In Episode #47, Dr. Jill Carnahan interviews Dr. Susan Sklar on Burning Mouth Syndrome and some of the underlying hidden causes such as hormone imbalance and histamine issues.
More Reading: Hormone Imbalance Can Mess with Your Mood
DHEA 25mg – https://www.drjillhealth.com/product/dhea-25mg-dr-jill-90-caps/
Pregnenolone 30mg – https://www.drjillhealth.com/product/pregnenolone-30-mg-60-caps/
Hist Assist – https://www.drjillhealth.com/product/hist-assist-120-caps/
Dr. Susan Sklar Link: https://www.sklarcenter.com
Dr. Jill Carnahan is Your Functional Medicine Expert® dually board certified in Family Medicine for ten years and in Integrative Holistic Medicine since 2015. She is the Medical Director of Flatiron Functional Medicine, a widely sought-after practice with a broad range of clinical services including functional medical protocols, nutritional consultations, chiropractic therapy, naturopathic medicine, acupuncture, and massage therapy. As a survivor of breast cancer, Crohn’s disease, and toxic mold illness she brings a unique perspective to treating patients in the midst of complex and chronic illness. Her clinic specializes in searching for the underlying triggers that contribute to illness through cutting-edge lab testing and tailoring the intervention to specific needs.
Featured in Shape Magazine, Parade, Forbes, MindBodyGreen, First for Women, Townsend Newsletter, and The Huffington Post as well as seen on NBC News and Health segments with Joan Lunden, Dr. Jill is a media must-have. Her YouTube channel and podcast features live interviews with the healthcare world’s most respected names.
A popular inspirational speaker and prolific writer, she shares her knowledge of hope, health, and healing live on stage and through newsletters, articles, books, and social media posts! People relate to Dr. Jill’s science-backed opinions delivered with authenticity, love and humor. She is known for inspiring her audience to thrive even in the midst of difficulties.
Dr. Jill 00:12
Hey! Hello, everyone! Good afternoon. We are live with Dr. Susan Sklar. I am so excited to be here with her. We've got a topic that you either have never heard of or that you're dying to know more [about]—because you know no one is talking about answers—and that's burning mouth syndrome. So stay still there, hold your thoughts. We're coming back with that. Before I do, I want to do a little housekeeping.
Dr. Jill 00:39
You probably know by now that we're live most Tuesdays and Fridays. You can catch all of the videos on our YouTube channel, which is just under my name, Jill Carnahan. It's all free content. Go there if you've missed anything. This will be there in about a few days—maybe a week—live, and you can watch that. You can share it with friends who may have this syndrome. Especially on this topic, I really encourage you to share this, especially if you know someone who's suffering from burning mouth syndrome, because, as Dr. Sklar and I talked [about] right before we came on, this is such a needed topic. And there are not a lot of experts that are able to talk about it from the perspective of the root cause. We will get into all of that. Also, if you want to look up other blogs and things, my website is JillCarnahan.com, and you can find products and other things at Dr. JillHealth.com.
Dr. Jill 01:30
Okay, I want to introduce Dr. Sklar, and then we will let her jump right in. Dr. Susan Sklar has been an active physician in Southern California for the past 35 years. She finished her training as an OB-GYN, or obstetrician and gynecologist, specializing in women's health at the Beth Israel Hospital—a Harvard teaching affiliate in Boston, Massachusetts—in 1981. Then she moved to Southern California. I bet the climate's a little better there.
Dr. Susan Sklar 01:57
Dr. Jill 01:58
She delivered babies there for the gynecological needs of her patients until 1989, when she limited her practice to gynecology and began a long career specializing in the care of midlife women. After many years of caring for women in the important areas of hormones and hormone imbalance, she saw a need and a lack of service in an important area of sexual function problems. She developed a specialty practice in the treatment of female sexual function problems. She did clinical research on this important subject and served as a reviewer for the Journal of Sexual Medicine.
Dr. Jill 02:28
It's such a needed topic because a lot of doctors, especially middle-aged women, are not addressing this. This kind of set you up for the foundation of the next step because you gained perspective in the fields of restorative/anti-aging and functional medicine. These are all interlined.
Dr. Jill 02:43
Her clinic, actually, is the Sklar Center for Restorative Medicine, and we will include her website as well. Basically, this type of medicine recognizes the biochemical changes and hormonal decline that cause humans to age in ways that are not necessary or inevitable. So there is hope for all of us. Replacement and balancing of these natural substances result in improved vitality and a longer, healthier lifespan. I could not agree more, and I am just absolutely so happy to have you here, Susan. We've seen the journey as far as your credentials, but how did your personal journey manifest into where you are now?
