When Eye Exams Miss the Real Problem in EDS with Dr. Eric Singman (Ep 180)

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Dr. Eric L. Singman: [00:00:00] I contacted the ear, nose, and throat doctor who was gonna do the surgery, and I said, you know, this patient's hypermobile. I think we should check to see if she has Ehlers Danlos. And he said, well, why would that be important? I'm gonna do the surgery regardless.

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 Ehler Danlos syndromes dedicated to helping you navigate joint hypermobility and live your best life. I'm so excited today to be speaking with Dr. Eric Singman, neuro-ophthalmologist.

As you may know from listening to previous episodes of the show, I have had lots and lots of problems with my eyes, so I'm super excited to be able to talk to someone who is so familiar with EDS dys, [00:01:00] denomi mast cell activation, and all the conditions that can come along with Ehlers-Danlos Syndrome and other connective tissue disorders.

Dr. Singman is a neuro-ophthalmologist who lives at the intersection of the eyes, the brain, and symptoms that so many of our listeners struggle to get taken seriously. He's a professor at the University of Maryland School of Medicine and has spent decades working with patients whose vision problems don't show up on standard eye exams.

Dr. Singman has held leadership roles at Johns Hopkins. Wilmer Eye Institute advise the Department of Defense and Social Security Administration and help shape national guidelines around disability, brain injury, and connective tissue disorders. His work focuses on visual dysfunction after brain injuries, and the visual impacts of Hypermobile Ehlers-Danlos Syndrome, which makes this conversation especially relevant for the bendy bodies community.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. I'm super excited about this conversation because in my clinical [00:02:00] practice I see so many people with convergence problems. Eye pain, visual, snow, and so many other eye related conditions stick around until the very end.

So don't miss any of our special hypermobility hacks. Here we go.

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Okay, well, I am so excited to be here today with Dr. Singman. Thank you so much for joining me today on the Bendy Bodies Podcast. 

Dr. Eric L. Singman: Thank [00:03:00] you for having me. 

Dr. Linda Bluestein: Yes, absolutely. Um, I wanna start out by talking about what a neuro-ophthalmologist is because I would imagine a lot of people are not familiar with that term.

So can you explain exactly what a neuro-ophthalmologist is? 

Dr. Eric L. Singman: Sure. After someone, uh, becomes an ophthalmologist after they go to medical school and then do a residency in ophthalmology, there are a number of different post-residency training opportunities called fellowships. Um, and they, this allows an ophthalmologist to subspecialize neuro-ophthalmology.

Is that subspecialty? It's a year long fellowship in which someone studies intensively about the visual pathways, not just of the eye itself, but of the visual pathway pathways of the brain. So a neuro-ophthalmologist really acts as a liaison, if you will. Between the neurology community and the ophthalmology community.

And the brain is about [00:04:00] 50% vision one way or another. So it lends itself to this sort of specialty. Um, there are not a lot of ophthalmologists in the country there. We number of reasons for that. There are about maybe less than 600 or so. Um, some states don't have one. Um, about 97% of the counties in the United States don't have one.

Um, but uh, what we do is we try to help guide patients. I like to talk of a neuro to speak of neuro-ophthalmology as sort of, and, and for those people who are older, they might recognize as the phone operator, what you used to call the phone operator, the operator, you don't wanna talk to the operator. It was nice.

Very lovely person, I'm sure. But, but you want to say, Hey operator, could you get me here? Or you get me there? Neuro ophthalmologists often aid in getting the patient to the right place. They're supposed to be by helping guide a diagnosis. A perfect example might be [00:05:00] with a neurologic condition that affects the whole body, but often presents with the visual system first.

Multiple sclerosis is classic for this, about 40% syn of patients with multiple sclerosis present for the very first time their, their disease shows itself and manifests itself with the inflammation of the optic nerve called optic neuritis. And so they come to an eye doctor saying, Hey, I can't see. Right.

The eye doctor might be a ophthalmologist, usually isn't that the patient is then sent to a neuro-ophthalmologist. The neuro-ophthalmologist then helps define the optic neuritis, does some testing, recognizes that there may be a diagnosis of multiple sclerosis, and then hooks in into the right specialties, usually neurology in that case.

Another example might be a patient who comes in with peripheral vision loss. They're sent to ophthalmologist. The neuro ophthalmologist recognizes that this might be from a pituitary tumor. The neuro ophthalmologist does the appropriate tests, confirms the diagnosis, and sends them [00:06:00] onto a neurosurgeon, for example.

And there are other examples like this, Lyme disease, um, rheumatoid arthritis, sarcoid disease, a myasthenia gravis. There's a whole list of conditions that neuro ophthalmologists often are the kind of the, the second or frontline for, and help the patient get to where they need to go. 

Dr. Linda Bluestein: Okay. And today we're going to be talking about your specialty neuro-ophthalmology as it pertains to EDS HSD, um, and comorbidities like dysautonomia and mast cell activation syndrome.

How did you get interested in EDS um, in the first place? 

Dr. Eric L. Singman: It found me, it found me, um, when I was working as a ophthalmologist at Johns Hopkins and I had. Founded the, um, vision after brain injury clinic for Johns Hopkins, Wilmore Eye Institute. There was some patients who just didn't seem to be doing as well, [00:07:00] and one of them turned out to have Chiari Malformation and on further questioning, they turned out to have, they were hypermobile.

And so I, another patient turned out to have Ehlers Danlos and so I started asking my patients about that. I started making, one of my official questions that I asked my new patients are your, are you hypermobile? And by the time we finished, by the time I came over to University of Maryland, I was recruited there.

After 10 years of being at Hopkins, we had found 55 0 patients who did not know they were Ehlers Danlos patients. And they and I, I did not make that diagnosis. I started to suspect it. I always said them to geneticists to confirm, and the geneticist confirmed these patients had hypermobile Ehlers, Danlos or some other variant, like classic Ehlers Danlos.

And [00:08:00] so I just started to wanna learn more about this condition. And as I did, patients were a wonderful resource helping me learn about this condition. Uh, we ended up surveying, uh, the members of the Ehlers Danlos Society got back 5,000 responses to our survey about their experience with eye surgery.

We also found that sure enough, we had a, did a case series that s dealing with patients don't seem to do as well after traumatic brain injury. Their symptoms seem to last longer and not get as full recovery. Um, we ended up finding other things like. There was some information in the, in the, in the me in the medical literature that were untrue.

For example, there was, at Johns Hopkins decades ago, there was a family of Ehlers Danlos who also had another condition, and they had this retinal finding called angio streaks. And I looked at all my Ehlers Danlos [00:09:00] patients. By that time we had hundreds. They, they just came because they, they wanted to be seen, they wanted to talk and, and none of them had angio streaks.

So we actually published this and then, um, the Moorefield Clinic in Britain with very famous world renowned eye clinic then came with a second paper saying, yeah, we looked also, thanks to you. We looked also, we didn't find any either. So it turned out that this, if you look all the medical literature about what s Danlos patients have, there was even a mnemonic made called Pepsi.

For those patients with angio and streaks and they would have Paget's disease of bone, Ehlers-Danlos Syndrome, sickle cell disease and pseudo umum. And turns out that the E in Pepsi didn't belong there or may not belong there and so ruined the mnemonic, unfortunately. But you know, so we, but, but we learned a lot, at least the hypermobile type.

And we looked back at the literature and all the people [00:10:00] who, who looked at an Android streaks and published that Ehlers Danlos patients have it never looked at Ehlers Danlos patients. They just published it as a matter of fact in their article, because, you know, you have to give references and they all published that one reference.

So when I look back at that one reference, one reference in Johns Hopkins, it was a family who also had pseudo masum. And so it was, they didn't, it was, it was not true. So, but this is how, you know, once something's in the literature, it, it seems to last at any. So that's the kind of, that's how it fell into my lap.

