Syncope

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    Community Voices

    When Life Goals Change

    <p>When Life Goals Change</p>

    Lessons Learned From Grieving an Unexpected Diagnosis

    In the past year, I started experiencing lightheadedness, fatigue, headaches, shortness of breath, and “brain fog” — and the symptoms increased the longer I stood. Basically, I was experiencing everything some people would feel before fainting, but luckily, I’ve never hit the floor. There are days when someone speaks to me, my mind is cloudy, and I’m trying so hard to process what they are saying to me that it becomes exhausting. Two weeks ago, I had no idea what neurocardiogenic syncope was. I had no idea I was about to be told that three of my heart valves were mildly leaking and that I have a small hole near my atrium. It was honestly unexpected news. I’ve heard “Your lab work and scans were all normal” so much that I didn’t expect to hear anything other than that. It took me a week or two to actually process the news. I felt like I was passing through the five stages of grief over and over again. Denial: The scans I had a few years ago never showed this, so what if the doctor made a mistake? Sometimes I do have good days when my symptoms are minimal. Are my concerns even valid? Anger: Didn’t anyone catch this years ago on my last scan? Of course with my luck, this is happening to me. Bargaining: What if I had taken better care of myself? What if I had changed the way I eat and exercise? Would this still have happened to me? Depression: I have a lot of health anxiety regarding my heart, and it also manifests as depression symptoms. I am at a high risk for stroke, and I am terrified of the possibility of dying young. I’m also afraid  of having to face one of my worst fears — open heart surgery. Acceptance: So far, everything is mild and just needs to be monitored. My relationship with my body has changed, and there are things I have to do differently now, but that’s OK. One aspect of an invisible chronic illness is the compromise and sacrifice that often comes with living with the condition. You may be trying to navigate your life while simultaneously trying to figure out what type of life won’t make you feel too sick. It can be really frustrating — especially if you’re young. Changing your life plans can come with a lot of sadness and grief. When something in your life gets turned upside down at such a young age, you may start to view life differently. One good thing about me, though, is that I have the desire and willpower to persevere. I’ve had to accept that I have some limitations now, but that isn’t going to stop me from achieving anything I set my mind to. There are a few things I’ve had to learn how to do differently, and there also are a few things I have learned about life in general. 1. It’s OK to grieve for the life you had before your symptoms began. I don’t remember the last time I was able to walk around a store or through the mall without feeling like passing out or needing to stop to catch my breath. I went to IKEA with my boyfriend a week ago, and at one point I got so lightheaded that I had to stop. I was walking, which had come easily to me before my symptoms started. Sometimes I feel like because I am young, I am invincible. But that’s far from the truth, and I’m grieving it right now. 2. Don’t take the little things for granted. I will never take for granted how good a deep breath feels. Learning the power of breath saved me. When control of your body is taken away, breathing is something that can allow you to gain some control back. If all I can do is take a few big, deep breaths, that’s OK because that still means I’m alive. Being able to breathe during procedures or episodes is helpful to me. Whatever you are feeling in the moments when you find yourself needing to focus on your breathing will probably pass. I am grateful for the power of breathing. 3. It is OK to rest when you need it. If you are tired, that is OK. Your mind and body might be adjusting to your condition, and it may take a while to find your new baseline. Our bodies seem to be always changing, and that is OK too. Every day is different for most people. We live in a society that can promote a toxic productivity culture in which not taking breaks and working overtime is applauded. However, for me, taking regular breaks and sitting down has been crucial to preventing burnout and symptoms of syncope. If I haven’t taken a break for a while, my body will definitely let me know that I need to. Trust your body — it knows you best. When you have a chronic condition or have recently been diagnosed with one, lean into it. Learn everything you can about your condition. Learn from your body. What makes you feel good? What makes you feel sick? Start to intentionally seek out and recognize the good things in life and be grateful for them if you can. Use what you learn to help others — just as I want to do.

    Community Voices

    Internal Hell: Burning from the inside out. A story to remind you to never give up and never give in until you get answers.

    It’s been hell, literally, inside my body as I’ve been burning from the inside out for just over half my life now.

    For nearly 16 years I was brushed off as a liar, a psychosomatic case, an anxious or depressed individual, that I’m too young and must be making up my symptoms.

    What could amyome possibly have to gain by faking their illness?

    To me, I lost everything! I had to change my career right after I graduated. I had been bedridden for 8 out of 15 years. I had a small child and was a single parent who didn’t have family to help.

    I’d seen over 100 doctors in the last decade alone. Most of them say, “you’re a young woman of child bearing age, it’s obviously just anxiety.”

    We’ve gone through the diagnostic odyssey of Lyme (equivocal), EBV (reactivated) which took 5 years of my life, genetic testing, doctors did all the same ANA and CMP and thyroid tests over, and over, and over again and they were almost always within normal limits.