Dr. Susan Sklar 03:30
Yes, so it's really interesting. I feel my life has been on a path, and there have been various threads that have entered, and it's just all culminated right now, right here. Like you said, I started out as an obstetrician-gynecologist and had two children. I realized that delivering babies and being gone two to three days at a time if I was on call was not compatible with being the kind of mother I wanted to be. So at that point, I stopped delivering babies. My hours became more regular, and I could get to my children's sports and games and participate in their lives more because, at that point, they were like preadolescents. I thought: “If I wait five years, they're going to be in college. So either I do it now or I don't do it.”
Dr. Susan Sklar 04:22
By getting into doing only gynecology, I really was able to focus on midlife women and all of their health issues, [including] cardiovascular, osteoporosis, and eventually sexual health. I remember one day that a woman said to me: “I'm not having orgasms, and I don't think I ever have.” I didn't know what to tell her, and I said to myself: “This is never going to happen again. I am going to learn what I need to learn.” I mean, it's sad [that] even though I went through an OBGYN residency, sexual function was not addressed. So I went on a quest, and I spent time with mentors—some of the famous people around the country—on women's sexual health and made that a part of my gynecology practice.
Dr. Susan Sklar 05:12
Each step of the way, I learned more about hormones, neurology, anatomy, and all the things that relate to our health. I was almost close to retirement age. I was almost 60. I got completely burned out seeing 30 patients a day and insurance companies guiding my life, and I was like: “I can't do this anymore.” So I was trying to figure out what else to do. I don't know anything else to do besides medicine, because I never wanted to do anything besides medicine. It's my passion. I love it. I mean, I have hobbies, but not something else professionally. So I kind of pivoted.
Dr. Susan Sklar 05:56
We have a foster son, and our foster son designs furniture. He was designing furniture for a woman who was doing anti-aging medicine, and he said: “This woman is doing something with hormones, and I think maybe you might be interested.” She became my mentor. She told me about going to A4M and getting credentialed and [about] Cenegenics back in the day. I got training there and got my start on anti-aging medicine. At the same time, I was having my own health issues. I was going through menopause problems and had colitis, osteoarthritis, psoriasis, and all these things. And I was not getting answers. So it all came together for me personally. In a way, I could translate to patients. Functional medicine is a lot more than hormones. I had to learn about GI health. And it's like you go to medical school.
Dr. Jill 07:00
You go back to biochemistry, right? You're like, “Oh, I actually need to know this!”
Dr. Susan Sklar 07:05
Yes! I know. On my first A4M, I was like, “Oh, those steroid pathways, I really do need to” [inaudible]. You're right. So that's exactly what happened. I've been practicing functional medicine, and one of my early patients in the anti-aging was a woman who was a physical trainer. She was very aware of her body composition, her muscle mass, her definition, and all of that. She wrote a nice little review of me that we posted on my website with her hormone restoration. She said: “My energy is so much better. My muscle definition is better. And my burning tongue is not nearly as bad.” And I was like: “What? What is that?” Then other people, because they saw that on my website, started getting in touch with me. That's how I got into burning mouth syndrome.
Dr. Susan Sklar 08:01
And then we've been in the study group with Dr. Bredesen, learning about hormones and nerve function. I was like, “Why would a hormone program make pain better? Being on estrogen, progesterone, DHEA, and pregnenolone—what does that have to do with nerves and pain? So I did a lot of reading in neuro-psycho-endocrine-immunology literature, reading brain research reviews and things about what progesterone does and what estrogen does.
Dr. Susan Sklar 08:32
And of course, it all really became important working with patients with cognitive decline because all of the same hormones and neurosteroids are in play. So I feel like all these different threads have really come together for me. Burning mouth syndrome is the culmination of all of that, as well as learning a lot more about pain and pain pathways. We dealt with pelvic pain in gynecology, which usually came down to musculoskeletal pelvic floor endometriosis. We dealt with vulvodynia, which is another very puzzling pain disorder. But burning mouth [syndrome], I think, is one of the most enigmatic for all practitioners.
Dr. Jill 09:20
I love your journey, and I love how it's woven together. And isn't it funny?—the things that we don't necessarily expect in these twists and turns, like children and then, “Okay, I'm going to switch this way.” And then we have this view… I want to just say this for people listening because sometimes you're in the middle of a transition. And most of us are right now, for some reason or another, because last year has been quite different than any other. So if you're in the middle and you're confused, feeling lost, not sure, or wondering why this happened, just know that your story isn't over yet. The end, the last chapter, has yet to be written. And I get excited about that because I look back and I'm amazed at how breast cancer, Crohn's disease, mold illness, and my move to Colorado were hard at the time, and now I'm like: “They were the best gifts ever. I would never be the physician with the heart that I have today without those things.” So I love your journey, Dr. Sklar.
