POTS Diary with Alison
[00:00:00] Jill Brook: Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with a POTS mom, Alison. Alison, thank you so much for joining us today.
[00:00:14] Alison: Oh, I'm so glad to be here. Thank you.
[00:00:17] Jill Brook: So we were just joking that I'm having insurance problems today and you have a hopeful tale for us. So I am so excited to speak with us. But for starters, maybe we can just start with like basics. Like where are you? Can you tell us a little bit about you and your family and your POTSie child?
[00:00:34] Alison: Sure. We live primarily in Lincoln, Nebraska. When all of this started for my daughter, we always had our home in Lincoln, but we were living in Sewanee, Tennessee and we didn't know it was POTS when it started. We just knew she was not able to run as much. She was dizzy a lot. She was tired a lot.
She just wasn't able to perform or do things at the same level. She had been able to do them before. We thought she was just getting tired and run down. When she was attending her university there in Sewanee, Tennessee, she also was a semi-professional show jumper. Rode horses over jumps.
[00:01:13] Jill Brook: can I just slow you down for a second because there's already like some interesting things that I wanna dig into.
[00:01:18] Alison: sure
[00:01:19] Jill Brook: Um, so can you just set the scene of Sewanee, Tennessee?
[00:01:25] Alison: Yeah, it's beautiful. It's in the blue Hills Mountains in the Cumberland Plateau, and it's breathtaking. And the campus was on thousands of acres of undeveloped land and it was a utopia. And so her mom and dad poor thing followed her out there and lived there when she went to school out there. And it was actually really handy because where she primarily horse showed was in Lexington, Kentucky and then Wellington, Florida. And so it was actually a nice place to be because we kept driving between both locations. And then for while she rode on the show jumping team for the university. It was perfect. We had a little house in the woods and we couldn't see or hear anybody else, and it was kind of a perfect place for us all to live for a while.
[00:02:13] Jill Brook: Wow. Okay. And was it just the one daughter, any other children?
[00:02:17] Alison: One daughter only had one daughter. Thank goodness, because I'll tell you what, I don't know how parents navigate this with more than one child because it's a full-time job when they're really sick, it's hard.
[00:02:28] Jill Brook: And so at what age did your daughter start having these issues?
[00:02:33] Alison: At 22 and well, okay, as with most POTS patients, when you realize you have POTS, you look back and you realize there were probably signs for longer than you realize. And I would say that she probably had very minor case of POTS for many years before that because she would have to stay very hydrated and we'd have to pump Gatorade into her when she was horse showing, especially because, you know, she was more active than, and she was often dizzy in the morning.
and. She had to miss school more than most kids, and we didn't really understand why, but she'd feel nauseated and tired and dizzy, and then the next day she'd be fine. So we saw that for five to 10 years in varying degrees before she was 22, but when she was 22, and of course we don't know for sure, she'd had many, unfortunately concussions prior to when she was 22, but she had one that year that we think kind of triggered the severe onset of her POTS and some stress that triggered it too.
[00:03:50] Jill Brook: Was this getting thrown off of a horse?
[00:03:53] Alison: yes, which happens a lot when you're going over really high jumps and sometimes they stop that your body keeps going and so you land in the sand. It's very common with show jumping and she also had a pretty serious viral illness Right about that same time. So we don't know whether one or both really caused the symptoms to get much worse or what. she did get through her senior year in college and. She went straight from there to Washington DC to do an internship with the DC Attorney General.
[00:04:29] Jill Brook: Wow. So it sounds like she was not letting this slow her down at first. She was going full steam ahead, still doing school, and she was just dealing with it, just pushing through.
[00:04:39] Alison: Yeah. Yeah. Just kind of, there were some days that she couldn't push through. I think her adrenal glands shifted into gear when she was horse showing because she had to be so up and that kind of helped keep her up and vertical during those periods. And then during school, her professors were pretty accommodating with her cuz they were small class sizes and so she had to miss a day here or there. She was able to do it and yeah, so she just kind of pushed through at that point.
