Outdoors Woman Crystal Gail Welcome on Nature and Chronic Pain

Episode Transcript

Dr. Nath:
This week, on the Brain and Life Podcast from the American Academy of Neurology, I got to speak with an incredible woman, Crystal Gail Welcome. I don't know if you've seen her on Instagram, Daniel.

Dr. Correa:
Instagram has gotten to be such a deep hole of trying to keep up with everything. I don't get to catch everything.

Dr. Nath:
It's just all food pictures for you, right?

Dr. Correa:
Yeah. I love food pictures.

Dr. Nath:
Crystal Gail Welcome has intracranial hypertension with headaches and vision issues and has been working through that with medications and even surgeries, but what's fascinating is she has worked through her pain and mental health issues with nature, so she is a hardcore hiker. She has walked huge distances with her devices in tow, and she's figured out how to weigh everything so it fits in her backpack. It's really incredible, and we actually caught up with her on the trail, like she's in the middle of a hike this episode, so you might be able to tell the audio sounds a little different, and that is why it was worth it. We wanted to catch up with her.

Dr. Correa:
Wow. Yeah. Amazing.

Dr. Nath:
I don't know if you get any nature in your life, Daniel.

Dr. Correa:
Well, I regularly try to get a chance to escape the city, and I'm big fan of forest bathing.

Dr. Nath:
Wait. I don't know what that is. What is forest bathing?

Dr. Correa:
It's a translation of a Japanese term that just talks about mindfully being outdoors in nature and absorbing its benefits.

Dr. Nath:
Oh, wow. Ok, that's exactly kind of what she's all about. She says, "Hey. Go hug a tree. If you haven't recently, go do it. It's the first step," and I think that in the future we're going to talk more on this podcast about the impact of nature, nourishment, food, art, and how all of that can affect brain health.

Dr. Correa:
Yeah. I mean, there's been great articles on the Brain and Life Magazine and on the website on many of these topics, and we're looking forward to bringing some of that content in those topics here to you.

Dr. Nath:
And if you guys have any suggestions or questions about anything brain related, feel free to leave us a voicemail at 612-928-6206. We'd love to hear from you.

Dr. Correa:
You can find that number and the email to reach out to us on our show notes. I hope you enjoy this episode.

Dr. Nath:
Today, we are speaking with Crystal Gail Welcome, and she is coming in to us in a place where we have never interviewed anybody before. Crystal is an author, an experiential educator, and a social and environmental justice activist and backpacker. After she had a lengthy battle with intracranial hypertension, which we will talk about more, she came to recognize the healing power of nature.

Dr. Nath:
Utilizing her intersecting identities- Black, disabled, lesbian, backpacker- Crystal is on a mission to get historically excluded folks outdoors and in nature. Crystal is the first neuro-modulated recipient to climb Mount Whitney, the highest peak in the continuous US, and she did an epic 300-mile hike on the Superior Hiking Trail to speak out against racial injustice. We managed to catch up with Crystal while she's on the trail. She is in a hostel on a trail in California right now, and we caught her in between hikes. Welcome to the Brain and Life Podcast, Crystal Gail Welcome.

Crystal Gail Welcome:
Thank you so much for having me. I appreciate it.

Dr. Nath:
I would like to know, in the process of being diagnosed with intracranial hypertension, were you already seeking out the outdoors, or did that come later? Is it something you grew up with?

Crystal Gail Welcome:
No, the outdoors isn’t something that I came up with. Well, the outdoor exists without me, but it's not like a hobby or anything that I've ever done. I think that living with IH, intracranial hypertension, for so long and having way too many surgeries, you get to a point where you're just like, "I don't want any more surgeries, and if I'm going to be sick, then I'm going to live life to the fullest because I'll be sick regardless if I do it or don't.” I actually started running.

Dr. Nath:
Oh, wow.

Crystal Gail Welcome:
And I was like, "Oh, running's kind of cool," and then after a half-marathon, it was my first-half marathon, it was six months after my implant.

Dr. Nath:
Oh, wow. Okay.

Crystal Gail Welcome:
I ran this half marathon, and a friend, she was like, "You have to go cool down."

Crystal Gail Welcome:
I'm like, "No, I just ran. I'm not going to go do that."

