Three Journeys of Recovery from Mental Illness

one thing we're passionate about here at metabolic mind is sharing the individual experiences of people who have used ketogenic therapy to improve their lives and and treat their mental disorders we have the privilege of hosting a lived experience panel at the recent Society of biological Psychiatry the S so conference in Austin Texas and we want to share this panel with you so introduced by our own Dr Julie milder and led by our own Jan Ellison bazooki we hope you enjoy this lived experience panel welcome to metabolic mind a nonprofit initiative of bazooki group transforming the study and treatment of mental disorders by exploring the connection between metabolism and brain health thank you for joining us on this journey to kick off our afternoon we are going to have a lived experience panel um Jan is going to moderate we really feel strongly that hearing from those who have direct experience with their disorders and then with this also we have the benefit of hearing about what metabolic therapy has done for these amazing people um that that is in really crucial to how we approach research and so we like to integrate this perspective um we do it in our work all the time and again I'll just put another plug out there for going to the metabolic mind website and watching some of the videos that have been produced they're incredible um but also we started integrating this the voices of those with lived experience into any science meetings that we've had because it is really Illuminating and so I'm really thrilled that we have Hannah and Lauren and Wes with us today uh who are going to share their experiences and um Jan has lots of great questions for them so come on up and join us yes so um since our wonderful panel here is here representing themselves as people with lived experience I thought I would introduce them as I would introduce someone speaking not about their lived experience and tell you about their credentials um so I'm going to read this part Lauren Kennedy West has a ba in Social Development studies and an honors Bachelor of social she has a wonderful YouTube channel called living well with schizophrenia that she has developed Over The Last 5 Years with 300,000 followers and I will let her tell the story of how that evolved but we found out about Lauren because she had hosted Dr Chris Palmer on her Channel and then I reached out to Chris and said hey what about has Lauren ever tried keto and do you think she would be interested and he said no um and then Lauren reached out to me just a few days later and said yes so uh here here we are um and uh Lauren will share about that channel and her keto Journey um Wesley Braden is currently a senior marketing manager at verta Health he has a bachelor's degree in Business managerial economics from Wheaten college and uh we met I guess through a friend of a friend of my sons you found out about ketogenic therapy independently but then this connection was made and we're super happy to have made that um friendship with you and Bley Wesley thank you so much for being here and Hannah Warren our very own Hannah Warren who working with us now at metabolic mind and bazooki group as mental health Communications and advocacy manager she has a bachelor in South Asian studies and a masters in fashion entrepreneurship from University of London so I want to start and I I sent um these folks some questions in advance but I wanted to start by asking you to describe your journey but start before you got your diagnosis um how did people describe you what were your dreams um what were your hopes and aspirations and then talk about when you started to show symptoms what you think the triggers might have been and how that changed you know who you were how you saw yourself and then we'll talk about uh ketogenic therapy but I thought I would just ask each of you to describe yourselves before the diagnosis and and then describe the what happened when you started to have symptoms how you got diagnosed and so on um so maybe we'll start with Hannah um so prior you know I always get this question if I saw any symptoms leading up to my first psychotic break which happened at the age of 28 and kind of in retrospect anything that looked like a sign that I would develop bipolar disorder kind of manifested as hypomania that really seemed like a good thing actually it gave gave me a lot of energy and enthusiasm and drive um I had been a very focused student I guess who I was prior to my diagnosis I went to um A Creative and Performing Arts Magnet School I love dance and theater art creative writing I was always kind of passionate about something and into some kind of project um I had an opportunity to go to India as a rotary ambassadorial scholar and learned that I I loved learning other languages I learned to speak Hindi really loved the culture decided to do a degree in South Asian studies and I started a nonprofit organization in India that was focused on women's empowerment we employed women in um garment manufacturing so that they could earn a good living wage and get their families out of poverty and um that organization I started that at age 24 and it started to become quite successful we got some large grants from Rotary International and I was given a scholarship um to get my Master's Degree at London College of fashion so that I could helped to grow that organization it was a fashion entrepreneurship degree so it seemed like a really wonderful time in my life like my future was bright um I was really passionate about what I was doing um excited to help build that project and work towards um eliminating Global poverty and you know it there was really no indication that anything was going wrong actually my mom came to visit me in London just a couple weeks before I had my first psychotic break it really seemed to come completely out of nowhere and as you can imagine it was horrifying because I was in London I didn't have family there and it was like I was working on a paper one night and I don't know a lot of students are like this right I worked all night and usually I'd synthesize my ideas and finish the paper and crash in the morning but I just didn't crash and before I knew it I was up for days on end started to hallucinate and become delusional eventually wandered into a church where I asked to meet God and was quite confident that of course I'd get to meet God there um I think lots of us think that we're going to find God in a church so right um but what did happen is they called the police who escorted me um to an impatient facility there and um it was absolutely devastating I was put on a lanzapine and within 6 months of taking that antis psychotic I put on more than 70 pounds after the Mania I became severely depressed and suicidal um and I just felt like a completely different person I felt broken and I felt like I had brain damage like I would never be the same again and it was so strange because it was such a sudden shift from having this life of purpose and passion to all of a sudden not knowing who I was anymore um they told me at the time that I could take the medication for 6 months and um after that it there was a chance it was a fluke and I could try going off of it but if I had another episode it would mean that I actually had bipolar disorder a lifelong chronic illness so I did that and you know after 6 months because of the horrendous side effects of course I wanted to try going off and I went off the medication I worked really hard exercising eating healthy everything lost the weight but within a year I had another full-blown manic psychotic episode um which then was so much grief I just felt like this is my life now and um so I kept taking the medication went through another year of pretty suicidal depression it's pretty miraculous I made it through that I was able to work and function and be economically independent but you know I I had to deal with I put on the 70 lbs again I couldn't lose it I never felt physically well on those medications and um lived just many years in what I feel like was a limbo State just feeling very sedated all the time brain fog fatigue cognitive impairment along with never being able to feel physically fit all the things that I used to love like exercise went away and then of course you know