When she was in DC she started there in May. And that summer, I can't even remember, I think that was May of 2017 is when her symptoms really started getting bad And we didn't know what was happening. Of course, you may or may not know, but Washington DC is horribly hot and humid in the summer. It's just about as bad as anywhere in the south. It's pretty muggy because it fits below sea level and the air kind of gets trapped and it gets really hot. And again, we didn't know all of this at the time, but she was living there alone and she started just getting sick all the time, you know, not sick sick, but what we thought was sick, hot sick, where she couldn't get up and do anything.
The mom in me with a nervous wreck because, you know, she'd be walking down the street in DC and feel like she was gonna faint and call me and say, mom, I don't know what I'm gonna do. And I'm like, okay, just talk to me. Just sit down somewhere. Let's wait and see how it goes.
And I guess the first time she fainted, I think was in August of that, year. And she fell in her bathroom by herself and hit her head on the bathtub. Yeah. And, you know, that terrified us all. And so immediately, because we happened to know several people that live out there, we got in right away with a cardiologist. Because that's who seemed like, might be somebody who could help with this. I don't know what we were actually thinking of with a cardiologist at that point.
It turns out that it wasn't a bad decision, but she had no idea what was wrong, and so I thought, okay, I'm gonna fly her home, get her here, get her in with my doctor, who we had a really great relationship with up to that point. And unfortunately she just looked at us and said, I don't know what you want me to do? I can't help. And I was like, okay, well we wanted you to give us some direction, maybe some blood test, anything, you know, nobody did anything. They just kind of both girls faint and they grow out of it. And it was like, no, girls don't faint and they don't feel so sick and they don't lay in bed day after day after day and not be able to get up. Especially somebody who had all the drive to go to an academically rigorous school and horse show out of town at a high level the whole time she was there.
And you know, this just isn't her. Luckily we have a lot of friends who've had to go to Mayo Clinic and so I was familiar with Mayo and so I immediately just got on the phone and made an appointment and at that point, they weren't overwhelmed with dysautonomia patients and they didn't know what it was either. They set us up for one of those one week long visits plan
[00:07:53] Jill Brook: which Mayo clinic?
[00:07:55] Alison: The one in Arizona.
[00:07:57] Jill Brook: Mm-hmm.
[00:07:58] Alison: Mm-hmm. And you know, so 24 hours later they knew it was POTS and cuz they did the tilt table test, they did all the stuff that, the cardiac workup. they did the whole workup there for us because they didn't know what it was.
And so they did all the blood testing, the cardiac workup, all kinds of x-ray. They did a psych evaluation just because that's standard the first time you go and you're we're trying to figure out what it is. Luckily the therapist immediately said, no, there's nothing wrong with her psychologically, so you don't need to go down that route.
And the other thing that they did, and I do think made a big difference in her case was a sleep study. And in her case, and I know this isn't the case for all POTS patients, but she did have a sleep disorder that contributed to it also. So that was a huge find for us and made a big difference initially.
Anyway, the doctors were great. We stayed there for a week. We had to go back to meet with the POTS specialist, Dr. Goodman. So it was not for a few weeks that we were able to go back and get guidance from him, but we immediately got her a C P A P machine and got her all set up with that, and that did help.
She started getting more rest and obviously that helped with POTS too. But she wasn't a hundred percent by any means. And so it was very useful when we met with Dr. Goodman because at that point her POTS was problematic, but it wasn't so severe that the normal kind of protocol at that point being increased fluids, increased salt you know, slowly get back to exercise and doing it horizontally at first, the whole deal. All of those things did help her a lot in the beginning.
[00:09:49] Jill Brook: Oh. So that implies this takes a downturn though.
[00:09:53] Alison: it does. Yes. She was able to manage it. It was not easy, but she was able to manage it from then until 2020. It took a lot of work as it does for most POTS patients. A lot of resting on the days that you're not going to do anything. A lot of just preparing for it and then psychologically adjusting to it at that point too.
It's so hard for POTS patients and anybody with an invisible illness to have a day where they can't do anything and then the next day feel almost normal and then, you know, post things on social media. And so she had a lot of people judging her like, oh, you didn't feel good enough to do this then, but you feel good enough to do this then.
