E149: Tried all the recommendations? What to do next?

Episode 149 June 27, 2023 00:51:53
E149: Tried all the recommendations? What to do next?
The POTScast
E149: Tried all the recommendations? What to do next?

Jun 27 2023 | 00:51:53


Hosted By

Cathy Pederson Jill Brook

Show Notes

Jill and Dr. Cathy Pederson discuss what to do after you have exhausted practitioner recommendations. There are lots of ideas provided, as well as tips on how to evaluate each potential new treatment. Great episode for those of us holding onto hope of symptom improvement.

You can read the transcript for this episode here: https://tinyurl.com/potscast149

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Episode Transcript

What to try next? [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 are discussing the quest for new treatment ideas that many of us undertake when we've exhausted the conventional POTS treatments. It's that hunt for something else to help us feel better, which can lead us into the worlds of alternative medicine, diets, supplements, newfangled gadgets and internet gurus. To be clear, we are not recommending this or condoning it or saying that it's safe or smart, but we know many patients do it and heck, I am always experimenting with something new. So we thought we should discuss it. And talk about potential strategies, pitfalls, and ways to make it safer and more effective and maybe have a few laughs about our past misadventures along the way, because I know I've had a few. So my two favorite people are here today. Our first guest is the ever wonderful and wise president and founder of Standing Up to POTS, Dr. Cathy Pederson, who is a great person to ask about this because she's got a PhD in neurobiology and a long career as a researcher to bring to her search for more ways to help her daughter feel better. And Dr. Pederson, thank you so much for speaking with us today. [00:01:25] Dr. Cathy Pederson: Thank you for having me, Jill. It's always a pleasure. [00:01:28] Jill Brook: And then we're going to have a guest appearance by my husband today too, because he's going to just do something a little experimental and fun. Hi Mike. Thank you for being here. [00:01:38] Mike Brook: It's my pleasure as always. [00:01:41] Jill Brook: So this topic of searching for new treatments when you've kind of already tried all the normal stuff, does this topic resonate with you personally for your daughter, Dr. Pederson? [00:01:54] Dr. Cathy Pederson: Absolutely. And I have to say, honestly, for us, it's been sort of a mixed bag. We went through a couple of years where we were really doctor hunting, hospital hunting, medication hunting, therapy hunting, all of that stuff and trying very hard. We were actually at that point keeping a symptom chart. Looking for patterns. You know, we changed medications. Did that make her better? Did it make it worse? What were her symptoms? Weather, you know, tens units, physical therapy, all of this stuff. But I have to say, and it may be a little bit different when you're dealing with a kid than when you're dealing with an adult but she at some point wasn't wiling. To do that anymore. She didn't want to go to the doctor, she didn't want to try a new doctor, she didn't want to try a new medication. And I have to say, I can't blame her. You know, I think it's hard to hold out that hope when you try so many things and, and they don't really work. But I have to say that she is headed towards her senior year in college and she's willing to let me try again to help her. As she's looking out into her adult life, there's something about graduating from college and wanting to live independently and do all of that, that she really wants to try to be as strong as she possibly can. So we have gone through phases of this for sure, which I imagine other families have had as well. [00:03:23] Jill Brook: Yeah, absolutely. And I think part of it has to do with how good or bad you're feeling at the time. I know that myself, I have at times been absolutely desperate to feel better and try more things, and I'm lucky that right now I'm at a point where I feel pretty good, kind of good enough, and so the pressure is off. And I also understand that people sometimes have this idea of a toxic hope that I've heard online. That can be attached to always getting your hopes up that something new is going to help. And so, I don't know if you've heard that, but I don't know exactly what that means, but I have this sense that toxic hope is that it's not productive to have unrealistic expectations, maybe. [00:04:06] Dr. Cathy Pederson: Yeah, I haven't heard that term, but I can see that. Right. And I think my daughter went through that where she felt like we rested so many hopes and dreams on the next doctor, the next treatment, the next intervention, whatever that was. And when nothing seemed to help, she felt like, yeah, it was counterproductive. It was taking too much of her energy. Actually, I think both in the travels and in getting those hopes up. So I get that for sure. [00:04:37] Jill Brook: Yeah, and I know that we are often on the hunt for new ideas as individual patients, but also as a nonprofit organization funding new research. We do that here at Standing Up to POTS. So, Dr. Pederson, do you want to give a quick rundown of the studies that we have funded that are looking into new ideas to improve POTS? [00:04:59] Dr. Cathy Pederson: Yeah, it's really crazy to think back and Jill and I were both together from the beginning of Standing Up to POTS. And to think about where we've come in the last nine years or so is crazy, but we've awarded more than $368,000 to top POTS researchers around the world, and some of them have appeared on the POTScast. So Dr. Heather Edgell talked about the Q collar, which puts a little bit of gentle pressure on the neck as