Dr. Jill 10:12
The other thing I want to mention is that you hit on something: We have allopathic training, both you and I, in very good schools. We were trained in the best in the world in those centers, and we lacked some very important knowledge. We have our foundation in this allopathic medicine. I have no apologies because, right now, it's still the best medicine in the world. But what's happened is that we've been able to expand our toolboxes. What we both realized is that when we came to tough questions in the clinic, we didn't have all the answers.
Dr. Jill 10:44
The difference between you and me and a physician who may not know this information, I think, is that we ask the questions—”Well, I wonder what else” or “Why?”—either “What else is possible?” or “Why?” And I'm no more intelligent or better than anyone else, but I do ask why a lot, and you do too. I love that because you had this case, and instead of just brushing it aside, you went deep and got information. And today, I know that information is going to touch a lot of lives because this is a big deal and people aren't always talking about it or aren't always able to find a physician who has experience.
Dr. Jill 11:18
So let's dive in. Let's talk first about: What is burning mouth syndrome? This is actually a clinical diagnosis. How would that present? And then we'll dive into some of the underlying causes.
Dr. Susan Sklar 11:29
Great. Yes. That's a wonderful way to line it up. Well, there's something in the Journal of Oral & Facial Pain that I quote a lot. It says, “Practitioners dread seeing a patient with oral facial pain and a mucosal cavity,” meaning in the mouth. And why?
Dr. Jill 11:48
And that's a fancy way of saying burning mouth syndrome, right?
Dr. Susan Sklar 11:51
Burning mouth syndrome. That's right. Why do practitioners dread seeing patients with that? Because they feel like they don't know what to do about it. As practitioners, our whole lives are involved with getting people better. When we can't get people better, it's hard to see them. We feel inadequate. Plus, we feel bad for the patient who's in pain. So what burning mouth syndrome is: It's a pain condition in the mouth, often starting in the tongue, but can also travel to the cheeks—I've had people tell me their gums—up into their nasal passages down into their trachea into their breathing tube that is involved with a burning pain. The official definition is that it needs to be present for two hours a day for at least three months—that's one of the official definitions—in the absence of anything else that you could diagnose that might be causing that pain.
Dr. Susan Sklar 12:54
It feels like you've drunk a liquid that's too hot—you know that scalded feeling you get?—only [that] it doesn't go away. The pain can be really intense. It destroys people's lives. I've had people say things to me like: ” I went through breast cancer treatment, I had surgery and radiation, and it was nothing compared to this burning mouth syndrome.” I want to talk about the psychological aspects of it first. And there are some definite physiologic connections between pain and depression. There are some root causes that bring those two together.
Dr. Susan Sklar 13:31
But what happens [is that] anybody with chronic pain tends to get isolated. Eating is such a social thing to do. We've seen with the pandemic what happens when we can't socialize at restaurants and over food. We miss a lot of socializing. And that's what happens to people with burning mouth [syndrome] because they never know: “Am I going to be able to eat? Am I not going to be able to eat? I don't want to be with people and not be able to.” And then people wonder what's happening. So people get isolated. A lot of people are made to feel like they're crazy because everything looks totally normal. I had one patient tell me [that] her doctor told her that she had a singular delusional disorder, meaning that she was focused on one thing, and it was a delusion.
Dr. Jill 14:22
Dr. Susan Sklar 14:24
Really. The lack of knowledge of the medical profession gets put back on the patient as: It's not me and my inadequacy or lack of knowledge in general; it's you, you're nuts. And 90% or more of the people who have burning mouth syndrome are perimenopausal and menopausal women. At this point in history, we very much want to address equality in medicine and healthcare delivery. Women get written off very easily. So when a doctor, unfortunately, or dentist, or any kind of practitioner, is confronted with someone who's telling them that having this pain is destroying their lives, there's no imaging, there's no lab test, and there's nothing diagnostic that you can see in the person's mouth. It gets put back on the patient: “They must be crazy.”
Dr. Susan Sklar 15:24
And there are articles in the literature. There was one article that said it was due to television “moans,” meaning women were watching too many soap operas and getting all involved in the drama of the soap opera; it was amplifying their pain. This is not psychogenic. This is not imagined. I can tell you that the more that I'm reading and the more that I read about chronic pain in general, [the more] it's really important to understand: What's the difference between chronic pain and acute pain?—because we're good at handling acute pain. You break your arm. It hurts like crazy. You get it set. You get some narcotics, and it immediately relieves the pain. Everything goes back to normal, and your arm starts working again. Great. Chronic pain doesn't do that. It starts to set up its own pathways in the spinal cord in the brain, and it perpetuates itself even when the original injury is no longer present.