So it was a lot of emotional adjustment during that period. And it was also really hard for us as a family cuz we were still learning about how to manage it at a family. We didn't have a full understanding of POTS at that point, so we didn't know how much to push her, and sometimes we would push her when she wasn't up to being pushed.
And it's an incredibly difficult thing to navigate when they're old enough to make their own decisions
[00:11:06] Jill Brook: Cuz at this point your daughter was what? Mid twenties.
[00:11:09] Alison: yeah, she was 22. And living at home when she didn't expect to be living at home, but she had to come back home. She had to cut her internship in DC short. She had planned to go to law school there, but she couldn't, she had to move back with us and So that summer was very, very hard.
That's 2018 by the time now that I'm talking about. And we did go back to Mayo two or three more times just for further consults and every time we went we got more information that was helpful. And for the next couple of years, she actually went to law school here in Lincoln, Nebraska. Got engaged, and got married.
[00:11:47] Jill Brook: Wow.
[00:11:47] Alison: Which was wonderful. It was hard, but she did it. And the PACE workout, you know, I can't remember what that protocol is called. What's it called? The Levine
[00:11:59] Jill Brook: Dallas protocol or the Levine protocol.
[00:12:02] Alison: Levine Protocol. That's it. Yes. That worked very well for her. So she was able to work out and get to the point where she was able to work out at a normal level and I think that helped her to manage it for a while. And then in 2020 she got COVID.
Things went downhill big time. And even then, it wasn't awful, but it was bad. She had to Drop outta law school. She tried the first semester of her third year of law school and you only have three years of law school, so it was really hard for her to drop out that semester because she was so close to being done, but she couldn't do it.
Her brain wasn't working right. She didn't have the energy. She did well in law school, but was starting to do not as well. So she made the decision that she had to focus on her health and getting better, and then she was managing it fairly well.
It wasn't as good as before she got COVID, but fairly well. And then in 2022, and I hesitate to say this because I don't wanna discourage anybody from getting the vaccine, but she got the booster in January of 2022 and that was catastrophic.
[00:13:15] Jill Brook: Oh
[00:13:16] Alison: It completely wrecked her system. We thought she was gonna die. She could not keep anything in her stomach, either she threw it up, or honestly, it's the most bizarre thing. She put something in her mouth and an hour later it would come out all through her digestive tract.
[00:13:37] Jill Brook: yeah.
[00:13:39] Alison: so she was wasting away. She had the horrible vibrating symptoms that some POTS patients have
[00:13:46] Jill Brook: Yes,
[00:13:46] Alison: Nerves are on fire.
[00:13:48] Jill Brook: yes. Don't know what that is.
[00:13:49] Alison: she had almost any symptom you can imagine, couldn't sleep because her eyes would vibrate constantly, couldn't sleep just because the twitching. Pain from her body. Horrible, horrible migraine, headaches anything and everything you can imagine. Couldn't exercise, couldn't do anything.
One night when it was really, really bad, and especially the creeping crawling nerve tingling, feeling like your skin's being poked a thousand places all over. She was at her within and she's like, I can't do it. I can't handle it. So we went to the ER and of course, nobody knew anything about it, and they did give her an IV, which I think maybe helped, but I'm not a hundred percent sure. Think would help the most at that point if they gave her a really strong sleep medication and was able to sleep a couple of nights in a row, which I think actually helped a little bit at that point. So at this point, for about three months, she pretty much was in a dark room all day, every day, not able to do anything, not keeping food down and wasting away, bones everywhere. I mean, you could see her skeleton.
[00:15:04] Jill Brook: How did she deal with that psychologically?
[00:15:06] Alison: You know, I don't know that I can answer it for sure for her, but I suffer from a chronic pain condition that's pretty bad too. And the way that I can best describe it, and I'm guessing this is what she would say, you get in such a blur that you don't even think about your feelings. You feel so bad, you don't even think about the emotional impact. You know, you're just trying to exist from one minute to the next and you don't feel good enough to process it. You're just trying to get through each minute. And it's when she'd start to feel a little bit better that she'd get really down in the dumps about it.
