Standing Up to POTS, Inc.
Standing Up to POTS, Inc.
  • Видео 210
  • Просмотров 70 238
The POTScast E194: Podcasts as a Form of Social Support with Dr Melanie Finney and Kate Pederson
POTScast listeners took a survey on podcasts and social support. Here are the results - podcasts can help individuals feel less socially isolated and provide them with informational and emotional support. Parasocial relationships between podcast listeners and hosts are also important.
Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support.
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Просмотров: 108

Видео

The POTScast E193: Psychological Experiences of POTS Patients with Dr. Alissa Sheldon
Просмотров 2284 месяца назад
Learn about the psychological experiences of POTS patients in this episode with Dr. Alissa Sheldon. Understand how to trust your symptoms and navigate through life despite challenges. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support. If you like thi...
The POTScast E192: POTS Diary with Erin from CT, a writer living with lupus and POTS
Просмотров 544 месяца назад
Erin is working on her Master's degree in English, and loves to write. She's written stories about her journey with both lupus and POTS, which started in her late teens and early 20s, but her first love is fiction. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocac...
The POTScast E190: Possible Causes of Brain Fog, Dizziness, Fainting, and Nausea in POTS
Просмотров 4505 месяцев назад
Attention POTS patients and those who care about them: Ever wondered what exactly is happening in your body when you experience common POTS symptoms like fainting, nausea, dizziness or brain fog? Tune in to this episode with Dr. Cathy Pederson to unpack the potential causes of these symptoms. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people ...
The POTScast E189: Functional Medicine Nutrition with Megan Barnett
Просмотров 2365 месяцев назад
This is a conversation between Jill Brook and Megan Barnett discussing the relationship between nutrition, gut health, and complex health conditions like POTS and mast cell disorders. They delve into topics like food sensitivities, the importance of micronutrients, and the role of functional medicine in managing these conditions. Standing Up to POTS is a non-profit organization dedicated to imp...
The POTScast E188: POTS Diary with Erica, an actress and dancer from California
Просмотров 765 месяцев назад
Erica really can't remember life without POTS symptoms and anxiety was blamed for many years. She currently attends school and lives bicoastally as she pursues a career as an actress and dancer. Her diagnosis brought relief, and learning how to control her symptoms have helped her follow her dreams. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for ...
The POTScast E185: Tim and Leah from Michigan, adjusting to POTS after 25 years of marriage
Просмотров 1586 месяцев назад
Despite Leah being largely bedbound, Tim and Leah's relationship is as strong as ever. How do they balance illness, household chores, and raising their children? Find out in this heartwarming episode. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support...
The POTScast E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook
Просмотров 4776 месяцев назад
In this episode, Nutritionist Jill Brook reviews the research findings on nutrient deficiencies in POTS, shares some tips, and directs listeners to a great resource for finding which lab tests are recommended by our Medical Advisory Board to determine whether nutrient imbalances may be a factor for you. With Jill’s husband as this week’s interviewer, we also learn about some nutrient experiment...
The POTScast E182: Quinton from Ohio, fitness enthusiast who developed POTS after mild COVID
Просмотров 1586 месяцев назад
Quinton loves to work out and research Long COVID. About two weeks after recovering from a mild COVID infection, he developed POTS and found himself nearly bedridden. He has slowly worked his way back toward being functional, although he still has significant limitations. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthost...
The POTScast E181: Venous Insufficiency in POTS with Dr. Alexis Cutchins
Просмотров 1,1 тыс.6 месяцев назад
Dr. Alexis Cutchins wrote a comprehensive review of POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about promoting good blood flow that might decrease other POTS symptoms. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS...
The POTScast E180: Emily from Washington, a medical assistant who developed POTS
Просмотров 836 месяцев назад
Emily was working as a medical assistant when she developed POTS. While she was aware of POTS, receiving a proper diagnosis still took 7 or 8 months. Many practitioners were dismissive of her symptoms, leading to a delay in treatment. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) throu...