Dr. Jill 16:26
It's almost like the old wagon wheels on the West. There are places you can drive in Wyoming and Montana where wagon wheels made these huge crevices in the rock, and they're from 100 years ago. The wheels created this pathway that's still there today.
Dr. Susan Sklar 16:45
Exactly. So what happens is that these chronic pain pathways become well-worn pathways in the spinal cord and the brain. Certainly, one of the things that is helpful for anyone with any kind of chronic pain is that there are a number of ways to lay down new pathways. There are a number of different techniques, from journaling to meditation. And I won't go into that a lot, but you do want to lay down new pathways.
Dr. Susan Sklar 17:19
But one of the things that has been really important for me to learn and transmit to patients is that a lack of dopamine is definitely involved in chronic pain. A lack of dopamine will give you depression, [causing you to] not want to initiate things as well as amplifying your pain pathways. Burning mouth [syndrome] is very associated with stress, depression, and anxiety. It's not that they cause it, but the same underlying root cause is causing both the pain and the emotional parts of it. So we need to address that. There are various ways of doing it. There are some supplements that will help you make more dopamine, like L-tyrosine and Mucuna, that can help with those pain pathways.
Dr. Susan Sklar 18:09
The other thing is that when you injure your thumb, there's a nerve that goes from your thumb and goes to your spinal cord, and it goes up to your brain. When it gets to your brain, it doesn't just go to the place where your thumb is represented in your brain. It goes to the frontal part of your brain, which is [responsible for] your judgment, thinking, and executive [functions]. It then goes to the limbic part of your brain, which is your fear and emotional center. Those are descending pathways. And then it goes up to the representation in your brain of where your thumb is to register that this is a pain. So acknowledging and feeling pain intimately involves your thinking, judging, and emotional processes. And that's really important for people to understand.
Dr. Jill 19:04
Wow. You just brought something to light [that is] so important that I want to just stop, pause, and highlight.
Dr. Susan Sklar 19:09
Dr. Jill 19:10
I do mold illness, not burning mouth syndrome, but I've seen this. I've been talking about how mold causes this trauma loop. And you talked about this limbic [pathway], and this is the same pathway for pain. So what you're saying is very parallel because it's not just that you get this exposure and you're like: “I'm fine. I know I'll be okay.” You might consciously know that. The same [is true] with the burning pain or the chronic pain. You might know, “Okay, someday this will go away,” or you might have a very logical way to deal with it. But what we're talking about here is the subconscious triggering of the limbic system and other parts of the brain. It's not beyond our control because some of the solutions are meditation and the neuroplasticity loops that are creating new [inaudible].
Dr. Susan Sklar 19:50
Dr. Jill 19:52
However, it feels like a lot of these things, unless you actually address it… Again, for my little world in mold illness, you have to address the limbic system or you won't get well. It sounds very similar to what you're saying about chronic pain or burning mouth syndrome specifically. You have to address those loops, those wagon wheels, and the dirt or the rock because if you don't, you're going to keep perpetuating that cycle.
Dr. Susan Sklar 20:14
Right. And you know, I'm in Southern California, so I always explain it to people like: If you're on the freeway and there's an accident in front of you, you have to get off and go around on city streets.
Dr. Jill 20:27
I love that analogy because that's what it is. And what you said was neuroplasticity. That's what we're talking about—creating new loops, right? So I love that.
Dr. Susan Sklar 20:33
Exactly. Yes. So you might be really used to going on the freeway, and it's a little bit different doing the workaround. It takes a little bit more thinking. So you need to develop those alternative pathways. That's really important. When I saw that first review by somebody who said her burning mouth wasn't nearly as bad when she was on her hormone program, I was like: “Well, why would that happen?” I mean, what do hormones have to do with pain?” This was like 13 years ago when I first encountered it. There was no book on it. So I started looking in the scientific literature, and thank goodness for the internet. We have PubMed, which has almost all of the really important journals and articles that you can access. I started finding answers in what's called the psycho-neuro-endocrine-immunology literature. It really exemplifies what pain is. It's neurological, it's immunological, and it's endocrinological, meaning hormones.
Dr. Susan Sklar 21:44
So I read about progesterone. I was like, “What would progesterone do?” Progesterone helps calm nerves down. It helps improve nerve-to-nerve transmission. It decreases toxin effects on nerves. There was a study of using progesterone on the battlefield for traumatic brain injuries. It was a well-done study. It didn't show benefit. I'm not sure why. But we do have lots of other evidence that progesterone is brain-protective. Estrogen helps with brain speed—nerve-to-nerve transmission. We use DHEA, dehydroepiandrosterone. It's a neurosteroid. It's a steroid hormone made in the adrenal gland. It has tremendous anti-inflammatory properties and also incredible properties for neuropathic pain, which is this kind of chronic pain that takes on a life of its own.