a way to perhaps decrease some of those symptoms. That was episode 25 if folks want to go back and listen to that. We just recently released an episode on long COVID and inflammation coming out of Dr. Lau's lab in Australia, and they're really interested in looking at what's going on in the body as people are moving into long COVID. So looking at inflammation, at neuroendocrine dysfunction and autoimmunity, and that's one of the silver linings of the pandemic is that you've got lots of people getting sick from the same trigger at the same time. So that was episode 1 46. And then we've got some others that are in the works that we haven't taped episodes for yet, but we hope to soon. And one is with Dr. Boris and Dr. Krystal who are really looking at effective treatments based on symptom clusters for folks with POTS. So if you tend to be a fainter and have headaches, maybe there's a medication that's best for you, but if you have fatigue and GI issues, maybe there's another medication. I think right now we're not doing that very well in the medical field. I think a lot of it's sort of trial and error. We funded a research project from Dr. Raj looking at carbon dioxide levels in the blood, and he's really interested in the chemoreceptor activity in the body and how that relates to POTS symptomology. And that could lead to some great treatments if he finds some issues there. So that's really exciting. And then the last one that we just funded again is out of Australia, and it's looking at a novel exercise technique that might help to improve bar receptor function. Baroreceptors are pressure receptors, and so again, we're hoping that that will help. That'll be a new treatment that folks can use. In addition to that, in the last couple of months, Standing Up to POTS has partnered with Argenx, which is a pharmaceutical company to help support them as they try to recruit people into a clinical trial for a new medication that they've developed for folks with post COVID POTS. And so we are funding research. We're pretty discerning, to be honest, for things that we think will actually be fruitful and beneficial for the POTS community. We don't fund every proposal that comes in. We're picky about their protocols and the science of that, and it's pretty exciting. I can't wait to see what the next couple of years bring. [00:08:08] Jill Brook: So more things in the works so that hopefully we don't have to just go it alone and each try to individually find some random thing that can help. I know that I long ago gave up on finding the one thing that would cure me. So now I'm pretty happy just to find new things that help here or there. Or another 5% maybe. And I'm happy to string those together. But can you remind everyone what our medical advisor Dr. Artur Fedorowski said to you in episode 1 23? because I thought that was kind of inspiring. It made me happy to hear it. [00:08:43] Dr. Cathy Pederson: It was really beautiful. This was a episode about the clinical trial. And he's an expert on that clinical trial. And if folks haven't listened, listen to the last 20 minutes of that interview. It was really, really beautiful. And what he said really resonated with me. He said, you know, diabetes used to be fatal. A hundred years ago when people got diabetes, they would die because they couldn't control that blood sugar and eventually someone discovered that they could isolate the insulin from the pancreas of pigs, and if they gave that to people, that that helped them to control that diabetes and be able to live a better and longer life. And so that one discovery, that realization took diabetes, which had been fatal and made it into a manageable disorder. Does it still take some work? Of course, right. Are there things that need to be done? Yes. But it gives us hope that there might be that one breakthrough that we need that's coming and we need to stay with it, right? So we all need to be patient and work together for that breakthrough for our POTS patients, and stay hopeful until it comes. It could come next year, who knows? [00:10:07] Jill Brook: That's amazing. Yeah. Okay. And so until our insulin comes along, let's talk about the ever popular POTS pastime, searching for something new to help us feel better. And again, obviously if someone has a healthcare team that can guide them in this endeavor until they feel good enough, then that's ideal and they don't need to go looking on their own. But for many of us, we have already tried every single thing that our medical teams have to offer, and we're still not content with how we are doing and how we are feeling. So what can someone do next that's reasonable? [00:10:48] Dr. Cathy Pederson: I think this is really common issue, right? Where we go in and we maybe think that the medical team can quote, unquote fix us. And for my daughter, you know, she's better, but she's not great, not by any means. And so I'm always looking for the next idea. And I have to be honest, Jill, I'm the editor-in-chief for the POTScast and so I listen to virtually every episode of it and I have picked up some tips from a variety of these episodes that have really ended up to help my daughter. So let me give our listeners a couple of examples. One was a conversation with my dear friend Jill Brook. It turns out I had to go searching because we've done a lot of episodes together to find the episode where you talked about this. And it was in episode one, if you can believe it. Our very first episode together and Jill was talking about using bike shorts for abdominal compression. So my daughter had had the waist high ones, you know, she'd gone in and been measured and they were prescription compression hose and she hated them. And finally I talked her into some compression stockings that were a little cuter. We got them off of Amazon and man, last