The POTScast E179: Leah from Michigan, a bedbound mom who developed POTS after illness
Просмотров 1696 месяцев назад
Leah's life changed after her family got sick in December 2019. They rebounded in a couple of weeks, but she did not. She was diagnosed with POTS quickly, but remains largely bedbound and has had to shift her perspective to use her energy wisely for her family. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachyc...
The POTScast E178: Mast Cell Matters: Psychiatric Manifestations of MCAS with Dr Janet Settle
Просмотров 1,6 тыс.7 месяцев назад
Dr. Settle is a psychiatrist who believes that mast cell activation is responsible for some symptoms of anxiety, depression, bipolar disorder type II and others. She treats MCAS as a way to stabilize both mast cells and their emotional state. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POT...
The POTScast E177: Gender Matters in Perceived Burdensomeness with Dr Cathy Pederson
Просмотров 1127 месяцев назад
Perceived burdensomeness, feeling like a burden to friends and family, is common in POTS patients. This feeling can be a predictor of suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode! Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome ...
The POTScast E176: Hanna from Oregon, museum educator who waited 15 years for diagnosis
Просмотров 567 месяцев назад
Hanna had a 15-year journey to her POTS diagnosis after fainting episodes that started in her teens. An avid athlete, she has completed a triathlon and climbed mountains in her less symptomatic days. Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support....
The POTScast E175: Graded Exercise and Pacing for POTS Patients with Dr Catherine Lewan
Просмотров 3027 месяцев назад
The POTScast E175: Graded Exercise and Pacing for POTS Patients with Dr Catherine Lewan
The POTScast E174: Building Resilience with Dr Katie Gorman-Ezell and her student Katie
Просмотров 737 месяцев назад
The POTScast E174: Building Resilience with Dr Katie Gorman-Ezell and her student Katie
The POTScast E173: Kaylee from Arizona, an ER nurse with POTS, EDS and MCAS
Просмотров 2287 месяцев назад
The POTScast E173: Kaylee from Arizona, an ER nurse with POTS, EDS and MCAS
The POTScast E172: Mast Cell Matters: Mast Cells in Pain and Hypermobility with Dr. Linda Bluestein
Просмотров 4478 месяцев назад
The POTScast E172: Mast Cell Matters: Mast Cells in Pain and Hypermobility with Dr. Linda Bluestein
The POTScast E171 Post Gardasil: POTS Litigation with Attorney Drew Downing
Просмотров 1708 месяцев назад
The POTScast E171 Post Gardasil: POTS Litigation with Attorney Drew Downing
The POTScast E170: How are dehydration, thirst, ecstasy and POTS related with Dr. Harriet Carroll
Просмотров 7748 месяцев назад
The POTScast E170: How are dehydration, thirst, ecstasy and POTS related with Dr. Harriet Carroll
The POTScast E169: Live Recording from the 10th Annual SUTP 5K/2K
Просмотров 428 месяцев назад
The POTScast E169: Live Recording from the 10th Annual SUTP 5K/2K
The POTScast E168: Headache Management in POTS with Dr Karissa Arca
Просмотров 2538 месяцев назад
The POTScast E168: Headache Management in POTS with Dr Karissa Arca
The POTScast E167: Listener's Questions Answered with Dr. Cathy Pederson
Просмотров 1498 месяцев назад
The POTScast E167: Listener's Questions Answered with Dr. Cathy Pederson
The POTScast E166: Lauren from MN, tennis player whose life changed with Long COVID and POTS
Просмотров 1239 месяцев назад
The POTScast E166: Lauren from MN, tennis player whose life changed with Long COVID and POTS
The POTScast E165: Mast Cell Matters: Creating a documentary on MCAS, POTS, & EDS with Dr Weinstock
Просмотров 5509 месяцев назад
The POTScast E165: Mast Cell Matters: Creating a documentary on MCAS, POTS, & EDS with Dr Weinstock
The POTScast E164: Developing POTS after the COVID Vaccine
Просмотров 1,1 тыс.9 месяцев назад
The POTScast E164: Developing POTS after the COVID Vaccine
The POTScast E163: Diary with Courtney from Texas, who uses Chat GPT to organize her medical records
Просмотров 569 месяцев назад
The POTScast E163: Diary with Courtney from Texas, who uses Chat GPT to organize her medical records
The POTScast E162: Eating Disorders in Chronic Illness with Krista Day-Gloe
Просмотров 1429 месяцев назад
The POTScast E162: Eating Disorders in Chronic Illness with Krista Day-Gloe
The POTScast E161: Understanding Heart Rate Variability and Biofeedback with Rohan Dixit
Просмотров 3129 месяцев назад
The POTScast E161: Understanding Heart Rate Variability and Biofeedback with Rohan Dixit

Комментарии

  • @julieh6922
    @julieh6922 4 дня назад

    My son has been sick since getting covid in December of 2023. Was diagnosed with dysautonomia in May, but we have had no relief of symptoms. I feel so bad that he has no quality of life. we are on ER all the time because he feels like he is going to die. This podcast gives me hope. My son just turned 18.