Dr. Jill 22:42
Now, quick pause there, because, of course, I use that frequently with perimenopausal and postmenopausal [women]. But I'm using the lower doses. And I'm wondering, you don't have to give specifics, but are you going higher?—because I've seen the studies with autoimmunity and inflammation, where they go quite high with the DHEA.
Dr. Susan Sklar 22:58
Go high with DHEA and high with pregnenolone. Really, my limit is if it's high enough to cause side effects like acne, oily skin, or hair growth where you don't want it. So I go pretty high with DHEA. And pregnenolone is another steroid, also made in the adrenal gland, that has incredible effects for neuropathic pain. Actually, when I was doing this early on, I tried to figure out what I could put in a supplement. There was some literature about lipoic acid and neuropathic pain. And lipoic acid—there's a lot in the literature about diabetic neuropathy. There's some [information] in the literature about burning mouth syndrome and lipoic acid. We know that vitamin B12, methyl B12, is really important for proper nerve function.
Dr. Susan Sklar 23:51
I couldn't put estrogen in a supplement because you need a prescription. I couldn't put testosterone, thyroid, or progesterone in. I put the two things in that you didn't need a prescription for that you could get over the counter: DHEA and pregnenolone. I put it in a supplement. I would say 30% to 50% of people who use it get significant relief from their burning mouth syndrome.
Dr. Jill 24:17
That's tremendous. I want to pause, and I want to make sure that people can get access to that. So at the end, we'll make sure. That's tremendous. What were your per-cap doses of DHEA and pregnenolone?
Dr. Susan Sklar 24:28
It had 25 of DHEA and 100 of pregnenolone. And I honestly hadn't read anything about why it worked until I came across a website called Practical Pain Management that was started by a pain specialist, Dr. Forest Tennant. He was the pioneer in talking about hormones and pain. His first article came out in 2013. I didn't know about it. I only came upon his website in the last year. I've been in touch with him. He didn't know about burning mouth syndrome. He was really interested. And he has two websites, one for patients and one for professionals. So he has lots of references and everything. He talked about pregnenolone and DHEA. And I was like: “Oh my goodness! I finally got validation from an outside source on what I'm doing” because I knew it worked. But it's kind of nice not to be the only one.
Dr. Jill 25:27
And we have it all the time. Sometimes I'll say when I'm lecturing, “In my clinical experience,” right? And you just frame it like, “I see this in the clinic, and I know it works, but I don't have a large study.” And what I found more and more is that there are these great minds like you, and you're parallel in this journey, and you basically serendipitously found this great solution. But how wonderful to be validated! That's awesome.
Dr. Susan Sklar 25:50
Yes, I did. I also had another validation. Again, thank goodness for the internet. It was a Fourth of July weekend, golly, 10 years ago. I was on [the internet] reading about burning mouth syndrome, and there was a study from France that mentioned hormones in a rather general way. [There was] a researcher named Dr. Alan Woda. And thank goodness for clickable links. He had a clickable link on his name, and it went to an email. I thought: “I don't know. Let me give it a try.” So I sent him an email, and I said, “Hi, I'm a doctor in the United States, and I've been using hormones for these burning mouth patients. Can you tell me anything about that? I saw something about hormones in your research article.” The next day, he emailed me back and said: “Oh my goodness, I have known this theoretically but have not had the ability to actually prescribe the hormones and implement it. Yours is the first kind of clinical evidence of actually having it work.”
Dr. Jill 27:01
Oh, that's tremendous! You probably made his day, week, or month.
Dr. Susan Sklar 27:04
I know, and he made mine! We were in communication for quite a while, halfway around the world. Oh, how fortunate we are to have these resources. So with burning mouth syndrome, some people do well with the supplement, and other people want to become patients at my center, where I can prescribe what I call the full range. With burning mouth syndrome, some people say you don't call it burning mouth syndrome unless you've addressed the thyroid because hypothyroidism can cause burning in the mouth.
Dr. Susan Sklar 27:40
We look very carefully at thyroid. And you know, Dr. Jill, because you're in functional medicine, we don't just use the regular lab ranges as what's optimal. We measure free T3, which is a thyroid hormone that is your active thyroid hormone, which the conventional medical system generally doesn't measure. I feel like it varies too much during the day. I don't know; there's some reason. I'm not exactly sure why. So they measure your thyroid stimulating hormone, which is a hormone made in the brain that governs the thyroid. And if that's abnormal, they'll measure something called your free T4 or thyroxine, which is not your active hormone. It's your precursor hormone that then has to, by a series of steps and with certain nutritional factors—iodine, zinc, and selenium—turn into T3.
