POTS Revisited: Embolization, GLP-1 & Daily Management with Dr. Alexis Cutchins

[00:55] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you navigate joint hypermobility and live your best life. I am so excited today to have Dr. Alexis Cutchins back on the show. In part 1, she walked us through an overlooked driver of orthostatic intolerance in a large subset of POTS patients: pelvic venous disease. We talked about the red flags: unusual varicose veins, pelvic or leg heaviness, swelling, bladder symptoms, and so much more. And we talked about the stepwise workup that starts with pelvic and lower extremity venous ultrasound and moves to MRV when obstruction is suspected. Dr. Cutchins shared striking outcomes data in her patients after iliac vein stenting. About 75% of her patients improve, and nearly half have complete resolution of their orthostatic intolerance, often with dramatic improvements in pelvic pain and interstitial cystitis-type symptoms.
[01:53] Today we'll be diving deeper into treatment decisions, imaging pitfalls, and how to recognize when venous disease is masquerading as, quote, just POTS. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[02:16] I am so excited to have Dr. Alexis Cutchins back to continue our conversation on POTS and pelvic venous disease. I definitely want you to check out our previous conversation, which is episode 167. Hello, Dr. Cutchins. How are you doing today?

[02:31] Dr. Alexis Cutchins: Hi, Linda. It's so good to be here. Thank you so much for having me.

[02:35] Dr. Linda Bluestein: Absolutely. We had such a great conversation last time, but it just felt like it was going to be incomplete if we didn't have a second part. So I'm really excited that we get to do this because I know that a lot of people had remaining questions after listening to the first part. We're going to jump right in and let's start out by talking about outcomes, quality of life, and durability from the standpoint of some of these procedures that people are doing. So I'm curious, from a quality of life standpoint, how your patients describe their recovery — not just in terms of pain, but also function, sexual health, bladder symptoms, exercise capacity, and day-to-day activity.

[03:14] Dr. Alexis Cutchins: Yeah, that's a great question. It's very variable. Not everyone has the same response. I tell patients all the time that treating pelvic venous disease isn't going to cure all of your problems. It's one component, it's one facet of a very large kind of system of issues. But the patients that have repair of their pelvic venous disease often tell me that initially there's back pain, initially there's a little bit of recuperation, but then some of them are like, wow, immediately — like day one, I got out of the procedure and I felt like color had come back to my face. Or I felt like there was this shift that occurred, and my husband told me that I looked different all of a sudden. It can be that quick, like right in the recovery area.
[04:10] But it can also take up to 3 to 6 months to even feel like you're shifting in the right direction. So I've heard it both ways. I've also heard patients tell me they feel instantly more blood flow to their brain, less brain fog and fatigue, just a different kind of sensation. And then after 48 hours or so, that goes away. And then they're kind of working towards getting that back over the first 3 to 6 months after treatment. So it's really variable and it's very hard to predict.
[04:41] But the patients that I find have the most success with the procedure, or feel like it's helped the most, are the ones that are already on their way to improvement in other ways. Like they've really worked hard on treating their mast cell activation syndrome. They are avoiding all the possible triggers they can avoid. They are trying to do a little bit of exertion, even if it's minimal — just something. They feel like they've already overcome a little bit of a hump in their disease course before they got pelvic venous disease treated. The patients that are in a lull with their treatment process and are really struggling may not feel as much of an improvement instantly with this procedure.
[05:26] But I do hear all kinds of things like: I can now do more in a day. I don't have as much post-exertional malaise. My heart rate doesn't shoot up every time I stand up. My blood pressure's gone up. A lot of people have had a drop in blood pressure, especially after COVID, or when their symptoms started they noticed that their systolic goes down by like 10 points — and this kind of restores that systolic blood pressure. So there's a wide range of improvements. Obviously people feel better from a pelvic vein standpoint; that is pretty consistent. Pelvic pain and leg pain both go away unless you have bad lower extremity venous insufficiency. But with that comes less pain with intercourse, better orgasm — sexual health improves. So the pelvic pain and pelvic symptoms definitely respond well to treatment. And then what we hope is that the POTS improves, and the exercise intolerance and the fatigue and the brain fog and migraines all get better as well.

[06:36] Dr. Linda Bluestein: That's really good, because we know that a lot of people with POTS do have problems with sexual function, and that can be so impactful on your overall wellbeing. In addition to all the other things that I think are more common for people to think about, I think we don't often think about those parts of the person's life. So thinking longer term, how durable are these improvements? Do you see people that have recurrence or progression of disease, or need for re-intervention?

[07:04] Dr. Alexis Cutchins: That's also a good question. I have patients who have only gotten better — they get their pelvic venous disease treated and every time I see them, they are improving. I have other patients who have improved 6 to 12 months and then they start declining again, or something is kind of bringing them down. Whether that's a viral infection or some other life stressor — we're still dealing with the same triggers. Even though the pelvic venous disease is fixed, as I said, it's not a cure-all. So we have people who can still flare in mast cell symptoms, flare at other things. Everyone has to be very aware of that.
And then there are patients who get better and then kind of drop off again. I think that usually has to do with either inadequate treatment of the disease in general. A lot of patients have concomitant renal vein compression, or skull-based jugular vein compression, or cranial cervical instability, or tethered cord, or lower extremity venous disease that hasn't been fixed. All of these things are possibilities and they kind of tick up. You're fine for a while and then the occult tethered cord pops up, or you're doing great for a while and then something else pops up.
[08:27] What I have not seen is failure of the stent specifically. These stents are very durable. In my experience, they have not closed and they have not thrombosed. The stent is pretty safe and it's going to stay there. Sometimes I do see patients who go back in and get a stent on the right side, or if they didn't get two stents to begin with, need a stent on the other vein. That's a possibility and that can help move people forward. Sometimes it's just a matter of inadequately treating the venous disease to begin with. And what we're hoping is that we can treat it with the least number of stents and hardware in your body possible. But sometimes you have to go back in and do a little bit more. We can't totally predict if we're going to nail it the first time. So those are all reasons I see a kind of decline after stenting, if they had been feeling well and then things start going another way.