  • @tatyanaandrus5
    @tatyanaandrus5 8 дней назад

    🌟🗽

  • @alyxxa6182
    @alyxxa6182 17 дней назад

    Stellate ganglion blocks have made the BIGGEST DIFFERENCE for me.

  • @KaciCreates
    @KaciCreates 18 дней назад

    I finally figured out that a Claritin makes my depression go away. Famotidine eases anxiety. I spent so many years being gaslighted by doctors but I knew there was a physical cause.

  • @ChihuAudioMan
    @ChihuAudioMan 19 дней назад

    This was fascinating. I was wondering if micro clotting was a big factor in some of these conditions including SFN. Any insight on using Nattokinase to help clot breakdown, or improve any POTS symptoms?

  • @ChihuAudioMan
    @ChihuAudioMan 19 дней назад

    Can micro clotting of the blood starve and damage small nerve fibers?

  • @bjornolson21
    @bjornolson21 24 дня назад

    I was seeing that Prozac has anti inflammatory effects. Is that true? Risperidone?

  • @nateandcharity
    @nateandcharity Месяц назад

    Pĺp

  • @almublanco_
    @almublanco_ Месяц назад

    I miss the Potscast! This has been a great source of support for me. hope everything is okay!

  • @shelleynowwilson
    @shelleynowwilson Месяц назад

    Wow. I have always worried about labelled as hypochondriac.

  • @LFROSTVEVO
    @LFROSTVEVO Месяц назад

    I am taking both a beta blocker and midodrine. Its may be important to note my cardiologist said i probably have the most severe case of POTS he has ever seen, and i was recently diagnosed with Hypermobile EDS. I am both on metoprolol ER 25mg 3x a day, and midodrine 10mg 3x a day, with my diastolic blood pressure falling to 50 (not 50s, but 5-0, 50.) as noted by a 24 hr ambulatory blood pressure cuff. I have just finished 3 iron infusions, and it still didnt prevent my intense fatigue. I am now on florinef 0.1mg QD. Lets hope that works.

  • @emalinedelapaix
    @emalinedelapaix Месяц назад

    So weird as I have MCAS and in Germany and Switzerland they advise us to stay away from vitamin c. Also I got MCAS and POTS after 1 Pfizer without Covid. All confirmed by the Post Vac Clinic in Marburg. I had iv vitamin c a few months after getting sick and ended up in the hospital. Later was told that it's because I have MCAS and high dose vitamin c can be dangerous. Can you comment on this?

  • @mrs.g4997
    @mrs.g4997 Месяц назад

    Is there a reference you can share to locate doctors that specialize in POTS?

  • @shelcoller7893
    @shelcoller7893 Месяц назад

    Thank you for the thorough explanation of mast cell activation. Appreciate you!!!

  • @karmiccorvidae2133
    @karmiccorvidae2133 2 месяца назад

    Has anyone started to question the use of benzodiazepines as mast cell stabilizing meds. Has anyone ever liked at the time of benzodiazepines causing mcad? How many mcad patients end up with MCS and Dysautonomia - due to being in tolerance of the benzo they are using and using as directed? There is a serious issue going on. An entire new group of patients that were prescribed benzoes for other conditions , and try to come off the med and develop severe histamine reactions and MCAD . The said patient finds a doctor and they follow the Afrin protocol, then what? There is a serious issues with the use of benzoes. I have reached out to prominent men wrs in the mast cell community and it is ignored. I developed mcad and MCS after a few years of taking Diazepam for vertigo. I'm 18 months into coming off of this med. Just trying to understand how this can be ores rived with conscience. Informed consent is so desperately needed.

    • @KaciCreates
      @KaciCreates 18 дней назад

      Benzos didn’t cause my huge mast cell flare but they sure made it worse. I didn’t sleep right for ten years, and I was only on a low dose for five weeks while I dealt with two kidney stone surgeries. So many awful, awful withdrawal symptoms. Now the only drugs I can tolerate at all are antihistamines, except for Benadryl. My nervous system is so sensitive, my whole life revolves around trying to keep it calm.

  • @MichaelMerritt
    @MichaelMerritt 2 месяца назад

    That was fantastic, loved all the details esp around her clinical experiences of various treatments and diagnosis.