Dr. Susan Sklar 28:35
So we look at T3, we look at T4, and we look at reverse T3 because, under stressful circumstances, reverse T3 gets made. It is an opposing chemical to free T3. It will block the action of free T3. So even if your free T3 level looks okay, if your reverse T3 is high, your free T3 can't do the job. So the thyroid is an important part of it.
Dr. Susan Sklar 29:07
Estrogen—I mentioned—progesterone, DHEA, pregnenolone, and testosterone have protective effects on nerves, and melatonin does. There is a lot of documentation about melatonin in chronic pain conditions. We also always look at vitamin D because vitamin D is called a vitamin, but in fact, it has the chemical structure of a steroid hormone. Vitamin D is really important for healthy nerve function. So those are the things that we replace depending on somebody's levels in what I call a full hormone restoration program. There are other things we look at. And I'll just mention some of the things that need to be ruled out: Thrush or yeast in the mouth can cause burning.
Dr. Jill 29:59
If I can comment real quick because this is more of a gut-mouth… my area. The one thing I knew for burning mouth—and again, you're going way beyond that, so this is fascinating—was the whole yeast and creation of oxalates in that pathway because the oxalates can create some pain. I knew about that. Often, in the organic acids in the urine, which is a test that we as functional doctors often do, you can see the oxalates. And sometimes that would be associated with pain. But this is obviously way beyond that. So I understand how yeast could be an issue.
Dr. Susan Sklar 30:29
Right. So we look for that. You look for evidence of herpes or postherpetic neuralgia, which is lingering pain that people can have after herpes, or varicella, which is shingles in the face and head. We look at abscess ulcers, which are ulcers that occur, and Behcet's disease, which is an autoimmune disease that can cause mouth ulcers. So you want to rule out ulcerative diseases. There are some anti-hypertensives, particularly the ACE inhibitors, whose names end in ‘pril', like Lysinopril, that have been known to cause burning mouth syndrome. So people need to go on a journey to rule these other things out.
Dr. Susan Sklar 31:16
And by the time people see me, they've seen four, six, or eight practitioners, and they've seen dentists and oral surgeons, so I know that they don't have any of those issues going on in their mouths. Then [there are] the other things that we use. I've learned a lot through treating patients. And there's a wonderful pain specialist. We co-managed one of my patients. He's at Duke, Dr. Wolfgang Liedtke. I learned from him about using low-dose naltrexone for chronic neuropathic pain. So for patients who have not gotten where we want them with their hormone restoration, we add low-dose naltrexone. Do you want me to say a little bit about what that is?
Dr. Jill 32:04
Dr. Susan Sklar 32:06
Sometimes people get freaked out because they go look it up on the internet and read about naltrexone being used as an antidote for opioid overdose. And it is. In high doses, it will block the opioid. Opioids are things like codeine, dilaudid, and oxycodone. All of those things are opioid medications. We know right now in the United States there is a tremendous amount of opioid abuse and overdosing. So naltrexone blocks opioids in the brain. Opioids kill people by landing on the respiratory center in the brain and slowing it down so much that people stop breathing. So if you can give them naltrexone, it will block that. That's in high doses—50 milligrams.
Dr. Susan Sklar 32:59
What was found is that if you use naltrexone in very low doses—1.5, 3, or 4.5 milligrams—it actually has the opposite effect and will stimulate our opioid receptors. We make our own pain-relieving chemicals in our bodies—many of them. And our own opioids, which we call endogenous, meaning we make them ourselves, help relieve pain. We make them ourselves all the time. But low-dose naltrexone helps our body do that. So that is something else we add on.
Dr. Jill 33:38
Yes. There's a lot of research with autoimmunity and other pieces besides just pain. So in functional medicine, there were a few studies with Crohn's and colitis, ovarian cancer, and chronic pain. I find that even in SIBO, it can be helpful because it's an opioid blocker. It actually increases motility. So there are all kinds of little ways that we can use this. And it is different from the full dose of naltrexone because it kind of ends up having the opposite effect. So you could ask your doctor; there is an LDN Research website that actually does a pretty good job of bringing together the research. If you want to know more, you can go there as well.
Dr. Susan Sklar 34:12
Right, it's a great site. And part of the anti-inflammatory actions of low-dose naltrexone also help with neuropathic pain. Like I said, neuropathic pain is nerve, it's immunology—there's inflammation going on in those nerves—and it's endocrine. And then some of the other things that we've worked on trying that have helped some people: Oxytocin is a hormone that helps [with] pain and anxiety. So oxytocin can be helpful. Like I said, we're working on the dopamine pathways. So far, I've used supplements on the dopamine pathways, but I'm actually considering using some of the dopaminergic medications. And there are a number of them. Ropinirole is one of them [and] things that are used for restless leg syndrome, which is thought to be due to a dopamine deficiency.
