that we carried everywhere, I'm sure we would have been stopped. We
Jill Brook: you would have worried, yeah.
Dr. Cathy Pederson: Oh my gosh. So don't be afraid to ask your doctor for a note saying, Yes, this person is carrying, and they listed the medications. We had everything in its original bottles, but that's really important.
Thank you. And then I think the last thing I would say is consider buying insurance, especially with chronic illness. The one that we've all heard of, I think, is trip cancellation insurance. So if you're in a flare and you're too sick to travel on the day that you've got whatever that ticket is, you can get your money back.
So that's trip cancellation insurance. There are two others that are less Well known, I think, one is called medical evacuation insurance, and I actually didn't even know about this until I was looking it up for this podcast. If you're going someplace [00:29:00] rural, maybe a family or friends that live someplace that's not close to a big city, doesn't have a big medical center there, if you were to flare and need medical treatment, this would cover the cost of an ambulance.
To take you to a larger city that might be an hour or two away to get you the care that you need. So especially if you're traveling to rural areas, this medical evacuation insurance might be a good thing, especially if you do end up in the hospital periodically. The last one is only applicable if you're traveling internationally.
So I think many people know that when you're traveling abroad, Your insurance for the United States that maybe you have through an employer is not applicable. And so if you need to go to the doctor or, heaven forbid, a hospital [00:30:00] stay when you're abroad, that travel health insurance would pay for that. So that's another thing to think about if you're sort of a frequent flyer with the medical community.
Jill Brook: Yeah, yeah. Boy, and we've had a few people on the POTS diaries who've had adventures of that sort, unfortunately, so it does happen.
Dr. Cathy Pederson: It does happen. And these insurances. Can really save a lot of money if you have. I
Jill Brook: Okay, so what else? Should we move on to the actual airport and things that can be done there?
Dr. Cathy Pederson: think so. There are some things that we have learned by trial and error that can really help folks when they're traveling. This one I just learned last night, actually. If you text your flight number to yourself, okay, you text yourself your flight number. So let's say I'm flying on United. You use the [00:31:00] two letters For United, which in that case is UA for United Airlines, and then the flight number, so let's say it's like 1244.
So if you text yourself UA 1244, your phone will identify that as a flight number and will generate a link for you automatically. That tells you the status of the flight, whether it's on time.
Jill Brook: Well,
Dr. Cathy Pederson: been delayed. It will tell you the departure and arrival gates. If it's your final destination, it tells you where to go for that baggage claim carousel.
But the best thing about it, I think, is that it automatically updates. So, if you have a long layover and you're sitting, you know how they have those big boards and you have to walk and go and check the big board to be sure it's what you thought it was? This hack saves you from having to do that. It will update directly on your phone so that you know up to the minute.
I think that [00:32:00] can help calm our sympathetic nervous system. It decreases the amount of walking and movement that we might have to do. I'm going to do that myself the next time I fly. But it's something I didn't know, absolutely, but I think especially if you're chronically ill. That's amazing. What I learned from Kate, who's my youngest daughter and doesn't have POTS, is take a screenshot of your boarding pass.
Everything's electronic now. And so when I travel with her, she takes care of it for me. It's almost embarrassing to say. She's 20. And I am not, but she will take a screenshot of our boarding passes the night before. And here I am, I'm trying to get into the app. I can't get the wifi to work. I'm having all this trouble.
How is this kid doing this? She's like, mom, I took a screenshot of it last night. Don't worry. I've got you again. I'm nervous and worried. Will I have [00:33:00] Wi Fi? Can I get this thing going? Do I remember where it is? I'm a little older. I'm not as quick with these things as the kids are. Boy, that saved me so much this summer.
I have one kid that moved to San Francisco, one that moved to Florida. I now am taking a screenshot of that boarding pass
Jill Brook: So the the higher level strategy that I'm hearing is hang out with 20 year olds every
Dr. Cathy Pederson: Oh, for sure.
Jill Brook: all their tech tips.
Dr. Cathy Pederson: Sure. And, and best, take them with you if you can and let them take care of you. I am mildly ashamed of that, but not that much. And so I pay for it and she takes care of me. We're both happy. Yes, take your kids with you. They can save you a lot of trouble. Yes.
