Syncope

Join the Conversation on
Syncope
1.1K people
0 stories
151 posts
  • About Syncope
  • Explore Our Newsletters
  • What's New in Syncope
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    If you have a service dog for POTS, neurocardiogenic syncope, and/or vasovagal syncope, please read!!!!

    Hello there! I'm new to The Mighty and I'm wondering if anyone in a similar situation has a service dog. I've had migraines for many years and was diagnosed with vasovagal syncope about a year and a halg ago, but I was jsut diagnosed with neurocardiogenic syncope and POTS more recently.

    I'm interested in having a service dog, but I'm wondering if anything with similar diagnoses has one.

    Please let me know how you went about this and what I should know.

    Thank you so much in advance

    1 comment
    Post

    Questions about Service Dogs for POTS

    Hi there! I'm new to The Mighty and I'm wondering if anyone in a similar situation has a service dog. I've had migraines for many years and was diagnosed with vasovagal syncope about a year and a halg ago, but I was jsut diagnosed with neurocardiogenic syncope and POTS more recently.

    I'm interested in having a service dog, but I'm wondering if anything with similar diagnoses has one.

    Please let me know how you went about this and what I should know.

    Thank you so much in advance

    1 reaction 2 comments
    Post

    Service dog for POTS

    Hi there! I'm new to The Mighty and I'm wondering if anyone in a similar situation has a service dog. I've had migraines for many years and was diagnosed with vasovagal syncope about a year and a halg ago, but I was jsut diagnosed with neurocardiogenic syncope and POTS more recently.

    I'm interested in having a service dog, but I'm wondering if anything with similar diagnoses has one.

    Please let me know how you went about this and what I should know.

    Thank you so much in advance

    3 reactions 5 comments
    Post
    See full photo

    When Life Goals Change

    Life Goals

    Everybody has a game plan for their life. Some people plan to go to college and get a degree. Some are adamant they will carry on the family business. As a child, you may remember thinking you wanted to be an astronaut or a ballerina. For me, I have always had big goals for my life. I was certain that I would go to college, finish with honors, and become a teacher. I had not considered that sometimes goals cannot become reality.

    After graduating high school, I was starting college and working full time in a local factory. I could work all day, and still have plenty of energy to spend time with friends and go out. My friends and I would go out hiking on the weekends, and drive around for the fun of it. I was still on track for my dream of being a teacher, and felt like nothing could stop me.

    When Everything Goes Wrong

    After a few months of feeling great and doing essentially everything I wanted to do, I started to develop some non-specific symptoms. I had a headache and was tired all the time. My doctors were determined to figure out what was wrong. I made every life change possible, tried each medication that was suggested, and underwent countless tests. Meanwhile, the pain was increasing and I was so exhausted I could hardly get out of bed in the morning.

    Now, several years later, I am still in pain daily. I have a laundry list of diagnoses and still no clear reason for what is causing my chronic illness. Whereas I was once able to go anywhere and do whatever I wanted, now I am limited. I can no longer drive, and have to plan every day around my pain levels. I cannot go out and work a regular 9-5 position as I would like to do. There have been many times when thinking about everything that I’ve lost, that my mental health suffered and I wasn’t sure where to go next. So, what do you do when your life goals change?

    Ways to Cope

    ### There are a few ways I have learned to deal with my chronic illness and mental health struggles throughout the years. First, look for what you can still do. While I was not able to finish college and become a teacher, I am still able to share my knowledge with others and teach through my platform. I can support my community and volunteer. I am able to make money and support my family.

    Second, focus on your strengths. I have the ability to write. I have an innate ability to look at words and piece them together in a unique way. Proofreading and finding errors comes naturally to me as well. I thrive on listening to others in order to figure out their needs and how best to support them.

    Third, focus on caring for yourself. While the mention of self care normally brings images of face masks, painting nails, and hot bubble baths, it encompasses so much more than that. You can support yourself by saying no when your pain levels are too high. You can keep a bottle with you and drink water so you stay hydrated. Sometimes, the best self care can be taking a nap and trying again tomorrow.

    The last way I deal with my life goals changing is through leaning on my friends and family. Everyone needs a support system, a group of people you can go to when life gets hard and everything feels like too much. You can be the toughest person in the world, feel invincible, and yet still need your people. They will listen to your struggles, empathize, and help you plan for the future. In return, you can support them in the same way. The empowerment this gives is unmatched.

    Though life goals can change and frequently do, it doesn’t have to be the end of the world. By accepting your limitations, and making adjustments for your health, you can survive and even thrive. When times are tough, slow down and focus on how you can best care for yourself. Look at what you can still do, and do it to the best of your ability. Lastly, lean on your friends and family. Together, you can get through anything.

    #ChronicIllness #alliewritescreatively #ChronicPain #Syncope #Migraine #OrthostaticHypotension #OpticNerveHypoplasia #howtocope #Acceptance #whenlifegoalschange #Disability #ChronicDailyHeadache #chronicmigraine #Writing #writingastherapy #selfcare

    Post

    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

    18 comments
    Post

    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

    2 comments
    Post

    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

    2 comments