And um, then just after a while I started meeting people in the Elders Danlos community who were very prominent, like Claire Frank Amano and such. And we became, we developed relationships and became friends. And so I started seeing more patients like, so in a sense it just kind of fell on me. I didn't pursue it.

Dr. Linda Bluestein: Yeah. I think that hap that's how it happens for most of us. Your, your story I think is, is quite, [00:11:00] uh, quite similar to a lot of people's, so, okay. What kind of symptoms make you think, this is not just an eye problem, but this is a brain eye connection issue? 

Dr. Eric L. Singman: So, neuro ophthalmologists are sent two kinds of patients.

One is, I don't know what this is. They're complaining about something either with their vision or related to their eye. I'm sending it to neuro ophthalmology. Maybe they can figure it out. The other kind of patient is. I know what this is. I'm a busy cornea specialist who sees 50 patients Today. I don't have time to deal with MRIs, CAT scans, and blood tests.

I'm sending 'em to neurology. So that's the two kind of patients we get When it comes to real stereotypic neuro-ophthalmology, the patient usually either doesn't see much and neither does the doctor. [00:12:00] So the you, the the eye doctor looks in the eye and says, Mrs. Jones, your eye looks fine. I can't explain why you're having reduced vision or accentuated vision, or glare sensitivity, or you're seeing things or you're having pain in and around your eyes.

Sorry, it's not my specialty. Wanna just see this person here and see what happens? That's usually the common story. 

Dr. Linda Bluestein: So an EDS patient should see a neuro-ophthalmologist rather than a ophthalmologist or optometrist. If they, well, maybe they should see those people first, sometimes to rule out some other kind of problem.

Or when should an EDS patient see a neuro-ophthalmologist? 

Dr. Eric L. Singman: Almost never. I love them when they come. They're wonderful people, but I feel bad because many of them are sent to me from wonderful, caring providers that, Hey, you have a pair of eyes and you have EDS, [00:13:00] you better get your eyes checked. And unfortunately, it's, or fortunately, it's, it's really not blank that the, the, the, the fact about EDS is that depending on the type of EDS, there are pretty stereotypical problems they're gonna get, which usually could be handled.

For example, if they have brittle cornea syndrome, well, they need to see a cornea specialist. They don't need to see an ophthalmologist. If they have concussion symptoms and someone does a wheel deal, that that's something I often see. If they have migraines, they usually would be best with a neurologist.

Now, I do some migraine work. True. Uh, but I but complex migraine patients, I often send to neurology. Basically what I've actually put my own cell phone number on the EDS Society's website [00:14:00] because a lot of patients wanted to come from far to see me. Well, you know, EDS and you're EDS literate. And I said to them, first of all, thank you.

I, I'd like to think of myself as such, but there are way more literate people than me, I'm sure. But what I tell them is, why don't you call me first and see if there's something I can do to try to help. And I don't charge for that. I'm on the phone frequently during the week. Simply because I wanna save someone the trouble of coming in.

Now there are times I can, I think I can help a patient with EDS developed new onset double vision. Now that could be a medical emergency. And so I usually tell patients if it's some new clear neuro ophthalmic problem, they've lost vision, they have double vision, they lost peripheral vision. Get that checked out immediately.

It could be emergency locally once the dust [00:15:00] is settled. If there's questions, we can certainly approach them. Other kinds of patients who just wanna say, well, I want to go to eye exam by someone who's ed, who's EDS literate, I tell them, you know something. The bottom line is what we found in EDS patients is they get pretty much the same eye problems as everyone else.

Some they get more often, but it's, but ultimately it comes down to a final common pathway. So they get, they may get more keratoconus, which is a, a, a laxity of the ocular, the corneal tissues causing astigmatism. They may get it more often, or they be, they may, they might be more often very nearsighted, and they get problems with being very, very nearsighted.

They may have more often retinal detachments or retinal tears. Well, those patients need an eye doctor, but they usually need a retinal doctor because they have retinal detachments or retinal tears. Those patients with keratoconus need a cornea doctor. Now, in fairness, sometimes [00:16:00] nobody's told them that or nobody's diagnosed that, you know, so that's something that, you know, we might help with, but ultimately we want the patient to see the right eye doctor for their particular ophthalm condition.

And usually that's, that, that, that's in my experience for the, for the hundreds of EDS patients who come to see me. Um, I would say the majority of them didn't have a particular neuro ophthalmic problem, at least not one that we could help. Some of them are very, were sent to me because other doctors who kind of thrown their hands up and I understand.

A classic example is glare sensitivity. A lot of ES patients notice that just glare is very uncomfortable, perhaps more uncomfortable than other people might be experiencing it. Fortunately, we don't know how to measure glare objectively, and we don't know how to treat glare sensitivity. Some, and I, and I encourage patients to try whatever they [00:17:00] want.

Now there are some schlock, um, snake oil people out there using all sorts of different things. I won't mention stuff, but they have to be careful about that. But. Unfortunately we don't know how to deal with that. Another example is visual snow. I happen to have visual snow. I was born with visual snow and it's just something I've lived with.

I thought it was normal for me until I found that it wasn't. But the reality is, is visual snow I wish we could help patients with. Now, if someone develops visual, no new onset, that could be a different problem. That's something we might wanna look into. Um, if someone has change, any kind of change that's new onset where the eye exam is not obviously showing why.

That's often something that is sent to a neuro-ophthalmologist, whether it's double vision, peripheral vision changes, color vision changes, et cetera. Um, that's something that often is sent to us. EDS patients [00:18:00] often also have other problems that they send to ophthalmologist pretty frequently, so EDS patients seem to have Chiari Malformation more often.

That can be associated with elevated brain pressure. And we're often sent those patients to look for swollen optic nerves. Now, in fairness, most decent eye doctors can determine if an optic nerve is swollen or not, but a lot of eye doctors don't wanna be the one who's the final arbiter of that. Now I understand that 'cause sometimes it can be subtle.

A lot of times though, it's pretty obvious, EDS patients also have other problems that people unfortunately don't think of when someone has SLOs syndrome, you have to, and this is, and, and this is what the, the patients want when someone who's EDS literate is they want someone who includes their differential diagnosis.

Some of the extra things EDS patients might get more often there's still bread and butter medicine things they might often. So, perfect example. Uh, an EDS patient [00:19:00] I had recently went for chiropractic manipulation. The chiropractor did rapid manipulation of the neck and the patient developed a vertebral artery dissection.

Now, that is a documented concern with rapid neck manipulation. It may be more common in EDS patients simply because EDS patients are more fragile and their blood vessels therefore more fragile too. So that was someone who was sent to me. Uh, another patient, for example, was a patient who was having very bad headaches, and they sent the patient to me saying, Hey, Eric, could you check for papilledema because maybe it's elevated brain pressure.

Well, it turned out that the EDS patient, unfortunately, a very intelligent man, very good historian, people weren't completely listening to him. And doctors see patients pretty frequently and they have to kind of [00:20:00] get through. And so you don't, so I. I I, when I work with residents, I tell them we're, we're, we're trying to avoid veterinary ophthalmology, so let's talk to the patient.

And when you talk to the patient, we found out that his headaches are much worse being upright and much better being supine. Well, that's exactly the opposite of elevated brain pressure headaches. That's the kind of headache you get with A CSF leak. And it turned out, and the, there's E SF EDS patients are more prone to spontaneous CSF leaks, and it turned out he had a CSF leak.

He did very, very well. After they patched the leak, he went to one of the specialty centers, I think it was, these was either was Duke or it was Hopkins. They have some special, and there are some other places that are really good at CSF league treatment. There's another one in, in California, world renowned specialist.