  • @ShirleyKapaun
    @ShirleyKapaun 2 месяца назад

    He mentioned a NUCCA Chiropractor adjudtment is telling on MCAS, adjustment won't hold, maybe a week. Mine didn't hold at all, I turned my neck and went out on other side. Over and over again. He gave up on me. Anyone else experience this?

  • @Heatherelem
    @Heatherelem 2 месяца назад

    This information about how EDS/CCI, POTS, MCAS and long COVID and how they all relate is so incredibly helpful. It is EXACTLY what I have been experiencing and Dr Maxwell explains it all so clearly and succinctly. I will be sending the link to this talk to my Doctor. Thank you so much!

  • @maryr7593
    @maryr7593 3 месяца назад

    I swear I developed ADHD symptoms after becoming sensitive to everything. All my ADHD friends say they recognize the symptoms in me. A psychiatrist said I couldnt have had adhd because I didnt have it as a child. But I feel the distractiins, etc...yet there is no way to help eliminate symptoms like the ADHDers get to help them focus. Dr Leonard Weinstock thinks managing mast cells helps eliminate the mental health disorders...but i would say that ppl who feel better physically ...their mental health will improve but I am not sure if the disorders actually go away. There definitely is an anxiety component that develops when there might be a trigger around every corner. And the more triggers we react to..the more anxious we tend to get because you are now looking for it again. But this anxiety ramps up our stress levels which ends up with a furious loop. Weinstock has a questionnaire and it seems to help drs to see quickly their symptoms. In the fb mcas groups, there is a huge issue with suicide ideas because they cant figure out how to manage it...and no dr to diagnose.

  • @maryr7593
    @maryr7593 3 месяца назад

    Dr Anderson yt channel has a bunch of links to the various functional medicine drs in the US as well as international. The list is in the vid descriptiin. Check those professional orgs and see if anyone is in your state/country. If not in your specific area, make contact with someone and ask if they can recommend someone. Drs often move around and so it is sometimes difficult to keep track of them...but usually if they are in a professional org, they might be listed. Some drs who deal with mcas like weinstock, a GI dr, who will not be part of the functional dr professional groups.

  • @lynetteprice8519
    @lynetteprice8519 3 месяца назад

    LDN low dose naltrexone helps brain fog. I take 1.5 mcg and my taint of went away overight...literally!! 6 months later and it's still working. I personally believe that POTS is due to microclots from the spike protein. The spike protein messes with the vascular system, obstructing blood flow. One study showed that NAC and bromelin break up the spike protein. I'm hopeful because NAC is a anti inflammatory and anti viral. It also helps with blood clots

  • @AlluminaOnyxia
    @AlluminaOnyxia 3 месяца назад

    That was one wild and specific hypothesis. 😒 My immune system functions very different from the medical standard. That, I experience in person. I doubt it's some odd mutation that it comes from. It's strong. I heal from wounds fast and very well. My system pushes out toxins and foreign substances aggressively. After this 💉 my health declined, and my immune system hasn't been the same. I'm experiencing so many side affects that there is no way cervical cancer in senior years is worse than this. On top of it all, the prevalence of hvp to prevalence of cervical cancer, is significantly less likely than these 💉 causing life changing side-affects.

  • @abstuli1490
    @abstuli1490 3 месяца назад

    ME/CFS, Long Covid and Chronic Lyme disease is also linked to MCAS. There are also two other mast cell diseases that can cause many of the same symptoms. Systemic Mastocytosis which is very rare and Hereditary alpha tryptasemia syndrome which is common.

  • @StaringCompetition
    @StaringCompetition 3 месяца назад

    I also think about this in the context of autistic aggression Thanks

  • @allisong2159
    @allisong2159 3 месяца назад

    The more I watch this the more I feel one of the links between POTS and long Covid is Ehlers Danlos Syndrome or hypermobility spectrum disorders (issues with collagen)

  • @allisong2159
    @allisong2159 3 месяца назад

    You know that diagram that shows the overlap of POTS and Long Covid…ever look into those with EDS specifically hEDS? That is what most of them experience! I have it and have felt like what is described in the overlap all my life. The severity and symptoms may differ year to year but that’s basically my life. And my two girls

  • @jfouts1979
    @jfouts1979 3 месяца назад

    I'm a complex case...and need help...I've been sick for 15 years...I believe that everything you all have stated...is inline w the problems I experience...I wondered how often you have looked into copper deficiency as a source of part of the problem....i.e. involvement w histamine, collagen and connective tissue, synthesis of neurotransmitters and role of catecholamines...., possible norepinephrine deficiency...etc ...I suspect I also have a fungal infection...serial positive fungitell tests for beta d glucans....doctor's here are too busy to help...just found out I have osteoporosis of lumbar spine...I'm a 45 y/o single divorced dad...how can I get in touch with you...if you are accepting new patients??