    I’ve been told I just needed to excersize more despite my intolerance to it due to POTS, frequent falls and constant dizziness with syncope. My heart rate jumps 100 points on almost a daily basis.

    I’ve been told it’s all in my head by Mayo Clinic who refused a formal written request for further testing, even after they diagnosed me with Ehlers Danlos Syndrome and confirmed Medullary Sponge Kidney Disease.

    I found out that due to this autonomic dysfunction, I have a second degree heart block which has been symptomatic at rest and when standing. My heart randomly decides to reset which is on a whole other level of scary. My heart rate gets down to the 30s and up in the 190s.

    Finally, I pushed for a different type of testing with a new neurological specialist. The golden standard of a biopsy for small fiber neuropathy.

    Then took the results to a neuromuscular specialist and said what’s causing this? They took my blood and sent in for a WASHU panel and after patiently waiting 6-8 weeks it came back positive for two antibodies.

    My TS-HDS was 80,000 and my Histone H3 was 2,100.

    TS-HDS is an autoimmune heparin antibody and depending on the person it can have very different effects and bind to the blood vessels and even parts of the autonomic nervous system. It gets activated by anything that can set off the immune system. Childhood sicknesses make me bedridden for a week without a warning or even a sniffle.

    Histone H3 is an antibody related to an ataxic gait syndrome that normally affects those ages 65+. Now I know why I have such difficulty walking. It’s so bad that I have opted for a power wheelchair that I use now because I move like a sloth and it’s painful.

    It’s given my back my mobility in a way I never thought I’d have again. But honestly; the best part is validation.

    I finally have answers and proof that this is very real and not just anxiety. Sure, I had some anxiety in not knowing what was wrong. Any person who cares about their daily functional capacity being reduced with no answers would, in my opinion.

    But this is different, this is on paper and real. I’m currently waiting for insurance approval for IVIG therapy. The neuromuscular doctor thinks it may help.

    I wanted to share my story because it’s been hell. Physically and mentally. It’s draining and exhausting when you’re already exhausted. I know it. I’ve been there. I’m still there.

    You have to be your own advocate. You can research potential conditions and request that your doctor rule them out.

    Just know, that there is hope. One day you will get answers so don’t give up, please, hang in there. They say there has to be a storm before the rainbow appears.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #Advocacy #AutonomicDysfunction #Heartblock #EhlersDanlosSyndrome

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    Community Voices

    Searching for a diagnosis and treatment

    I have all the symptoms of #PosturalOrthostaticTachycardiaSyndrome including the pulse rate spikes when I change position and frequent near-syncope. I just had a tilt table test and the doctor and cardiologist both said it’s not PoTS because my blood pressure is going down instead of staying the same. Now they are saying they might not be able to diagnose me with anything, I will just need to monitor and avoid my symptom triggers. This is what I have been doing for years and it is not good enough! I am so limited in my activities and work. I am feeling so discouraged. Any advice or helpful information out there? #Undiagnosed #MedicalZebra #AutonomicDysfunction #LivingWithPOTS

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    Community Voices

    POTS Symptoms

    I was diagnosed with POTS after struggling for years of getting a diagnosis. In the past year, I have noticed my symptoms have been getting much worse and more intense. I haven’t completely passed out before but I do struggle with pre-syncope. For those of you who do completely pass out, have you always passes out since being affected with this or is this something that can progress and you might eventually pass out? I’m new to the diagnosis (not the symptoms), so just trying to gain a better understanding as my doctors don’t fully understand POTS so I’m trying to figure this out on my own. Any thoughts or suggestions or personal experience is greatly appreciated!
    #PosturalOrthostaticTachycardiaSyndrome

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    Learning About and Living With Bulimia