Dr. Susan Sklar 35:14
Interestingly, I spoke to a burning mouth patient just a couple of days ago who went on vacation. She forgot to bring her medications with her. And one of the things she was on was something for focus and attention deficit called Vyvanse, of which nobody knows exactly what the mode of action is. So she couldn't get that. She was in Aruba, and she couldn't get it. They gave her the next best substitute, which was Concerta. She said: “You know what? My pain was gone for almost the whole week I was in Aruba. It came back [in] the last couple of days.” I was like: “Wow! Why would that happen?” I looked up Concerta, and it works on dopamine and also norepinephrine, or noradrenaline pathways. I have not prescribed those. Usually, psychiatrists prescribe them, but I am going to consider starting to use them as more potent ways of affecting the dopamine pathways.
Dr. Jill 36:14
I love this because my mind always goes out here. Again, we're thinking ahead and [asking], “What could we do with this?” or whatever. First of all, I love dopamine. I'm a dopamine girl. I have a motorcycle. I climb mountains. I just make a lot naturally. But there's definitely a correlation with what you do. Testosterone will increase dopamine. So that might be part of the way that testosterone is working because testosterone and dopamine work together. So that's something that we can safely do.
Dr. Jill 36:40
We talked about the wagon wheels, the routes, and the neuroplasticity. So doing things outside your normal routine—like going a different way to work or getting a different drink at your coffee shop or choosing to do something different at night for your routine, and all these different ways that are really simple, [like] going on a different walk or a different hike with your friends or your dogs or whatever—actually create new neuroplasticity. But the diversion into something different can also help dopamine. So there are ways that we can do [it], not just a pill or a supplement, which we're all for if they're safe and effective. But there are other ways.
Dr. Jill 37:16
And sometimes doing those things that are a little bit… Recently, I climbed the Third Flatiron, and I was terrified. But after I was done, that exhilaration, which was probably all dopamine, lasted for a month, maybe longer because I had done something completely outside the norm and terrifying. So [it's about] doing those things that maybe scare you a little but are safe and exciting and within reason because dopamine can cause impulsive behaviors too. So we don't want that side. But I'm just encouraging you to get outside the box a little because that might be a way to help [with] dopamine.
Dr. Jill 37:50
We also know serotonin and dopamine are yin and yang, just like testosterone and estrogen. If you have way too much serotonin, you're going to actually dampen your dopamine. We love serotonin; we need serotonin. I have no idea, but I wonder if an SSRI could also lower dopamine. These are all things I'm just throwing out there. I don't have all the answers, but my thoughts are [that] these all play as a harmonious symphony. And there are ways I think that we can support dopamine, like you said, [such as consuming] the fava bean, which contains the mucuna pruriens and also the tyrosine that you mentioned.
Dr. Susan Sklar 38:28
Right, right. So yes, there's lots of crossover. And one of the things you had asked me about was histamine. There is a doctor, Dr. Lawrence Afrin, who has a series—he's published a couple of series—on burning mouth syndrome as a mast cell overactivation or mast cell activation disorder. Mast cells are immune cells, and they release a number of different chemicals that can cause problems. And mast cells release histamine, which people are familiar with who have allergies and get itchy eyes and runny noses. But histamine is also involved in the pain pathways, along with other chemicals that are produced by mast cells.
Dr. Susan Sklar 39:15
I have not been really successful in having people get relief with the use of antihistamines. He uses two different types. He uses an antihistamine like loratidine, which you take for environmental allergies that hit the H1 histamine receptors. He'll also use something like famotidine, which is Pepcid, which we think of as an H2 blocker that blocks stomach acid. So it gets at the two types of receptors. I am trying to look at that some in patients who look like they might have mast cell activation and who have flushing. I always ask about dermatographism. If you scratch your arm—I don't have it—and you are left with a pink line, that pink line is a result of histamine release in your skin from scratching it. So I'm trying to figure out who might have histamine problems and where that might be a cause of their burning mouth.
Dr. Susan Sklar 40:20
One of the issues with this or any neuropathic pain condition is: What started it? When you talk about the root cause, really, what is the root cause? And with burning mouth [syndrome], nobody has been able to figure out what it is. I'm looking at all the usual things. I'm looking at mold, I'm looking at Lyme, and I'm looking at viral infections. And I think for different patients, it might be different.
Dr. Jill 40:48
Yes, that makes sense.