Um. But you know, [00:21:00] sometimes it's a matter of just asking the right questions now, and now you might say, well, Eric, shouldn't anyone have asked those questions anyway? And, and the answer is probably yes. But you know, if it's a field that's not, you know, we all have our little niches and we, we tend to be experts in our niches.

And so I don't blame anyone for not asking some of these questions. I just, you know, and the fact that they sent them to me because they worried about elevated brain pressure showed that they had some information and some background. So that was impressive. So, but, but, and some of these can be tricky.

Dr. Linda Bluestein: Yeah. And I've had my share of eye problems, fortunately not vi uh, visual snow, so that, so that's good. Um, but I've had very, uh, significant dry eye. I have bilateral punctal plugs, I have hypermobile EDS, and I've had plenty of problems like light sensitivity, um, eye pain. I can feel every little eyelash that gets in my eye.

My husband teases me because he doesn't. He doesn't ever [00:22:00] feel anything it seems like, and I'm constantly looking in the mirror. And then usually I can find something, you know, if it's an acute onset of pain in my eye, but blepharitis, conjunct, um, when, whatever it's called, when you have like in inflammation, infection related to like the eyelids.

And I've had that, I've had a lot, I've had a corneal ulcer. Um, I've had a lot of different problems with my eyes. I don't know how many of them are related to EDS or like you said, they are more traditional eye problems that people with EDS are at higher risk for. And then a regular ophthalmologist though can, can treat them.

I guess I'm really curious, you know, in terms of some of these things that might occur more, more commonly, can an eye doctor who doesn't know a lot about EDS still manage those problems or, you know, it seems like a lot of my patients are struggling to get help with their, with their eyes. 

Dr. Eric L. Singman: Yeah, well in your particular case, dry eye, that that's a huge problem.

It's, first of all, it's more common in women. It's more common in women [00:23:00] as they approach the perimenopausal period, for example. Um, and it also is more common in patients with mast cell. 

Dr. Linda Bluestein: Mm. 

Dr. Eric L. Singman: And EDS patients have more mast cell. Right? 

Dr. Linda Bluestein: Right. 

Dr. Eric L. Singman: Um, when I have EDS patients with dry eye, um, I like to try topical, um, chromo and sodium for them because they often are itchy eyes too.

They notice their eyes are often itchy. And I like to try that because that, I mean, most eye drops, they're mostly water or some carrier vehicle, which lubricates the eye, but they have an active chemical. And the active m gly choline sodium and ta of chromium sodium is a mast cell degranulation inhibitor.

And so I like to see if those help. I, I take a very stepwise approach to dry eye, but, uh, and I'm very careful about it because my fear is. My fear is that because [00:24:00] EDS patients are often very sensitive to medications, whether that's the mass cell or something else, you have to really kind of tread lightly, uh, because you don't want the side effects to be as bad as the, as the disease, 

Dr. Linda Bluestein: right?

Right. 

Dr. Eric L. Singman: So I usually start with preservative free artificial tears, just to see how that goes. Um, I usually make sure there's good lid hygiene, um, and I usually try to, uh, help with then, you know, probo, sodium, et cetera, and, and then I can step up to things like cyclosporine or seizure or these other occasions I like, um, punal plugs, but I only like to see them put in after the tear film is made healthier.

Because, um, pumped the, the, the, the tear film and dry eye is pretty much a witch's brew of inflammatory products. And so if you don't clean up the tear film and make it healthier first by putting in the pump to plugs to increase tear film volume and prevent drainage of the tear film into the nasal system, all [00:25:00] you're basically doing is bathing the eye in, in that, in that inflammatory brew.

Um, so that's why I use this. That's why plugs are important, but they're a little later in the game for me personally and for my patients. But then in the same way, um, if a EDS patient has dry eye, I refer 'em to dry eye clinic. The most dry eye clinics are pretty good with this, especially ophthalmologists who specialize in dry eye.

When I was at Hopkins as an apec, she was, she was, she was world renowned dry eye specialist. Um, and she also took this, this approach where she was looking to see, she didn't wanna make things where she wanted to make things better. Um, and so she was careful about what medicine she might apply. Um, but that's a perfect example of someone who's good at dry eye.

Chances are they can handle the dry eye EDS patients and, you know, new, new therapies of a dry eye are coming out all the time because it's a real problem. What I'm excited about is [00:26:00] seeing, um, whether hormone therapies are gonna be helpful for that. We know that dry is more common in women. We know that dry is more common in the, in the perimenopause area.

We know that there are tremendous number of estrogen receptors in the, um, in the, in the lacrimal system. So we know that hormone therapy is gonna have to be a area of research and it, it is actually an area of research, an exciting one of that. Um, so that's, that's where I think something new is gonna come.

I think that the next breakthrough Dry is probably gonna be in that sector. 

Dr. Linda Bluestein: And I really appreciate what you just said about dry eye. 'cause I feel like it's one of those things that is probably underappreciated if you don't have it. I feel like eyes are very easy to take for granted until you have problems with them.

And all of a sudden now it's like this, you know, all of a sudden you realize how important they are. [00:27:00] Um, and dry eye is something that is so common and I feel like it's easy to just, oh, well you have dry eye. It's not a, you know, not a big deal. But it can be a really big deal for, for a lot of people. 

Dr. Eric L. Singman: It is a really big deal and it's get, it's starting to get the recognition it deserves.

Um, and if you look at the research in dry eye, it's been exponential. And that's reassuring. I love seeing that some of the new medications have come out, um, that, that are willing to push the envelope. In terms of what therapies they use, they're probably the last five years, four or five novel therapies of different mechanisms.

Action, which is exciting. So I think that's gonna continue to grow and it's because enough people have said, you know something you shouldn't have to know. Your eyes are there, you should be able to just the way you don't know your handle. Right. Right. You know, EDS patients have enough pain. When I do a review of systems on EDS patients, I tell them, I used [00:28:00] to say, you know what hurts?

And I used to have a list of things 40 miles long. I just now ask what doesn't hurt and it's much quicker to know that way. 

Dr. Linda Bluestein: It sounds like you really have seen a lot of EDS patients if you've changed the way you asked that question. Yes. That is very, very accurate for, for so many people that so, so, so true.

What about more unusual treatments for dry eye, like PRP? Is that something that you've ever prescribed or, um, know anything about? 

Dr. Eric L. Singman: I don't. I send them to, I, I I send them, you know, whether it's for serum tears or PRP where these new, these novel therapies. I, I, I, I'm a neuro-ophthalmologist. I don't wanna step on toes and I don't want to get into an area that's not my specialty.

So I, I, I, it, it's, it's my habiting custom send them to Dry Eye Clinic, who knows what didn't, what they're doing. A lot of people say they're dry eye clinics. You gotta be careful. 

Dr. Linda Bluestein: I honestly didn't even know there was such a thing as dry eye clinics. So that's really interesting. And it's, and it's bleo conjunctivitis that I had.

And can you [00:29:00] expand before we take a break? Can you just expand a little bit on lid hygiene? 'cause I feel like that's something we are gonna get into neuro-ophthalmology more in the second half, but I, but I feel like some of these basic things can probably help a tremendous number of people. 

Dr. Eric L. Singman: So lid hygiene is keeping, it, it, it's a, it's a twofold process.

It's keeping bad things away from your face and eyelids. And it's, it's, it's, it's, it's getting rid of bad things from your face and eyes that might already be there. The basic lid hygiene for, uh, Joe run of the mill who has a little bit of, I, you know, we call it scarf, just debris at their eyelashes. We wake up with stuffer is when they take their daily shower, daily ablutions.