    According to the National Eating Disorders Association (NEDA), 30 million women and men will struggle with an eating disorder at some point in their lives. Bulimia is characterized by binge eating, often with high caloric foods followed by purging. If not stopped, it can cause major health concerns. Bulimia does not discriminate against race, sex, weight, body type or socioeconomic status. Many people struggle with this life-threatening illness. So, why is this disorder so misunderstood? Through my personal experience, I’d like to provide some insight. 1. Development of bulimia Bulimia, along with other eating disorders, has been stereotyped as only related to weight. It’s important to understand that this is not always true. Yes, social idealization of being thin can be a culprit, but environmental factors often contribute to the development of eating disorders. This was true for me. In my experience, trauma played a role. Sexual abuse, constant emotional and physical torture from high school bullies, along with a loss as a young adult left me emotionally scarred. Over time, depression set in. This was the beginning of the foundational cracks in my mental health. On the verge of an eating disorder, you are often unaware of what is happening to you. So when one emotional evening had me eating too much, I got painfully bloated. I purged for the first time. The release felt good. There were no thoughts about weight. Only loss and pain. Because of my emotional state, somehow the release I felt made me feel better, emotionally. On days I felt down, I ate junk and the cycle repeated. Before I knew it, what had been manifesting over time, suddenly had a strong, overpowering grip on me. It’s important to know that something that causes a negative impact on your psyche has the potential to manifest into something destructive. 2. A day in the life of a bulimic Dopamine is released during overeating, which creates a sensation of pleasure and euphoria. This process allows us to continue the behavior so that we feel good again. It’s an addiction. I lost a little weight and was complimented on the way I looked. I welcomed it. I lacked self-esteem, so the more compliments I received, the better I felt. For something that had nothing to do with weight, it soon became all about it. I told myself that I was going to stop once I’d reached my goal. I never did. Still, I thought I was in control. A day in the life of a bulimic consists of being consumed with thoughts of food. Every minute of every day. Food cravings, ingredients, calories. How food would impact the scales. A tug of war between “I’m going to be good today!” and the consequences of failing. Guilt immediately after eating and more so knowing you’d purge. This immediately turns to disgust once the inevitable has happened. Apprehension and panic take hold. Will everything come up? When you feel lightheaded or pass out, this quickly switches to, “maybe I should have left a little inside to keep me going.” On the outside, I would put on a façade. Behind closed doors, I was depressed and felt as though I didn’t want to go on. 3. Changes in behavior I became obsessive and compulsive. The daily battle was intensifying. The me I once knew morphed and I became irritable and had aggressive outbursts. I was deceitful and found myself doing things I could never have imagined. Lying, treating people disrespectfully, stealing. 4. The truth about bulimia Many don’t understand why they become bulimic. I believe it’s one of the contributory factors of relapse. They are treating the symptom and not the cause. Many bulimics look healthy. It can disrupt personal and family dynamics. You can be bulimic even if you eat healthy meals between purges. This is not a choice. It’s a serious illness. There’s an increased risk for suicide and medical complications Misconception: Those battling bulimia can stop at any time. Those tormented by bulimia make frequent trips to the bathroom after meals and often abuse laxatives. They drink excessive amounts of water when consuming food. You may see scars over the knuckles. 5. Setbacks and triggers Setbacks are to be expected. I can attest to this. The sequence of binging and purging can be triggered in response to stress and anxiety. The feeling of guilt and being a failure for slipping up, adds to this. 6. Side effects of bulimia Cardiovascular complications Syncope, from dehydration and lack of nutrition Memory loss and lack of concentration Digestive issues Esophageal damage Hair loss and dry skin and nails Dental problems Menstrual irregularities And more… 7. Road to recovery A strong support system is crucial. Positive reinforcement for all the small steps that are made towards recovery are encouraged. Supporters: these words of encouragement are for you. The more I learned, the more I realized why I hadn’t been successful in my recovery. The key to it all was nourishing your mind, body and soul. It isn’t enough to eat healthy and hope that nothing triggers a purge. Staying strong emotionally and physically through exercise is important, but isn’t enough. Dealing with past trauma is a crucial part of healing, but on its own, it isn’t enough. Taking time to yourself to reflect and relax, giving back and being grateful for what you have, all have healing properties, but that too isn’t enough. You need mind, body and spiritual fulfillment. Win your battle with bulimia! To those that are fighting their own battle: Here is a letter from me to you . Take the first step on your journey to a more fulfilled life…   By Shani-Lee Wallis Author of “War with Myself: Achieving Victory in the Battle with Bulimia.”