prior to my illness I had been really into health I like to exercise and eat right but after that it just felt like what's the point because I couldn't control this illness so that's when I started negative cop habits smoking drinking all those things um eventually I started working at a nonprofit organization that was into promoting holistic health and um that's when I started to try different kind of modalities like intermittent fasting extended fasting I gave up drinking and smoking I started meditating exercising my life started to change that's when I thought you know it's been seven years of stability on this medication but I still have all these side effects that I can't cut through like maybe I should try going off my meds again didn't really do it in a safe way so within a year I had my third and hopefully final episode the interesting thing to me about it after learning about metabolic therapies is that my third episode was the least severe of the three that I had um which to me was a sign that some of the fasting some of the metabolic therapies I'd done had already started the healing process but it was after I got out of the hospital in 2021 with that third episode that I discovered the work of Dr Christopher Palmer and decided to start ketogenic therapy so I never really besides being on the medication in the hospital for a couple weeks I went off of it again I didn't really deal with tapering because I'd been off of it already um for a year but I started ketogenic therapy it's been absolutely transformative for me I'm now going on three years with only using metabolic treatments my sole form of treatments no longer on alanz aine no symptoms of hypomania let alone any full-blown Mania so that's why I became passionate and wanted to join metabolic mind in and the team to help raise awareness of these incredible powerful interventions so thanks for being willing to hear our story and for the critical work you guys are all doing wow thank you [Applause] Hammer well I guess I don't need to say anything more about that is an incredible story of um healing um Lauren will you share sure so my journey to toward being diagnosed with skizo affector disorder was kind of more of a slow Bild than the quick hor set in my youth I was always kind of quiet but I had a lot of friends I was pretty successful academically throughout my grade school years I did competitive gymnastics competitive soccer was involved in multiple school student or groups um but around 17 wait wasn't there an astronomy oh I wanted to be an astronaut yeah well yeah don't leave that out and when I was about 17 it was my grade 12 year I began to experience what I Now understand was the pmal phase of schizophrenia and I started to become really really withdrawn and receded and struggled a great deal with school and motivation and cognitive functioning and all this stuff and I lost my core group of friends and my life kind of started to fall apart a great deal and I stopped going to school in grade 12 I skipped a lot of school it's like a means of coping with the symptoms that I was experiencing and I became really really depressed um this obviously impacted my ability to pursue astronomy in University I'm not sure if that's what I would have pursued but I didn't get life is long yeah maybe there's still hope I don't know but I didn't get into University because obviously I didn't attend any of my grade 12 year hardly and I had very poor grades but I still thought this was a path that I needed to take because that's what I always thought I was going to do so I ended up going into open studies and kind of struggled my way through my first undergraduate degree when I was about 23 I started my BSW my bachelor of Social Work degree and that's when things like really really deteriorated and I started to experience symptoms of psychos as well um I had a manic episode with psychosis that year and that was the first no I'm getting well I've been hospitalized many times I won't get too much into the details of all those things throughout that period I had two major suicide attempts one where I was put on life support and almost didn't make it through um and it was a really really intense period of struggle of my life and and that coupled with messaging from the medical system there was a psychiatrist in one of my hospital stays who told me that I should probably live in a hospital for the rest of my life and that was how severe my illness was and that there really was no hope for me to live a life I had wanted at one point and it was a really really lonely isolating and hopeless period of my life where I did not know what was going on my brain was not working my conception of reality and my life was so altered and yeah it was really really difficult I was finally diagnosed with schizo affector disorder when I was 25 um so I I struggled through my BW and I managed to complete it it was supposed to be a one-year degree but I completed it in three um and I went the research path of social work I was doing research around mental health systems and then I moved into Cancer Care System and I was really really passionate about this and really wanted to pursue this and I loved the work but inevitably every time I got a job that I really enjoyed in this career path like clockwork about 3 months in my symptoms became so unmanageable that I just kind of had to leave or would get pushed out of jobs because there was no accommodations really or understanding for the differences in my mental health capacity and whatnot but yeah so it was really really difficult I struggled a great deal for a long time I've had multiple hospitalizations with psychotic episodes but when I met my now husband Rob um I had started to do some kind of advocacy work sharing my story with a local organization called the schizophrenia Society of Alberta The Province I live in in Canada and my husband had a background in video work and he had started a YouTube channel about like photography tutorials and he was like you know what if we tried putting your story up on YouTube you could reach so many more people than the room full of people that you can reach going around speaking with the society and I was like okay you know I didn't really watch YouTube I didn't understand it I don't know I was like sure but very very quickly the views started to go up it started to gain a lot of traction and people were really resonating with with sharing my experience and my struggle and you know it was it was something that people don't talk about um and so being able to hear aspects of my story that they related to or that resonated with them was really impactful and so that was late 2018 that we posted our first video and it's now both of our full-time work that we do um but yeah throughout that I guess it's been five six years of working on this channel there's been a tremendous amount of work around acceptance and trying to learn as much as I can about my illness and why it happens what it means to live with it and it's been helpful but also kind of a frustrating journey in terms of never really getting full answers and still being met with this understanding that I live with an illness that inevitably comes with deficits and that will always hold barriers for me in terms of not being able to access a life that I would like to live fast forward to I guess uh four and a half months ago we started a project using medical keto to treat and manage my schizo Factor disorder Lauren did you hear about how did you hear about this uh you know back in 2020 I think we read some sort of article suggesting there could be some benefit to using the ketogenic diet to treat mental illness and so we actually attempted it we did it very very wrong I've learned much more since then and just kind of gave up because the pandemic started I have three kids it was very stressful um so just kind of put that on the back burner but then maybe a year ago we had Dr Christopher Palmer back on the channel to talk about mental illness as metabolic dysfunction and if the medical ketogenic diet could be effective in treating illnesses like schizophrenia and it got us a lot more Curious and like this could be a thing and yeah we connected with you and we're like we're going to try this project um a bit of a gamble to do it completely openly