Crystal Gail Welcome:
But she was like, "No, I want to take you to this nature preserve. I think you'd like it."

Crystal Gail Welcome:
I don't like trees, and I don't like bugs. Why would I do that? But I was like, "Okay, fine," so I went because she was very nagging about it. I went, and we were walking, and everything just got really quiet. I was like, "Whoa. This is weird," and all you hear is just the birds when you walk on the sticks. That's everything, and it was like, "Whoa. This feels so surreal," and then I saw this tree that I was just like, "Yo. I'm going to go hug this tree," so I went and hugged this tree, and then I had this great epiphany. I was like, "Whoa, I'm like this tree. This tree is grounded. I'm grounded." It was like a profound moment in my life, and I said to my friend, "I'm going to go be a backpacker."

Crystal Gail Welcome:
She was like, "What? You just needed…"

Dr. Nath:
Oh, and that was it?

Crystal Gail Welcome:
Yeah. Yeah. Yeah.

Dr. Nath:
That's it?

Crystal Gail Welcome:
Yeah, that was it.

Dr. Nath:
Incredible. I think, to back up a little bit for our listeners, you mentioned having intracranial hypertension, so there are different causes of this. For you, do you have idiopathic intracranial hypertension? Okay. I'll just go ahead and define that a little bit. Idiopathic is the word that we use in medicine when we don't know why. It's basically the shrug emoji of medicine, and intracranial hypertension means that there's increased pressure within the skull.

Dr. Nath:
The old term for this, that we don't really use anymore, is pseudotumor cerebri. We don't really like to use this term anymore because there's nothing pseudo about this condition. But they came up with it that way because the increased pressure in the brain made people think, "Oh gosh. There must be a tumor in there," but there's not a tumor. And so essentially it's increased pressure in the brain when there's not a mass causing it. What happened? How did you first get diagnosed? I'm guessing you had headaches, but what did you think was happening?

Crystal Gail Welcome:
I was having headaches, yes, and then I was also not seeing well. I was like, "Yo," but at the time I was really big on working all the time, so I was like, "Oh, I'll just put off this eye exam."

Dr. Nath:
What were you doing for work?

Crystal Gail Welcome:
Oh, I worked at a youth center. I was a safety net program coordinator.

Dr. Nath:
Oh, cool, so you're working. You're working with kids, and then you have visual changes.

Crystal Gail Welcome:
Yeah.

Dr. Nath:
Oh goodness.

Crystal Gail Welcome:
After a while, I was like, "Yo. I probably need glasses," so when I went to go get these glasses, they were like, "Yo, we are taking you to the ER."

Crystal Gail Welcome:
And I'm like, "I just need new glasses. There's nothing wrong with me."

Dr. Nath:
Oh, boy. Oh, so from the optometrist, they looked. They probably saw the science of increased pressure. Okay, straight to the ER.

Crystal Gail Welcome:
Yeah, swelling of the optic nerve, and it was weird because over the time that I went to the hospital, within like three days of being in the hospital, I lost all the vision in my right eye, and I was starting to lose vision in my left eye. They were like, "You need a shunt."

Dr. Nath:
Did you even understand what that meant?

Crystal Gail Welcome:
Not really. I wish that I was more informed at the time.

Dr. Nath:
It's just interesting for me to hear that from you because for neurologists, we think this is so obvious. We do this every day, but for most people, they're not familiar with what that means. For our audience, in case anyone out there is wondering what she means by a shunt, is when there's increased pressure building up in the head, the skull can't really move. Well, in little babies it does, but not in grownups. And so sometimes you need to relieve that pressure, especially if that pressure started to cause injury of the structures in the skull, like the optic nerves, and you're going blind. A shunt is a device. Basically, it's kind of like a tube that is put in the brain and can relieve some of the fluid in there into another part of the body more safely.

Crystal Gail Welcome:
And, like you were saying, this happens in children, too, but the shunts, I think, are built for kids.

Dr. Nath:
Yeah.

Crystal Gail Welcome:
So, they're not built for an adult, so they break all the time. It's like you're just having surgeries to fix these broken shunts. For me, it was just like, I've had a total of 15 brain surgeries.