[00:15:46] Jill Brook: Wow. Okay, so three months. What happened after three months?
[00:15:51] Alison: Well, I was getting desperate at that point because I was so worried about her. I was getting desperate and so we called a good friend that we have at Vanderbilt. We tried to get back into Mayo, but they're overwhelmed with new COVID patients and every place in the country has a two year long waiting list and yada, yada, yada.
So we happened to know some people at Vanderbilt, so I thought, you know, they have a great pOTS Clinic there and Dysautonomia Clinic. I'll see if we can get in there faster. Maybe they'll have some answers. And we got in and they were wonderful. They were really nice, but they didn't tell us anything new.
[00:16:26] Jill Brook: Ah.
[00:16:27] Alison: and they just said, you know, yeah, we're seeing this with the vaccines with POTS patients.
And I thought, oh, why isn't anybody letting POTS patients know that? But they just didn't have any answers. One thing that did help a lot at that point, because her heart was so out of control, you know, it was 1 50, 1 70 just standing up and standing still. She did get on a beta blocker and that did help her get to the point where she could function somewhat and eat.
She started absorbing some things. But she still had terrible diarrhea, terrible nausea, terrible everything, but it was better. So Vanderbilt didn't help. And then I heard your podcast and oh my gosh. I wish I could remember the name of the young woman who talked about going to Dr. Lovich but everything she said sounded so much like Emma. And you know, I've been reading a little bit about what Dr. Lovich does at Delta S performance and it made sense to me, especially, you know, we suspect that her POTS is from concussions. We're not a hundred percent sure, but because she was a horse show jumping athlete she did fall off many times over the years, and of course she always wore a helmet, but they can only do so much and yada, yada yada. And we know we had diagnosed concussions a few times. A few times she had 'em, and she didn't tell me about 'em until a month or two later because she knew I wouldn't let her ride.
[00:17:55] Jill Brook: Oh.
[00:17:55] Alison: if she had a concussion until all the symptoms had resolved.
So anyway it just all made sense to me that wiring of the brain somehow got off somehow and because obviously the brain and the body are not communicating properly with one another. At that point we were kind of like, we have to do something. There's nothing else left to try. I don't know what else to do. We went to him and within 24 hours we started noticing unbelievable changes.
[00:18:26] Jill Brook: Okay. Can I just back up a second? So first of all, I think you're talking about Samantha. Shout out to Samantha who shared her story with Dr. Lovich, and they are in, I seem to recall Denver, Colorado. So you went to Denver.
[00:18:41] Alison: We went to Denver, and they do have other locations in the Northeast, like in Boston and New York, but Denver's only a seven hour drive for us. So we just were like, okay, we're gonna go to Denver and stay there for a week. And if this works, it works. And if it doesn't, it doesn't.
[00:18:58] Jill Brook: So what on earth did you do in that first 24 hours that made a difference already?
[00:19:03] Alison: okay. I wanna first say to people it's usually not covered by insurance, which is tragic. But What he does is he very carefully does an assessment of all of your body to see how your balance is.
And you know, he does these exercises where he uses your hands and your nose and your eyes and your ears and your balance to see whether they're communicating. What you think you're communicating to your body is actually what's being communicated to your body. So if he'd tell her to stand up straight, And she'd stand up.
She wasn't standing up straight. She was leaning to the right and forward, but she was convinced that she was standing up straight. And then he has these eye goggle things that he puts on that measures eye movements. And her eyes the first time were zigzagging all over the place. They didn't operate together, they operated independently.
So her right eye might go to the right when you say go to the right, but the left eye would stay centered. And I mean, it just takes common sense to figure out that if your eyes are not working in conjunction one, one another, you're gonna feel off balance. You're gonna be dizzy. Your body is getting signals sent to it, your brain is getting signals sent to it that are inaccurate about the way the world is.