like we've shared right from day one on our Channel every step of the Journey of me using medical keto and metabolic therapies to manage my skizo affector disorder and like four and a half months and it's lifechanging okay we're going to get into the we're going to get into the details about the change of life that has gone on here but let's hear from Wesley thank [Applause] you uh it's interesting whenever I do an intake with a new therapist or a psychiatrist or something um I start realizing as I'm talking uh the signs of um either bipolar or OCD another you know diagnosis that I have um from when I was a kid or when I was a teenager because I used to kind of uh think that I had these like big trigger moments like I can remember my first obsessive compulsive episode um and now even as I was kind of thinking about how I wanted to share I was realizing well if I start when I was a kid I could think of a lot of OCD type Tendencies and there's a lot of incidents of what I would now know uh to be hypomania that were before kind of my first um big episode that I can remember but um uh I was a very scrupulous kid um I was very um thoughtful and quiet and sensitive uh and um I had a lot of obsessive Tendencies I remember um scrupulosity like uh came from a conservative religious family and I remember being obsessively concerned with um questions of of Faith um I was also very concerned around safety and stuff like that but I kind of that kind of went away during puberty which I know can be um typical for for OCD and so I kind of forgot about it and um I graduated from high school and I went to college and I didn't know what I wanted to study but I knew I did not want to be a doctor both my parents are doctors and I had heard enough at the dinner table um growing up so I knew that I didn't want to do that and I ended up stumbling and falling into um helping get a startup off the ground that was making uh Band-Aids for darker skin tones and um I was getting that off the ground at my sophomore year and um working 30 40 hours a week sometimes on that and selling to hospitals and big box stores and trying to push on social media and also trying to keep my school going um and I can realize now that that was probably hypomanic energy that was helping me right and at the time I was just like I'm very productive I'm very driven I'm super motivated uh but now looking back I'm like H that's a clue that that was probably an abnormal amount of uh productivity anyways the summer after my sophomore year I'm coming back to the suburbs of Chicago on a train with one of my friends we had had a night uh eating at this restaurant that we were excited about that had just opened um and uh I opened my phone and this I had a notification from LinkedIn that a police officer had viewed my profile and immediately this obsessive thought jumped into my head like you've done something illegal um that you forgotten about and they're going to get you for it and that haunted me for the next year and I became more and more kind of obsessive I withdrew from classes I became more and more non-functioning um to the point where uh eventually um I was diagnosed properly about eight months later or something uh with OCD and I started medication and um started Erp and all this type of stuff um and started managing my OCD um and that goes on a few years I get into Tech I'm working full-time um but I still continue to have even though I feel like I've managed my mental health very well because I'm living with this uh previously incapacitating OCD I begin to have these surges of agitation energy um it was uh my wife who first noticed she would say like you know Wes it seems like you're behaving differently or you have kind of this um yeah like abnormal amount of of of energy and um and that continued to progress further and further and I would also get very depressed and very suicidal and um I would experience these kind of mixed states where I would have the sentiment of depression and the and the feeling of being low depressed negative toward myself um but with the energy and motivation of of mania um and I can recall very very clearly I was working remotely at the time it was during Co um and I had such an abundance of uh mental pain and energy and it and felt um a fanaticism that I just like got on my bike and rode like 20 miles in the middle of the work day because I was like I need to do something with this and I eventually um was working with my psychiatrist and we were trying different medications and she eventually said you know what Wes I think that you have bipolar disorder and I think what you're experiencing is swings between Mania and and depression or hypomania and depression um and so I uh got on lithium um and experienced a huge reduction in Mania and was you know my eyes were open to uh the fact that I had been kind of in this state of hypomania um and that continued for several years uh from maybe 2021 until last year um but I continued to have even when I was uh I guess the term is euthymic even when I wasn't in a swing because I was fairly well managed with uh the the mood stabilizer um I had a lot of agitation irritability uh in honia I just wasn't doing well even though I wasn't in a depressive state or a manic State I wasn't enjoying my life um I was feeling kind of numb I continued to have a lot of anxiety um so in that in that uh period I was trying different antipsychotics I was um researching as much as I could with my Limited medical ability um to try to find what would be a useful lever that I could pull that I hadn't tried before that could be interesting um and at the time this was a year ago now June um my friend sent me a podcast with Chris Palmer he's like check this out like some cool stuff about bipolar and I was very skeptical um partially because my friend and I had disagreed about psychiatric medication before just out of his experience and uh and he's not a doctor we we were just talking about it as friends so I thought oh here we go like you know I doubt this will work um but I listened to the podcast and then I read the book and then I sent it to my psychiatrist and then I sent it to my parents um and my wife is a nurse and she started looking into it and I thought let's give it a shot so I gave it a shot um and I thought ah this is pretty limiting diet uh it'll be there'll be you know cost to it in terms of like going out to eat with friends and stuff but in terms of the potential upside could be really worth it so um I've been on it now for for a year so it's obviously been impactful enough that I've kept going um and my quality of life has improved noticeably I would say like on the effect of um a really good medication uh like I've tried a ton of medications um I've experienced benefits from some of them and uh but all of the benefits come with side effects be it um athesia be it lethargy be it um weight gain and keto has had the positive side of those medications without any of the side effects the only side effect is um obviously you have to eat the diet but like that's that's you know that is what it is um so anyways uh I'm thrilled to be here thanks for coming thanks for learning um I am uh interested enough in this space that I now work at a metabolic Health company as well so I'm bought into it um from a career perspective as well and think that it's an interesting um lever but yeah that's my story thank you Wes I just wanted to to bring up a few things that those three stories together bring to light uh I think in Psychiatry we're always looking for phenotypes and often we are looking at symptoms to dictate what those phenotypes might be or to give us Clues and these symptoms are all really different these stories are all really different the diagnosis are different um the onset is different the expression of the illness is different and so I think we need to be really careful when we're thinking about phenotypes to go beyond clinical presentation to something much deeper probably metabolic and so in and all of your work I know this is a deep part of what you're trying to do is to figure out what is the underlying physiology that is not describing the symptoms or the presentation of the symptoms necessarily but that is representing the underlying metabolic dysfunction that's what we have to figure out so I'd just