Jill Brook: That's really smart. That's, that's great for anybody.
Dr. Cathy Pederson: Oh, it really is. Coming back to the illness sorts of things, it's really important that [00:34:00] all of your medications go in your carry on. Because if your bags are lost, You don't want to have those medications in that bag. And I have to say, there's only one time where we were flying somewhere and lost our bags.
We were actually flying to China. This was before Lily got sick, so it was my parents and me and my two girls, they were 10 and 7 at the time, and we were there for almost three weeks and my dad lost his luggage. It never arrived in China at all. In fact, it arrived about a month after we got home. So if he had had medication in there, it would have been a disaster. So carry everything that you can in your carry on to be absolutely sure that those medications that you need, you've got with you, very, very important. If your [00:35:00] medications are liquid, I don't know how common that is, but you know, they're very careful, especially for airplanes, about how much liquid you can carry.
You can go to the TSA website and declare those medications. In order to get those through. So think about a diabetic who maybe is carrying insulin as an example
Jill Brook: For sodium chromelin for those mast cell patients.
Dr. Cathy Pederson: Absolutely, an even better example of that, where you may have to carry more than, I forget what it is, 3 ounces maybe is what you're allowed to carry now.
If you have any kind of medical device. That you have to have with you that may not get through those scanners. I would really encourage you to go to the tsa. gov website that can give you tips for that and to help you get those through security. So, very important.
We know that for people with POTS, staying hydrated is [00:36:00] really important, but as we were just saying, getting fluids through security is tough. What we do is we carry the water bottle in a clean, empty bottle. water bottle with us. And then we carry packets of electrolyte drinks. So LMNT or liquid IV or normal light. There are a whole bunch of them where you can get the individual packs. And then when you're through security, go to the water fountain, fill up your bottle.
Put your electrolyte powder in there, shake it up, and you're good to go. So that saves you money on the other side. They may not have Gatorade or Propel or whatever your favorite is. So that's a really important hack. Often they're running so much air, In the airport or train station, whatever it is, and on that flight, that you really need to be thinking of drinking like a glass an hour of that electrolyte drink.
So [00:37:00] really don't be afraid to carry those liquids with you onto your, your train or plane or whatever.
A lot of us are worried about blood pooling, especially if we're sitting for a little while. Wearing those compression stockings as well as an abdominal binder or. Jill's, my favorite Jill hack, which are the compression shorts, are great because what they're doing is they're trying to push that blood back up towards the abdomen, towards the heart, and towards the brain.
When you're waiting in the terminal, prop your feet up on your carry on luggage. You see people doing that that don't have POTS? Don't be afraid to do that to elevate those legs. When you're on the plane, the train, the bus, whatever it is, do some exercises with your feet and ankles to keep that blood moving.
Try to get it back up towards that heart. To [00:38:00] prevent that blood pooling. And then the last thing I'd say, particularly if you're getting onto a big flight, they ask to take people who need extra time first. Lily almost always travels with Blue Lightning, that's the name that we gave her wheelchair many years ago. When we're doing that, the whole family will go on board at the same time, including Kate, my younger daughter. Even when she was a teenager, The whole group can go, so don't feel like you have to split your family, and so in my case I'm a single mom, I've got one child who needs extra time, one child who doesn't, they will not separate you, everyone can go ahead and get on that.
If you don't want to do that, get on last. If you have a ticket with a seat number, it doesn't matter. Now some of the trains in Europe, in Germany, there was not a seat number. The faster you got on, the more likely you were to get a seat. [00:39:00] That's a little different. But if you've got a seat number, you might consider waiting, so that you don't have to stand all that time in line when you're trying to get onto that plane.
Jill Brook: And I would, I would add two words to the to the avoiding lines strategy, which is. TSA pre check which is something you can apply for online and that gets you, you know, through the TSA line faster, which at some airports is a bigger deal than others. But if you really, really want to avoid some of those disaster lines and actually speaking of disaster lines, the other one I do is I go to the bathroom more often than I have to because at airports.
As soon as a plane arrives, there's a super long line, so you don't want to wait until you're desperate and then have to wait in a long line.