summer we added those bike shorts and she's so much better. And so here it is. It was my friend Jill. It was us talking together that helped my kid. Some of the other ones are from some of the practitioners that we had on. So in episode 91, Dr. Beltran was talking about vitamin D. And how important that was, that you need it every day? I increased my daughter's vitamin D. I Frankly, I increased my own vitamin D I feel a lot better actually. So that was helpful. And then one of the big ones for us more recently, Was from Dr. Raj, Dr. Satish Raj, who came on for episode 100. We were very excited about that, right? To have a big name like that for our hundredth episode. But he talked about there were some medications that POTSie should not take, and it's a class of drugs called the SNRIs, the serotonin, norepinephrine reuptake inhibitors, which are used for depression. And he listed some by name and one of 'em was Wellbutrin. My daughter is taking Wellbutrin, so I'm like, honey, we gotta get off of this, right? Let's watch to see if you have a symptom flare or anything. Well, it took her off of that Wellbutrin, and she didn't feel any different symptom wise, but she stopped a lot of that hyper startle. So she's got a bit of that hyperadrenergic stuff going on, and boy, once that sympathetic overdrive hits, she can't slow it down. It's so much better being off of the Wellbutrin. So the POTScast is a great thing and I hope other folks are learning things as they're listening, that they're trying and hopefully helping their own situation. Support groups I think are another great way. Standing up to POTS has a couple, but there are many of them on Facebook and really, really early on when my daughter was still 10 11. Someone said, you know, if you think your kid might have mast cell, maybe you ought to try antihistamines. And they gave the regimen that you should use. I tried it with my daughter and Oh my gosh, helped her so much. So you gotta be a little careful in the support groups. Right. Look at your source and if it seems reasonable, but, wow. Interesting. I think there are some other just really good basic things that you can do for overall health. And Jill, I know that you have done a number of episodes, you and Mike together on nutrition but I'd love to just hear you review a little bit what maybe all of us should be doing as far as nutrition, the patients, but also their families. [00:14:56] Jill Brook: Sure. And I know that Mike mentioned in his POTS Diaries episode that he thinks that nutrition actually plays a decently big role in his ability to be a good partner and caregiver because he thinks that without stable blood sugar, the energy and the mood to be that person would be impossible. So yeah, I think the basic good nutrition habits, the eating real food instead of processed food, you know, not too much looking out for what you react to, trying to avoid any nutrient deficiencies by just having good balance. Avoiding gut dysbiosis that can come from it can come from a lot of things and often it's not your fault, but also just, you know, normal American bad habits of too much sugar and too much processed food. Too much alcohol can get some decently strong gut dysbiosis going. Inflammation from an overly processed diet. You know, these are things that frankly maybe most Americans have some of, just because the normal, average American lifestyle isn't that healthy and these things can lead to so many symptoms on their own now, many of which can overlap with bots or MCAS or some of our comorbidities. And so just kind of cleaning up the basics and feeling better that way I think can go a long way. I know I'm used to hearing people say how much better they feel when they get those things in line and those are just normal healthy people who just didn't feel their best. So I guess one silver lining of our kind of bad typical western habits these days is it leaves a lot of room for improvement and if you put the work in, sometimes you can get to a better place by quite a bit. [00:16:50] Dr. Cathy Pederson: Yeah, and I like that idea. I think in one episode, Mike talked about being in training like an athlete, so that he can be a good partner. And I like that idea for family members, for parents who are trying to be stable and supportive and all of that. It's much better if you're healthy and you're feeling good and you're giving your body what you need to be healthy and feel good. Yeah. I think there are other things that are important too though, you know, so nutrition I think is critically important. I think sleep is another thing that's really important and so having a good sleep schedule where you go to bed at the same time, you get up at the same time. Think about the routine that you do when you've got little cutie pies at home. Where you give them their dinner, you put them in the bathtub and let them play, and they're warm and they're happy and you rock them in the chair and you read to them and you brush teeth and you go to bed. You've got this routine and their little bodies know that when we go through this routine, we're preparing for sleep. I think that as people with POTS or adults, we ought to be doing the same sort of thing. Give yourself a good bedtime routine. It doesn't have to be the same thing that you would do for a child, but turn off those screens an hour before bedtime. That blue light can make it harder for you to fall asleep. So put the phone away, turn the TV off, read a. Or listen to some music or have a nice conversation with your partner or loved one. Could do some meditation and, and just try to have that wind down where you're doing that same routine every night before you go to bed. If you live in a place that's got a lot of noise, using white noise can help. I have a little fan that you'd put on a desk for the noise, and