And so it's gonna respond inaccurately and then it's gonna compensate in a way that is not best. And that rewires your brain to operate incorrectly in the world, and it's just a continuing loop downhill. And he is a master at explaining things so you understand how and why it's all working. I can't do it as well as he can, obviously.
But everything he does, he explains why he is doing it and what he is doing. So the first day, the first half of the day, he is spent kind of getting a baseline for where she was at and what was not working properly, and then he started exercises. And again, it's different for each person.
So it's kind of hard to explain, but a lot of it is balance. A lot of it is eye exercises where he has you move them in a certain rhythm or way so that your eyes are starting to operate together Again. Balance exercises. So your body starts to know when his balanced, and it sounds simple, but it's not because at the same time, he might have you be balancing.
He's also having you do eye exercises, and so that helps your body act off of instinct instead of what it used to do. And it's been inaccurately, retrained to do. It's really kind of complex, but it's a lot of repetition and it's exhausting for the patient, even though it doesn't seem like it would be.
But you know, when your brain hasn't been working right, and you're trying to teach it to do things the right way, it feels hard.
[00:22:07] Jill Brook: Yeah, for sure. And you know, I was just gonna say for our listeners, for anybody who wanted to go and back and listen to Dr. Lovich episode, where I think he explained some of this stuff in more depth, We'll put a link to that in the show notes. But it's Dr. Michael Lovich, L O V I C h. Right.
[00:22:25] Alison: I think if anybody listens to him, it'll all make perfect sense. And it did for me and it was like, we're going to this guy because, you know, this makes so much more sense than what anybody in traditional medicine has said it. I don't fault traditional medicine. And he's not not traditional.
He uses the science and he is a doctor, but he just does it differently than any other MD in like a Mayo or Vanderbilt will do right now because there hasn't been double blind placebo studies and all kinds of different things that they need before they can start diagnosing and prescribing treatments.
And so I think they're doing the best they can with the limitations they have, but he can do a little bit of thinking outside the box. And so that's wonderful because it's helped a lot of people, friends of hers now too.
[00:23:15] Jill Brook: So can I ask, what did you see in your daughter after 24 hours?
[00:23:19] Alison: Uhhuh. Well, the next morning she texted her dad and me and said, oh my God, I fell asleep within 20 minutes because for the first time in five years, my eyes didn't vibrate before I went to sleep. And then she woke up hungry and she hadn't been hungry in six months, so we went and got a breakfast. And she ate it and she ate well and it went well 24 hours later, after another day of, and well, what would he do is he'd have her work for 30 minutes and take a 20 minute break and work 30 minutes and take a 20 minute break, and then we'd have an hour and a half for lunch. So pretty much from about eight 30 to three 30 every day with that kind of timing we would spend with him. The next evening, she had a solid bowel movement for the first time in three months. And then the vibrating stopped
[00:24:16] Jill Brook: Wow.
[00:24:17] Alison: yeah, all the vibrating in her body stopped. And each day just one thing more would go away. One symptom. And you know, I could see it. So often when you were talking to her, her voice would quiver, her hands would shake, her eyes would kind of dart around, and that stopped happening. And I hadn't seen her, I mean, in years without some degree of that. And another thing that, I don't know whether you've ever had this happen, but she belched a lot.
I mean, she couldn't help it. Every time she put anything in her stomach, she'd belch for like an hour afterwards and it was uncontrollable and constant and that went away. And it was like things that she couldn't be imagining, let's just say that.
And so one by one more symptoms started going away, and at the end of the week, she was a completely different person. She probably would've said she was at 60 or 70% of herself afterwards, and before she was maybe at five or 10% of herself.
[00:25:22] Jill Brook: Wow.
[00:25:23] Alison: And you know, she got home. She said, I feel calm for the first time in years.
My heart isn't racing. And before she went, she had to stop her beta blocker. She had to stop all the stuff that she was using to accommodate the symptoms because he didn't want it interfering with her body's reaction and readjustment. So yeah. You know, getting a text from your kid saying, I slept better than I have, and I feel calmer and more at peace than I have in five years. I'm so happy. And and it, it went really, really well. But we found that she needed to go back every six to eight weeks, just kind of for a up for a day or two.