like to go a little bit deeper into the experience of trying ketogenic therapy how did you do it who helped you uh what did you eat what other kinds of therapies did you try alongside and any interactions with medications that might be interesting um for the field and we can just go in the same order Hannah if you wouldn't mind starting um sure so um when I started ketogenic therapy in 2021 at the time um metabolic mind didn't exist yet brain energy hadn't even been published I just found Dr Palmer's website and so I was really searching as much as I could for guidance and I I made so many phone calls trying to find a provider who would take my insurance and could help with ketogenic therapy but I could not find anyone um I was really dedicated though to giving it a try I just didn't want to go back um you know since I had been doing the intermittent fasting and all these different metabolic therapies exercise and it finally started to feel like myself again and reclaim my physical health I just couldn't imagine going back to taking in the anti psychotic cuz I knew what was around the corner if I did that so I just really wanted an alternative so I decided to to do it on my own you know without without guidance you had already tried extended fasts and you had been on a vegetarian diet before that yes I'd been a vegetarian um since I was a child so I was I've stuck with um vegetarian mainly dairyfree keto I do eat some eggs now um so I yeah because I had done extended fasting I was already metabolically flexible so that was nice it was really easy to get into ketosis and then with the fasting of course developed some of the willpower needed to do keto so it didn't feel that difficult of course like anybody I had moments of weakness and kind of in the beginning of the diet but once I adjusted to it I actually found it really satiating I don't feel deprived at all I really liked it and as far as symptom reduction right away um because I had just gotten out of the hospital with Mania what I what usually would happen was really severe suicidal depression but starting ketogenic therapy right away my depression became not near not very severe at all I wasn't suicidal within a couple months it completely resolved so and you have stayed on the vegetarian keto diet through this time and I know you have other therapies that you had already been doing and that you've added on can you just say a couple things about that yeah so um fasting has been really powerful for me so I still do intermittent and sometimes even extended fasting with Al which really helps with Stress Management and then exercise is an important component of my metabolic therapies it's a really good stress reliever for me so I'm really into jogging I've started doing more resistance training to build my decry in those muscles but that's an ongoing process so um yeah and meditation I think is really important important um for me meditation and journaling have helped me to adhere to ketogenic therapy um just positive Framing and reinforcing those good habits have been a key part of healing as well thank you Lauren um and you can all you can all follow Lauren's journey in detail on living well with schizophrenia it's been an amazing YouTube channel for those who want to get into the nitty-gritty you know like testing your ketones how to do it take going in a grocery store seeing the meals so oh we'll hear from Lauren and then if you want to get the play byplay you can go to her YouTube channel yeah so we've we've gone pretty hard for the purpose of providing as much information as possible um like Hannah said it was difficult to find providers who are even open to it never mind specialists in metabolic health I we put out a call on our Channel which has 300,000 subscribers looking for a psychiatrist who would follow me through this process and we couldn't find anyone so I went ahead with my current psychiatrist who was like yeah sure let's try it I don't know anything about it but sure I'll follow you psychiatrically through it and my physician was also of similar mindset and I have a keto coach Nicole lauron who has been helping guide me and troubleshooting in various areas which has been instrumental like I did try it without her a couple years ago did not go well going so much better this time because she's just been so such a good resource um we have I say we because my husband is doing this with me and that's perhaps of relevance because we've had very different experiences of getting into ketosis which has been interesting and so I understand that my experience is not necessarily indicative of everyone's but I got into ketosis very very quickly like I was in ketosis basically the first week we started to adjust our diet um my ketones were very very high throughout the whole process like four or five milles per liter and it it instantly improved my mental health I it you know I've gotten I've gotten used to just living with symptoms and I started to realize about two weeks in I'm not taking notice of hallucinations or delusional thinking or I'm not feeling paranoid and so that was very interesting but we meticulously tracked everything we consumed through an app called chronometer um meticulously tracked ketones Through Blood and uh blood the keto Mojo I'm wearing a continuous Ketone monitor right now we've used that the whole time which has been extremely helpful in terms of being able to troubleshoot what I'm eating and track Ketone levels and stuff breathalizer urine strips tested everything to let everyone know um I don't think there's a YouTube of the strips but there is there is a YouTube video about putting on a CGM and a ckm and pricking your finger with a cute emojo which I just found very helpful to see it live so for your patients who are interested yeah can see the play bypl go on sorry to interrupt I think that's it I've I've moved away from tracking my food um because that just yeah wasn't feeling great I have a history of an eating disorder as well and that's something that's come up from a lot of people worried that it's been that it will trigger eating disorder Behavior but this is not a part of your question but I'll just let you know that I actually think that it has healed that aspect of my experience with mental illness whereby my relationship with food feels so much healthier and so to negate that criticism or whatever yeah but I was starting to feel that the meticulous tracking was perhaps triggering a little bit of the more dangerous patterns of my eating disorder and so I made the decision you know I've learned so much I I think I can do this without tracking now and it's going really well so yeah wonderful wesle yeah I think there were two categories for me um the first category was like staying motivated at the beginning um and the second category was actually learning what to eat um and what impacted my my progress um in terms of staying motivated I read uh Dr Palmer's book and that was while I was in the nitty-gritty of getting into ketosis and learning to adapt this new lifestyle um that kind of helped me keep my eyes on the end prize and stay motivated and and understand okay there is a theory here and um there are other success stories that kind of gave me a lot of motivation um I also like my wife did it with me at the beginning and then I had another friend uh who was diagnosed with bipolar 2 who also did it so being able to stay in kind of some type of accountability was very very useful especially with like a peer who was experiencing um the ups and downs of uh you know symptoms going away or not going away or whatever so um that was that now in terms of a year ago there were this space is moving so quickly that there were a lot fewer resources a year ago even um than now so I think our experience was probably pretty similar I spent a lot of time on Reddit um a lot and there's a lot of really interesting stuff on Reddit and a lot of very bad stuff on Reddit um but I tried to sift uh through the the chaff and the weat as as well as I could um and then Chris Palmer's book was very helpful uh and then talking to people who were a little bit ahead uh of me in the journey um just to be able to text them and say uh and I started Meeting those people um as we got connected you know through the brain Energy Group and you know