Dr. Cathy Pederson: Absolutely. Yeah, absolutely. Those are great tips. The last thing I would say here is wear a mask. [00:40:00] I didn't do this flying home from Florida. I just dropped Lily off. She's starting her first job. And I have been so careful about wearing a mask in mass transportation, but we've just had so much going on. I didn't even think of it.
I didn't pack one. I caught COVID flying home, really irritated. So of course that N95 mask can prevent you from catching COVID or the flu or a cold, which is great because often those can trigger a flare. But you know, if you're really sensitive to strong odors, it also decreases that. So if someone's wearing a lot of cologne or perfume, you can decrease that as well. And then the other thing is they're, again, blowing so much air, particularly in that plane. For some people, having that dry air blowing on them or the temperature changes where it gets really warm in the plane and then all of a sudden they're blowing this cold air, that can aggravate [00:41:00] some people's airway.
So that mask helps to equilibrate that a little bit and you're breathing in more of your own sort of moist air. So that might help a little bit as well.
Jill Brook: Smart, smart. Okay, anything else for airplanes?
Dr. Cathy Pederson: That's all I have. But I'm sure that there are other things that people have found by experience over here.
Jill Brook: Yeah, and let's invite people to email us at info at standinguptopots. org and tell us what we missed because you made us an amazing website that is full of all these travel tips and if we get some novel ones, we can add them.
Dr. Cathy Pederson: Absolutely. That'd be great.
Jill Brook: Now what about if somebody has an extended trip and needs to get medications for longer than they have them? Oof.
Dr. Cathy Pederson: a lot of planning. So again, my example of this is when Lily went abroad for a semester, studied in [00:42:00] Germany, and she takes five medications now, I think. Most of those medications She gets every three months. So she already gets a three month supply. We worked with her doctor and the insurance company, and they ended up giving her a six month supply. So she was in Germany for four months. We wanted to be able to carry all of that medication with us, and so we were really lucky to have that happen. Her last medication, though, is one of those Schedule 2 drugs that you can only get every 30 days. You've got that three day window, so again, that tends to be Concerta, Adderall, Vyvanse are the big ones probably in the POTS community. We had more trouble with that. The insurance company finally would allow us to get three months of that, but they would not give us four. Again, they have much tighter [00:43:00] controls because of worry about addiction.
And so she ended up taking another medication to sort of help her straddle. So on the weekend, she would. Not take her Vyvanse and take something that didn't work as well to try to stretch that. Working with your doctor at least a month before you leave is really important. In our case, because it was four months that she was gone, I started three or four months early.
And it took some time to work through all of this. So if you know in advance about this, start early. That healthcare practitioner might be able to help you find resources on the other end at your destination. But again, the idea of that letter, that you can carry with you was very, very important.
It's tricky, but it really can be done.
The last thing I would say is if you're traveling abroad, [00:44:00] you want to be really careful. You can go to the embassy site for that country. To be sure about any restrictions that they might have on a prescription that you're taking. The most famous example of this, I think, is Brittany Greiner, who does not have POTS, but is a WNBA star who took a little bit of medical marijuana into Russia and got stopped at the airport.
Do you remember that? And was arrested. She was kept in a Russian prison for several months because she had very small amounts of medical marijuana. She had a prescription for it. I think she even had documentation of that with her. But it was not allowed as she entered Russia. That's an extreme example.
I'm not trying to suggest that people would get arrested, but, but you do want to avoid those kinds of problems if you [00:45:00] can. Another thing that's a great hack is to sign up for something called the STEP program. That stands for smart traveler enrollment program. That's something Lily did when she went to Germany.
It's run by the U. S. Department of State. And so it can help you to find what's legal and not legal in the countries that you plan on visiting. But it's also a great way for them to know where you are should something happen, so that they can try to get you home safely if necessary.
Jill Brook: Boy, yeah, absolutely. I think being extra careful, you know, because it's not just about having these disasters happen. It's any little tiny hitch that even forces you to stand around for an extra 20 minutes to work it out. That kind of needs to be avoided in our case. And
Dr. Cathy Pederson: that can trigger,
Jill Brook: right.
