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Neurocardiogenic syncope
Neurocardiogenic syncope
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A Year In…
As a recently diagnosed person with Sjögren’s Syndrome, Undifferentiated Connective Tissue Disorder, Hydradenitis Suppurativa, POTS, and Ehlers Danlos syndrome, I am coping and learning.
My journey started in May of 2022, when I complained to my PCP that my dermatologist kept telling me that my hives were a problem for my allergist, but my allergist kept claiming they didn’t do anything with those, to talk to dermatology.
She asked about any other symptoms, knowing I already had a history of ADHD, anxiety, PCOS, uterine fibroids, endometriosis and GERD. She asked about pain and I told her I always have some pain, but it’s never anything major and never consistently placed in my body. She asked about headaches and migraines, energy levels, dizziness, fatigue, about stomach issues and my bowel and bladder frequencies. She asked about my family history. She decided to run a multitude of labs including a THS, CBC, CMP, and ANA. When the ANA came back positive, she said we’d found an answer. Well, not the final answer, but we’d found a direction. So off to the rheumatologist I went.
After one very dismissive rheumatologist 3 months later, I found another rheumatologist 2 hours away that was recommended by a friend. This doctor accepted the tests that were previously ran by my PCP, added more tests to my list including another ANA and AVISE testing. This was how we determined what I had.
Originally thought to be lupus, (It’s never lupus!- House) they found Sjögren’s Syndrome primary, with UCTD in there as well. The UCTD could eventually become LUPUS, but I didn’t meet the full markers for a lupus diagnosis. With this diagnosis, I did the base line eye exams and began taking Plaquenil. While taking this, I still experienced pain, motility issues, and other things but after 6 months, I could definitely feel a significant reduction in my pain, fatigue, and brain fog. This alleviated a significant portion of my pain, which in turn reduced my anxiety and depression. On top of this, I also read about joint health and increased my Vitamin D intake (which had always been low without a supplement) and added Glucosamine, Turmeric, Ginger and Black Pepper supplements to help with any nutritional deficiencies. Since I have continued to decline every time my body encounters a virus, I have increased my water intake, reduced my caffeine and sugar intake, and made some major lifestyle changes.
Among my lifestyle changes, I have been advised by my rheumatologist to avoid the Sun. I’m naturally fair skinned so I already wore sunscreen but he told me that this goes beyond that. To cover my skin, wear a hat, sunglasses, and try to avoid being out in direct sunlight as much as possible. I have also learned that my excessive sweating is not just me being out of shape, but that my body fails to properly regulate my body temperature. It is a part of my disautonomia. Getting that diagnosis led to a cardiology work up, which indicates my life long fainting issues are POTS and nuerocardiogenic syncope, not “low blood sugar” as I’d always been told. I am currently awaiting an echo stress test to determine the cause of my exercise intolerance which has kept me out of the gym for 2 years. Basically, when my heart rate gets above 100 I start to sweat profusely. At 130, I get dizzy and lightheaded. At 140-150, I begin to see spots and my vision blurs and I have to sit down before I faint. I used to go to the gym and do the BodyPump, Zumba and cardio kickboxing classes 3-4 times a week, but I haven’t been able to make it through a whole class in 2 years. (Thanks COVID!)
I’m March of 2023, I finally decided to go back to the dermatologist (albeit a different company than before) to have them help me with my skin issues like cystic acne and spots that just wouldn’t heal under my arms and around my breasts. After doing more research and talking with an RN whose sister has HS, the dermatologist and I agreed that I do in fact have HS, not just cystic acne. We treated with a round of antibiotics and steroids, which made a difference temporarily. The other option she recommended is for Humira, but that is a much stronger treatment option. We decided to go the easy route currently, since Humira is not covered by my insurance.
Upon getting yet another virus in July, I became even more pained, resulting in my near trip to the emergency room due to 8 out 10 pain that I could not pinpoint in my body. My PCP thankfully worked me in, and gave me a steroid and antibiotic shot in office, plus sent me in a medrol pack and augmentin to help. She said if my pain didn’t reduce by the next day, to go to the emergency room. She ran more labs, which showed my calcium was high, so she sent me in for a thyroid echocardiogram which should no abnormalities. My doctors have all suspected thyroid issues for years, but I’m always within normal range, but on the low end.