[00:26:05] Jill Brook: Hmm.
[00:26:06] Alison: because he did send her home with home exercises. Lots of home exercises that really helped. And that was a really critical component because you know, your brain doesn't reestablish new neuro connections.
And again, I'm not a medical person, so I'm not saying it right, but it doesn't establish the new synapses in the wiring for about six to eight weeks before your brain is completely rewired. And so if you're trying to train it to do something new, And so he sent her home with really great exercises for her to do.
So if she was out to dinner and she started feeling dizzy or nauseated, or her eyes started fluttering or whatever, she could just go into the bathroom, sit in the stall. And do these exercises with her thumbs and her hands and her eyes. And on her phone there was an app where it did, you know, visual exercises and she'd do it.
And since she'd feel fine and she could go back and finish the evening and then every day, it's fascinating. And then she also had daily exercises that she had to do, just whether she was symptomatic or not, that required help from another person just to kind of solidify things. And she did those. But she still needed him to kind of tune her up every few weeks.
And about three or four months ago, she started getting this really strange pain in her neck. And Dr. Lovich thinks it's her brain is getting back to work with normally, but we think she's got a combination of two things. Her dad has what's called reflex sympathetic dystrophy. Do you know what that is?
[00:27:44] Jill Brook: Oh, I've heard the name, but I am afraid I don't. I'm not familiar.
[00:27:47] Alison: Okay. It's a terrible pain syndrome. Basically, your pain signals in your body get locked in a loop where they keep sending pain signals even after the thing that's causing the pain is gone
[00:27:59] Jill Brook: Oh
[00:28:00] Alison: It's really, really, really bad because it can spread all over the body and it's considered the most painful syndrome you can have.
Her dad first figured out he had it when he had his achilles tendon repaired and he had horrible reaction. Luckily, we have a neurologist that's a really good friend and he immediately treated him, and that's the key to treating RSD. And so after a few months of treatments with spinal blocks and different kinds of things, he was fine again, but RSD and pOTS are related in that they're a dysfunction of the sympathetic nervous system. And so he thinks that she's kind of got a pain syndrome related to the RSD that just needs to be trained out. So she has been there for the last six weeks and has one more week.
Where she's been going to see him regularly throughout the week to kind of get that under control. And it's gone now and it hopefully will be completely under control. But if it's not, we'll go out to Denver every few weeks and have him tune her up and he's made such a difference for her. She's finishing law school this fall, she felt like she could go back. Yes. Isn't that wonderful?
[00:29:14] Jill Brook: Excellent. Congratulations.
[00:29:16] Alison: Yeah. So we're really happy about that. But she needs to finish it here because she started here and she, so she's seriously considering moving to Denver so she can be close to his office if she needs treatment and it, she can just go the next day, you know, and instead of having to wait or drive all the way out there, fly out there or whatever,
[00:29:36] Jill Brook: So just lemme ask. Five years ago, or even two years ago, would you have ever guessed that this type of treatment could have such a profound effect? And so quickly, because I'm sure people are listening, going, come on, this sounds...
[00:29:51] Alison: oh my gosh. No. Never in a million years. And you know, I wouldn't have thought outside the box like this either, because I'm used. Mayo is so respected and Vanderbilt's so respected, and the doctor we saw in DC is so respected and they do the best they can, but anybody will tell you that with these kinds of chronic conditions. Traditional medicine is not equipped to deal with them the way that they need to be. And it's not through anyone's fault other than maybe insurance companies not want, and, you know, researchers can't get the funding to do the research for it.
And, So, no, I wouldn't have, I just believed in going the traditional route but you get at a point where you are like, I'll try anything for her doesn't matter. And you know, he is trained in the neurochemistry and neuroanatomy and physiology of the brain. He knows what he's doing. He's not a neurologist, but he knows what he is doing.
He's highly trained. If we'd have seen 10% better, I would've been thrilled out of my mind and didn't even expect that. If we hadn't gotten to such a desperate place, I don't think we would've even done it because it would've so unexpected or unlikely that it would help her.