They might take some baby shampoo on a washcloth, close their eyes, just scrub that gunk away from their eyelids, keeping that gunk away from their eyes because that gunk is food. It's food for demodex mites, which live in many people's eyelids. And if you ever [00:30:00] see a high microscope, they're frightening as all get out.

But I 

Dr. Linda Bluestein: saw one for the first time yesterday and I freaked out. It's 

Dr. Eric L. Singman: horrible. It's horrible. And they look awful, horrible. It's just like, it's horrible. Pa parasitology is, I, I, when I, when I did parasitology in medical school, I lost about nine pounds 'cause I was refusing to eat anything. Yeah. I was. 

Dr. Linda Bluestein: Or 

Dr. Eric L. Singman: drink.

Um. So, so, and, and, and, and so also to we, you know, so that's just basic cleaning of the area. Obviously there are things that we love patients to stay away from, like cigarette smoke or smoke from any cause fires, um, chemicals, if they work with chemicals, you know, chemical vapors. All of these things are just not gonna be good for your eye and your conjunctiva.

So avoidance of that is valuable. Many people have service jobs where they do a lot of reading on computers and such. We know that that lowers the blink [00:31:00] rate. And the blink rate is what keeps your eye moisturizing clean. I have a feeling that some of the reason we're seeing a lot more dry blepharitis is simply because people are having indoor desk jobs rather than outdoor jobs.

That's, that's, that's one thing for sure. Um, another thing though is that hey, you know, there are some illnesses that are going to make the tear film less healthy. Rosacea is the classic one. That's what someone looks like they've been drinking, even though they haven't. 'cause they have red nose and red cheeks.

Uh, certain medications, many medications, actually anticholinergic stuff cause dry eye. I mean, the list of medications that cause dry eye is humongous and a lot of EDS folks are on medications of many types. Mm-hmm. Um, there, there are certain things that someone could do to try to help their eye depending on what we they find.

So if, if they have, for example, [00:32:00] um, tea tree oil wipes have been very, have been popularized and have helped a lot of people, especially they killed demodex, for example. They killed it. The, the parasite. And it's amazing when they, when people use that and kill the demodex, how many patients with rosacea, the rosacea seems to go away, suggesting that maybe the demodex was helping stimulate the rosacea, whether it was an immune problem or, or not, we're not sure.

Um, sot three wipes have been shown to be valuable, keeping the eyes moist with artificial tears. If someone has mast cell, that's gonna also cause uh, inflammatory response in the tear film. And so maybe, um, if they have bad mast cell systemically, the oral gastro chrome, if, if it's just topically nasal, nasal chromal sodium or topical chromosome in their eyes.

So there's a lot that we try to do to keep bad stuff away and keep, get rid of bad stuff that's already there. Keep things healthy, some things we can't change. [00:33:00] Um. If a woman is going through menopause and she has fluctuations in her hormones, that can be much more difficult to change. Now if she's put on hormone replacement therapy, there have been studies suggesting that that can be valuable for more than just hot flashes and things like that that might be valuable for protecting from bone loss, for example, osteoporosis that might be valuable for dry eye.

So that's something that's a consideration. There are some patients who take hormones, exogenously for other reasons, even if they're not going through a change of life. There are people, let's say, who want to transition for their, their phenotype, even though they, let's say they have a particular genotype of male or female, they want to transition to a, a genotype that's the opposite of male, female, or male.

And oftentimes that requires a hormonal intervention. That hormonal intervention oftentimes, unfortunately, has been shown to be associated with side effects. When it's testosterone, for example, that there are problems with other, [00:34:00] it can cause other problems I've had, you know, besides neuro problems, like elevated brain pressure, uh, but also can cause dry eye and other problems.

So, so we have to try to look at the whole picture, the whole patient, the dry eye picture. It's a hard picture, obviously, if somebody, um, has certain, uh, uh, uh, a morning routine using, let's say a woman or, or, or someone uses makeups, certain makeups might be allergenic and there might be a place to avoid those, especially makeups that come very close to the eye lead margin.

Those makeups might be allogenic. Um, some might be protective. You know, um, if you look at pictures for thousands of years in, in Egypt, people use something called coal. Not, not coal as in, you know, charcoal, but coal. KOHL, they've been used, they were using those, has antiseptic properties. Mm. So, so there may be things that are good to put on the eyes to protect them.

Uh, but they may, but, but [00:35:00] unfortunately a lot of things put near or at the eye can be pretty bad for the eyes. 

Dr. Linda Bluestein: So there's some people that can get away with not doing these hygiene things for the eyelids 'cause they're not prone to having demodex. But there's other people that, that have to do these things because they have dry eye and they're prone to these problems.

Is that, is that correct? 

Dr. Eric L. Singman: Right. And then, then, you know, and people, a lot of people, probably the majority of the people have demodex, many of them are asymptomatic. Uh, but you know, even though it's horrifying and nobody wants it in their body, um, but those people where they have stubborn BLE conjunctivitis or blepharitis, it certainly is reasonable to consider approaching that issue.

Dr. Linda Bluestein: Great. Uh, we are going to take a quick break and when we come back we are going to talk about, uh, problems with double vision convergence, et cetera, and get more into the neuro-ophthalmology, uh, side of things that affects people with EDS. We will take a quick break and we'll be right [00:36:00] back.

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Dr. Eric L. Singman: into a cozy new year.

Dr. Linda Bluestein: Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again and 

Dr. Eric L. Singman: enjoy the rest of the episode.

Dr. Linda Bluestein: Okay. We are back with Dr. Singman and talking about neuro-ophthalmology and also we were just talking about some common op eye problems in EDS that are not maybe neuro-ophthalmology related. But I appreciate you letting me pick your brain, um, about some of these things that, uh, you know, I think so many people experience and they're often treated like they're not that big of a deal, but they can really impact your day-to-day life.

So thank you so much for all those tips and, um, things that you've given us. [00:38:00] Can you explain about things like double vision, um, convergence, eye alignment, um, are some of these things more common in people with EDS? And you've already mentioned keary malformation. Uh, are these things more common in people with connective tissue disorders?

And if so, what are some of the reasons besides keary malformation? And of course we should explain that keary malformation is when the foramen magnum that, or the bottom of the skull, um, the brain is kind of sagging through that, that hole. Um, and the brainstem is affected in the visual centers because they're in the back of the brain, or the most important ones.

So can you explain to us why these problems might be more common in people with EDS if they are? 

Dr. Eric L. Singman: As far as Chiari per se, my gut feeling about Chiari is that because the, all the tissues in the brain are lax. It just seems more likely for things to settle because of gravity. Um, but, but it, you know, we, I'm not sure we know a hundred percent why Chira is more commonly as patients.

We do know that when someone does have Chiari Malformation, [00:39:00] they're more prone to having things like convergence spasm, where they, where their eyes can spas ontically cross, and they can also have more pro dabbing nystagmus where their eyes jiggled. And when that happens, then the world can jiggle, that's called ossio.

Mm. Other kind of problems with EDS patients, EDS patients, and there may be a chicken and an egg issue here, but EDS patients tend to have a tremendous amount of fatigue. So when I go for my review of systems through an EVS patient, I ask a couple of questions. I, I, I can't think of the last time I haven't gotten told Yes.

So I ask them, do you have brain fog or some sort of slowing? Do you feel cognitively you've been affected? Always, uh, invariably I'm gonna get yes, I feel like I'm just not as sharp, um, especially after a trauma or something like that. In addition, uh, I ask you fatigue, and the answer invariably is yes. And there are a couple of reasons for fatigue too.