[09:20] Dr. Linda Bluestein: And we know that rehabilitation and reconditioning is super important for everyone with POTS. And of course, a lot of people with EDS get kinesiophobia. I had kinesiophobia for quite a long time, and I was so afraid to move because everything I did seemed like it hurt and it seemed like I injured myself so easily. So I would imagine whether somebody gets stenting or not, that reconditioning would be important. We know that deconditioning does not cause POTS, but that POTS and EDS and mast cell can cause you to be less conditioned. Do you have thoughts about graded reconditioning and what you recommend to patients?

[10:06] Dr. Alexis Cutchins: Yeah, so I had a couple of patients get treatment of their pelvic venous disease — namely with an iliac vein stent — and immediately went back to trying to do what they had been doing before they were diagnosed with POTS, like 2 years before or whatever it might've been. And then they come in and tell me this didn't help. And I'm like, well, what do you mean it didn't help? What are you doing? And someone will say, well, I'm exercising every day. I'm lifting weights 3 times a week, and I feel horrible. And I'm like, well, what were you doing before the stent? I wasn't exercising at all. Okay. And did your back pain go away, by the way? Oh yeah, my back pain's totally fine. I don't have back pain anymore. I just don't feel like the stent has helped me physically. And I'm like, well, I think you have a lot of post-exertional malaise. You're doing too much too fast. The reason you're more tired is because you jumped right back into what you thought you should be able to do, because that's what you could do before.
[11:05] So point blank: we have to make sure — and I say this to everyone even before they go see the doctor who's going to do the stent — by the way, you're potentially going to feel great after this, and you're going to feel like you want to do everything you used to do, and you can't. Because then you're just going to get the post-exertional malaise and it's going to build up and you're going to flare and you're going to get a whole ton of symptoms. So I recommend that patients follow something like the CHOP protocol or the Dallas protocol — something for POTS — and work with a physical therapist if you can, but something that's very gradual graded exercise so that patients can slowly build up to where they had been previously. But if you jump right back, you're going to fail. I've talked to people about coming up with some sort of post-stenting protocol or app or program or something, and that hasn't been made yet, but I think it should. It's like almost a little bit of cardiac rehab, or post-stroke rehab, pulmonary rehab. You really need to take it easy going back in. You can't just jump right in.

[12:20] Dr. Linda Bluestein: And that all-or-nothing thinking that so many of us have — I'm definitely guilty of this too. We try to do what we did before, and then we think, oh my gosh, that's not feasible. And sometimes there is a new normal that we work hard to get to. Like I had a new normal that was at a certain place before, but then more recently I started doing a few other things and now my new normal is actually even better. So I was just traveling and I was shocked when I went to lift my suitcase into the overhead compartment — I was like, wow, that was actually easy. I think sometimes being patient and going slow is really hard for us, but it's so, so important.

[13:05] Dr. Alexis Cutchins: It's interesting. It reminds me of this patient I saw recently who had been told by previous doctors, when you feel good, you should do as much as you possibly can — like get everything done. And I was like, who told you that? What are you talking about? And she was like, well, isn't that what I'm supposed to be doing? I mean, that's why I stayed up all night after I felt so good when you told me to do X, Y, Z. And I was like, oh, I have no words. We're getting you a Visible device. We're putting you on a pacing program.

[13:07] Dr. Linda Bluestein: Right.

[13:37] Dr. Alexis Cutchins: But I get it. A lot of my patients have those feelings — I finally feel better, I need to get all this stuff done. And it just doesn't work.

[13:47] Dr. Linda Bluestein: Yeah, exactly. And that's the other thing too — you feel like you're so behind because you haven't been able to do things. So if you feel a little bit better, you're like, I'm going to try to do all these things. It really is challenging, the pacing and all of that. Do you have favorite options? Like recumbent bike, rowing machines? Do you have suggestions for how to progress those kinds of things?

[14:10] Dr. Alexis Cutchins: Yes. I love the rowing machine. I think it's a full-body strength training workout, so you really build muscle, which is very important in this population of patients, many of whom have insulin resistance and glucose intolerance. They need muscle. Our patients need to build muscle. It's also very helpful for supporting their joints.
[14:30] I really like the recumbent bike because you're sitting instead of upright. It's pretty low-level exercise, so if it's all you can do, that's probably a good starting point. I like swimming, or any exercise in the pool. The pool is like total-body compression, so a lot of patients find they can do more in the pool. Some of my patients tell me, I feel great in the pool, but the second I get out, I feel horrible again. So I don't like going in the pool because as soon as I get out of it, I don't have that relief anymore. That's a real thing, and so you have to be careful about the pool. But I do think the pool is helpful because it helps keep your circulation in the right place and helps keep blood flow back to your heart.
I tell patients that whatever mode of exercise they're starting with to get back into conditioning, to do literally like 2 minutes a day. What I want is for someone to do a small amount every single day and not try to do a 90-minute workout twice a week — because that's a disaster. So 2 minutes a day. If you can't do 2 minutes, 1 minute, whatever you can do so you don't have post-exertional malaise.

[15:43] Dr. Linda Bluestein: Mm-hmm.

[15:44] Dr. Alexis Cutchins: Once you've figured out where you are so that you don't have post-exertional malaise and you're doing some form of mild cardio exercise every day, then you can start bumping it up by 1 minute at a time. If you're doing 3 minutes a day, then 2 days a week you could do 4 minutes a day and do 3 minutes the rest of the week. And then the next week you can bump that up to 3 days where you do 4 minutes. We're literally talking about the teeniest, tiniest increase in incremental length of exercise — you don't even want to know you're doing more, so that your body just gets used to that amount. And then you add on just a little bit more again. Over time it takes forever. I get it. I understand everyone's going to want to do more, but your body doesn't sense that stress. You don't get that post-exertional malaise response.
[16:38] And then obviously having some sort of device that helps you manage your heart rate and keeps it in check — keeps your spoons accounted for, whatever you want to call it, whatever device you want to use is fine with me. But keeping a tally on things like: are you capable of exercise today? Is your body ready for it? Are you going to be able to do it — before you even start — is really important too, because you just don't want to flare your symptoms.