Dr. Nath:
Ooh, more than 10. Oh, my goodness.

Crystal Gail Welcome:
And then I've had LP shunts, so I've had two LP shunts as well.

Dr. Nath:
I see, so a device essentially.

Crystal Gail Welcome:
Yeah, in my back, too.

Dr. Nath:
Oh, you have a few devices already. So, essentially they had these devices, these shunts, in place to try to relieve the pressure from your brain to help with headaches, as well as hopefully spare more structures in your brain from getting injured. Did the headaches persist? Did the vision loss persist?

Crystal Gail Welcome:
At first, yeah. It was getting worse. It started getting worse, but then I started to do research on, "What things can I do to help myself?" And so I tried a vegan diet. I did so many things to try to just be okay with things or try to fix things.

Dr. Nath:
I think anyone would try anything they could think of. I will say, just to kind of give some perspective to our listeners, idiopathic intracranial hypertension, it's kind of rare, but we see it maybe about 1 in 100,000 people. But what Crystal is talking about with needing a shunt, and then another shunt, and then still having symptoms, you had a very refractory case. After you had two shunts put in, and you're still having symptoms, you then had a device placed that I want to ask you about.

Dr. Nath:
It sounds like you had an occipital nerve stimulator placed. I looked at this because I actually have not seen a case of this. I'd heard about it in the literature, but it is seen as something of a, I say, last resort because some of the literature calls it a last resort for idiopathic intracranial hypertension to help with the pain and some of the symptoms. And so you had one of these occipital nerve stimulators placed. Did you have some relief with that or not so much?

Crystal Gail Welcome:
Yeah, so Dr. Nicholas Boulis at Emory, I was telling Dr. Boulis, I was like, "Hey. Look, I can't keep having surgery. I can't keep having these shunts," and so I was like, "Can you please just take the shunts out?"

Crystal Gail Welcome:
And so he was like, "All right. We can do that," but when he took it out, I was still having really bad headaches from time to time. And so when that happened, Dr. Boulis told me, "I see that you're making efforts to get better, and we can try something, and we'll see if it works." He was like, "But let's try you with this trial first to see if it works."

Crystal Gail Welcome:
I woke up the next morning and was like, "Yo, life is great."

Dr. Nath:
Whoa.

Crystal Gail Welcome:
I can't even explain it. It was just like going from being completely sick and having headaches to just being like, "Wait. I can do anything.” It really helped, and it was perhaps one of the best things that has ever happened. Having those modulators placed was just night and day, literally.

Dr. Nath:
That is incredible. I've met patients with IIH, idiopathic intracranial hypertension, who have needed medications and then the shunts. I have not met someone with the occipital nerve stimulator, so I'm really glad to hear that helped you. Once that was in place, were you then able to be like, "Okay, I'm going to make some real goals, like real hiking goals?”

Crystal Gail Welcome:
I remember I was telling Dr. Boulis, I was like, "Yo, so I want to go hike."

Crystal Gail Welcome:
And he was like, "Oh, okay."

Crystal Gail Welcome:
I'm like, "Yeah, thanks."

Crystal Gail Welcome:
So, at first, I think they were all just like, "All right. She's just this crazy woman just talking," but then I started hiking and sending them updates, and they were like, "Oh, okay."

Dr. Nath:
Something that as I'm talking to you, I'm realizing, so you are a Black American. As I look in the literature about idiopathic intracranial hypertension, it looks like rates are actually higher in the Black population, and there may be a number of reasons for this. There could be issues of access to care. There could also be some issues with obesity rates that, in some cases of intracranial hypertension, there's a correlation with obesity, not always, so it's interesting that you brought up nutrition earlier. Did you have any awareness that this was something that had more prevalence in the Black population, or did you not know that initially?

Crystal Gail Welcome:
I actually just learned that just now. I mean, it would make sense because if you think about access to care, and then you think about how the medical community, like if you are a Black female, then you're less likely to be believed or less likely to actually have your needs actually met, which is another thing that I love about my neurosurgeon. He sees me as a person, and so I appreciate that. It wasn't until I actually found, or we found each other, Dr. Boulis, that I started to see like, "Oh wait. This is how a patient doctor relationship is supposed to work."