I use that as white noise so that the neighborhood dogs or traffic doesn't wake me up in the middle of the night. And then of course, having a dark room, turning the alarm clock away from the bed so that that light is not in your eyes. And it may even be the on the smoke detector covering that little light, putting a little piece of masking tape on there so that you've got a nice dark room to sleep in. So I think sleep hygiene is important. I think exercise could also be important and you have to pace yourself. So I think we've talked many times before how different my daughter's POTS looks from Jill's POTS, right? And what my daughter can do versus what Jill can do for exercise are radically different. So it's going to be different for everybody. You've gotta figure out what's best for you. And so for my daughter, she has a real energy envelope where if she stays within that, she does pretty well. But if she pushes too hard, then she ends up with rebound fatigue and really struggles for the rest of that week oftentimes. Jill's different. Why don't you talk about what exercise looks like for you. I don't think you ration in the same way that Lily does. [00:20:03] Jill Brook: Right. My exercise situation is a little bit interesting because it seems like I can do unlimited exercise so long as I stay kind of cold or chilly, and I keep my calf muscles pumping, so this keeps me active, sometimes looking weird, sometimes doing weird things. I think I've mentioned in some episodes that I can walk uphill very nicely because my calf muscles get a big range of motion and a nice squeeze. But if I walk down a steep hill, I will walk backwards because without that calf muscle pump, I kind of go downhill sort of quickly. I can cross country ski, same thing uphill. But as I discussed in the episode with Mike, when I go downhill, he is my brakes so that I can keep my calves pumping because I cannot snowplow. If I snowplow, my legs hurt really bad. I get dizzy, and I haven't done it long enough to find out if I faint. So yeah, as long as I kind of keep some of those rules in place, then my energy, if anything is too much, I'm hyper and I sometimes feel like a caged tiger that wants to run up a mountain. So very from Lily. [00:21:20] Dr. Cathy Pederson: So you're trying to blow off some of that energy. Lily would accept some of your energy. So send it from California to Ohio anytime would be lovely. We would love that. So people just need to realize that it's different for every POTSie. And both of you have POTS and both of you have bad issues with your POTS and are pretty symptomatic, but it can look radically different. So you've gotta figure out what's the right thing for you. And then I think mental health is also really important as well. And I think that also varies. What makes people feel good. I would say something like sit outside when possible, connect with nature, even if it's five minutes a day. Do it when it's not too hot, not too humid. We don't want you to get dehydrated, but there's something about hearing the birds singing or just connecting with nature for a few minutes that can really help that mental health. In that same vein, do something you enjoy every day. For my daughter, it's video games. It may be having a nice conversation with friends or family. It may be watching your favorite show, whatever that is. Try to do something that makes you happy every day, and then really try to stay in touch even when you're not feeling good. If someone texts you, send that text back. Say, Hey, boy, I really appreciate that. Or if you feel like you haven't heard from folks in a while, maybe you need to reach out, but try to stay in touch a little bit and be connected to the people that you really care about in your life. [00:22:51] Jill Brook: Yeah, so if I could just summarize, I think what you're saying is that it's always a good idea to get back to those foundational health things, and obviously it's safe, it's low risk to focus on your sleep, your basic nutrition, your exercise, your mental health. Your relationships and get those as good as possible because they might not directly help the POTS, but at least it's better to only have POTS or whatever other comorbidities instead of POTS on top of a giant pile of other more foundational health problems that are commonly plaguing much of the modern world. Right. [00:23:30] Dr. Cathy Pederson: exactly right. Absolutely. [00:23:33] Jill Brook: Okay, so I'm guessing we have a lot of listeners who are saying, oh, I did that, did that. What next? Can I ask? Like, what next steps have worked for you and your daughter? [00:23:45] Dr. Cathy Pederson: Yeah, so, we've tried a lot of different things over the years. My daughter's been sick more than a decade now, and there are some that have worked really well that are over the counter sorts of things. So magnesium citrate. Jill and I were having a conversation a week or two ago on the phone just chatting about a variety of things. And magnesium has helped her as well as Lily. And so magnesium citrate is what the doctor at Cleveland Clinic really recommended for my daughter and it really helps her to sleep at night. So if she misses her nighttime meds including that magnesium citrate, it makes a big difference. She does a ton of salt, so we make our own salt capsules, we buy the little capsules and then we buy five pounds or 10 pounds of Himalayan salt and we make those for her. And then we use salt sticks. So those are some of the over the counter things that we do. Some other things, the compression socks and bike shorts I mentioned before. And that combination thank you, Jill. Has made a big difference for her, so that's been good. We also started, and this has been quite a number of years ago, again, to sort of help her sleep cycle -light therapy. And so we bought a 