  • @SweetiePieTweety
    @SweetiePieTweety 3 месяца назад

    OK I’m just gonna say it because it needs to be said. this man doesn’t recognize that he broke his best toy / tool because her job became doing whatever he said needs to be done when and how he wants something done… for him. And she didn’t say “No”. Yes, she did say yes to likely everything (because she cold and would and “wanted to”… maybe “wanted to”, maybe not, until she broke and then she couldn’t do it anymore. But she kept saying yes and not saying no to him or herself and likely no one else. She was strong she is strong but you can still break something that’s very strong if you use it outside it’s normal range of limit. I’ve been there in the same situation trying to do all that she was doing and yes I broke. The body says no when you won’t or are not allowed or somehow it doesn’t feel safe or the right thing to doin your role, position… job description. Read “The body says no” by Dr. Gabor. Written about and for people who can’t seem to find a place in space that it’s safe to say no really say no not even to themselves because they want to be that person that can do everything and does do everything then they’re not a safe person the person who keeps expecting them to keep doing is not a safe person their role in their job is not a safe job their relationship roll becomes unsafe because it’s exceeding the expectation the demand is exceeding the capacity day in and day out. Yes I was married to non emotional, we don’t really do emotions we can pretend to and call out and recognize emotions but we don’t really do them we do something about them by doing something engineer who is that high expectations in a very high demand religious environment. The wife becomes a workhorse to support the man and all of his pursuits and endeavors and it doesn’t necessarily stop with the addition of each child and the addition of each new pursuit and adventure. The wife is just expected to step up and step up and step up and well they do..: Until the body finally says OK if you can’t say no then I’m going to. I’m going to shut you down. And yes my husband was big into scuba windsurfing mountain biking all of the extreme sports go go go go go we’re gonna work hard we’re gonna play hard and there’s really no time for rest because you gotta pack your lunch you gotta have everything packed for the kids for you for me you gotta do it all chop chop. It’s your role. I work you do everything else. But here he’s like wait I’ve got a broken tool I need to somehow fix it yeah mine was in that place in space too but eventually he’s like oh this is broken for good it’s not fixable I need to trade it in. But you see in those fundamental religious groups you don’t get to trade your wife in for a new one you have to figure out a way to fix them or I don’t know somehow they must disappear or die Because divorce is not an option and yet your best tool is broken and you really need it to be fixed and that is a pretty high demand and expectation. A high hurdle that broken horse must jump to not be taken down. So yes he hast to say you have to rest because she’s programmed to never say no. Once the body realize you’re not safe in the driver seat because you won’t say no it will say no for you. And yes my ex-husband chose me because I was there for him through thick and then I always had his back until I couldn’t hang with him to have his back anymore and then at some point once the kids were old enough to kind of care for themselves and he realized he could manage without me and had found someone else that could care for his back then he made the switch and made the change. Because emotions really are not running deep there it’s basically I just need the right tool for the right job and while you’re not it anymore and I finally figured that out and you’re breaking the bank on resources. Or if I have to do all this myself then well I guess I can and I will and the kids are big enough now to step into what you used to do so we’re good without you. So yes these are the early years my husband stuck with me for many years of illness that became progressive and I kept trying to step up and we kept trying to balance but eventually yeah that just didn’t serve him anymore. The long haul. I take that back he adjusted I was a sick wife at home and he had a whole separate life of doing adventures and as long as I stayed sick at that point it kind of worked because I was kind of doing the house and the kids fine and he could live his own separate life out doing all those adventures with his secret wife but then once I started recovering myself then that was a problem and that’s when it was determined yeah I had to go. I hope somebody here is paying attention likely not this couple but maybe anyone th hat has eyes to see and ears to hear they might see that one of the contributors to these conditions in women is exactly this dynamic. So eventually he was doing his trips and trips with the kids to Florida into all kinds of places without me because I just couldn’t do it. Then eventually he was doing his own trips around the world extended work play work vacations without the kids and that whole separate life evolved. And while he could because I was still at home taking care of everything even in a very disabled state. And I got to the point with my chemical sensitivity I couldn’t attend any of the school and church functions and then he just became like the martyred husband caring for his poor sick wife such a wonderful man well meanwhile he was actually off having a grand time a whole separate life. So you have every right to have your emotion but honey you just gotta still do… Do you have a right to that emotion but you still gotta set that aside and do do do what you gonna do what you gonna do, bring what you got but stick that emotion in a sack and on your back and find something you can do. Woah Nelly…. The emotions need attention. I don’t Here’s someone who’s engaged in good dual communication he’s talk talk talking and definitely saying you just need to turn this into an action statement and not listen to our attention to those emotions. We just need to get that to do list together I got mine you got yours we’re moving this cart forward crack that whip I’m lead horse now. I’m gonna give you two minutes. Frick frack. So unhealthy. She is buying this as though this is all good and it’s just not please please please. Step back. I don’t really see dealing with the emotions I actually see that you’re given a time limit to Xpress them and then they’re said on the shelf so that you can get back to business. She kept whining because she needed to use the restroom when basic needs are shamed because you expressed them Lord have mercy. Shut up. When people can’t handle any level of whining and they need to shut you up sometimes in moments of desperation they will choke you literally. It happens. When things get real and real bad. Wake up! Hello.