Dr. Nath:
Oh, wow.

Crystal Gail Welcome:
That I'm supposed to be an advocate in my own care. It's my body.

Dr. Nath:
You are referring to something that is real. I mean, people are studying this now, these kind of generally subconscious or unconscious biases that exist among medical professionals, and they've done studies that there are differences in the way that medical professionals perceive pain in Black populations versus non-Black populations. It's really good that people are talking about it, and so everyone can be aware and to take something from the subconscious into the consciousness so we can at least be talking about it.

Dr. Nath:
But I think what you're telling us is a really good example of that, that you have a pretty rare refractory case of idiopathic intracranial hypertension, and the details of your story and what you're saying are really important to diagnose that and to treat it. I think that's exactly what you're talking about. I'm so glad you found someone who really collaborated with you. Along those lines, out on the trail, do you often find yourself as the only person of color out there?

Crystal Gail Welcome:
Absolutely. That's a thing. Absolutely. It's mostly just me. This season, I've been hiking since March 1st, and I've only met one person of color the entire time. I'm just like, "Hi. We're here."

Dr. Nath:
And you didn't grow up with it either, so you didn't really have a ton of role models in this space.

Crystal Gail Welcome:
That's absolutely correct.

Dr. Nath:
And so that's what you are now for other people and other kids. They can be like, "Oh, hey, wait a minute. I could do that too," right?

Crystal Gail Welcome:
Right.

Dr. Nath:
Have there been times that your condition and all of the devices in your bionic body, has any of that come up as an issue while hiking?

Crystal Gail Welcome:
I mean, to some degree. I have a rechargeable system, so it needs to be recharged. I have to come off trail to recharge the system, so that's something that no other hiker has to do. Whenever you're backpacking, you carry everything, so I'm carrying more weight, which means I have to really focus on nutrition because your food has to be light because if I can't reduce weight anywhere else, the best place where I can reduce the pack weight is through food.

Dr. Nath:
Okay, that is an issue I have never thought about before, but it makes sense. Yeah, because you have recharging devices, and they're heavy, so if you're a backpacker, that means your food has to be lighter. So, you're eating astronaut food, basically?

Crystal Gail Welcome:
I guess, yeah. There's a lot of dehydrated stuff.

Dr. Nath:
For real.

Crystal Gail Welcome:
Yeah.

Dr. Nath:
I live in Houston, near NASA, so people talk about astronaut food a lot. So, you have to take medication with you then too on the trail, right?

Crystal Gail Welcome:
Yeah, I take two different pills, one at night and one in the morning, that I take with me, too. I don't think that I'm a traditional hiker in the sense that most people are hikers.

Dr. Nath:
But that's really good for us to hear for people out there with chronic conditions that do take a lot of medicine, that there can be ways to work around this. I am curious. Do you find ways to stop at a pharmacy midway through, or do you make sure you just have enough for three months?

Crystal Gail Welcome:
Actually, when I go out backpacking, I'm usually out for about six or seven months, and so I have a partner. She mails, so I don't have to carry all of the, because that's more weight, so she just mails it every month.

Dr. Nath:
I would like you to tell us a little bit about Only Footprints.

Crystal Gail Welcome:
Only Footprints is a nonprofit organization that I started in 2016 when I started backpacking. I started to notice there was a huge gap. You would see a lot of people that don't look like me, but no one was a reflection of me. I was like, "I need to change this," so I went back to school to get my master's in adventure therapy and adventure education.

Dr. Nath:
I did not know that was a thing. Amazing.

Crystal Gail Welcome:
It's a thing- Prescott College. It's a master's in interdisciplinary studies.

Dr. Nath:
So cool.

Crystal Gail Welcome:
Yeah, so I went back to school to get that degree. Then, while I was in school, I started to notice, "Wow, wilderness therapy is really therapeutic," but in order for you to go to wilderness therapy, it costs a lot of money. It's not like a, "Oh, this is free. Come hang out in nature," and so I started to think more like, "If we're talking about cost, and we're talking about barriers, then we need to go deeper than that." And so my undergrad is in forensic psychology, so I was really into how crime affects families.