10,000 lumen light from Amazon. It was about $80, and you're supposed to point it at your chest, so it's not really in the face, but pointed at the chest. And she would do that for about 20 minutes in the morning and especially in the winter. That really helped with that sleep cycle, keeping her on the same light dark cycle that she should be on instead of being up half the night. for her, staying within that energy envelope is really important. And so I have to say again, she's the opposite of Jill. Stamina is not her friend. I think Jill has amazing stamina and my daughter does not. And so I bought her a wheelchair when she was 11 and when there's any kind of excursion that requires any kind of significant walking or standing. We take the wheelchair and we named it for those of you that are parents out there. Cause she doesn't like calling it a wheelchair and she was 11, so it's name is Blue Lightning. And so we'll take Blue Lightning out when we're going to the zoo or any place where there's , a lot of that walk and standing. And then the last thing that's really helped her a lot coming out of the pandemic is the N 95 masks. So she's still in college when she's with a group of people or in the sorority house. She wears that N 95 mask all the time. And the truth is she doesn't get sick more than anybody else does. In fact, her immune system's pretty resilient, I think. But when she gets sick, and I don't know if this is the same for you, Jill, but when she gets sick, she does not bounce back. So for me and for a lot of our healthy listeners might bounce back in a week or so from the flu or something. It'll take Lily four to six weeks to get back to her baseline. Do you have issues like that? [00:27:11] Jill Brook: I do not. My immune system is so overactive about everything that I go in the other direction that you know, vibration and smells and things will set off my immune system, but it's never underactive, I think. [00:27:26] Dr. Cathy Pederson: Well, she struggles with the vibrations and the smells as well, but yeah, she just doesn't bounce back and it may be the different trigger. Right. Her started with mono. I think you started with the wisdom teeth, so maybe there's some immune difference there, but that actually has really helped to keep her on her feet during the semester. As she gets fatigued, she's more likely to get sick and like I said, she just does not bounce back. [00:27:53] Jill Brook: So that's great that you found some things that helped a whole lot. Have you had any major fails or disaster stories in trying a bunch of things? [00:28:04] Dr. Cathy Pederson: We have not had any major disasters. I'm always experimenting. I've been really lucky to find physicians who are willing to work with me and try my crazy ideas and so she had been on Concerta for a long time. Again, she doesn't have ADHD. We were using it for her fatigue to try to keep her on her feet. And I saw in the groups that a lot of people were on Adderall, and so I thought, well, maybe we'd be better if she was on Adderall instead of Concerta. And that actually triggered big MCAS stuff is what I eventually figured out. And it actually says something on the warning label about that, and I was like, oh, okay, we're done with the Adderall. So Adderall was not a good try for her as well. We went back to the Concerta, but actually we tried again and we went to Vyvanse and oh my gosh, it's so much better for her than the Concerta was. So, you know, I would take some of those fails if we end up finding something that maybe helped. And I would have to say we didn't have anything that seriously harmed her. And I felt like as her mother, I had to keep tinkering to try to help her get to be as good as she possibly could. So what about you, Jill? Have you tried? A lot of different things. I mean, what have you done as sort of that next step past your healthcare practitioner's guidance? [00:29:35] Jill Brook: So, You might recall that I had a 17 year diagnostic delay where I had so many things wrong with me, but I didn't even know what the cause was. Then I had three years even after I had diagnoses where I didn't have an effective treatment. And so I'd say during those times, actually I tried so many things that Mike and I actually wrote a poem about it a while ago. Hey, Mike, do you mind reading the poem? [00:30:05] Mike Brook: I would love to read the poem. Thank you, Jill and I [00:30:08] Jill Brook: He's got the thespian voice. [00:30:10] Mike Brook: Right. Jill and I process things through silly pictures and silly poems. But this is really straight from Jill's mind. And so I am honored to get to read it, Jill. So thank you. This is called "before you judge my salt lamp." So an unusual title, but I think it's apt. Here we go. I'm sure you think I'm crazy hoping this will help at all. And I know it's just a chunk of salt you plug into the wall. But you see, I've tried a million things and all have been in vain and the one worst thing that I could do is nothing for my pain. Fancy team of specialists. They were my first reliance. I followed each one's treatment plan with absolute compliance. I adopted countless diets and was faithful to each one. I moved six times for cleaner air, good weather, and more sun. I've managed all my stress and fear and dealt with my self-loathing gone organic in my food, my soap, my bed, my clothing. I shelled out for turmeric. And the best omega-3, vitamin D and C and K and B certified allergen free. I made my bedroom dark and cool with filtered air and sound. I slept on sheets with silver threads connected to the ground. I saw a guy in Chinatown. He stuck me full of pins. I prayed, confessed, and did good deeds to offset my old sins. I scrubbed my life of microwaves, emf. Complaining. I spent a year on CBT. Another on neural retraining. I tried six