[00:31:04] Jill Brook: And so is it correct that, that all of this is through I don't know what you call it, but a type of physical therapy, this unusual type of physical therapy with the eyes and the hands and the things like that, but not drugs, not infusions...
[00:31:21] Alison: nothing. He in fact wants her off of everything because he wants the brain to operate the way it normally does so that no medication is interfering with its ability to retrain itself.
She can think clear. This is the other thing, this is really remarkable. This is the story I use the most to explain to people the difference in her. We had to drive to SA one a lot and had to drive a lot to horse shows. And I'd usually drive in a car behind her and she'd drive ahead because, you know, we'd need two cars, places.
And she'd always weaved to the left. And I thought, especially after she first started driving, oh, she's distracted. She's looking at her phone. She's knows she's not supposed to be looking at her phone. She's texting somebody. Oh, this drives me crazy. But she, she claimed, no, I'm not, I swear I'm not.
Well, as soon as we finished the week with Dr. Lovich she drove perfectly straight. And that's because she was off balance and she saw the world at a tilt and off kilter, and so she was driving what she thought was straight, but it actually wasn't straight. And she bumped into things all the time because she wasn't operating in the world properly, and she stopped bumping into things. She'd been learning how to golf and she couldn't golf when she got back cuz she taught herself how to golf based upon being unbalanced in the world. And so now she needs to completely relearn based upon operating correctly in the world. So those are the kinds of things that are like she didn't even really know she was weaving like this and now she's driving straight. So there obviously is something that's changed in her brain.
[00:33:02] Jill Brook: That is so fascinating. Wow. So I'm sure a lot of people listening are wondering, so is this something that only applies to the people with concussion based dysautonomia? Do you happen to know anything about that?
[00:33:16] Alison: I do know, and no, it does not. It is Postviral too. Postviral pOTS often occurs because of inflammation in the brain and or the disease progression or hanging around in the brain and doing damage to it just like the concussion does damage to the brain. So it's the same operation as far as the damage from what I understand.
So he does it a lot for Postviral POTS patients and he's treating a lot of long COVID patients, which is obviously postviral and seeing that he can help them too. And so, no, it is not necessary that you're POTS be a derivative of your concussions. It can be organic and or postviral or whatever, cuz it's the same retraining and healing of the brain by establishing proper and good synapses in there.
[00:34:12] Jill Brook: Wow. Well that is exciting and that is hopeful. Okay, so listeners, since you're probably curious, we looked it up and Dr. Michael Lovich, functional neurology for POTS is episode 52. And then pot's diary with Samantha from Colorado, who is one of his patients and also has a happy, hopeful story. And in fact, she is gonna go to school to work to do the same kind of work. That is episode 53. And so now you are giving us another hopeful story.
[00:34:44] Alison: But you know, it's transformative and it's transformative for me as her parent too. And we actually met, is it Samantha? We actually met her when we were there because she was interning with him. Because she's going into the same field, and so we got to meet her and it was wonderful. She's so nice and she's doing so well and she's hiking and doing a lot of wonderful things and she's in school doing really well and a rigorous school, so that was really neat to see that it's lasted so long for her too. That's the other thing, and not only changed quickly and so dramatically, but it's helped.
[00:35:19] Jill Brook: Right on.
[00:35:21] Alison: Yeah.
[00:35:22] Jill Brook: Wow. Okay. Well, Dr. Lovich if you want to start being our sponsor, you can contact us at StandingUptoPOTS.org. No, we're so grateful to everybody doing great work, and we are happy to spread the stories of whatever, you know, everybody's different, but it's really hopeful to hear this.
[00:35:44] Alison: It is.
[00:35:45] Jill Brook: So give us a quick snapshot of what your daughter's up to these days.
[00:35:50] Alison: She's living the greatest life. Well, she's out in Denver still right now getting treatment, and she's feeling so good. She's skiing every weekend while she's out there, of course, but something we would've never, ever thought she could do again, that's her second favorite sport of skiing after horse riding and She's out there skiing every weekend, having fun with friends.