Crystal Gail Welcome:
For me, it was like we have a lot of programs for if your father's in prison. Then, we have programs to try to get you to reconnect it, but we don't have a lot of programs for children with incarcerated mothers. And so that was something that I really wanted this specific population to have access to therapy because in my head it's like your mom's not around, but there's mother nature, and so she provides. That's when I started this nonprofit because that's a crucial bond that is often broken when your mom's incarcerated. So, I really wanted something that would get those kids outdoors and do it for, "You can come for free."

Dr. Nath:
Oh, wow.

Crystal Gail Welcome:
You just come, hang out, and live your life in the woods for a week for free, and that's how I came up with the whole thing.

Dr. Nath:
Was hiking therapeutic for you for the uncertainties of your diagnosis as well, and is that kind of what drew you to think like, "Wait a minute. This can help other people with a lot of turmoil in their lives?”

Crystal Gail Welcome:
Right. For sure, so what happens is that your body kind of just takes over, and it starts to do stuff. You're like, "I'm not telling you to do that, body. Stop that." But then when you're outdoors, you have full control over your body, like completely. You have where you get to determine how much you eat, how much you walk. You're in complete control of it all.

Crystal Gail Welcome:
For me, it was like I've spent so much time having my body not listen or play tricks, if that makes sense, so that when I actually got into the outdoors, it was like, "Wait. I got full freedom. I'm in perfect balance with myself," and so that was something that really drew me to spending more time outdoors, just like connecting with my body. I could actually feel things again. When I was always sick, it was like I disconnected with my entire body, and that disconnection was also bad because that disconnection also made me sicker, if that makes sense. I was always just in a chronic state of, "Nothing works," so being outdoors really changed that.

Dr. Nath:
For any of our listeners out there dealing with chronic pain conditions who have never done anything outdoors before and might have a pair of sneakers, just for super basics, what would you tell them to do just as a little start to dip their toes in?

Crystal Gail Welcome:
I'd tell everyone to just leave your phone at home or turn on airplane mode, and just go for a walk around your block. Go outside. If you can't walk, then just go outside for like 10 minutes. I tell people to put their feet on the grass, like feel the ground. I'm really big on hugging trees, so I tell everybody to hug trees. I'm just like, "Go hug a tree if you can't do that. There's some support in the tree," so just really simple things.

Dr. Nath:
You're basically describing a method of mindfulness, of truly being present in the moment, which I think in modern-day life is a really hard thing to do. We're constantly bombarded by distractions and things like that, and it could be easy to get really caught up in that. So, hug a tree, take a selfie, and send it to your doctor. Please let us know where can we find you on social media for people who want to keep track of where you're hiking?

Crystal Gail Welcome:
Right on. It's footprintsforchange, and that's F-O-O-T-P-R-I-N-T-S-F-O-R change on Instagram, and then my name is Crystal Gail Welcome.

Dr. Nath:
Well, thank you so much for joining us today while you are on a trail in a hostel somewhere.

Crystal Gail Welcome:
Right on.

Dr. Nath:
That's incredible. Best of luck with your trail today and with all of your goals in the future.

Crystal Gail Welcome:
Right on. Thank you so much. I appreciate talking to you. It's been great.

Dr. Correa:
Can't get enough of the Brain and Life podcast? Keep the conversation going on social media when you follow @brainandlifemag or visit brainandlife.org. As your hosts, we would also like to hear from you on Twitter at @NeuroDrCorrea and @AudreyNathMDPhD.

Dr. Nath:
To learn more about idiopathic intracranial hypertension and headaches, we'll be speaking with Dr. Kathleen Digre, who is a professor of neurology and ophthalmology, and adjunct professor of obstetrics and gynecology and anesthesia, at the University of Utah School of Medicine. Her particular interest is in headaches and conditions that affect the optic disc and increase intracranial pressure, which is exactly what we're going to be talking about today. Welcome to the podcast, Dr. Digre.

Dr. Digre:
Thank you so much, Dr. Nath, for having me.

Dr. Nath:
First off, Crystal told us about her experiences with being diagnosed with idiopathic intracranial hypertension. Can you tell our listeners, basically, what is this entity?