forms of therapy for muscles, mind and spirit. I attempted hyperbarics, gargled hard enough to hear it. I woke my mind to Reiki, Rolfing, even Feld in Christ to infrared light, not eating at night. An earlobe vibration device. I've seen a bunch more specialists. They all just shook their heads. I've done a million Googles and I've grasped a thousand threads. I'm not a crazy person, not naive, I'm not a fool. But once you've tried the normal stuff, What else are you to do? No matter how my salt lamp brings on looks most disapproving. What I need most is confidence that I'm not done improving. So no matter if it's potions, tinctures, poultices, or cupping, the essential thing, at least for me is never giving upping. So you understand this salt lamp is quite logical in scope for a persevering fighter who will never give up hope. [00:32:49] Dr. Cathy Pederson: Wow, that was really beautiful and I feel the hope in there. And I love that you listed all these things that you've tried and we've tried a lot of those as well. And it's amazing how you do open your mind to things that you would never consider if you didn't have these lists of symptoms that no one can help you with. I love that. That's really beautiful. [00:33:16] Jill Brook: Yeah, well, you know, the more things you fail, the more you run out of things with randomized control trials to do, right, you have to lower your standards a tiny bit. For every new thing you try. And again, I'm not saying it's safe or effective or that I recommend it but I think that unfortunately we get in that position sometimes give up or keep trying things that are ever more out there. So I think of that I used to judge people, and I guess for the record, I don't actually own a salt lamp. That was just a symbolic treatment representing that type of thing. But now when I see people who are trying things that have maybe pretty low evidence, but also low risk, I do think of them differently. Like maybe there's somebody who's been through a lot. And it beats giving up, at least for someone like me who kind of thrives on the distraction and on the hope that maybe this is the frog that I'll kiss that turns into the prince. And you know, every once in a while one of those frogs does turn into a prince and that keeps me going. [00:34:25] Mike Brook: When you first shared that poem with me I thought it was amazing and I'm glad that it's been sort of kicking around in our household for a couple years. We've kind of been tinkering with it a little bit, but from the point of view of A spouse and caregiver. To me it felt like a pep talk too, you know, because it came with a level of optimism that I thought was really appropriate. And at the beginning of this podcast, you talked about this toxic optimism, I think you call it. And I'd never heard of that word, but I can see optimism or hope can sort of engulf you. But I feel like what I like about this poem is that to me, it puts it in just the right spot and it causes me as somebody who's a little bit outside of this phenomenon, to think about that idea of stacking up these little wins. because these are all little things. And if you can get a 1% win out of a salt lamp or a 5% win out of any of those other things that we talked about in that poem, then that compounds and that builds up. And so it was very eye-opening for me to see how you could Sort of take this concept and put it together and have that be kind of your way forward. And I think you do that, Jill, and it definitely has paid off for you big time. [00:35:39] Jill Brook: Well, and hopefully my duration without answers or effective treatments was longer than people are going nowadays. But there were definitely times when I was desperate, like truly, truly desperate, and I think I've mentioned on the podcast that, you know, there were times where Mike's jokes and the distraction or hope of the next thing helping was the only thing that got me through. And I was very fortunate because I eventually did find a therapy that really, really helped enormously. And I think the only reason I lasted in the game long enough to see that day was The hope that some of these things gave. But like I said, I, I hope that there's a lot of progress now and nobody's sitting around 20 years waiting to feel better. Yeah. [00:36:30] Dr. Cathy Pederson: So Jill, Based on all of that, what has actually worked for you? What has made you feel better? [00:36:37] Jill Brook: So there's been so many things that probably I do a lot of them automatically in my routine without even remembering I do them. But things that are on my mind lately that have helped a lot. One is the low dose s naltrexone for pain and inflammation, and I think that's not that far out there now, but when I started it was. Something that makes a huge difference for my sleep, and of course sleep is, everything is Mike gives me a massage every single night and We've just figured out that if I get some of my muscles to be sore and then if he squeezes them at night, then that is my off button. And so he is, I know wonderful and I don't deserve this, but for like 45 minutes at night, right before bed, he watches tv. He watches his own high adrenaline tv, and I listen to my low adrenaline podcasts and he'll squeeze, you know, my feet and my hands and my shoulders. Kinds of things and that really makes me able to sleep when I otherwise wouldn't. Lately I have been pleasantly surprised at how just eating a little bit of raw ginger every day really helps my gut motility. And I know that some of the gut motility drugs are based on ginger. So based on that, I just tried some raw fresh ginger and it works amazing, wish I discovered that decades. I too have had luck with an infrared light that can help my mast cell activation syndrome a lot. It can prevent a daily flare that I would otherwise tend to