Um, when you hurt [00:40:00] everywhere, it's hard to fall asleep. Okay? So if you don't get good sleep, you can't, you're not gonna be, you're not gonna have good energy. That's one. Also, EDS hurts, I mean, a lot, and that takes up a lot of bandwidth. And so I, I I, I, my gut feeling is that if EDS patients could magically feel no more pain whatsoever, especially in the neck, because the neck seems to be the, it's gonna sound funny, I say this to my patients, they laugh at me, but it's the Achilles heel of EDS patients in their neck, 

Dr. Linda Bluestein: right?

Dr. Eric L. Singman: If they can feel no pain, imagine what they could do instead of think having their brain constantly being. Interrupted by, Hey, it hurts. Hey it hurts. They could focus on other things. Pain takes a bandwidth and that's exhausting 'cause they still have to go through their regular day. So EDS patients have a lot of good reasons where they're gonna have a lot of fatigue.

But when someone's fatigued than anything you need to do is harder. You know, if I, you're fatigued and I actually [00:41:00] lift a 10 pound weight versus you are feeling great, that weights you. You both can lift the weight, but the endurance of how many times you can do it, it's gonna be less than a fatigue person.

Mm-hmm. Convergence, which is bringing the eyes together for knee work, they cross naturally. When you look at the thing that, that process takes a lot of work and initiating it and maintaining it is important because, as I said, more and more people are, are. Have employment where they have to look at things closer than 20 feet.

If you look at anything closer than 20 feet, your eyes have to cross some, okay. That's called convergence. And if they're insufficient to that, they have convergence insufficiency, then it's a problem. Now, I'm sent a bunch of patients saying, Eric, they got convergence insufficiency and that's why they can't read.

And they, and, and many of these patients have gone to people who say they do vision therapy and spend a lot of money and a lot of time with that. And [00:42:00] they come to me and I, I had three patients yesterday with EDS come to my clinic, Midtown, Maryland yesterday. New patients and every one of 'em had the same complaint.

They were having trouble reading and they were told it was their eyes. Now it might very well be their eyes, but when I explain to them, I say, reading is like a chain. It's like, it's a tool, it's a chain. It's job is to connect you with knowledge. So imagine a chain made of links connected to a big box called Knowledge, and you want that box, so you pull that chain towards you.

Eventually you'll get that box of knowledge. Now, supposing that chain has a broken link, well, you don't know that. Let's say it's in a dark room, you can't tell it. So you pull that chain until you come to the first broken link. That first broken link might be you need glasses for reading, might be you can't converge.

Well, and you fix that link and then you keep pulling and you may find a secondary broken link, which might be [00:43:00] cognitive issues that prevent you from having executive functions, allowing you to remember what you're reading. So the problem with reading, because it is a chain made of different steps, you have to fix the first steps you find until you get to the next steps.

The reason I give you that analogy is because. Many of the patients come to me being told they have a broken link somewhere in that chain. And they were told that link has been identified. When it was identified incorrectly. I'll give you an example. Patient came to me, yes. They say, I wanna come here. I want you to gimme exercises so I can converge better, so I could read again.

I said, well, why don't you think you could read? Well, my physical therapist told me I can't read because I have this and how they measure that. And they showed me how to measure, and they measured it by having someone look at someone's fingers that came to their face. Well, that's not how you measure conversion.

That's how you measure accommodation and convergence at the same time, [00:44:00] accommodation is focusing your lens. And so it ended up, they measure nothing. If you measure two things, you're measuring nothing. So I said, why don't we do a little trick? I put on a patch on their eye, or I covered one eye of their glasses, one lens with a glass.

I said, please read for. They were reading and they said, this is terrible. I can't read like this. Now I made sure I, I covered the non-dominant eye. I checked for which eye is dominant. I cover that to make sure I'm not giving a Meghan heart. And I say, well, let me ask you this. Is this how you feel when you try to read?

They say, yes, it is. See, I have convergence division. I say, well, isn't convergence insufficiency when your brain can't make your two eyes work together? And they say, yes. I say, well, I covered one eye. Your brain. I relieved your brain of the need to work together, so how come you're still having a problem?

Then they look at me and they get, oh, and that's a simple test that anyone could do in their office. Before you send someone for convergence problems, why don't you make sure you know, [00:45:00] or before you tell patient before, and I had patients come in, she had weeks and weeks of vision therapy, I won't say with whom charging hundreds and hundreds of dollars to make her eyes work together as a team.

Yet when you cover one eye, the things were just as bad. So it could, maybe there was a teaming issue, but it certainly couldn't have been the only issue because if you prevent eye teaming and reading is just as bad, it's not an eye teaming issue. So this is the kind of thing that happens. Now, do do patients with EDS get more convergence de efficiency?

I find they do probably because they're so fatigued and if I can't fix the fatigue, I probably can't fix the convergence de efficiency. So what I tell those folks to do is to read in smaller bits, frequent small bits rather than marathon sessions, little sprints rather than long marathons. That's sometimes the best we can do if they really have bad converge efficiency, of course, I'll [00:46:00] provide exercises and such.

I also sometimes say, look, there's nothing wrong as a stop gap with covering your non-dominant eye so you can get through the day. It's not gonna make you have a lazy eye or anything like that. That doesn't happen if you're past six or seven years old of age. Now that being said, I still want to help the patient find out why they can't read.

Even though I, you know, I feel a responsibility, even if I show it's not a convergence problem, I still wanna help 'em figure out what's going on. Oftentimes it might be a problem where they have abnormal pursuits. We can see that with Kiara as well. But it often isn't that A lot of the times you'd be surprised how simple it is.

A lot of times it's an executive or cognitive problem where the EDS just is not letting them do their job. Unfortunately, it can happen. The other problem I get though is ergonomics. When all of us were taught to read as children. Were taught to read on those good cardboard books that we used to get little kids, you know, the golden [00:47:00] key books.

And we would sit down and hold the book in our lap and we would read and turn the pages and enjoy the books. That's horrible for EDS patients because that's putting a strain on their neck. The last thing you ever wanna do with EVS patients do anything mean to the neck. So the first thing I ask my patients when they come in and they're having trouble reading, is, please tell me about the ergonomics of your reading situation.

If they have a computer and the computer's not at eye level, the first thing I do is say, please put it on eye level. And oftentimes they have it at high level. 'cause EDS patients are pretty sharp. Okay? They've been, they, they, they, they know a lot. They've, they, they know often more about their illness than many doctors know about their illness.

I get that. But the ones who might not have explored that, you get a really big bang for the buck for some of these things. Sometimes we can't find why the reading is a problem. But at the very [00:48:00] least, you know, as a physician, I take a Hippocratic Oath, do no harm. Mm-hmm. And that includes do no harm to the pocketbook.

So at least the EDS patients who come into me saying, well, my doctor wants me to have 18 more weeks of vision therapy for my convergence, I can tell 'em, Elise, you know, you could take, save the money. You know, give a little of charity and save the money for something else that you'd like instead. Because how could it be helping if your one eye reads just as bad as with two eyes open?

That kind of, so those are some of the things we, we see now, Frank double vision. We can see with EDS too, I've seen that with certain problems. Um, especially when they have elevated brain pressure. Elevated brain pressure not only can cause papilledema, it can cause a cranial neuropathy of any cranial nerve.

I had a EDS patient who someone actually didn't know they had EDS. They came in to see me with new onset pap edema with intracranial hypertension, elevated fluid pressure in the brain, and they came in with a Bell's Palsy [00:49:00] and they did a workup before they sold me for Lyme disease and herpetic disease and stuff.

But in fact, it was no one looked at the back of her eye. They sent it to me and they sent it to me actually, just because, um, one of the tools that I have is an ophthalmologist are these external lid weights, so that can prescribe for a patient. Now, anyone could prescribed they're, they're made by a company called Med Dev Een, DV, they're called Blinkies, B-B-L-I-N-K hyphen EC.