all this type of stuff um so yeah that's kind of my my experience it definitely was not as um precise or uh frictionless as it could have been and it probably would be now hopefully with some of the resources that are coming out and what kind of diet what do you eat typically um I do not eat breakfast um for lunch I will typically have some kind of fatty protein eggs sour cream maybe a small salad uh for dinner I will have maybe a small salad and some kind of fatty uh protein um and cooked in butter or oil so pretty basic I think I think my wife probably suffers the most cuz she's just bored but um but it's a pretty uh I would say a pretty basic diet I've tried experimenting with MCT oil um I haven't found that to be particularly helpful in my own case um but yeah and are there other things you do besides the nutrition side of it that you feel are helping your metabolism yes um my my light glasses so I have I've tried a light box I used to live in Chicago so lot people had light boxes for um sad um but I always found that I couldn't stay in front of it long enough for it to be impactful so I bought these little glasses from Belgium that go over my eyes and beam light into my eyes um so I do those every morning that's been helpful I exercise while fasting um four to five times a week um I have like a prayer meditation practice um what else lots of uh sodium supplementation um I'll I'll think of things but that's the main kind of regimen are you still on yes I am still on leum maybe that's a good segue into talking about medications and Hanah you were not on medications when you started ketogenic therapy um Lauren you have tapered off some and we can hear from Wesley um I'll share that with my son he was on five medications at the time he started kenic therapy he's now on three very low doses uh it has been relatively easy easy or difficult for him to get off depending on the medication lithium was easy benzos were hard Antics are hard carbamazapine has been hard I don't think he would have gotten off of benzodiazapines without ketogenic diet we saw got a lot easier once he was in ketosis um but it has been no means easy he's he's on about 20% of the medication load that he was on although that's a pretty imprecise calculation I would love for someone to come up with a like total medication load calculator math so so um Hannah can you just share your experience of having been in the hospital the last time and then did you just stop as soon as you came out yeah I know I know all the Cates in the room are sh shaking I know well I I was in the I was put on medication when I was in the hospital I stayed on for probably a couple weeks after getting out but again it was like after just starting to restore my health again I had gotten to a point where it was like I would almost rather experience an episodic illness than to always feel a diminished quality of life and feel so sedated and not myself all the time I just couldn't do it anymore um and I knew exactly what was going to happen if I stayed on the AL land of pine for an extended time because it had already happened to me so I just was desperate to try an alternative of course I knew there was a big risk having just gotten out of the hospital and deciding to do that but um I did I did see a counselor at the time um who was kind of monitoring me for symptoms and asked my family to keep an on me while I was doing it but it I think it gave me the advantage of because I'd only been on it for such a short time not really needing to taper in the same way and I did um keep medication in my medicine cabinet it's still there the Lance P you know I was always like in case of emergency I would take it if I needed to but luckily I haven't needed to and just as a patient advocate you know I meet so many PE people with different perceptions of medication for some people they don't experience negative side effects and I would never say like you should switch to ketogenic therapy like this is just about making people aware that there are other options and I'm certainly not anti medication and I know a lot of people who are doing it you know like West like as an adjunctive therapy that's still really helpful so yeah I would say most of the people that are going on ketogenic therapy aren't touching their medications at first and that's kind of the advice that's the typical advice just stay on your medications and add this as an of therapy however sometimes with some medications including antis psychotics you can get a potentiation effect and I'll let Lauren tell what happened to her um so yeah medications I had a psychotic episode actually just in June so about a year ago and I got even on medication and I came out of the hospital on like 140 milligram of Flor acedone two doses of H doll a day uh mood stabilizer and then and then more meds for the side effects of all those and that's kind of where I was at I eventually worked my way down to 100 milligrams and that lurasidone and that's what my starting point was and had you tapered off the other medications I got off the hll and the mood stabilizer actually yeah and so when I started this project in at the end of December I was only taking 100 milligrams of lurasidone um but about 3 weeks into following the ketogenic diet I couldn't get out of bed I was so sedated I could hardly think and I just felt not good and and so I let Nicole know about this and she said you're probably experiencing potentiation whereby the ketogenic diet is improving your metabolic Health thus reducing your need to be on such a high dose of anticho medication and you're experiencing far more symptoms or side effects of that anticho medication and so the sedation that I had kind of always experienced from that antipsychotic was times 100 and so I with my psychiatrist was like I let him know what was happening and he was like okay well let's try reducing it and so we reduced it down to 80 and I felt Improvement almost immediately in terms of feeling less sedation but I was still feeling sedated and so I went back to my psychiatrist explained what was happening and he was like let's try 60 so we went down to 60 and that felt really good um so very very clear what was happening based on what happened once I reduced the antipsychotic and that was good for several more weeks and then it actually started to happen again where I was experiencing more of the sedation again um and i h i I tried to push through it a little bit because I started this project thinking I was not going to touch my medication for at least 6 months until I was absolutely certain that the medical ketogenic diet was effective in terms of managing my illness and I was I was scared to touch my my medication but yeah this happened and don't make plans I guess you know and so I'm I'm currently on 40 and that's been for about 8 weeks now and yeah the plan is to try to keep tapering if everything is going well I just I think this is such an important topic because different medications interact differently with ketogenic diet and with each other when Matt went on once he was a nutritional is we were tracking lithium and carbamazapine blood levels the blood levels dropped by 35% exactly for both medications and if you didn't have a provider who understood what was happening they might have increased the dose even though his symptoms were reduced so these are some of the things that we really need to be looking at it has been frustrating to me that no one would ever take at antipsychotic levels in his in clinical practice I kept asking well how are we going to know what's happening it was just kind of a guess so I think in some of the studies we've been talking about adding taking uh levels for anticss and other medications so that we can try to figure out what's happening and compare that to what's happening clinically um Wesley did you want to weigh in on any anything you've noticed with your medic medications and and who your treatment team is yeah I work with a just a therapist and a um psychiatrist my psychiatrist actually moved to Austin about a year ago and my psychiatrist in Austin is um not knowledgeable about keto at all my psychiatrist in Chicago was um with whom I started uh I now feel like I can advocate for myself um but if it would have been difficult to start under this care I think um that's