have. It can even sometimes help stop a flare, mid flare. I'm thrilled to say. And then another thing that was kind of a mental health breakthrough for me I think Mike mentioned that we sometimes turn our emotions into cartoons. And so we have the Doodle Thru comics that we have made, and I can't believe how much that took a weight off my shoulder. And it got me in the habit of looking for the humor in otherwise terrible experiences. And I think that really has ended up affecting my health globally by doing that. So I, I think those are the main wins I can think of right now. [00:38:48] Dr. Cathy Pederson: And it encourages so many other people who feel that same way. So hopefully you're encouraging them to see the humor in their own symptoms as well. Yeah. What about on the flip side? Any big fails, disasters, regrets for anything that you've tried? [00:39:05] Jill Brook: Yes, I've had a number of big fails and I guess I wouldn't say regrets because everything I did that I sort of would get close to regretting I only did because I was desperate at the time. And I do feel like I only just barely squeaked by to make it through. So whatever I had to do, I have to, you know recognize that it eventually worked. But yes at one point for my pain, I was going to try cannabis and I had decided it was going to be cannabis infused olive oil because I didn't want to, you know, eat the unhealthy cookies or brownies or whatever, and I didn't want to, Ingested in other ways. So I made it myself following YouTube videos. I apparently did it wrong. I gave myself really bad food poisoning. That was a mistake. I would not do that again. Adderall turned me into a monster. Steroids turned me into I mean worse than a monster. Like I actually feel like I know what mental illness feels like now because I think steroids give me mental illness. I wanted someone to break into my house because I felt like beating someone up, and that was, I was told on a low dose of steroids. The poem was not exaggerating. We moved so many times in search of a colder temperatures and then more sun and cleaner air, and wow. Is that a waste of money to move a lot? I once used a vibrating massage gun to relax. It did an amazing job making my muscles relax and feel good, but that's how I learned that I have an allergy to vibration because I went into anaphylaxis and couldn't get up off the floor. That was pretty bad. And I guess I'd say, Hey, if you have mast cell activation syndrome, be really careful about what you try. Maybe work with a doctor. Now I am a little smarter after some of these experiences, I consult an osteopathic physician about new things to try, hoping to avoid some of these fails. And so, for example, right now she has me trying a hyperbaric chamber and I'm not sure if it's working yet, but she kind of helps guide me with things that ought to theoretically be more likely to be safe and effective. So probably I've had more fails than that, but those are the ones I can remember. [00:41:26] Dr. Cathy Pederson: Yeah, and let me just chime in there, that an osteopathic physician is a DO, so they do really everything that an MD does, but they're more holistic in the way that they look at things. They will do manipulation, that sort of thing. So that would be a really good person or a specialty to, to talk to about some of these things. Yeah, it's important to always have hope, I think. [00:41:51] Jill Brook: So if someone does want to try something new, but they don't want to make the mistakes I've made, how can someone figure out what to try next? Like what is reasonably safe and promising? How do they find that thing? [00:42:06] Dr. Cathy Pederson: That's a great question. So I think the first thing is where did you hear about it? Did you hear about it on the POTS cast? We're pretty careful. We actually do our homework before we let people come on, and so if you heard it on the POTS cast, that might be a good thing to try. So you've gotta decide whether the source is credible or not and then what kind of claims they make around the therapy. Anytime it sounds like it's too good to be true, it probably is too good to be true, right? So I get all sorts of email and sometimes people are trying to pitch things to me to have me promote them, I guess. And so I got one a month or two ago, and I don't even remember what the product was anymore, but I read down to where they said that the, quote unquote bad cells, toxic cells were eliminated naturally or by your body through sweat, urine, feces. Let me tell you folks, I'm a physiologist, right? Okay. That doesn't happen. There are no cells in your sweat, number one. And if there are Cells in your urine or your feces, they're not coming from the rest of your body. They're actually from those tracts. So in the urinary system you can have a few cells in your urine, but it's coming from that area. In the feces, there are dead cells, but they're coming from the GI tract, right? They're not coming from quote unquote toxic cells and then getting into one of those places to be gotten rid of. So you see anything like that go running, that's not what you want. You know, you gotta be a little careful about testimonials instead of science. But Jill, as you pointed out, you know, as you get off that beaten path a little bit, there isn't the science, so the next thing I would do as sort of a litmus test is, is it likely to cause harm? Is this something that could make that person a lot worse if it went awry? And so if it's something that's not invasive, it's not something that you're taking into your body, it might be worth a try. But you know, even like the massage gun that you were talking about, which might be fine for your husband or for me, but for you caused problems. Right? So it's difficult, but if you're looking at something like a light, And I'm