[17:05] Dr. Linda Bluestein: And I wear a Polar watch. I have to keep turning it — I'm allergic to nickel, and so I get a rash from it if I wear it all the time, so I switch it back and forth from the inside of my wrist to the outside of my wrist. But it really helps me having that data. It helps me know how much I did and be able to correlate that with how I feel. So I can, like you said, slowly and incrementally increase.
[17:25] And I love what you said about the pool. I was on vacation once with a family member who has POTS. I've been diagnosed with dysautonomia of pregnancy and I'm definitely on the spectrum, but not full-fledged POTS. Anyway, I was feeling really poorly and my heart rate was definitely greatly increased. And this family member suggested that I jump in the ocean, and I had all my clothes on — I was not wearing a swimsuit — and I was like, oh, I don't know. And it felt like I had just gotten a big bolus of fluids because, of course, the compression increased the venous return to my heart and increased the blood flow to my brain. And I felt so much better. It cooled me, and then I got outside in my now-wet clothes and it was actually wonderful. So I love what you said about the pool. It's great for the joints also because you have the resistance of the water. I love water exercise. I think it's a great thing.

[18:19] Dr. Alexis Cutchins: Yeah. And I think the ocean is especially therapeutic too — the saltwater is useful for many other reasons, and being outside — it all adds together. Yes, I love water activities.

[18:34] Dr. Linda Bluestein: And are there any red flags that people should be aware of as they're rehabilitating themselves that say, ooh, you better pause right away?

[18:43] Dr. Alexis Cutchins: From a stent standpoint — from a treatment of pelvic venous disease standpoint — nothing really comes to mind. Obviously if you have crushing chest pain, or any kind of chest pain, or if you have acute shortness of breath, those are things we want you to go to the ER for. With POTS, if your heart rate is going up too high, if you're spiking in ways that you wouldn't normally, then I would take it down a notch, maybe rest that day, or not continue with the workout. You just need to listen to your body. Obviously it depends — it all varies with the barometric pressure, with your period and your cycle. If you traveled and you want to work out now but you're in Colorado instead of Georgia, all of these things will make a difference. So you just have to accept that it's not going to be consistent and the same every single day.

[19:51] Dr. Linda Bluestein: You mentioned long COVID already, and also post-exertional malaise, which we know is common with ME/CFS. I feel like the long COVID/POTS/ME/CFS overlap is sometimes hard to understand. So I want to ask you some questions about long COVID. Can you start by explaining the relationship?

[20:16] Dr. Alexis Cutchins: Yeah. I've had long conversations with Dr. Peter Rowe about this topic. I think he's a brilliant clinician and physician and I've learned so much from him. If you look at his work and his studies, ME/CFS really stems from a lack of blood flow to the brain — that's a primary etiology. Most patients with ME/CFS have POTS; a large majority of them do, I should say. But almost all of them have decreased blood flow to the brain if you look at transcranial Doppler or carotid Dopplers of these patients, even if they don't meet criteria for POTS. So ME/CFS is on the spectrum of POTS — it's just that they haven't necessarily met the heart rate criteria for POTS. It's still an orthostatic intolerance. Patients with ME/CFS are going to feel better lying down. They're going to feel like they can regain some function if they lie down and have some blood flow to their brain. They're not going to feel as well in the upright position all day. So it's very similar to POTS — you're just taking away that tachycardia.
[21:24] Long COVID — the COVID infection is what induces these things in many patients. You have COVID, you have this inflammatory hit to your system. It causes a lot of cytokines and inflammation to occur, and that triggers this systemic inflammatory response that then results in ME/CFS, POTS, long COVID, et cetera. But people who have long COVID usually have some component of orthostatic intolerance, whether it be ME/CFS or POTS — it's going to be there.
[22:01] And I would argue that while long COVID is different from other post-infectious chronic illness, it's similar in the sense that — for instance, with Lyme disease, if you get Lyme infection and then you have chronic Lyme, or if you get EBV and you have chronic EBV — we're looking at this post-viral chronic illness that occurs. It's the virus, or the parasite, or the bacterial infection, or whatever it might be, that first hit that causes this inflammatory cascade that then causes your more chronic conditions of ME/CFS and POTS.
[22:39] And I think personally — and there's data now that backs this up — patients who have hypermobility, patients who have had a history of allergy, migraine, or hypermobility are more likely to develop complex chronic illness after a hit like this, after an infectious source. So we're learning about who is at risk. I don't think everyone in the population is equally at risk. I think that if you have some hypermobility spectrum disorder or underlying connective tissue disorder, you're at higher risk for developing these complex chronic illnesses. That's important to know. We don't know how to prevent that yet, but I think it's good for people to be aware — even people who don't have long COVID, ME/CFS, or POTS, who are just hypermobile. Maybe you should be careful if you have an infection, like really take care of yourself, or not put yourself into undue stress if you can avoid it, or work on your breathing regularly. All these things can be important.

[24:05] Dr. Linda Bluestein: Absolutely. And I still mask on the plane. I feel like I'm like the only one usually on the plane who has a mask on, but I feel like it's such a small thing I can do to try to reduce my chances of getting COVID and possibly getting long COVID. And I also thought that was interesting what you said about infection and these post-infectious things that can happen — that people with hypermobility are at increased risk. And that would also be true for things like concussion or physical trauma, or even maybe psychological trauma, like a car accident or those kinds of things as well, correct?

[24:41] Dr. Alexis Cutchins: Yes, absolutely. We see lots of post-concussion POTS. I see lots of post-surgical interventions — that kind of trauma. The other thing I see, which I don't talk about a lot out in the wild here but I think is important to note, is that in my clinic I see tons of POTS post-bariatric surgery. Patients who go in for bariatric surgery to lose weight and then develop POTS. With the GLP-1s now, it's a completely different world — not everyone is getting sent to bariatric surgery. But I think it's really good to know that if you do have hypermobility and you're overweight and you're struggling to lose that weight, I would be very cautious about advising someone to have bariatric surgery for that reason.
[25:34] When I talk to patients in my clinic who have POTS, usually they've done everything they possibly can to lose weight. They're not eating a lot, they're exercising — no matter what they do, they're gaining weight. And this is a stress-induced response, a stress-induced inflammatory weight gain. This is not overeating. So if you're shrinking the size of your stomach with bariatric surgery, it doesn't really address that. It works to begin with, but it doesn't last, and then they develop POTS — which is just such a tragedy. And then they can't drink enough water because they have no stomach, you know.

[26:09] Dr. Linda Bluestein: Right.