an aside uh I my experience has been that uh I'm trying to remember the medication I was on when I started keto um I think I was on uh lithium uh lotr and potentially a bifi um the biggest thing that I observed from keto was a huge reduction in um anxiety and agitation um and so I went down to just the lithium um and then I've had a Resurgence of some irritability and agitation and so I've worked with this psychiatrist to find a potential uh Little Helper to help out with that but um we have not had luck because the side effects and potentially from you know what you describing Lauren the side effects have been very extreme from all of them particular sence um even the ones that are newer uh and are not indicated for that as much I've been like way on the sedation I've been like zonked out on them um so yeah we're still trying to figure out if there's a medication that could help with some of the irritability um side of things but I remain on the lithium um I get my blood levels pulled for the reason that you were you know describing um but yeah I've also experienced severe side effects from anti psychotics that uh are not necessarily like as uh indicated just potentially because of being in ketosis yeah I think it's also really important to pay attention to withdrawal effects um Hannah Lauren has experienced some of that my son definitely has experienced that and often our experience is that psychiatrists don't want to talk about withdrawal effects they want to talk about organic illness returning as a result of dropping medication and that is not what is happening it's really important that we listen to people's experience and and they have been watching their symptoms closely for years they know the difference between a side effect and bipolar disorder returning and it's important to differentiate between those and we need to do that work and maybe I could just share a tiny bit about what you experienced uh with the last drop yeah um anti psychotics are not fun um multiple times I've well actually often times stems from delusional thinking about the medications being poisonous that I stopped taking them and immediately I get psychotic and end up in the hospital I've done that two or three times and so I was told like you need medication your illness is returning as soon as you stop it but what I'm kind of learning is maybe actually happening was like extreme withdrawal psychosis induced with or withdrawal induced psychosis um when I went down from 60 to 40 just like a couple months ago I experienced very very difficult um symptoms of withdraw I my C functioning was impaired it felt a bit like inklings of psychotic symptoms kind of returning um like the agitation was increased um and you know even going through this and kind of knowing that that was going to happen and knowing that keto was helping me I still was like oh my god do I need to go back up on my antic psychotics I think my psychosis is returning but pushed through it and about 3 weeks later I was okay again it was very very clearly withdrawal effects of reducing the antipsychotics and so I the lurasidone whatever is 20 milligrams is the smallest and so I think going down by that much is probably too much um we're going to find a compound pharmacy to make the 5 milligrams which is how we had to approach it with our son um goad I was just going to say um the worst experience I've ever had with a medication and I've tried probably 10 antipsychotics so I've had a lot of weird stuff with them but was withdraw from Zoloft after um being on it for five years for OCD was like the front first line treatment that I had for OCD they were like just try you know search and you'll be great great it was great it changed my life at the time um but coming off of that I remember after being diagnosed with bipolar 2 and my psychiatrist was like ah we shouldn't have you on this you know um was absolutely like uh gut-wrenchingly terrible uh for about two months I had a combination of brain fog depersonalization um a sense of time passing differently uh but it wasn't significant enough to be um it wasn't like acute enough to be uh like really really Earth shattering it was just in the background at all times um and I was like is this ever going to end so yeah uh and that's uh like you know people write prescriptions for zolof and Prozac and stuff like no Pro like SSR is like no problem right but coming off of that after five years and there people been on it for 30 years you know um so anyways uh withdraw is very real yeah and I just want I'm gonna open up to question but I just wanted to ask you what feels different now it's been four and a half months Hanah you're like almost 3 years Wesley you're almost a year in my son is 3 years in he continues to get better and better you can kind of see the healing happening which we haven't seen with any uh other intervention so could you just one minute say what what feels different now from before you went on ketogenic therapy um I I think my life is completely different I actually consider myself in complete remission from neurometabolic dysfunction I don't consider myself someone who has bipolar disorder right now um so I feel like my creativity returned my cognitive functionings back I'm a able to be physically healthy and life is just better than I actually ever thought it would be following that devastating diagnosis so I mean I almost started to cry earlier when I thought about this aspect of it because yeah it's been four and a half months and my life is completely changed I have I I think I say this too much but my capacity has just increased exponentially I feel like the blocks I kept running up against for a decade plus of experiencing and living with the illness are being removed before my eyes I feel like I can show up better for my family for my kids I can show up better as a partner I can show up better in work I can show up better for my self and it's a little bit difficult to kind of wrap my head around the breadth of how it is changing my life um you know coming I think an element of living with a me mental illness is kind of coming to understand yourself with that being part of your identity even if it's just an illness that you live with because it just affects the way you experience the world so profoundly and so having that altered and changed and stepping into a new understanding of myself without those deficits and limited capacity is quite profound yeah yeah along those lines for me the the biggest um obviously I've noticed a like a physical benefit I am less anxious I'm more clear-headed um I think my mood is more stable but maybe even more profound than that and along the lines of what you were saying Lauren is like I feel hopeful um because I have a new like lever to pull that I didn't realize uh was a lever you know like I knew medication I had been in that world since my OCD diagnosis in 2016 I knew therapy I had done so much work in that and you know with Erp or CBT type stuff or internal families whatever it was but this was like a brand new um a brand new tool for me to use that could give me hope uh that was related to the other things but also independent of them um and so I could benefit from it in addition to and independently of those those other things so it just has given me a lot of agency and a sense of autonomy um and hope [Applause] yeah um questions for our wonderful wonderful panelists and I will just thank you thank you all thank you so much I mean these stories are really um incredible they're they're very very motivating um as as a scientist um very exciting I'm so happy for you and so happy for the field um I have a a question that is both a practical one and also scientific one combined which is it takes a while for someone who's never been on a ketogenic diet it takes a a bit of time to transition their bodies into being able to be in a state of ketosis reliably um and then past that point once they are now in ketosis my question the question that I get asked a lot by patients is how long should I expect it to take to actually feel noticeable results um because it is easier to stick with something that is that feels a little foreign if you feel like you should be getting some reward out of it within some finite period of time and obviously that'll change from person to person