We managed to get my pain under control, but I still have wounds that won’t heal, pain I can’t explain and more fatigue. I’m currently going to physical therapy because at that July appointment, she diagnosed me with EDS. Physical therapy helped me get my pain under control and I no longer wake up in pain. I’ve learned a lot of new exercises that do not stress my heart but strengthen my core, and loosen my muscles without stretching my joints. I’ve learned how to adjust my posture and added a seat cushion to my car, since that is where I am most of the day. I’ve learned why I just want to lay down when I’m hurting or feeling exhausted. My blood pressure is struggling to regulate itself, and I feel faint and lightheaded upon standing or while standing for too long.
I’ve also learned why my depression gets so bad. Who knew inflammation can cause severe, mind altering depression? I’ve struggled for years with intrusive thoughts but I knew I wasn’t typically depressed because I never considered suicide. I simply could tell my brain wasn’t working right, but I had no clue why.
Ugh, this has been a rambling mess, but it’s the simplest way to explain everything that has changed about me this year. And it’s a lot. I know I’m nowhere near through learning, but I hope to find the right answers. I’m reading about diet and looking for a job that still pays well but allows me to avoid the Sun, so maybe something WFH? Who knows what I’ll look like or life will be like next year, but I’m thankful for the answers I have and the answers to come. If you relate to any of these, please feel free to comment. It’s nice to know you’re not alone in all this.
#EhlersDanlosSyndrome #SjogrensSyndrome #UndifferentiatedConnectiveTissueDisease #HidradenitisSuppurativa #POTS #Dysautonomia #NeurocardiogenicSyncope
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A little bit broken
It was time to buy a house. My boyfriend was ready to start looking, possibly find his next home, possibly find a flip, he didn’t know, but the time where he was currently renting was coming to an end.
Within a day of looking, that was it. He’d found one. Stumbled upon it driving around after work and contacted the realtor from his previous home sale to get a tour. (This is a story about experience, I promise. Just bear with me. We’ll get there.)
After the walk through, the excitement was palpable. The plans he laid out were grand, and he had them planned to a T. “This wall will go down, and I’ll put a door there. That will be the laundry, and here will be the guest room….”
Everything looked great on paper, all the ideas drawn in graphite and smudged with the massive rubber eraser on neatly lined grids. I’d even stopped by the hardware store to pick up paint samples just for fun and he had chosen a color scheme. Next thing we knew, he had the inspections lined up, and all.
The day of the inspections was ungodly hot, something obscenely over 100°F, and the AC was broken in the room we all decided to gather in to go over the findings. Why, you ask? Don’t ask me, I have no idea. Probably to make this story more amusing for the retelling down the line….
“The septic’s fine,” one man says. “Absolutely nothing wrong.”
Something settled on my shoulders is lifted with those words.
“There’s no spiders, no beetles, it’s pretty clean overall,” the pest inspector says.
Another weight is lift-
“Except the termites in that wall, that wall, and over there.”
Slam. The weight comes crashing back down.
I turn to my boyfriend, expecting to see the same weight curving his shoulders forward, maybe making his features fall just a little. But instead he just nods and says, “Okay.”
Okay? Okay?
Nothing worrying, no hesitation, just a little nod and an okay?
It didn’t stop there. The roof needed to be replaced. Some siding. Insulation in the attic. The list went on and on, with terms I didn’t fully understand but sounded massive in my mind.
But he didn’t even flinch. Just nodded and gave another, “Okay.”
Okay. Okay. Was that code?!
Was there something I was completely missing or-
The next day the realtor called him with her recommendation on how to go in with an offer. He agreed and sent it in. I was terrified that the sellers would be offended and simply say no and the house, the ideas, all that planning would just be…. gone.
The following day early morning they accepted the offer, no counter.
As I sat there washing my hair later that afternoon it came to me that all those things had to go wrong, in order for the end result to be right….
And how that so often applies to life. (I told you it was about experience.)
How things have to fall a little bit apart in order to come together.
Not one thing in life goes truly to plan. There’s always something, some hiccup that alters the list just a bit.
But I guarantee if you go back and look, sometimes that slight alteration made it fall into place all the more snuggly.
This is something I understand on a very intimate basis.
I suffer from multiple chronic health conditions, many of them “invisible”, but every bit as debilitating.