[26:10] Dr. Alexis Cutchins: It's just like a public service announcement, I think. But with the GLP-1s, which we're using all the time now, it's not as big of a deal, but I thought I'd mention that.

[26:17] Dr. Linda Bluestein: I really appreciate that. And while you just mentioned GLP-1s, I'm curious to ask you what your experience is. I'm shocked at how many of my patients are doing really well. You have one patient and you think, oh, this might be a reasonable thing to try, and then you have another person and it works well, and you're like, okay, that's 2. Then 3, then 4, and next thing you know you have 10 or 20. And I'm shocked. So long as we approach it very slow and very low. Are you experiencing the same thing? And if so — a short digression into GLP-1 — are you using tirzepatide? Are you using something else?

[26:54] Dr. Alexis Cutchins: Yeah, I love them. They're changing the lives of my patients. What happened with me was people started coming to see me and they had been put on GLP-1s by someone else for weight or whatever. And they are telling me that their joints feel better, their fatigue has gone away, and they never want to stop taking this medication. It's been a complete game changer for them. And here I am in the world of autonomic dysfunction and POTS thinking this is going to be the worst medicine for my patients because it could cause gastroparesis and orthostatic intolerance. All the side effects are very concerning. But with time I saw more and more patients who were benefiting, and then I just started prescribing it because I believe in it and patients are doing great.
I think the GLP-1s — and there are some case reports about this — people are seeing mast cell stabilizing effects. I have one patient who I started on a GLP-1 and she did not need to lose weight at all. I told her if she did, I'd stop it, so she had to work really hard at eating. But her reactivity went away. Like she stopped having hives and reactions to things. It was really an MCAS response that it helped with primarily. So yes, I'm seeing lots of benefits. I think it's great.
[28:18] I use tirzepatide exclusively. I don't really use semaglutide; it does have some more side effects. I start at 0.5 weekly, when the regular starting dose is 2.5, as you know. So I use 0.5 as my starting dose and I find that people tolerate it. Some people feel great on just 0.5 of tirzepatide and we just keep it at that — no problem. Some people need a little bit more. Sometimes we'll go down if they're having side effects; we can do even less. I like to start really low, as you said, and go up incrementally until we hit the dose that's working best for the patient. But these are going to be huge, huge game changers.

[29:03] Dr. Linda Bluestein: And isn't it always nice to have another thing in your armamentarium? I know for me it was such a relief — nothing works for everybody, but to have another thing to potentially offer people. And if they are game to try — yeah, normal weight patients and so on. We will definitely link that article you were referencing. I'm sure it's the Dr. Afrin et al. article — he's probably not the first author on it, but we will definitely link that in the show notes so people can read that.
[29:36] And I have one last question before we take a break. Does long COVID change your diagnostic strategy when it comes to venous disease or your strategy when it comes to treating POTS or working it up?

[29:46] Dr. Alexis Cutchins: It doesn't actually. And I kind of became the expert on long COVID very quickly when I was at Emory seeing these patients, because I'd already been seeing POTS patients for so long. I just chalked it up as one more post-viral illness. So instead of treating chronic Lyme or post-EBV or whatever it was that I was seeing before, now it's long COVID. I take the same approach to diagnosing POTS patients and managing them.
[30:21] But I did learn about pelvic venous disease in the long COVID era. And I do believe that the COVID infection is highly inflammatory, and it may — I don't know, we haven't done this research, we haven't done this study — but it may really compress that venous system down more than some of the other post-infectious chronic conditions we see. I don't know, but so many of my patients with COVID have this. I have some patients that said their first symptom with their COVID infection was left leg pain and swelling — before headache, before congestion, before sore throat, their leg hurt.

[31:06] Dr. Linda Bluestein: Right.

[31:07] Dr. Alexis Cutchins: And so obviously something's going on with the venous system in that patient — the inflammatory response, all those inflammatory cells going down to the iliac vein and just wreaking havoc.

[31:19] Dr. Linda Bluestein: Mm-hmm.

[31:19] Dr. Alexis Cutchins: So I do have a very low threshold to look for pelvic venous disease in my patients. Whether or not it gets treated, that's a whole other can of worms — when do we treat it, who's going to benefit? There are a lot of questions I don't know the answer to, and I sort of leave it up to the patient whether or not they want to pursue this and look further. But just because it's long COVID, it doesn't necessarily change what I do for patients with POTS.

[31:46] Dr. Linda Bluestein: That is great information. We're going to take a quick break, so grab your favorite drink and your favorite salty snack. When we come back, we are going to talk about what you should do if your imaging is read as normal but you strongly suspect that you have pelvic venous disease — because we know that's a common problem. We're going to talk about some hacks and all kinds of other things, so we will be right back.
[33:32] Okay, we are back with Dr. Alexis Cutchins, and I'm curious to ask you next about heat intolerance, sleep, travel, and some real-life micro hacks. Can you start out by telling us if you have some heat intolerance hacks and/or sleep position hacks, and what you recommend for people in terms of travel when it comes to dysautonomia and/or POTS?

[33:58] Dr. Alexis Cutchins: Yeah, I have recommendations for all of that. Let's start with heat intolerance. I think heat intolerance is very closely related — I think it's a mast cell phenomenon. A lot of people associate it with dysautonomia. I think it's dysautonomia that's triggered by MCAS, and the MCAS is triggered by the heat. So if you can treat the MCAS, your heat intolerance improves. And I have seen this time and time again in many of my patients. So I often recommend MCAS-targeted therapies for people with heat intolerance, which is literally all my patients — so it all kind of blends together. Some of them have cold intolerance, most have heat. So that's all targeted therapies.
[34:46] But I also tell patients: obviously don't go out in the hottest time of the day. Try to limit hot showers. If you can use less hot water in your shower, that's better. If you do need to go out in the heat, there are things you can bring with you — a cooling neck towel, an ice pack that you can put around your neck, wristbands that have been frozen that you put on your wrist. These are points that cool you faster — your wrists and your neck. You can use a cooling vest. Neck fans. There are all kinds of apparatuses that people can wear when they're outside in the heat. If you're having issues with the heat, then go back inside. Air conditioning is your friend.
[35:37] Sometimes patients will tell me they have problems with the transition from hot to cold. That's a trickier one, and I think again that's where I go for the mast cell targeted therapies — let's calm down the mast cells and try not to let them get so upset when you're transitioning from hot to cold or whatever it might be.
[35:59] Okay, the next one was sleep.