um but I'm wondering if you could speak to for each of you like how long you felt that you know how long did it take both in terms of the physical the the transition to ketosis and then the transition to feeling different yeah this is a great question and believe me I spent a lot of time on Reddit trying to get this answer in the first couple weeks because I was like when is this going to start working um I'd say probably around week three or four I started having good days and little breakthroughs um where I would for uh you know a few hours or an afternoon be like wait a second I haven't been as anxious for the last four hours wow this feels good and then I would kind of slip back into it and then maybe week five or six it started I started having more good days than bad um and then started you know after that to to be in a steadier state so I would say somewhere in the like four to six weeks was when I could notice it um I did have positive benefits before that in terms of more energy it just wasn't necessarily mood related like I would wake up feeling more rested the second or third week and I could notice that in terms of when I how I felt differently or when I kind of could uh know that I was my body was getting used to being in ketosis um was probably in the four to six week Mark as well um because I stopped getting as hungry I stopped having cravings um I could go longer in between meals like I tried some fasting and I was like this is much easier than last week or the week before um yeah so that was overall about the four to six week Mark so if I'm understanding you correctly the the physical transition and also the psychological transition were essentially happening at the same time physical a little bit ahead of psychological physical like for example week two I I started waking up more rested and I felt oh I have more energy I'm going to like empty the dishwasher in the morning instead of waiting until tonight but then um in terms of like uh and I remember like cooking my wife breakfast cuz I was like up and you know ready to go uh but then I started feeling mood wise better um like four weeks and maybe um so I had done quite a bit of extended fasting so I was able to get into ketosis right away and one of the reasons that I was so optimistic that this form of therapy could work was as a fasting mimicking diet because I already knew that I felt a difference in mental Clarity and energy when I was in ketosis from my experience fasting um so I felt quite a bit of relief from the depression after getting out of the hospital like immediately um and then it completely lifted within a couple months and getting to talk to so many people with lived experience I think this is a fascinating question because there's appears to be so much variability like there's some people who feel it within days sometimes it's weeks sometimes it's months I've heard Dr Palmer say people should give it at least six months to see a difference so just people need to know that there might not be a clear answer in a lot of it individual l um yeah along those SES I I run a lot and I often would skip breakfast and so I don't know if that increased my metabolic flexibility because it was like the day after I started keto I had like 1.5 Ketone levels so I got into ketosis very very quickly I did not experience keto flu my husband did and it looks awful so sodium yeah electrolytes yeah but I can see how that would suck if if you're going through that it would be unmotivating to continue with it um but I did not experience that and I started to really notice improvements in my mental health about a week and a half two weeks in and it's just kind of kept improving since then I would just add to that that a lot of people see metabol especially people who have overweight or obesity see the metabolic impact right away and then that's kind of enough to keep them going and then ultimately the the psychiatric symptoms will come in after that question how much has your weight changed since starting the ketto diet and how long did it take for your weight to stabilize stabilize and another question also how did this correlate with your symptoms uh I lost probably six pounds in the first couple days which is very typical um water weight loss uh and then overall in the last year I've lost probably about 20 lbs and that's without trying um I've never counted calories on the keto diet um so yeah in terms of How It's I don't I don't think weight loss has in any like way very actively interacted with my symptoms um I feel better overall healthwise uh so maybe I'm sure there's some kind of little halo effect there but yeah uh about 20 pounds to answer your question um so as I had mentioned I put on like 70 pounds on a l ofine um I lost quite a bit of that like when I started doing the intermittent fasting and everything for the year before keto on keto I probably lost about 30 lbs total and oh yeah and it's it has made me feel better just feeling physically better I think always helps our mental health just to feel fit and active people on our channel are constantly coming at me for losing too much weight and whatever so I think I look thinner like if I've lost inflammation in my face or something but I've actually gained weight I gained 4bs but I had like a body composition screening done at the beginning and 3 months in and it was four pounds of muscle that I put on because I've been doing more weightlifting and stuff like that as well so this is a really important Point um and maybe Guido's going to talk about this but we get people uh critiquing the Stanford study because most of the participants in the stord study were obese and people said oh the Improvement in psychiatric symp is only because of the weight loss and I think it's important to note that we have evidence here of weight gain and we have evidence of course in Guido Frank study that he's going to talk about later of weight gain and psychiatric symptom Improvement on keto thank you all for sharing these really remarkable stories in in in this great detail which I think is really helpful to conceptualize for all of us who are clinicians and researchers Wes I have two questions for you uh one is what happened to your OCD symptoms in relation to the ketogenic diet and how quickly did you get off the Zoloft when I got off the zolof in 2016 now so over what time frame were you discontinued off the zolof did you do that over a month two months and what happened to your OCD symptoms okay so this was before I did the keto diet um so I did this was in 2021 that I got off the Zoloft um I got off of it over perhaps um three or four months it was a good taper uh I was on 200 milligrams a day which is I guess like upper limits but typical for OCD um I didn't experience a huge Resurgence in OCD symptoms mostly because I have spent a lot of time uh doing exposure response prevention therapy so I was it was very managed at the time um I was just kind of on it as like a a vestigal it just was still there uh and that's why we felt okay coming off of it um via and your OCD symptoms have you noticed a change at all or was that already resolved uh no I still wrestle with it it's hard for me to tell because um the ones that get me now are much more nuanced than they're like relational OCD it's not it's no longer like uh the danger ones or the kind of the ones that are easier for me to identify and like sequester and um so the ones that are get me now are more nuanced um with keto I have felt a quieting of them yeah it was less probably uh impactful like the keto has not impacted them as much as it impacted mood but it has quieted them a bit Yeah so it's been a good benefit thank you very much for for incredibly inspiring stories and and accounts of your experiences one of the challenges that I've run into in my clinic is convincing people to try this and um uh I've had a number of individuals just give me a hard no I've had individuals who said who have tried keto diets for other purposes including weight loss and they so they've had experiences with it and they kind of were they were hesitant on it now I'm probably not inspirational enough for them to convince them to try it or there's something that I'm lacking into it but I'm I'm I'm interested to know how you respond to people who contact you to say you know