They're external lid weights that go on with a double stick tape, and they can help the eye close. When a person who can't close their eye helps them close their eye. They're very simple. They're not expensive. I prescribe them all the time. I have a fitting kit in my bag. Uh, in the meantime, I examined them a full exam, and I found they had swollen optic nerves.

It's called pap edema, and I spoke to them and. Turns out that they had elevated brain pressure called intracranial hypertension. Um, and it's presented, it presented actually with the Bell's Palsy. We lowered the brain pressure [00:50:00] successfully medically. Um, and then I started to ask this patient questions, and the, the reason I started to ask her some questions was I looked at her age and her age said she was like in her forties, but she looked like she was in her twenties.

And it's become a habit of mine when I see a patient who looks much younger than their stated age to ask them if they're hypermobile because it seems to be very common with s Danlos patients that they simply look younger than they are. And, you know, she appreciated the co. She thought I was just being nice.

Um, but I, she said, well, that's an ICY. Well, I said, so I did a biting score on her right in the clinic, and she said, yeah, I've always had double joint. I've always been double jointed. I mean, she could bring her thumb to her wrist. She could put a pinky so far back. Um, she, in fact, she, she was, she, it turned out she was also at one point a gymnast, uh, because she was so flexible, you know, had many SS patients.

Yes, I was a gymnast, a cheerleader, [00:51:00] martial arts, a dancer, something like that. And so she said, yeah. And so I started asking more questions, and it turns out that she had a history of uterine prolapse, which you can see with Ehlers-Danlos. And, and she had even a, a rectal prolapse. She had a history of hernias.

She just thought she was unlucky. And she said, yeah, my mom always had that too. I got that from my mom. And so I spoke to her about Ehlers Danlos, and sure enough, ultimately we diagnosed her with Ehlers Danlos. In part because she looked so young, but also because she had, because she had neuro ophthalmic problems that we see with other people.

You know what we see with Ellas Danlos too? Um, Ehlers Danlos folks have a funny way of having elevated brain pressure and that when they have high brain pressure, they sometimes blow a hole out. And they have a, they, they go from a spinal leak to elevated pressure to spinal leak. And so the spinal leak actually normalize the pressure, but then it builds back up.[00:52:00] 

So they go through this fluctuation of high pressure, low pressure, high pressure, low pressure. I was sent a patient, uh, uh, the rehab hospital I work for, uh, they have developed a spontaneous, um, CSF leak from their nose. And they would send me the pressure 'cause the doctor said, you know, Eric, check for pap edema because I wanna know if she's one of those cycling patients.

Now, the patient did not have pap edema, um, but the patient did have a spontaneous CSF leak. I asked about s Danlos, the patient never heard of the condition before, but sure enough, the patient was hypermobile and I contacted the ear, nose, and throat doctor who was gonna do the surgery. And I said, you know, this patient's hypermobile, I think we should check to see if she has s Danlos.

And he said, well, why would that be important? I'm gonna do the surgery regardless. I said, well, it's important for a couple of reasons in my experience. One is they tend to be more sensitive to medications, including anesthetics and just, just in my [00:53:00] experience, and maybe it's limited, maybe it's anecdotal, but also, um, they tend to heal less well.

They tend to heal slower. And so at the very least, if they do have s Danlos, you wanna give them a, a reasonable informed consent that you know, if something goes wrong, you're actually protecting yourself. By recognizing they have s Danlos, you're not just helping them. He agreed and we had the patient checked and, and he, you know, and he did give the patient very good informed consent saying, you know, just again, we found with eye surgery they get the same problems just maybe more often.

So he just assumed that they, he just gave all the different ear, nose and throat problems, uh, uh, repair of CSF leak might have. He was just more careful about it. It turns out she ended up having SLO syndrome. So that, so the one thing I've learned about with SLO syndrome from the study we did from, um, surveying thousands of patients who had eye surgery [00:54:00] was that, as I said, they seemed to have the same complications that anyone else, they don't have unusual, unique complications.

They just seem to happen maybe more often. And so that's why it's important to maybe be extra careful listing all the complications a person could have with a, with to an dealing patient just to protect them and yourself as a physician. 

Dr. Linda Bluestein: I wrote down a whole bunch of notes as you were talking to, I wanna follow up on number number one, pap edema.

Is that something that if, if there's high pressure in the brain, will you see pap edema right away, or is that a late sign? Like can you, I guess, can you have high pressure in the brain without having pap edema? 

Dr. Eric L. Singman: Yes, and you can have it chronically. That's called pseudotumor cere syne, SINE Pap edema. It's Latin for without pap edema.

I have a, uh, in fact, um, I had a whole series of patients when I was in private practice in Lancaster, Pennsylvania of pseudo CE without pap edema, and I had to [00:55:00] actually work hard to make people believe this was even possible. Eventually I got validated when I sent a bunch of patients down to see Mike Williams, who at the time he's a big neurologist and specialized in C cerebral spinal fluid hydrodynamics.

And he was at Johns Hopkins running their CSF clinic. And he published a paper of, um, 10 patients who had, uh, pseudo ceria without papilledema, and he confirmed it using indwelling lumbar catheter. It's like having a lumbar puncture, but it stays in place. And of the 10 patients full mind. And so, you know, he actually sent me a, a copy of the article that came out handwritten.

Thanks so much for your help with these very, very, um, pleasant person. But the bottom line is you can have sus to acere without Palo edema. Now [00:56:00] if pap edema is gonna happen. It happens, it could happen pretty quickly. We're talking over certainly, you know, weeks if not days. The funny thing about pap edema is all, a lot of it can go away within weeks, also perhaps days, but certainly weeks.

But in some patients, it can take months to totally go away. One of the problems with that situation is if I see a patient who I never met before and they're sent to me and they have swollen optic nerves, I don't know what their normal baseline looks like. 

Dr. Linda Bluestein: Sure. 

Dr. Eric L. Singman: So once the nerves come down, I have to go.

I I, I make it a point to go through a number of different evaluations to confirm and prove to myself as well as to them that we're at their baseline. Even if the nerves look a little bit still elevated, I get a sonogram of the nerves. I might get a visual of a potential to see if the nerves are unhealthy.

I would, I might get a fluorescein angiogram of the nerve, which is we inject the dye in the hand and the. It's a safe diet. It's a vegetable diet. It glows [00:57:00] green. We take a picture of the back of the eye to see if the nerve leaks. So there I go through a lot to make sure before I tell a patient your pap edema is gone.

I go through a lot and I see them despite that se with serial OC pictures of the nerve called an OCT to make sure things are stable. Visual fields, once I'm comfortable that they've been stable for maybe a year, then I can tell they go back to their regular doctor or they can go down to our step down neuro-ophthalmologist care, um, or who's a wonderful optometrist, uh, who I, who I'm working with to try to, um, give some, gimme some breathing room because I, I'm actually booked out for months for new patients.

One of the reasons I gave my phone number on the website actually is a patient actually has to see me and there's a real problem. I, I'll find a way of getting them in if it's an urgent situation. Um. But that's an example of, you know, of pap edema. It can be very tricky. 'cause there are things that can make things look like pap [00:58:00] edema that aren't, such as something called optic nerve had drusen.

The, these are things, the little concretions of the nerve that can make a nerve look swollen, but the nerve must fine. 

Dr. Linda Bluestein: Wow. So, uh, first of all, I wanna say that is incredibly generous that you have your phone number on the website. That's, that's amazing. That's so generous that you do that and that you get people in if they really need to see you.

Um, I'm so glad that you clarified about the pap edema because I know so many people who have signs and symptoms consistent with elevated intracranial pressure, but they go to an ophthalmologist and because there's no pap edema, they say you can't have elevated intracranial pressure because there's no pap edema.