[36:02] Dr. Linda Bluestein: But I want to ask you a follow-up question on heat before we move on to sleep.

[36:12] Dr. Alexis Cutchins: Yeah, yeah. Go ahead.

[36:15] Dr. Linda Bluestein: I'm very fortunate in that I have good access to a sauna, and I've noticed that my heat tolerance has greatly increased as I have used the sauna more. I'm curious if you think that it is a good idea for people to try to increase their ability to tolerate heat.

[36:35] Dr. Alexis Cutchins: I have never recommended to any of my patients to go in the sauna or a hot tub, because it makes me very nervous in terms of blood pooling and vasodilation and whether they'll have a syncopal episode in the setting of one of those things. However, small amounts of time may not be bad actually, as you're saying — if we can increase in very small increments the amount of time we can tolerate the heat, that might help. Also recently someone just told me that they feel a lot better after going in the sauna and they've been trying it and it's been working. Maybe it's helpful. I just haven't personally had experience recommending it because I'm so gun-shy with my POTS patients in terms of heat exposure. But I have heard a few tidbits that people are feeling better with it.

[37:38] Dr. Linda Bluestein: So when I first started using the sauna, my palms would sweat, but nothing else. And now when I'm in there I can tell I'm having a mast cell reaction — I get out and my husband looks warm, but he doesn't have the blotchy, rashy kind of look that I have. But now my whole body can perspire, and I feel like that's helpful because it's hard for me to exercise hard enough to perspire. So I feel like it's a good way to get some things out of my system, and I feel like that's beneficial. I was just curious — there's no data on it either. I was just curious.

[38:15] Dr. Alexis Cutchins: No, that's fascinating. And it's interesting that your body is learning to accommodate to it. I have a lot of patients that don't sweat, and I think it's a major problem. The question is how do we get you to sweat? Usually treating the mast cell helps — a lot of my patients start sweating again when I get their MCAS better. But yeah, it's kind of amazing. I would love to have a tool that helps patients' bodies regulate better on their own, without a pill or an intervention.

[38:53] Dr. Linda Bluestein: Right, right.

[38:56] Dr. Alexis Cutchins: That's fascinating to me.

[38:57] Dr. Linda Bluestein: What about sleep? Do you have suggestions for sleep?

[38:58] Dr. Alexis Cutchins: Sleep is a tricky one. The age-old sleep recommendation for patients with POTS is to sleep with the head of the bed up, to keep your body kind of learning how to be upright — that's my understanding of why you would suggest that. To me, I think you should be perfusing your brain as much as possible. So doing that all night is not great for your sleep. I don't recommend it for patients, although some of my patients have tried it and said it really helped them. So I'm not against it — it's just not one of the first things I recommend. It's not in my handout for POTS patients that says you have to sleep with the head of the bed up. I don't push that.
[39:55] I think it's important to be in a good temperature environment for sleep. Make sure you're in a cooler room. Make sure it's dark in your room, make sure you don't have a lot of lights and flashing things all around you. Obviously sleep hygiene is very important — not using your phone right before bed, having a pattern that you follow every single night at bedtime, keeping a consistent wake time, setting your alarm for the same time every day. I think CBT-I can be very helpful for patients — not everyone, but it can help. Sleep is hard. So many of my patients find that they really can't wind down.
[40:51] In regards to sleep, I will say I have a lot of patients that tell me after their pelvic venous disease has been treated, their sleep improves and they're able to fall asleep. And I have a theory about this: when you're upright all day and you're not getting blood flow to your brain because you have orthostatic intolerance and POTS, when you lie down, your brain is all of a sudden getting perfused. And your brain is like, oh, I'm getting oxygen — I can start thinking about all the stuff I wasn't thinking about all day. It wakes up and then it doesn't want to go to sleep because it's been fighting all day to try to get oxygen.
[41:32] But when you've been perfusing your brain appropriately all day, going to bed actually isn't this big triumph for your brain. Your brain is like, okay, now I can shut down. I've been working all day, I can relax and calm down. I don't have any data to support that, but I do hear from patients that it's easier for them to sleep after they get their iliac vein stented, and that's my explanation.
[42:07] So if you haven't gotten your iliac vein fixed — this is what I was going for — if you lie down during the day incrementally, like if you have a schedule where every 30 to 60 minutes you lie down with your feet up for 5 minutes, your brain is constantly getting a little bit more blood flow during the day. I think that helps sleep too, because then it's the same phenomenon — you're feeding your brain oxygen all day, so when you go to sleep, it's not something new. The brain is ready. So I tell people that a lot: try to schedule in consistently lying down with your feet up for 5 to 10 minutes every hour throughout the day, so you can continue to get good blood flow to the brain.

[42:52] Dr. Linda Bluestein: That's super interesting. Would you still recommend people do that even if they're taking something like Midodrine?

[42:57] Dr. Alexis Cutchins: I do in this population of patients. Usually my patients on Midodrine started off with a low blood pressure — they're in the 90s systolic up to maybe 120. That's why I don't use Midodrine in patients who come in to see me who are hypertensive; I usually use a beta blocker. The population of patients that does the worst with Midodrine in the supine position is older elderly people who have orthostatic hypotension but also have supine hypotension — a phenomenon that occurs more in elderly patients where every time they lie flat, their blood pressure goes up. We don't really see that phenomenon with POTS patients. It's usually that their blood pressure stays the same lying to standing — it's the heart rate that goes all over the place. So I don't see a huge augmentation of blood pressure on Midodrine going from sitting to lying down or standing to lying down. Not to say it can't happen, and everyone's different — you should probably take your blood pressure a couple of times if you're on Midodrine and you're trying this, just to make sure it doesn't go through the roof when you lie down. But for the most part, people can lie down and it's not a problem.

[44:12] Dr. Linda Bluestein: Okay, great. And do you have a quick couple of travel suggestions for this population of people?