Dr. Susan Sklar 40:49
But what really led me to the hormone route is that if 90% of the people that have it are perimenopausal and menopausal women… And [in] so many women, it started either… I talked to somebody the other day; it started with a hysterectomy she had, and her ovaries [were] removed a year and a half ago. Or it starts within a year of the last menstrual period. We know that estrogen has some effect on histamine and may actually stimulate histamine, but estrogen also has a lot of anti-inflammatory actions and actions in the endocannabinoid system in our body. So not only do we have our own opioid system inside, [but] we [also] have our own cannabis system inside. Our cannabis system is millions of years old.
Dr. Jill 41:42
Have you found topical or tinctures of THC or [inaudible]?
Dr. Susan Sklar 41:46
Some people have, yes. Some people have gotten relief with cannabis. Some of estrogen's actions are through our endocannabinoid system. There are many, many layers to how hormones have their effects on neurotransmitters, our endocannabinoid, and our opioid systems. I was reading about orexins. Orexins are part of our hunger and satiety system. And that's involved in our pain pathways, so orexins will actually activate those H1 and H2 receptors. It's thought that acupuncture works partly via the orexin system.
Dr. Jill 42:34
That makes sense because that's a great therapy for pain. I've seen that work when other things don't.
Dr. Susan Sklar 42:40
Right, right. Let's see, I'm trying to think. That's kind of my…
Dr. Jill 42:45
Dr. Sklar, you have really gone [through] the gamma. It's a perfect functional medicine case because there are so many different pieces of the puzzle. And it sounds like there's a large percentage of hormones. It definitely is a huge piece of the puzzle, which is neat because you had this expertise background there already, and this lends itself well to applying that. And the fact that you basically came in contact with some experts in the field that… I mean, to me, this is groundbreaking—what you're doing. I'm going to try to help you get the word out because there are not many people talking about it, and it's so important for you to really be able to look at all those different parts and, like you, just continue to look for more options and more treatments and things out there. That's tremendous. So if someone wants to get a hold of you, see you, or get products, what's the best way to get in contact with you?
Dr. Susan Sklar 43:35
Sure, so there's my website, which is www.SklarCenter.com. And my office [number is]: 562-596-5196. We do burning mouth consults. There's a link on our website, and our supplement is also on our website.
Dr. Jill 43:58
Perfect. This is so tremendous. What great information! And already we have comments from physicians and patients that are like, “This is great information. Thank you so much!” I know it's just going to grow. You reached out to me, and I said, “Hey, can we do… ” “Absolutely!” It's one of those conundrums that many, many physicians—if not almost all of them—don't know what to do with, like you said. So to have some answers… I just can't thank you enough for doing the work, trying to figure it out, and bringing us your experience. So it's been about a decade that you've been seeing cases like this, right?
Dr. Susan Sklar 44:37
It has, yes. It's been quite a while. Actually, one of my patients told me that she was going to go see a burning mouth expert in Los Angeles, Dr. Joel Epstein. He's written a lot of the scientific papers. So I just filled out the contact sheet on his website and said: “Hi, Dr. Epstein. I'm a doctor in Long Beach, and I'm treating burning mouth syndrome. I'd like to know if I can refer patients to you.” He got in touch with me, and he said: “You have a whole other way of approaching it. Not only do I treat patients with burning mouth syndrome, but I [also] work at City of Hope, which is a big cancer center in Los Angeles. And patients [with] post-cancer therapy have a huge amount of problems with pain in their mouths, and nobody addresses it.” And he was like, basically: You're it.
Dr. Jill 44:37
Wow! I love it. [inaudible].
Dr. Susan Sklar 44:40
I know. I said, “I was so surprised that you actually took the time to get in touch with me.” And he said: “Well, I don't run across very many people who are interested in burning mouth syndrome and have your kind of experience. You're kind of it.” So he and I will collaborate some.
Dr. Jill 45:55
Tremendous. And that's interesting because, from 20 years ago to this year, I had breast cancer and three-drug chemotherapy. And that chemotherapy has a really toxic effect on the mucosal lining. Mine was ulceration; it wasn't burning mouth syndrome. But it was definitely pain—definitely pain all the way down. I just had that little flashback. I remember how that was. You're right: There's not a lot being done for that. So thank you, thank you for your information today. I know people are really going to enjoy this. I will share it wherever I can. Any last words of wisdom or parting advice for our listeners?
Dr. Susan Sklar 46:34
Yes. Keep searching. The people who have found me search the internet incessantly, looking for an answer. And don't accept that you're crazy or that it's in your head. Know that there is something going on. You just have to find the answer; just keep looking.
Dr. Jill 46:52
Awesome advice from Dr. Sklar. Thank you so much for joining us today!
* These statements have not been evaluated by the Food and Drug Administration. The product mentioned in this article are not intended to diagnose, treat, cure, or prevent any disease. The information in this article is not intended to replace any recommendations or relationship with your physician. Please review references sited at end of article for scientific support of any claims made.