So you just clarified that point. It's sad. 

Dr. Eric L. Singman: Yeah, it's sad. And, and just as a, just as an aside, um, uh, it's important to recognize that even if they don't have elevated brain pressure on a spinal tap, they could still have elevated brain pressure. Every patient's different. The one of the things Dr. Williams shows that there are things called B waves.

The CSF pressure fluctuates widely [00:59:00] throughout the day. So the way I tell, so let's say a patient gets a normal number on a spinal tap. Oh, you can't have it. See? No. If a patient has bad headaches and you do a spinal tap and it relieves their headaches, and then the headaches slowly come back, as the C SF pressure builds back up because you likely drained off some CSF, they have elevated brain pressure for, I don't care what the number is, they have elevated brain pressure because nobody works.

Nobody volunteers for a spinal tap unless it makes them feel better. 

Dr. Linda Bluestein: No, that's, that's super interesting. And then, um, also, I did wanna just make a quick side note about yes, people with EDS definitely in my experience, also more sensitive to medications. Totally agree. I don't know if you've experienced this or not, but there's also this phenomenon with hypermobile EDS and HSD of local anesthetic resistance.

So they tend to be less responsive to local anesthetics. They may need more, they may [01:00:00] need a different local anesthetic like Mepivacaine or Arcanine. They might need more frequent dosing, they might need a longer onset time, et cetera. Um, so I just wanted, wanted to put that out. And then the other question that I had was, um, yes, so many of us spend so much time looking at a computer and I definitely have noticed if I, like I'm on the computer way more than I would like to be.

And at the end of the day, yeah, I think it, you know, can cause your, kind of, your eyes to hurt your head to hurt it. Is it a good idea for us to step away from the computer? I mean, I imagine that it is and look off in the distance, like step away from the computer and not just go looking at a phone. 'cause that's like, right, that's, that's not gonna help us.

But are there certain habits that we should try to get into that would help with that? 

Dr. Eric L. Singman: Yeah, there, there's something called the 20 20 20 rule, which is every 20 minutes for you, take a 22nd break and look at least 20 feet away. I think that rule is kind of, it's a cute name, it's a cute rule. I'm sure for most regular people it's probably okay.[01:01:00] 

Um, I like my EDS patients. I tell 'em, look, you gotta get some fresh air and sunshine. Um, I, I tell all my patients that, frankly, you know, uh, I, you gotta get out there. Well, I tell that to my EDS patients for two reasons. One is EDS patients, especially younger patients, probably have a higher risk of becoming high myopes.

And there's pretty good data to suggest that you need fresh air and sunshine to slow down that myopic progression. Um, and that looking at screens all day is gonna, is gonna make things worse. But yeah, I tell, you know, being in front of screens all day is not good for you. Um, we're forced to do it. Our, our service industry is such, even medicines like that nowadays, you know, I, I mean, I type all my own notes and all the notes are electronic and.

You know, I, I, I spend, I might spend three hours going over my residence notes in a, an evening, you know, we have tons of unpaid computer [01:02:00] time. 

Dr. Linda Bluestein: Yeah. 

Dr. Eric L. Singman: But I agree with you. You know, you know, that's why using the phone if, if using screens for work, if you have to have to, but using it for entertainment, I would urge people to avoid that.

Um, or if they have to use it for entertainment, do something that's with a screen is much further away than your hand or, or your desktop. 

Dr. Linda Bluestein: Yeah. And your point about getting outside, I think is, it's so easy nowadays for us to become, you know, so many of us work from home, so, you know, and, and we end up, you know, I was literally just talking to somebody about this the other day.

It's like, it gets harder and harder to actually get out of the house. I'm so glad you mentioned that, because I think that's something that can be psychologically beneficial as well as, um, you know, just so many benefits being out in nature. You know, then we're looking off, you know, more in a distance and everything.

So, yeah, thank you for, for mentioning that. And I, and I also wanted to ask while we're, uh, you know, before I ask the next question, and, and I'm [01:03:00] cognizant of the time, we're gonna have to wrap up before too long, which, uh, we might have to do a part two 'cause there were so many of the other things I still wanted to ask about.

Um, you mentioned about charlatans and about, you know, uh, people being talked into getting, you know, uh, you know, 18 sessions of vision therapy or more, whatever. Um, how can people best reduce their chances of being taken advantage of in that way? Because I feel like EDS now has become like a, like a gold rush and, you know, lots of people are putting it on their website and they're saying, oh, I, you know, I'm sure that some people say, oh, I have vision therapy for EDS patients, or whatever it might be.

Um, how do people best make sure that they're not missing out on an opportunity that could help them to benefit, but at the same time they're not wasting their money? 

Dr. Eric L. Singman: First thing is that if somebody's offering some sort of. Therapeutic benefit I would tell a patient because my, again, my, my, my EDS patients to, to invariably are very bright people and very aware people.[01:04:00] 

I would say go onto pubmed.gov and look at the research in that area and see if it's find, you know, find a Cochran, um, review or find some review or research to see whether or not the therapy being offered has a sufficiently large scientific background to make it real. Or is it something dumb. The other thing is I would, patients have to be willing to ask, um, other providers for their opinion, not in the same field.

So let's say, you know, if, if someone says, I'm, I'm a wellness doctor and I'm gonna do all this wellness stuff for you, well that's fine. But if, but you know, if the doctor says, I'm gonna do all this wellness stuff for you, but I'm the only one who can do it, and you have to buy your stuff from me, and it's expensive.

And you have to start wondering, you know, is it true that you have a monopoly and or is it, or [01:05:00] is it, you know, I, I'm always, I'm always concerned that the person who tells me I need something is the person who's gonna get financial benefit from that need. Which is why, uh, you know, I'm very hesitant when I go to a mechanic for my car.

I know nothing about cars, but I'm very hesitant. Well, when I go to a dentist, no offense to dentist, I mean, I, I've done this with friends of mine. I'm very hesitant because you tell me I need this, but the, so what's gonna happen if I don't do that? So the, the, the second question to ask is, what's gonna happen if you don't take the therapy that the person's providing?

Is it gonna kill you? Is it gonna make your life miserable? Are you gonna get worse? Things like that. And sometimes it's, you know, it's a matter of, of trust. If you know the only provider for a particular service is in, in your town, you live in a small town, it can be hard because that's the only reference you have.

But there are other references. There are places. One of the things I [01:06:00] I, I, I admire about the EDS community is that they're very, really excellent at social networking and social media. And so if you throw a question out there for X, Y, Z, you're bound to get some pro and con opinions of something and you can ask those pros and cons what they think and why.

And so you can get more of a balanced, um, balanced thought process or thought processes of people who've been there. And that could be real handy for people too. 

Dr. Linda Bluestein: Yeah. Because I feel like, uh, there's a lot of people now that are after the. The pocketbook of people with EDS and, and a lot of people with EDS are on disability or other, other things.

And so they're, you know, they have really limited funds and yet they can, you know, be talked into doing things that maybe are not beneficial. 

Dr. Eric L. Singman: Perfect example, I I, I, I apologize because a perfect example is I buy my glasses online [01:07:00] and I'm a minus three myop. So I'm, I'm somewhat nearsighted and I buy single vision glasses.

I don't buy any of those fancy coatings or anything, and my glasses cost me nine bucks. And patients come to me and say, I spent $300 for my glasses. And I said, why? Well, the doctor prescribe his glasses. And he said, I could buy them right here in his shop. And they were $300. And so that's a perfect example of, you know, wait a second.

And what do these glasses have in them? Well, they have a special tin for this. They have a special coating, they have a special, you know, micro prism in them that does all these different things. I'm saying to myself, you know, uh, it makes me kind of feel, gee, I wish, you know, I wish you would've talked to me first.