[44:19] Dr. Alexis Cutchins: Yeah. I tell patients when they're traveling, if they can, to try to get IV fluids the day of a flight. I think it's a huge help — it just hydrates you and kind of gets you through that very dehydrating plane ride. Obviously compression, but you have to wear the compression from first thing in the morning, like before you get out of bed. If you just put compression socks on for the flight, you've already lost a lot of the advantage. So if you want to wear compression socks, put them on first thing in the morning — don't put them on just before you get on a plane.
[45:02] There is something called a Firefly device, which is one of these little devices that makes your muscle twitch. You can put it on for plane rides and it helps your muscle move, so you're moving blood flow from your legs to the right side of your heart. It's like shaking your leg or walking — it mimics muscular movement. I think that could be really helpful for plane rides. Also, just getting up and walking around while you're on the plane is obviously really important. Staying well hydrated — bringing your electrolyte drinks and lots of water. Those are my mainstays.
[45:40] As much as you can keep your legs up on the plane is good, though I know that can be hard. And try to prepare in advance — you can hydrate for days in advance before you get on a plane, orally. You just want to make sure you're really consistent, and that you're not going out for a run before you get on the plane, that kind of thing.

[45:58] Dr. Linda Bluestein: Definitely. And let's talk a little bit about specialty evaluations. When should a patient insist on a referral to cardiology or interventional radiology?

[46:09] Dr. Alexis Cutchins: For cardiology, I think most of these patients have symptoms that need to be evaluated by a cardiologist. Even if it's not syncope or lightheadedness — if it's tachycardia, chest pain, or new shortness of breath — all of these things should probably be checked. You should have an EKG, you should have an echo, you should have a Holter monitor, just to make sure there's not some weird rhythm going on. Cardiologists are really good at excluding the bad stuff. Any cardiologist can do this — we like doing tests on people. In this generally young, otherwise-healthy kind of population, it's really probably an easy workup.
[47:02] But if you're referring a patient for evaluation of POTS — they've had a cardiology workup, everything's normal, but they're still passing out all the time — that's a little bit different. You need to find someone who wants to take care of patients with POTS and who has some experience with it. It might not be a cardiologist. It could be a neurologist, an internist, anyone who has an area of expertise in the POTS field is going to be probably more helpful than any random cardiologist.

[47:38] Dr. Linda Bluestein: Right, right, right.

[47:39] Dr. Alexis Cutchins: Unless you're trying to rule things out — any cardiologist can rule stuff out. Most of the patients that come see me have already gotten everything ruled out. Like they've already had 6 echos and stress tests, you name it.

[47:56] Dr. Linda Bluestein: Right.

[47:57] Dr. Alexis Cutchins: For pelvic venous disease, that's a tricky one because there are a lot of reasons for pelvic pain. Patients have endometriosis — there's a huge overlap with endometriosis, PCOS, ovarian cysts, and just dysmenorrhea in general, menorrhagia. Our patients just have pain in their pelvis, and it could be one of many things, or it could be many things at once. They could have endometriosis and pelvic venous disease and PCOS. So what's important is that patients are aware that the endometriosis might not be the only thing. You get that fixed, you're still having pelvic pain — there's probably something else going on. And that's when it's best to be referred to an interventional radiologist or a vascular surgeon who understands pelvic venous disease.
[48:53] Now that's a whole other group of people you have to find, because not all of them believe that this is real, or believe it's treatable, or believe that it has anything to do with your chronic fatigue and your POTS or your chronic migraines that no one's been able to treat. You have to find the right person who does enough of these and understands that disease process and how it relates to everything else you have. I would love for OB-GYNs out there to be a little bit more aware of this etiology of pelvic pain. Those of us who see this all the time and treat these patients are trying to spread the word. But it's hard. I think it's often patient-driven — I think I have this, and then you have to find someone to believe you, which is half the battle, and which can be very hard.

[49:48] Dr. Linda Bluestein: Okay, that's really helpful. And what about the patient who — like you said, so often people are learning these things and thinking, wait, that sounds a lot like me. And a fair bit of the time they're right. If a person thinks they are very likely to have pelvic venous disease but their imaging has been read as normal, what should they do?

[50:15] Dr. Alexis Cutchins: I think what they need to do is find someone who sees or treats patients with this and ask for a second opinion. That can be tricky because those people have very long wait lists and are hard to get in with because they're so in demand. The problem with the imaging is you can repeat it all you want, but if you don't have a radiologist who's going to diagnose your pelvic venous disease from that imaging, then it doesn't matter — because it's there. I've seen patients in my clinic who have had CT abdomen pelvis from 5 years ago, 10 years ago, and I see it on those. It's there; the radiologists just aren't calling it.

Dr. Linda Bluestein: Right.

[50:54] Dr. Alexis Cutchins: So if you believe you have this, you really need to find another person who can look at those images, who understands what pelvic venous disease is and its relationship to whatever other symptoms you're having. And then they can give you that diagnosis and get you in with the right people. It's a matter of finding people who understand this pathology and can read these studies. It's really hard to do.

[51:23] Dr. Linda Bluestein: Definitely. And like you said, the people who are doing these kinds of things generally have long wait lists or are difficult to get into, and/or involve travel or something that people can't afford or aren't well enough to do.

Dr. Alexis Cutchins: Yeah.

[51:38] Dr. Linda Bluestein: Are there certain misdiagnoses or assumptions that you would say delay diagnosis the most when it comes to pelvic venous disease?

[51:49] Dr. Alexis Cutchins: Yeah, one of them is spinal stenosis. I see young patients with sciatic pain or leg pain, pelvic pain, hip pain diagnosed with spinal stenosis or nerve compression. I think that's because they get an MRI, the symptoms are similar, and there is some degenerative disease there because everyone in this population has connective tissue problems and they have less disc space — these patients do have some progressive spinal disease. That's real. But it's not necessarily what's causing their symptoms, even though an orthopedic surgeon or neurosurgeon can look at that and be like, well, this might be it. I'm seeing a little bit of pathology in your spine — maybe that's what's causing your pelvic pain and pain with intercourse and left leg discomfort. And all these symptoms that shouldn't really be attributed to spinal disease get attributed to it, because that's what they see and they don't know anything about the pelvic veins and the pathology there.
[52:57] I think that's a big one that gets misdiagnosed. I've even seen patients go have neurosurgery or spine surgery for their pain, and then their pain doesn't go away. Then we send them for an iliac vein stent, which is so much easier, and all their symptoms resolve. So that's a big red flag for me. I would say if you're 22 and you're being told you need spine surgery, you should hold up for a second.
[53:28] The other one is believing that pelvic pain will go away with a hysterectomy. Endometriosis has been treated, the PCOS is under control, and they say, well, I don't know what else is happening — we might as well just remove your uterus and your pain should go away. And sometimes it does. If they have adenomyosis, or if there's some pathology in the uterus itself, then yeah, sometimes that's what they needed and it helps. But oftentimes the pelvic pain is still there after the uterus is removed. There are a lot of conversations patients have with their doctors to make that decision, and it's perfectly fine to decide that you don't want your uterus — I'm all for it if that's what you want. But if you're someone who maybe does want to have children in the future, or you want to keep your uterus, and it gets removed when it would've been simple to just fix the pelvic venous disease — that's a bummer too. So those are the two that I see that are pretty dramatic, where something else could have been worked up first.