  • @SweetiePieTweety
    @SweetiePieTweety 3 месяца назад

    I’m with you these patients that can actually get access to these two doctors are so fortunate and I’m incredibly jealous. Yes simultaneously thankful for what they’re bringing to the field and potentially eventually to the greater population. On a diving incident and Santa no free I had a spine injury both at the cranial effusion and the tail bone that was never truly treated 30 years ago and mast cell activation instantly occurred. There does seem to be an inherited potentiality of connective tissue disorder that may be made those areas weaker more susceptible To injury. After the injury it felt like there were fireworks going off from the base of my spine up into my head that was causing intense incredible pain that did subside but then the chronic pain and the mass cell activation and all that comes with it remained an increased. My mess so activation is severe without severe avoidance and so my methods to avoid are incredibly disabling and limiting especially my access to medical care and treatment financial resources housing food I can eat almost nothing. And yet I know it all goes back to that cranial instability in my neck and the signaling that’s keeping my system on high threat alert and constant pain keeping the mass cells active because structurally there’s been no remediation. 10 years after the injury I had a chiropractor do you wanna just meant that relieved some of the pinched nerve pain in my shoulder and neck so that adjustment did change some thing it did help but there’s been subsequent injuries and to degeneration. That chiropractor said my x-rays look like I had hit a brick wall going 60 mph about six times he like that number six I felt like hell of 666. And yet in the medical industry at that time I could get no remediation I couldn’t get access being new to an HMO they simply refused to address any issues other than some minor physical therapy. I simply learn to live with chronic pain and fatigue Yet eventually it all gradually deteriorated and fell apart. And yes I could pass the hyper mobile test for Ehlers-Danlos easily even at 60 years old. That to me the sensitivity of the mass cells was there since even pre-birth I was delivered early I had allergic bronchitis pneumonia recurrent for the first 10 years of my life basically to cigarette smoke my mom was a smoker. And then when I travel to Florida when I turned 18 I had an all over rash that was the same rash I would get to penicillin due to sun exposure and I was told that I was sensitive to the sun allergic to it do use sunscreen. But after the neck injury accident I became sensitive to basically universally reactive to environmentals. Then after doing elimination diet because my babies came out food sensitive to nurse them my own gut became sensitized and then I became sensitive to food to myself to severe degree. There have been highs and lows with various alternative treatments over the years but access to true medical treatment just hasn’t been there over the course of those years. And now that some knowledge and research and doctors like this are actually out there I know longer have access to due to losing funding and income and housing and all that goes with it because it’s really difficult to continue to be married to and sustain someone who has such a chronic illness it’s not only very expensive it’s a very difficult life to live.

  • @ADHDworksNow
    @ADHDworksNow 3 месяца назад

    Would love for you to speak about PMDD. I struggle so much in the TEN DAYS of my luteal phase. Severe mental health issues are the biggest issue. I began basically a microdose of testosterone cream regularly and estrogen pill microdose during the luteal. It has changed my life for the better. But I had two near death experiences in a row followed by 3 surgeries in 5 months. ever since then (June 2023) I have suffered from mcas symptoms. My question is: do I seriously have to give up the hormones? Is there any situation the hormones are not ruining our system? I will be so miserable without them. But if they’re triggering mcas I’m extra lost.