thinking about trying the infrared light for my daughter, she uses a regular intense light and I feel like it's worth a try. I feel like the risks to something like that are quite low. Price is something too. These often are expensive. They're not covered by insurance, so is it something that you can try cheaply? And then maybe if it works, then you buy a little bit better product to go with it. If it's more than you can afford, it's probably not worth it. You know? I mean, you have to sort of balance these things, but you've gotta balance family finances with what you can actually do. And then I always would encourage people to look in the scientific literature. And there's a really easy way to do this that's free that I think a lot of people don't realize. So we all know about Google, right? Well, there's something called Google Scholar. So if you type into your web bar scholar.google.com. That takes you to Google Scholar. Google Scholar is like millions of scientific papers that are online. And so we could go back to the salt lamp example, right? So you could type in salt lamp and then I don't use any connector words and I don't use any general words because it changes the way that it searches. So I type in salt lamp, postural, tachycardia and that'll get you to the POTS papers and see if anything pops up. And if nothing's published, well then, you know you're off the beaten path again. Then does it sound like it's something that's going to cause you harm and can you afford it? What was the source? But if something's published, look at the titles. Are the titles for it or against it, or are the reviews mixed? You could read the abstract right below that title, and often the last sentence or two are the main conclusions of the entire paper, so you don't have to read the whole paper. And see, do they agree with each other? And again, are they for that treatment or against it? So one that you could look up are the magnet bracelets and that sort of thing. I think there are some papers that are published on that. I don't think they've shown any efficacy at all, any helpfulness at all in treating those kinds of symptoms. So I think that's a really good way to just be sure that you're not going against the science. If there's science there, I'm a big proponent of trying to follow that science. [00:47:16] Jill Brook: Yeah, for sure. And aren't they thinking about making all publicly funded scientific articles free to the public soon? [00:47:25] Dr. Cathy Pederson: I haven't heard that. PubMed has a bunch of them that are already free. I don't know about all of them being free, but PubMed is another great place to look and actually Google Scholar will get you there and to other sources as well. [00:47:40] Jill Brook: Wonderful. This is a lot of great information. Is there anything else that we should say for people if they're thinking about going on this journey of getting off the beaten path? [00:47:51] Dr. Cathy Pederson: I think one thing that neither of us have said yet, but that's pretty important, is only try one thing at a time. Because you want to be sure you know whether it makes you better or worse or you feel the same. And if you're adding two or three different new things at the same time, it's really hard to tease apart which one of those is helping. So, you know, give it two weeks solo where you've added it on top of your regular routine before you add something else. [00:48:23] Jill Brook: Good tip. Mike, do you have anything you would say on this topic before we sign off? [00:48:30] Mike Brook: I only know what I've learned from watching you, Jill. And yes, it's one thing at a time. I think that's great advice. But one thing that I've noticed with you is you have your backlog, you have a little cue of things and I see them lining up on the counter and I ask, what is this thing? I haven't seen you ever take this, and that's because that's your thing that you're going to do in three weeks or something like that. I think this really works for you psychologically because you are never without something to try, and I think that probably feels pretty good. [00:48:58] Jill Brook: Good thing I'm not like that. Like relationships. Huh? Just mostly supplements. You must know that I'm really, really content with you. Yeah. I do not have a list of backups. It's true. I might feel better when I feel like there's a few things waiting in the wings. Well, Dr. Pederson, as always, thank you for your expertise on this topic today and for all your hard work this entire season of the POTS Cast. You are a volunteer. You are a busy full-time professor and President of Standing Up to POTS and you have made it possible to make this podcast. So on behalf of everyone listening, thank you and we hope you enjoy your brief semi hiatus. [00:49:42] Dr. Cathy Pederson: Yeah. Thank you so much. Let's just say to our listeners, this is our last regular episode of the summer and in July and August we're going to go to POTS Diaries only. And so we're going to drop from six episodes a month to four to give Jill and I a little bit of a break and reprieve before we come back again and start season three in September. So there will be a little change in July and August, and then we'll be back to our regular programming starting the first week of September. [00:50:14] Jill Brook: And Mike, thank you for letting us use your good thespians voice for the poem today. [00:50:21] Mike Brook: It was my pleasure. I really enjoyed hearing both of you talk through this. It was really fun and it was of course great to get to read your poem, Jill. Thanks. [00:50:30] Jill Brook: Well, and thanks for all you do to keep me going. So, okay, listeners, that's all for now, but we'll be back next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.

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