[54:35] Dr. Linda Bluestein: And being able to, if like you said, if you want to keep your uterus — even if you're past childbearing age — can be really, really impactful. When I was looking into not having any more children and was going to have a tubal ligation, one of the doctors I went to was trying to talk me into a hysterectomy. And I was like, but I just want a tubal ligation. And he was like, well, you had painful periods before, so we should probably just do a hysterectomy. I'm thinking, but I think the uterus is kind of helping to hold other things in place.

Dr. Alexis Cutchins: Yeah.

[55:04] Dr. Linda Bluestein: Yeah. So I ended up going to a different surgeon and had the tubal ligation, and gosh, it's been over 20 years since then and I'm really glad I still have my uterus.

[55:16] Dr. Alexis Cutchins: Yeah, I agree. Especially in someone with underlying connective tissue problems — if you're removing an organ, you're also removing the things that go around that organ. You have to take it out of its environment, move other things around to get the organ removed. So yeah, it's not just I'm going to take this away and everything's going to be better necessarily.

[55:38] Dr. Linda Bluestein: When it comes to ordering imaging or these procedures, are there certain phrases in the prior authorization or documentation tips that you feel really help to facilitate the process?

[55:55] Dr. Alexis Cutchins: Yeah, so if a patient has left flank pain, that's useful — that's one of the symptoms of renal vein compression or nutcracker. Hematuria is another one. So those two, if they're present, we really want to work that up with an MRI. We can get the MRI of the abdomen and pelvis covered by insurance for left flank pain and hematuria.

[56:20] Dr. Linda Bluestein: Okay.

[56:20] Dr. Alexis Cutchins: Or for abnormal imaging on something else. So let's say you have a venous study that has any kind of hint of something wrong with it — you can use that abnormal study to then move on to the MRI. MRIs can also be covered for pelvic pain, specifically if they've already had an ultrasound of the pelvis. Most of the patients I see have had an ultrasound of the pelvis to work up their pelvic pain to begin with. It does not have to be a vein ultrasound — you just need a pelvic ultrasound in order to get an MRI covered for pelvic pain.
[56:55] So if you have not had any pelvic ultrasound and you don't have left flank pain or hematuria and you're just dealing with pelvic pain, I usually start with the pelvic venous Doppler. Those are covered for pelvic pain — you just order a pelvic vein Doppler to look for iliac vein compression. I also use unilateral left leg pain and unilateral left leg swelling, which would cover left iliac vein compression or May-Thurner type pathology. And that's covered by insurance as well. So usually you can get an ultrasound covered — those aren't hard. They're simple tests, they're inexpensive, they're not invasive, they're easy to do, and insurance usually covers them. Then if you don't see anything on the pelvic ultrasound, you can get the MRI approved. Usually for pelvic pain it's approved if you've had an ultrasound, but you can also use things like left flank pain, hematuria, et cetera.

[57:53] Dr. Linda Bluestein: That's super helpful. And I was going to ask you — but you already covered a good bit of this — if you had just 15 minutes to teach a clinic protocol for clinicians who might be treating people with POTS and possible venous disease, what steps would you tell them to follow, from the vitals to imaging to orders, et cetera?

[58:15] Dr. Alexis Cutchins: So I usually do orthostatics in the office. I like the NASA lean, the 10-minute NASA lean, but if you don't have time for that, or if it's too hard to train your MA, then you can do lying, sitting, and standing blood pressure and heart rate. I like to give 2 minutes in between each of those measurements if I'm doing them independent of something like a NASA lean. But if you have a change in heart rate of greater than 30 beats per minute in adults going from supine to standing or sitting to standing, and the blood pressure doesn't drop, then that meets criteria for POTS.
[58:48] Then I do a detailed history and physical. On physical exam, I'm looking for hypermobility — I use the Beighton score, although that has flaws, but I use it anyway. I use visualization, so I look for blood pooling in the lower extremities. I have a point-and-shoot thermometer and I take temperature of the lower extremities — they're often different. So I document leg temperature.
[59:19] Then I go through imaging and labs. I do a lot of blood work. I look for iron deficiency, vitamin deficiencies, MCAS markers. I look at thyroid. I look at plasma metanephrins as a screen for pheochromocytoma, to rule that out. I check an AM cortisol just as a screen. Those kinds of labs. I do an EKG — I want to make sure it's normal. If they haven't had an echo or an event monitor or a Holter, I do those. I do the echo for a couple of reasons, but in my hypermobile patients I want to make sure they don't have aortic root enlargement, I want to make sure they don't have mitral valve prolapse, and I also look for patent foramen ovale, which is important in this population because it can result in a lot of symptoms.
[1:00:23] Then I do my whole spiel with the patients. They all have pelvic pain, they all have lower extremity pain, they all have swelling, they all have tightness in their legs. So I order a pelvic vein ultrasound and lower extremity Dopplers. For the lower extremity Dopplers, I'm looking for venous insufficiency — this is not a study for DVT. You have to specify lower extremity venous ultrasound for venous insufficiency on the order; it's a different protocol. The vascular lab has a protocol for DVT and a protocol for venous insufficiency — you want the venous insufficiency protocol.
[1:00:58] If they've already had those and I really want to look further, I'll get the MRV of the abdomen and pelvis. Of note, with the pelvic vein ultrasound, patients really need to be NPO. I try to do it first thing in the morning because I know it's hard for our patients to not be eating and drinking. For the lower extremity Doppler, you really want them to not have had compression on for the day before or the day of the study, and you want them to do it later in the day when they're very well hydrated — so they've been upright for some period of time and they've been drinking fluids all day to make sure those leg veins are plump. That helps with the study.
[1:01:36] I also screen heavily for symptoms of median arcuate ligament syndrome and SMA syndrome, and I image for those regularly. So I'm often doing an ultrasound of the mesenteric arteries to look for MALS and SMAS. But that's kind of how I approach patients from a diagnostic standpoint.