  • @karlacharger
    @karlacharger 4 месяца назад

    Why are all these studies comparing populations by category of “vaccinated” and “covid infected” without differentiating between unvaccinated and vaccinated covid infections? Without that factor included in analysis, it can’t be concluded that covid also causes it.

    • @lizarosa156
      @lizarosa156 2 месяца назад

      Differentiate in how many vaccines include boosters data . Look for correlations clues.

  • @jem9961
    @jem9961 4 месяца назад

    Super helpful thank you !

  • @juliemonk8946
    @juliemonk8946 4 месяца назад

    Thomas, look into Mast Cell Activation Syndrome (mcas). Sounds like you might react to known triggers that include strong emotions and heat. Hang in there - and thanks so much for sharing your story.

  • @tominnc315
    @tominnc315 4 месяца назад

    Mystery Symptoms: that says alot. Chronic conditions are imo a mind body cause. Much like migraines hemmeroids back pain. No real answers or solutions. I have post covid sensory buring numb etc legs This is valuable because every condition: we dont know we dont understand not sure etc Covid drove fear to a high level. Fear worry stress= a bodily response

  • @allisonkooiastra1519
    @allisonkooiastra1519 4 месяца назад

    Amazing job- a wealth of such wonderful information. A true professional provider that has not lost sight of the true meaning behind caring for patients as a whole! ❤

  • @tonyakay6337
    @tonyakay6337 4 месяца назад

    Thank you Dr. Cutchins for helping me figure out my symptoms since having covid. This was a great pod cast. Back to my research and reading...LOL!

  • @BandieDiamanda
    @BandieDiamanda 4 месяца назад

    thanks so much for the video, i now understand my body and my pots a bit better and have something to explore. :) quick note, the section titled "ferroreceptors" it sounds like guest is actually saying "baroreceptors" which would make sense as it's relating to pressure

  • @sashahempsall9901
    @sashahempsall9901 4 месяца назад

    I am on midodrine can u do a video this

  • @barbe.1556
    @barbe.1556 5 месяцев назад

    Fantastic discussion from a very well informed physicians. It's unfortunate that most allopathic 'health plan' doctors in northern California have never heard of LDN. Supplements and herbs, don't even ask...

    • @deborahakey9308
      @deborahakey9308 3 месяца назад

      I’m on LDN & lied to get it saying craving of drinking & using opiates! Taking 3mg daily only for 1 month now! I KNOW it helps but I may need 4.5 mg. COMPOND…

    • @maryr7593
      @maryr7593 3 месяца назад

      Check compounding pharmacies...meaning pharmacies that take a few mg from one drug and make into a cream like progesterone, testosterone, and in this case Low dose naltrexone. (Naltrexone is used for making alcoholics sick when they drink alcoholic beverages.) Low with low dose...the pharmacy has to take a very low dose (up to 4.5mg) into a capsule. Sometimes insurance covers some of the cost, other times they don't. Some pharmacies will actually help you find drs that prescribe in the area.

  • @omarlocke4351
    @omarlocke4351 5 месяцев назад

    drinking pre-workout!? yeah. i call total BS! i trained for more than 10’years i weighed over 230lbs during my training season and 315 in my off season. this guy cannot be legit. definitely a troll.

  • @omarlocke4351
    @omarlocke4351 5 месяцев назад

    paxlovid helps with covid!? uhhhhh. i dunno. this dude does not sound legit at all. i guess we should all get all the medical products we can consume... ...again. i’m not sure how he can do weighted workouts when i went to the gym my heart rate was over 220. i went to the hospital and they told me i was about to have a heart attack. this dude is a fraud.

  • @debsalvesalve7850
    @debsalvesalve7850 6 месяцев назад

    Amazing! ❤thank you

  • @melzerzvlogz6027
    @melzerzvlogz6027 6 месяцев назад

    It runs in my family to pass out for no reason. My dad called it something. When I was young I was on my knees while my mom fixed my hair for school... Then I stood up and blacked out and slammed my face onto the faucet and my mom carried me to my bed till I woke up. Very weird.

  • @denisebrand8536
    @denisebrand8536 6 месяцев назад

    if mast cells cotinue to make substances even when the trigger has gone another hypothesis is that senolitic cells/zombie cells are driving the symptoms.

  • @sarahturnbull7610
    @sarahturnbull7610 6 месяцев назад

    Excellent, thank you!