I tried it and I'm having a heck of a go of this and and here are my different difficulties or or are are you hearing people come and talk to you like this and and how are you responding to people who are who are struggling with the you know with with moving forward on a Keto d yeah we just talked about this at lunch so maybe I'll hand it over to Lauren who could talk about her experience of trying it before um so what would I say to people who are having a difficult time with it um yeah so I think having tried it once and it not having worked like I I didn't try it for long enough but I did so many things wrong like there is not enough information out there right now about how to do it properly especially when it's so muddled with weight loss keto and there's so much you know conflicting information about how to follow medical keto specifically and so yeah I would encourage I mean if they have you as a resource that's great but if they someone else you know the having a keto coach really helped to address that but you know getting to a deeper level of that immediate no that's coming up I think that's something that has been a little bit shocking and difficult to process through sharing my own experience on the internet and how if to me it just feels like you would see that you would go wow this worked for her maybe this could work for me maybe I could apply some of these to my own experience and alleviate my suffering but that is maybe 50% of the reaction the other 50% is people feeling feeling attacked might be the wrong word but I spoke about how mental illness really gets confl with your identity and so I think that that's been a really interesting thing to kind of Wade through process with reception of this as a therapeutic intervention whereby people feel feel um like their identity is being attacked by providing an alternative treatment like this as opposed to what we've been taught this whole time that to be a good patient means taking your medication as prescribed and that's really about it and I guess it feels intimidating to have this other way of thinking proposed to you and so yeah that's been interesting I was just going to say the way that uh I found to be most I guess useful to help people understand it would be to focus on metabolic Health overall and not just the diet um because there's other things that they can try well obviously if you're running a clinical trial on keto there's not but if somebody came to me and they said hey I have bipolar disorder and I want to improve myself there are other things they could try electr kadian Rhythm wise exercising fasting um and so like for me specifically it was very helpful to think about metabolic Health as this new realm of my life that I could use to impact my mental health reality uh and keto was one portion of that and that made keto feel much less like it was this oppressive diet that I had to adhere to very you know rigidly it was like oh cool another little tool in the metabolic tool kit and hey this is overall helping my mental health so that that may not be that helpful to you like in terms of getting them to do a trial but uh in terms of getting people to improve their their metabolic Health that's like the approach that I typically take I think one of the main things is as a patient advocate I just want people to know that this is an option and of course this is something that somebody has to choose and um maybe it's not the choice that everybody wants to pursue but I think like when Lauren's saying 5050 I think our job is to inspire those people who are desperate for another solution and it's it's those people who are going to share their stories and eventually create more inspiration for others as they can see that this really works for some people and I thought it was interesting we heard from a young man who was really inspired by do SE these study um and said you know he tried keto in the past but after seeing those results he's like I really want to give this another shot so I just want to emphasize how much your research really does matter to patients as well and that being able to see that makes a big difference and is very motivating for people so thanks for the work that you're doing I had a comment in the question so my com m is one uh thank you all for coming today uh and sharing your voice uh it's an important part of what we do uh as clinicians and as scientists um my my question really has to do with sort of um sort of the psychological component as it relates to the metabolic component which is how do you find that the sense of agency and hope and Effectiveness interacts with the metabolic effects of the diet for you individually I love that question that is so interesting because I think when I emphasize meditation and positive framing journaling I think it's all interconnected and we know even physiologically placebo effect is a real thing so I always try to leverage that and I know that I talk to myself about the healing impact of the diet and the difference that it makes into my in my life and um kind of an interconnected facet of this that I just keep meaning to mention one of the most interesting things about this form of therapy I think is that while you get some of those quick benefits like immediately and with within the first few months so much of it is incremental and over time which I think really ties into the theory that this has to do with mitochondrial function that is kind of slowly repaired through the mechanisms of a fasting mimicking diet mitophagy mitochondrial biogenesis so I feel like my healing really kind of peaked at a year in but seeing that increment Al transformation is really amazing which again I think is another thing that can motivate patients is just talking about this is a gradual healing process that gets at the root cause and unlike medications can potentially put an all us into remission which I think is a totally different kind of motivation so yeah it's a feedback loop like that that's what I was trying to get at in my little closing statement was the sense of agency and hope as I listened to these podcasts and read the book and talked to my friends made me to the diet more because I was excited there was like a sense of um agency there was a sense of okay this isn't you know uh Latuda changing my brain this is the choice that I made you know four hours ago at the dinner table changing my brain um so yeah it becomes a positive feedback loop where you know you are doing better because you're adhering to the diet so you add in some exercise and then that gives you more energy so you add in a meditation practice and that gives you more mindfulness and so you reach out to a friend and that social energy is helpful you know so it it it compounds I think yeah I was going to say exactly what Wes just said it's a lovely little feedback loop and the more capacity you have the better you're able to show up taking care of yourself which ultimately improves your metabolic Health even more and thus it repeats I would just add that it's not just psychology right it's also cognitive function um the way my son objectively measures his successes by his chest rating Which is higher than it's ever been so is happy and that seems like a perfect place to wrap um from hearing from all of you and thank you again I think all of us in this room are so grateful thank [Applause] you I hope you enjoyed that lived experience panel as much as I did it's always so inspiring and educational to hear people's stories and their Journeys and so important for the researchers at the S sobp conference to to hear that as well so if you if you want to learn more please visit our website metabolic mind.org we have a whole section devoted to resources resources for clinicians and for all individuals to help you learn more and help you on your potential journey of ketogenic therapy for brain based disorders and for mental health so thank you for joining us and we'll see you next time here at metabolic mind

Channel: Metabolic Mind

Views: 8,600

Keywords: metabolic psychiatry, keto, ketogenic diet, keto for mental health, nutritional psychiatry, mental health, mental illness, bipolar, schizophrenia, depression, alternative psychiatry, metabolic health

Id: kCpkxzg5sb8

Length: 72min 14sec (4334 seconds)

Published: Wed May 29 2024