    Jessica
    Jessica @bpdgirly
    contributor

    Coping With the Stigma of Mental Illnesses and POTS

    I’m used to living with mental illness , as I first started experiencing depression at 12 years old. As I’ve grown older, I’ve learned to live with my multiple mental illnesses ( anxiety disorders, borderline personality disorder , unspecified bipolar disorder , an eating disorder , and depression ). I’ve battled my mind for years but was thankful to not be physically ill. All that started to change at the end of 2019. I started experiencing migraines, and I fainted for the first time in December 2019. At first, doctors said I was chronically dehydrated. They told me that my mood stabilizer had an “unofficial” side effect of dehydration. So I started drinking water thinking it may solve all my problems and that it was nothing to worry about. Well, that didn’t last long. I started feeling dizzy more and more often, and my migraines became completely debilitating. I decided to go to the doctor to figure out why I was having migraines and got referred to a neurologist fairly quickly. I live in a more rural area. There aren’t “world-renowned” doctors here. Let’s just say the pay is the view here. If you’re looking for a doctor, you take what you can get here. I consider myself lucky to have the neurologist I got, as he listens to me and is actually educated about my symptoms. He diagnosed me with postural orthostatic tachycardia disorder (POTS) . This was both a blessing and a curse. Why was it a curse, you may ask? My POTS became an excuse for doctors to write me off. I wound up in the emergency room for severe dizziness and intense stomach pain. I am a college student, so unfortunately, most of the time the ER wrote me off as a drug addict seeking pain meds (like they do to many college students). This time, they also just claimed I was having a “ POTS flare.” I left in tears. I knew something else was going on with my body, yet no one listened to me. I also entered the world of chronic illness — and all the challenges that often come with it. POTS causes tachycardia and often also causes hypotension upon standing. This can cause debilitating pre- syncope and syncope . Gastrointestinal distress and migraines commonly occur alongside POTS also, yet many see POTS as a “fake” disorder. I was experiencing people saying that they also “get head rushes when standing.” So I was dealing with the stigma and invalidation of physical illness along with the stigma of my mental illness . Then my mental illnesses started impacting my physical health. My anxiety was increasingly getting worse and triggering physical symptoms. I now get migraines after crying, get dizzier when I’m anxious, and when I’m struggling with eating, it makes all of my symptoms worse. My anxiety was growing and growing in my college classes as I was constantly afraid of fainting and having 911 called. I’ve been learning to cope with how my mental illnesses and my POTS interact and also figuring out how to live and go to college with them. I’m truly lucky that my doctor doesn’t write off my symptoms as anxiety (which I know can be rare for my fellow POTS warriors). One thing I did to help with my health was order a MED ID bracelet in case I do go unconscious in public or on campus when I’m alone. I’m also continuing talk therapy to help with my mental health . I’ve learned what I need in my “emergency kit” to help with my physical health when I’m out in public, and I’ve realized I’ve had to change what my “normal” looks like. To those who feel like they are struggling with having both mental and physical health conditions, you are not alone. Treating your conditions together may help you. Understand how they affect each other. You are still worthy of living an incredible life.

    Community Voices

    The reality of living with POTS

    <p>The reality of living with <a href="https://themighty.com/topic/postural-orthostatic-tachycardia-syndrome/?label=POTS" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceac00553f33fe99a8c8" data-name="POTS" title="POTS" target="_blank">POTS</a></p>
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    Community Voices

    Archer introduction!

    <p>Archer introduction!</p>
    Community Voices

    Chronic Fainting since 14 awaiting diagnosis

    Hello I am Bailee Ray 19. I am a twin . I’ve been passing out quite frequently since the age of 14. My twin does not have any symptoms related to what’s going on with me. In 2015 I started fainting when I was 14. This continued until I had to use a wheelchair everywhere and I would faint everyday. I was originally diagnosed with Neuro cardiogentic syncope. Around the year 2020-2021 I had a period with no fainting almost went a year and a half with no symptoms , I started increasing my exercise and fixed my diet which seemed to be the solution to my dysautonomia . However recently July 13th I passed out for the first time in a year and a half. I was on vacation in a hot state, so I figured that’s what caused it. My fainting is back , I can’t stand for more than 10 minutes , bond to a wheelchair, fast heart rate when doing the simplest of things such as standing or going to the bathroom. I had to defer my second year of college while my twin attends university because my fainting has become so frequent. My new neurologist doctor suspects I either have a Neuromuscular disorder- meaning at 14 I was misdiagnosed. I had a video visit with Cleveland clinic doctors they too believe it was misdiagnosed are leaning towards POTS. I was on medications such as midrodrine, Propranolol, any many of the medications used to treat dysautonomia. I truly don’t know if I have Pots/dysautonomia , some other illness, or secondary pots thats being caused my something else. A couple of my lab results came back abnormal such as low absolute neutrophils, 1.0.0.1 RNP antibodies, postive speckled ANA. I’m going to Cleveland Clinic in November to rule out if I have dysautonomia because I don’t show any signs other then increase heart rate and low blood pressure. I’m having a QSART test , tilt table, and skin biopsy hopefully that will give me an answer. I’m trying to be patient but it’s hard because as of right now my quality of life is being effected seeing as I can barely stand for 10 minutes and I’m constantly lightheaded with fatigue/brain fog. I’ve had at least 10 doctors visits in the past 2 months. I went to being completely normal on my way to college two months ago to being practical house bond now. My hands and feet are constantly freezing and cold also. I am currently doing the Levine program 20 minutes on my bike 3-4 times a week which leaves me very fatigue after. Some weeks I can barely go on my recumbent bike for 10 minutes. currently can’t walk at all right now. Physically I can but it makes the fainting spells and symptoms worse or I become overly exhausted within walking a short distance. I’m using a wheelchair to get to and from places.I’ve done this in the past due to chronic injuries I’ve had because of the fainting. Two concussions and a broken collar bone. If I stand and/or walk for less than 10-15 minutes on a good day which isn’t often. Last time I stood for 8 minutes and fainted badly injuring my neck and shoulder. I instantly get lightheaded and pre

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