  • @seancushman
    @seancushman 6 месяцев назад

    Thanks so much, I'm struggling to not be dismissed. Since April trying to get doctors to listen that there's a whole lot of stuff going on, I hope I can hang on long enough to get treatment. You look healthy... I looked a lot healthier 8 pounds ago and then I looked horrible in my opinion. 126 pounds at 6' tall to be said to look good they need a shrink 😢 Thanks for the great information I will be able to share with an interested provider.

  • @nsetonhandville1270
    @nsetonhandville1270 6 месяцев назад

    What's the website for lab tests please? I listened twice but was not able to catch it.

  • @SweetiePieTweety
    @SweetiePieTweety 6 месяцев назад

    Loved this!!!❤. it’s nice to have the inside the fridge partner perspective and the… ummmm… ya…. did that work for you 🤣 And the acknowledgment that people with MCAS and pots are going to struggle and getting their nutrients that are essential but is it putting the cart before the horse and hypothesizing its nutrient deficiencies as cause versus nutrient deficiencies as a symptom. And then potentially so many symptoms associated with one or the other or both. Such an unraveling for each individual. I do remember there was a point in time that I had access to resources to do some nutrition support and organic eating and had the energy reserves to cooking a way that was working for me and there were a few things that I noted worked for me it may not work for someone else. I have MCAS as my major present and later lost covid POtS as a secondary now bigger present along with digestive pelvic and urinary issues gone gangsta post covid septic positioning mold exposure all at one time. But when it was primarily my MCAS causing me issues I was able to do a far infrared sauna detox yes that was a luxury for two weeks with a private detox practitioner. It helped! At that time testing revealed a giardia infection that was unresolved I thought it had been resolved with natural pathic remedies but it had not so she recommended we hit it with a big anabiotic stick and we did and that helped dramatically. During the far infrared detox two week with niacin push.. heavy juicing push and a personalized mix of supplements adjusted about every three days based on results… gradual exercise bike cardiac stimulation and slow outdoor around the clocks walks part of the deal… sweating is good for you mantras lol… summertime.. The post detox at home the final base vitamin mix plus quercitin plus juice at home with all organic and chicken based soup and grape seed oils and low histamine lol lol… but the two magic potions where I saw a boost was… drum roll… Liquid Chlorophyll in a bottle a hit twice a day shot. and multiple packs of Emergen C vitamin packs multiple daily. Continuation of progressive cardiac exercise and sweating

  • @user-xx5lc8rs2w
    @user-xx5lc8rs2w 6 месяцев назад

    Hello, thanks for this episode! It helped me a lot being someone who also is not experiencing heart rate as my most prevalent symptom. I also struggle with sleep. Helpful to hear your experience. I'm also nearby in Georgia. Do you know if there are any support groups in Birmingham? I'm not aware of any near me.

  • @SweetiePieTweety
    @SweetiePieTweety 6 месяцев назад

    Ohhhhhhhh Godsend! A doctor of this degree and caliber and knowledge in Atlanta? And she has resource doctors? Please please please dear Lord let me and my children find a way to access this amazing doctor. Thank you for doing this Podcast! Thank you. Hope. Hope these days has been rare but this just gave me hope. Atlanta is such a difficult place to live with these veinous issues with the best humidity of summer then the cold humidity of winter making the symptoms so different based on the seasons and the mast cells responding to the levels of mold and pollens… so many environment type triggers. Boom! Finally a doctor who understands the dynamics of the veins and how it impacts so many organs and the associated symptoms. Pelvic veinous disease… oh yes yes yes… so need to research this! Living so much misery for so long. 👍👍👍 Ok must watch Dr. Stevens episode on pelvic. This is just so miserable. I have found wearing heat packs my only solution in the pelvic area for digestion urinary and blood flow in winter… stick on heat 🤷‍♀️ Oh so wish for leg pumps and remedies but my mast cells activation is so bad I have access to almost nothing argh. But my mission has been to find the team if / when I ever have access to care… IF / When. And my adult son who has POTS finding a doctor for him in this area for when he is ready to seek more treatment if and when he feels it is necessary. Diagnosed a few years ago and minimally managing symptoms and slowly recovering functioning and he has seen physical recovery with pacing and exercising and compression… but shy to seek treatment and the demand to work long hours in management making it difficult to get away for care. But I have been in a mission to try to find him resources who will get it and believe him because previous cardiac and doctors didn’t offer much at all. And yet he implements protocols so diligently when he is given the opportunity. Hope!❤❤❤❤❤