Every day I have a plan, a road map, if you will, for how I want things to work out, and sometimes before I’m even out of bed, we have a hiccup. Sometimes I make it till after breakfast. Sometimes till evening. But the day would be suspicious if it actually worked correctly.
So often it can get overwhelming and I feel somewhat trapped in my own body, like I’m still that 17 year old dancer who could get up at 8 AM and go until 2 AM, every day with no problem…. But I’m not. I have a body that would riot if I even thought of doing that again, and would make sure I didn’t try again.
And I’ll admit, sometimes I get a little huffy about it.
But then I remember.
Sometimes things have to fall a little bit apart in order to come together.
Including me.
How boring I would be if everything just worked out perfectly.
Let there be hiccups.
Let there be errors.
I’m here for the typos.
The autocorrect, and the messages with *’s after that almost always lead to laughter.
The GPS that doesn’t take you to the right place, or the AI that can’t process that right now.
Wherever the road takes me, and however it decides to tell my story, I’m just going to sit back and enjoy the ride….
And remember…. How things have to fall a little bit apart in order to come together. (See, aren’t you glad you kept reading?)
#MentalHealth #AutonomicDysfunction #ChronicFatigue #ChronicFatigueSyndrome #Dysautonomia #Fibromyalgia #ChronicPain #PolycysticOvarySyndrome #MedianArcuateLigamentSyndrome #nutcrackersyndrome #EhlersDanlosSyndrome #EDS #IrritableBowelSyndromeIBS #Gastroparesis #InappropriateSinusTachycardia #NeurocardiogenicSyncope #POTS
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I’m new here!
Hi, my name is kittenfeelsgross. I'm here because im looking for ways to feel better until i have a treatment plan, and a good job for me.
#MightyTogether #Anxiety #Depression #AutismSpectrumDisorder #PTSD #Migraine #EatingDisorder #NeurocardiogenicSyncope
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How do I overcome negative self talk?
I know I am not a lazy person. I know I only have so much "bandwidth" to use. I am struggling with a demon (if you will) of the past.
I have neurocardiogenic syncope. It's the direct opposite of POTS. My heart rate drops at the snap of a finger. I used to be able to control it with fluids, electrolytes, and compression socks. That's not working anymore. I was some medication (I don't remember the name of it) to keep my heart rate elevated but it rose too much so I had to stop taking it.
Now my struggle. I have to pick and choose the things I can do. We just finished a three day Fine Arts competition with my school. Today I am sitting on my couch, looking around my living room, trying to decide if I have the energy to clean. I know that answer. I know that if I get up and start working I will pass clean out with in 30 minutes and not really wake up for two or three days. I know this because I have done this. However, in the back of my head I have our pastor from 15 to 18 years ago telling my husband, "She's not sick, she is LAZY. Give her vitamins and MAKE her exercise and she will be fine." So that is what my husband attempted to do.😫😩😫😩😫😫
This is not the mentality of my husband now. When my heart diagnosis (bicuspid aortic valve) came about eight years ago he changed his tune. If he walked in right now and saw me attempting to clean he would FREAK OUT! He would be putting me to be bed or pushing me to sit on the couch.
This is just me fighting my mental insecurities from 15 years ago. How to I win this battle?!?!? How do I remind myself I don't have the energy I had as a 19 year old. I don't have the energy I had as a 29 year old. I still had this disease/syndrome/disorder then. (I don't know what to call it.) Back then my bouts of downtime were less. I know I am not lazy...I know I simply lack the energy to do what I want to do...which right now is to get my house clean. I wish I had the money for a maid....just saying...😥
I have seriously got to get off this feeling sorry for myself kick and find something I can do. However, for now, I will sit on my couch and rest. #notlazy #NeurocardiogenicSyncope #rest #Itiswhatitis #thankfulformyfamily #thankfulformyhusband #thankfulformydaughters
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I’m new here!
Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔
#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations
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I’m new here!
Hi, my name is maddieh04. I'm here because I am trying to make new friends and know I’m not alone!
#MightyTogether #Anxiety #Depression #AutismSpectrumDisorder #PTSD #ehlers-DanlosSyndrome #NeurocardiogenicSyncope #HeartDisease #congenitalheartdefect/Disease #ChronicDailyHeadache #MentalHealth
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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
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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
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3 comments