Dr. Cathy Pederson: now you're really in trouble and here you are abroad, absolutely. Yeah, so spending some time [00:46:00] in advance can help. It doesn't always help,
Jill Brook: Well, and you know, just as a funny memory so I really struggle with travel and part of it is because one of my comorbid conditions is called delayed pressure urticaria angioedema. So sitting in any position or laying in any position gets really painful after a little while and it's not really the POTS even that is doing it.
But it's It means that, that just having to stand still or sit still during a travel day is very tough for me and I learned the hard way one time I got burned because I thought I was being so smart and I figured out how I was able to swim at the airport hotel up until the last moment before I could, you know, cross over to the airport side of the hotel and get right on the plane and So I still had a wet bathing suit on underneath my clothing and it turns out that some of those security machines that you go through, they detect [00:47:00] moisture as something to look out for, so that then forces you to get into a different line and get the manual check and that took a long time and it would have been way better if I had just taken the time to take off the bathing suit, change clothes, get dry and so live and learn.
And so now I have to admit that I've kind of given in to, to just knowing that those days are going to be miserable, even if I do everything right. So I will try to be strategic and save some good movies or podcasts. for the travel time. So for about a month before I travel, I save them up. So I have a reason to be excited for that day.
And then I try really hard not to have anything planned the next day so that I can just recover and then hopefully get back to enjoying whatever the travel was supposed to be about.
Dr. Cathy Pederson: Right, and we do that too. We always schedule Lily sort of a rest day so that she can rebound from the [00:48:00] travel before we start doing something else. Absolutely. I think that's very important if you're able to do that.
Jill Brook: Yeah. And, and, Travel is something I really struggle with because obviously big occasions and big memories are often partly made by travel, right? Like the wedding or the event is meaningful because so and so flew in all the way from somewhere to be there. And it can be so meaningful to take the effort to be there in person, but I would say If the price is too high, I think there are times when you can consider other creative options, and I'll just share one that, that worked for me, and this was when I was granted at my very worst, and I had moved to Alaska because this was when I had to stay shivering cold not to pass out, and so we kept our house at 58 degrees, and that, that kept me from [00:49:00] passing out.
But my dad was getting remarried in Southern Florida and the idea of flying all the way from Alaska to Florida was just too much for me. I just couldn't imagine a world in which I would make that. And I. Thought about it for days on end and in the end, what my husband did for me was he went to the wedding and he put Velcro on the back of an iPad.
He got an inexpensive tie to wear to the wedding reception. And he velcroed an iPad onto his tie and I zoomed in and I got to be there on his chest for the wedding and for the reception and everybody thought it was so novel and so fun and funny that it turned out being great and it wasn't awkward and it was such a great time.
alternative for me because I know I would have been just a miserable wreck had I actually traveled. So I think it's okay on occasion to to bow out of [00:50:00] things if, if the price really just would be too high.
Dr. Cathy Pederson: Absolutely. I agree with that. I think that's very important. Your health has to come first, and if it really is going to impact your health, it's just not worth it. But I love that idea, and how creative you and Mike are to come up with something like that.
Jill Brook: Well, sometimes a touch of silliness can make everything better. And so that was one of those cases.
Dr. Cathy Pederson: Absolutely.
Jill Brook: Well, I think that I, I love how you and Lily and Kate have made it work and you have seen the world and you've traveled everywhere and she didn't miss out on a semester abroad and thank you for collecting all this wisdom and for sharing it with us.
Dr. Cathy Pederson: Absolutely. Happy to be here.
Jill Brook: Anything else to say about travel or shall we just wish people good luck?
Dr. Cathy Pederson: I think just travel in moderation, [00:51:00] right? I agree with you. Avoid it if you can because for a lot of people with POTS, it's very difficult and it takes them a long time to recover from that. But if you do travel, hopefully a little planning will save you some energy in the long run.
Jill Brook: Beautiful. Okay. Well, if anybody else has tips we didn't yet think of, please send them to us at info at standinguptopots. org and we look forward to hearing what helps you travel around. So good luck, everybody. We hope you enjoyed today's conversation.
We'll be back again next week. But until then, thank you for listening. Remember, you're not alone and please join us again soon.