She has so many friends there. And then she's coming home the end of this month and she has a remote job with a law firm as a clerk, a Denver law firm. So she's gonna be working remote here and doing summer law school. And then finishing her third year next year. And then we'll see what happens.
Whether she decides to move to Denver so she can be closer to Dr. Lovich or whether she stays here. But she's just so happy to feel like she can plan her future because as everyone who has POTS knows, you don't feel like you have a future that you can depend on. And she feels like there's enough stability that she can plan, and that's a beautiful feeling that we all take for granted when we're healthy. So she's just a happy kid.
[00:36:57] Jill Brook: Yay. Well, I'm so happy to hear such a hopeful story and it's so nice to hear about, you know, about you and her dad being so supportive and just yay all around. It warms my heart
[00:37:12] Alison: You could do a whole podcast on just the parents and how hard it is on them watching their child waste away in front of you and feeling so powerless. It's horrible. I feel so bad for so many parents that go through it and don't know what to do.
And, you know, we're really lucky we have the resources to go to these places and we have the health insurance to go to these places. And Dr. Lovich, for us, he was not covered by our health insurance. We just made it work and we were able to make it work, and that's not something that's possible for everybody.
[00:37:47] Jill Brook: Well, we're so glad you're sharing your story though, because in a way you were a little bit of a Guinea pig. You know, my understanding of his program is that the thing you have to lose is money and time, right? Like my understanding is there's nothing too dangerous that can happen from doing these. Um, but you could lose a small fortune going back and trying and doing all this. And so people who can't afford to do that, if they go test it out and report back to everyone else, that is helpful.
[00:38:13] Alison: Absolutely. And you know, we have saved so much on medications and other visits to other doctors because you have copays, you have this, you have that, you know. And obviously if she's able to be a productive member of society and start having her own income, that's gonna be less of a drain on us as as a family.
[00:38:33] Jill Brook: Well, I'm so sorry for all you guys have been through, but it's so great to see what's possible and please give her all of our best. And do you have any final words to share with anyone? Anything that maybe you would've wanted to hear from someone else when things were at the worst?
[00:38:52] Alison: Don't give up. It's easy to give up. It's easy to think we can't figure it out. She was ready to give up on keeping trying. I had to say, no, we're gonna go do this. It's hard. It's hard to know how much to push as a parent or a supportive partner, but don't give up.
There are ways to get help and reach out to anybody you can on all the Facebook POTS pages and listen to the POTScast and, you know, immerse yourself as an advocate on behalf of somebody's POTS because they don't often have the brain power to do it or the, you know, physical power to do it. Immerse yourself in everything you can, because there are just tiny bits of information that you can put together. I learned about the POTScast from one of my Facebook parent POTS groups. Somebody just mentioned it and I thought, oh, there's a POTScast.
It feels hopeless, but it isn't. And I really don't wanna minimize how hopeless it feels, cuz I know how dark and hard it can be sometimes.
But I do believe too, that more and more we're gonna learn more mainstream ways to help now that we have long COVID, because there's so much research going into that because so often it's turning into dysautonomia and so there's more motive and more money going towards research, thank goodness. Now we go to doctors and they don't say, oh, what's POTS?
I've never heard of that. You know, more and more are starting to be familiar with it. So things are starting to get a lot better in all disciplines and you just hang on a little longer and keep sticking with it.
[00:40:33] Jill Brook: Amen. Well, Alison, thank you so much. Please give our best to your daughter. We appreciate you guys, and I know that everybody listening is cheering for you guys and wishing you all the best going forward.
[00:40:47] Alison: well, I can't thank you enough for this podcast. you've changed our lives by having it and I don't wanna cry, but if your goal was to help one person, you've done it and I'm sure there are a lot more, and thank you. You feel so much less alone and you make a difference.
[00:41:04] Jill Brook: Well, I'm gonna use that as a shout out to invite everyone else to share their stories too, right? Because Samantha shared her story and it helped you, and I'm sure you sharing your story is gonna help others and let's just keep it going. So now I have chills too, so you're awesome. Thank you. Okay.
Hey listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.