Um, my, and I'm probably gonna get shot for this. My, my practice has an optical shop, university of Maryland. As an optical shop, I'm, I'm not gonna lie, you [01:08:00] know, if a patient says, you know, I can, I have my pupillary distance, which is the one measurement that you need. If you're gonna get glasses online, I measure it and give it to them.

I don't steer them away from the optical shop. If they sort of pair of frames they love, go enjoy. But if they say, doc, you know, I like your glasses. Where'd you get 'em? And I tell them where I got 'em, one of the online sites, and they said, well, how do I do that? Well, you need your prescription. Well, I have my prescription.

Well, you also need your pupilary distance. I'll measure it and give it to them. It's like, like I said, do no harm. That includes the, the pocket book. Anyway, I apologize. I interrupted, but I just, that was just one example. I don't think opticians are Charlene's, but I do think the glasses are marked up so much by thousands percentages that, that, that it's starting to, it, it can make someone uncomfortable.

Dr. Linda Bluestein: Yeah. I got my glasses at Costco recently and, uh, so not online, but they were, I'm sure a fraction of what I would've paid otherwise, and I'm very, very happy with them. So I, [01:09:00] I think finding these places. I'm a, a 

Dr. Eric L. Singman: Costco member myself. 

Dr. Linda Bluestein: Oh, are you? I love Costco. Yeah. They did a, they did a feature May of 24, I believe it was, I don't think it was May of 25 about EDS.

I was, I was interviewed and so were some other people about EDS. And so I was very happy that they did that because I 

Dr. Eric L. Singman: got you in their magazine. I saw it in the magazine. 

Dr. Linda Bluestein: You saw it in the magazine. Okay, cool. 

Dr. Eric L. Singman: I saw it. Yeah, 

Dr. Linda Bluestein: I saw it. Yeah. Amazing. Okay, so, uh, before we wrap up, I guess I would love to know if there's other things that we should be aware of when it comes to conditions of dysautonomia, like pots, postural, orthostatic tachycardia syndrome, um, as that pertains to vision and also if there's anything that you, we talked about mast cell activation syndrome a little bit in the beginning, but if there's anything related to mast cell activation syndrome, cervical instability.

I know this is like a massive question, but if there's anything that you're like, oh yeah, we should probably mention X, Y, Z or inflammation or, or something like that. Um. Like I said, we're probably gonna have to come back and do a, a second part if you're, if you're willing. [01:10:00] But, uh, yeah, if you have some, some parting suggestions before we, uh, before we wrap up 

Dr. Eric L. Singman: pots.

The big thing about POTS that, that I deal with is that in many of the things with EDS, the visual system is a bystander and it's an innocent bystander that gets affected it's collateral damage. So the pots doesn't specifically damage the visual system, but when someone has, um, you know, a sudden drop in blood pressure and that to their brain, then one of the things they're gonna recognize often is that they're gonna have less blood flow to their occipital cortex.

And they may notice that the world gets dark and kind of cones in, or they may notice, uh, when they recover, they may notice sort of visual symptoms and phenomenon. Um, so that's nothing we can, that's nothing I can do about, um. Perfect example of, you know, being the ophthalmologist. A patient came into me who didn't know [01:11:00] they had pots, and they described those symptoms and I said, I'm wondering if you have pots.

And we sent them for that. It turns out they did have pots. They have, they knew they had EDS, they didn't know they had pots, they wasn't on their radar. But it turned out they did have pots and it was their visual changes that gave us a hint that it was pots. So that's just an example. So, and most of the other things too, like, you know, the, the mast cell, the collateral damage might be dry eye.

Um, uh, so that's something so that we try to help with, uh, some of the other things like CCI, the instability, the, i, I guess that's big. The most important take home message I can even think of when it comes to EDS patients, and I've seen it time again, is that I almost feel like my hands are tied If an EDS patient's neck is in bad, bad.

Because when an EDS patient's neck gets better, I've seen it time and [01:12:00] time and time again that everything else seems to fall into place. It's almost magical. It's like I had an EDS patient whose neck got better. I forget what I, I don't know if they either surgery. No, actually no. It was a patient who said, you know, I, I suggested it was a patient that said, just for the heck of it, I, I, I want you to try wearing a brace.

Just see what happens. And they wore a brace and they were telling me they love the brace. I said, okay, now just understand the brace is not the cure. The brace is like a temporizing measure. But the fact that the BRACE helped suggested that they could experience that kind of help if there were interventions that were more permanent.

But, but, but, but, but that reminded me how when the neck is less bad, not even cured, is when the neck has improved. So many other things with EDS seem to fall into place. The reading improved, the headaches improved, [01:13:00] the brain fog improved. The pots might have improved. It. It's just crazy. And that's why I say that the neck is the achilles heel of EDS patients.

And so when they come to me after traumatic brain injury or whatever they come to me for and they say, doc, I feel like crap. I mean, vision's like this and my, my reading's terrible. I say many times. I, I, I basically, I basically, the best I can sometimes do is hold their hand and say, is, let's what, what have, what have we done so far to try to get the neck better?

Because by getting the neck better, I got a feeling I'm gonna, we are gonna have more without me, you're gonna have more success. You don't need me for the success you're gonna have. You need the neck doctrine make you feel better. Unfortunately. Sometimes I feel like if it's because the visual system is suffering collateral damage from the neck, there's nothing the eye doctor's gonna do except refer them to a good neck person.

And unfortunately those can be hard to find. 

Dr. Linda Bluestein: It's so great that you have such vast knowledge, clearly of such vast knowledge about EDS and the [01:14:00] comorbidities and, um, I Are you willing to do a second part so we can address a, some of the questions that we didn't get to? 

Dr. Eric L. Singman: Sure. I think we could find time for that, although, um, I got a feeling, you know, we, we covered a lot, uh, um, if, if, if, if there are particular questions.

Um, that you have, or a series of them, I'd be happy to, you know, add them and if you wanna post them on your website, if that would make it easy for you too. 

Dr. Linda Bluestein: Sure, sure. We could look to do something like that. So what I, the reason I wanted to ask it now is because if someone's listening to this and they think, oh my gosh, I wish she had asked x, it could have been something that was on my list.

Um, so, uh, if you're listening right now and you're like, oh man, I really had this pressing question, you can send it to me. Send it to bendy bodies podcast.com, Dr. Sigmund and I will figure out whether we're, we'll figure out some way that we can get more questions answered, I guess is the bottom line.

This has been such a great conversation. Do you have a hypermobility hack for us? 

Dr. Eric L. Singman: Don't hit your head please. [01:15:00] 

Dr. Linda Bluestein: Yeah, we didn't really talk about concussion. Yeah, 

Dr. Eric L. Singman: no, no. Contact sports, please. No contact Sports Swim. Yes. Anything else? Be careful. 

Dr. Linda Bluestein: Sounds good. Um, where can people learn more about you? 

Dr. Eric L. Singman: I have a lot of articles published in on PubMed, um, and I have some of the articles about EDS and, and so that's a good place to start.

Dr. Linda Bluestein: Wonderful. And you're obviously on the EDS Society website, um, and we'll, we can include that, that link. So I'm so grateful to you for taking the time to chat with me today. I know that you're extremely busy and I really appreciate you sharing so much knowledge and wisdom with, with me and with the Bendy Bodies listeners.

Dr. Eric L. Singman: Thank you.

Dr. Linda Bluestein: Well, I really enjoyed that conversation with Dr. Singman, and I hope that you did as well. The field of neuro-ophthalmology is so interesting, and he of course also generously shared with US general ophthalmology information as well [01:16:00] for people with EDS pots and mast cell activation syndrome. Thank you so much for listening to this week's episode of the Bendy Bodies Podcast.

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