Dr. Digre:
Increased intracranial pressure can come from something, so it's like secondary to a brain tumor because you added a mass inside the brain, or it's caused by thrombosis of a vein, which increases the intracranial pressure. But some people can develop this without anything seen in the brain. The pressure in the brain rises, and then it creates symptoms and signs.

Dr. Digre:
The symptoms are usually headache. Headache is the most common symptom that somebody has, but it can also have other symptoms like dizziness, ringing in the ears, wooshing noises, and the signs that we look for are papilledema, which is a raise of the optic disc. This is the little connection of the brain to the eye, the optic disc, and it becomes swollen. We, in neurophthalmology and ophthalmology, can look inside the eye, neurologists can do so as well, and see that the disc is swollen. Then, you have to explain why is it swollen and look for raised intracranial pressure.

Dr. Nath:
So, to start this whole process, people need to understand that they have a new headache, and they likely then seek medical attention. Just briefly, what might be different about these headaches with increased pressure in the head versus a tension or a migraine headache?

Dr. Digre:
Well, that's a difficult question because over half the people who get idiopathic intracranial hypertension also have underlying migraine, but my patients tell me that they can tell the headache is a lot different. For one thing, it's continuous. Some people say it gets worse when they're lying down, but I have not found that to be 100 percent. Sometimes-

Dr. Nath:
That's what the textbooks say.

Dr. Digre:
But in practice that's not always what happens.

Dr. Nath:
Yeah.

Dr. Digre:
But it's a continuous headache, or it's a headache that's different than their regular migraine headache, but they may have migraine on top of this because many of these people do have underlying migraine headache. I always say if the headache is new or different, it's a change in the headache, then you want to talk to your provider about that because then maybe there is something else going on, like raised intracranial pressure.

Dr. Nath:
And like you said, there's a number of reasons that the pressure in the head can be increased. For example, a tumor would do this. It's taking up space, and it's pressing against things. The old term for idiopathic intracranial hypertension was pseudotumor cerebri, with this idea that, "Oh, it's like there's a tumor, but there's not." Anyhow, I think the current terminology is much better than that. In your clinic, when you see patients with this idiopathic intracranial hypertension, in general, are they younger folks? Are they older folks? Are they women or men? What do you tend to see?

Dr. Digre:
Well, most of these people are women. It's 90 percent of the patients I see are women, but men can get it as well, and they're of childbearing age. They can be young. Girls and boys can get it, and it's usually 50/50, but at puberty, idiopathic intracranial hypertension really takes off in women and continues on into the 40s, 50s. It's very uncommon after a woman, let's say, is postmenopausal. It's very uncommon. It can occur, but it's very uncommon.

Dr. Nath:
That's interesting.

Dr. Digre:
Yes, and what I think is really interesting is that people have heard of optic neuritis, multiple sclerosis all over the place, but this condition is as common as multiple sclerosis in obese women. With the obesity epidemic that we have, this is way more common than people realize. Most of the people that we see, again, maybe 80 to 90 percent, are overweight or obese and have had recent weight gain in association with a development of this condition.

Dr. Nath:
What are the first steps? Once you've made the diagnosis, you know there's not a tumor there. What do you do to help manage the pain associated with IIH?

Dr. Digre:
Actually, you have to do more than manage the pain. You have to prevent visual loss because visual loss is one of the most bothersome and most serious outcomes of this disorder because there are people who develop severe visual loss. So, the first thing is we try to understand how much visual loss somebody has. If they have no visual loss, and it's mainly their headache, then we know from the idiopathic intracranial hypertension treatment trial, which is a large, multi-centered trial that came out a few years ago, we know that treating with acetazolamide at high doses is the treatment to lower the intracranial pressure.

Dr. Digre:
Some people even lose weight being on it, and for some people, when they get on the medication, their headache gets a little bit better. The headache piece of this is you almost have to manage this in parallel, and sometimes ophthalmologists that only take care of the vision don't feel comfortable taking care of the headache. Neurologists sometimes don't feel comfortable watching the vision, and they are happy to take care of the headache. That's why neuro-ophthalmologists tend to do both, take care of the headache and take care of the raised intracranial pressure and protect the vision. In my clinic, for example, I first make the correct diagnosis, make sure I don't have a secondary problem going on.