[1:01:55] Dr. Linda Bluestein: That's fabulous. And what symptoms in particular would lead you to do the testing for SMAS or MALS?

[1:02:09] Dr. Alexis Cutchins: Yeah, so MALS is usually pain with eating. You eat something and your stomach hurts — it's instant. It happens with every meal. It happens with fluids, it happens with solids. Any time anything hits your GI tract, you get abdominal pain. The pain can be in the front or the back, but usually it's around your midsection.
[1:02:33] For SMAS, it's usually pain a couple of hours after eating — it takes a little while for it to hit the duodenum and for it to hit that obstruction. So you get generalized periumbilical pain that comes about 2 hours after a meal, and you also have a lot of nausea and vomiting. You don't have to vomit — I have plenty of patients with SMA syndrome who have not been vomiting — but vomiting is also a symptom we see. We don't see the nausea and vomiting as much with median arcuate ligament syndrome, because that's more of a neurologic pain process going on at the celiac artery and the celiac plexus. So that's how you differentiate them.
[1:03:18] People can have both — if you have nutcracker, then SMA syndrome often goes with that because the pathology's in the same location. But I think these are things we're not aware enough of as clinicians. I can't tell you the number of patients I've diagnosed with median arcuate ligament syndrome or SMA syndrome who have seen multiple gastroenterologists before coming to see me, because no one understands why they're having this pain with eating.
[1:03:45] Median arcuate ligament syndrome is interesting because you first start with an ultrasound, looking for increased velocities in the celiac trunk. We do inspiration and expiration during that ultrasound to kind of trigger that increase in velocity. But what really gives us the diagnosis is a celiac plexus block, where we numb the celiac plexus with an interventional radiology procedure. And patients will tell me they can eat for the first time — they ate without pain for the 2 hours after that procedure, literally for the first time in their lives. Then that wears off and they have pain with eating again, but that gives you the information you need to know that it's the celiac plexus causing their pain. You've blocked it, you've numbed it, the pain goes away, and then it comes back once the anesthesia wears off. So it's very useful to get that kind of interventional diagnostic procedure done. And it's amazing for these patients who can have surgery and get relief from that symptom.
[1:04:49] Same with SMA syndrome — it's a little harder to diagnose, but it's amazing for patients who can get relief from either of those. The problem is the surgeries are pretty involved. They're very hard to recover from, it takes time, and you have to find the right surgeon. That's a whole other tricky area of what we do. But it's super meaningful for patients, and it's really meaningful as a provider to be able to give patients that kind of diagnosis.

[1:05:17] Dr. Linda Bluestein: And in terms of SMAS, what imaging study are you ordering there?

[1:05:20] Dr. Alexis Cutchins: You can see the angle of the SMA coming off the aorta during ultrasound if you have good technicians and good sonographers. But usually it's a CT of the abdomen and pelvis where we look for that acute angle to try to diagnose it, along with symptoms. Symptoms are super important — you have to really have a good history.

[1:05:45] Dr. Linda Bluestein: Well, this was so interesting. I know so many people are going to find this super helpful, and you've already given us so many different hacks along the way. But do you have another hypermobility hack for us by any chance?

[1:06:00] Dr. Alexis Cutchins: Oh my gosh. I would say — this isn't a hypermobility hack maybe, but it's kind of a POTS and MCAS hack — which is trying to limit sugar intake and carbohydrate intake. I find patients are so much more symptomatic on a high carb, high sugar diet. But if you can really get your diet clean — no processed foods, lots of protein, lots of non-processed protein, clean ingredients — this is going to change your life. And I know it's so hard for so many of our patients to do because so many people have food intolerances and live off of mac and cheese. I get that. But if there's any way patients can make that kind of intervention on their diet, they're going to see a world of difference in about 4 weeks.

[1:06:49] Dr. Linda Bluestein: I love that. And the hypermobility hack definitely is for any part of the triad, because that's who's listening. So that was really, really helpful. And I'm so grateful to you for coming back on the Bendy Bodies Podcast. Can you tell us where we can find you and learn more about you?

[1:07:12] Dr. Alexis Cutchins: Yep, you can go to cutchinscvm.com. That's my website. My clinical practice is Cutchins Cardiovascular Medicine in New York City. We will be opening finally December 15th — we have a date, it's very exciting. I can be found on Instagram @drcutchins, and if you go to our website, there's really all the information you need about our practice and any other links that you'd want.

[1:07:41] Dr. Linda Bluestein: Well, thank you so much again. I know that you're very busy and obviously this is a crazy time for you getting ready to start this new practice. I'm sure it's very time-consuming. So I'm really, really grateful to you for taking the time to chat with me again.

[1:07:55] Dr. Alexis Cutchins: Well, thanks so much for having me — anytime. I love it. Always happy to be here.

[1:09:04] Dr. Linda Bluestein: Well, that was such a fantastic conversation with Dr. Cutchins, and I'm sure that you picked up lots of different tips. Whether you're a clinician or a patient, I hope that you found that helpful. Thank you so much for listening to this week's episode of the Bendy Bodies Podcast with the Hypermobility MD. I have lots of other resources including my newsletter, the Bendy Bulletin. Check that out on Substack at hypermobilitymd.substack.com.
[1:09:28] You can help us spread the word about connective tissue disorders and related conditions by leaving a review and sharing the podcast. This really helps raise awareness about these complex and underrecognized conditions.
[1:09:39] Did you know that I also offer one-on-one support for both clients and healthcare professionals? Whether you're living with a connective tissue disorder or caring for someone who is, I've got your back. Check out my coaching and mentorship options on the services page of my website at hypermobilitymd.com.
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[1:10:11] As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements shared on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider for your own care. To learn about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiesboutique.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.