Dr. Digre:
I get the acetazolamide going, and then I think about what I'm going to do to prevent the headache piece. Sometimes I'll combine something like topiramate, which has weight loss as a side effect even with the acetazolamide. I have to carefully follow their electrolytes and things like that, but a lot of people, they get on both these drugs, they can lose the weight, the pressure goes down, the headaches get better, and we're doing fine. But sometimes it's not that easy, and then you have to get fancier and come up with better migraine preventative trials. Because, as I said, more than half of these people have underlying migraine, which is way more than the general population, and so you have to treat the migraine portion sometimes in addition to the raised intracranial pressure.

Dr. Nath:
In the case of Crystal, she was telling us that she had tried medications and ultimately underwent a surgery to implant a device to help her with the pain aspect of her IIH. How often do you see this in your practice, that people need a device?

Dr. Digre:
Rarely. Rarely do I see it. Sometimes you can try things, but we have so many treatments for the headache piece, and then we have external devices that don't have to be implanted for the headache as well. We rarely need to go to any implantable device, but some people get desperate and have to go as far as to get some kind of device.

Dr. Nath:
You were mentioning that you tend to see these headaches and vision loss with IIH, particularly in women of childbearing age. Is there a known reason for this? Do we know if there's a particular hormonal effect that's causing it in women of that age, or do we not know?

Dr. Digre:
Well, we don't really know. The bottom line is we don't know. There's a lot of people who've speculated that it's hormonal, and it just hasn't panned out. There are people who've speculated that it has something to do with obesity. Now, I do think that is definitely the one association that is not completely universal, but does occur with such frequency that, that is one of the associations. But we really don't know what the cause of raised intracranial pressure in this idiopathic form is, and that's why it gets the name idiopathic. It means, "We don't know. It just happens."

Dr. Nath:
Yeah, patients love that, right?

Dr. Digre:
Yeah.

Dr. Nath:
We throw our hands up.

Dr. Digre:
Yeah, but I do stress, weight loss really helps. Some people just lose the weight, and it goes away, which is wonderful, right? And then some people have trouble losing the weight, and there may be things that keep people from losing weight.

Dr. Nath:
Crystal had mentioned that part of what was so difficult about dealing with this was the uncertainty, not knowing what was going to happen, not knowing when the pain was going to get better, and what was going to happen to her vision, and that embracing the outdoors helped her with a sort of mindfulness to take her mind off of all the uncertainty. If there's anyone out there listening that may have been recently diagnosed with IIH, is there anything you'd like to tell them from your perspective?

Dr. Digre:
Yes, I would say that's a really good idea, to embrace the uncertainty that we don't always have all the answers, and to find outlets that allow you to kind of be able to go with the flow and not let anxiety or depression take over because in this condition, anxiety and depression also are comorbid. They occur, and it's not just you can't deal with life. It's that they actually occur with this illness, and so I love that she's gotten out and done hiking. I think that's one of the best things.

Dr. Digre:
We often recommend, in chronic headache, for example, and in people who have chronic headaches with idiopathic intracranial hypertension, cognitive behavioral therapy, which includes mindfulness. Mindfulness is really a great way to take your attention away from the pain, and then focus on something external to yourself, so I love that she's doing that. I think it's awesome, and being outside is wonderful. Being in green, as you know, being in the forest, and being in nature is so restorative to everybody's soul.

Dr. Nath:
It is.

Dr. Digre:
Yeah, I think it's great.

Dr. Nath:
With any diagnosis, it's true.

Dr. Digre:
Yes.

Dr. Nath:
Well, thank you so much for joining us and explaining this condition to us because you're right. It does affect a lot of people out there, and people might not be aware that it's actually pretty common. Thank you for joining us.

Dr. Digre:
Thank you so much, Dr. Nath, and to all of those of you out there with idiopathic intracranial hypertension, never lose hope. There's always treatment to help prevent visual loss, and also to prevent these headaches that occur with it and the other symptoms that can come with having this disorder. Do not lose hope. There's always more we can do.

Dr. Nath:
Wonderful. Thank you.

Dr. Correa:
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Dr. Correa:
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Dr. Correa:
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Outdoors Woman Crystal Gail Welcome on Nature and Chronic Pain

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