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Navigating My New Life With

I’m new! A bit of a backstory: I started developing symptoms of POTS back in October and it has just exponentially escalated since then. 😭

I have a cardiologist who I believe isn’t taking me seriously and has yet to actually diagnose me. We are finding a specialist to hopefully get me an official diagnosis and find me a medicine that doesn’t give me all of the rare side effects. 😤

I have a gluten intolerance now and it freaking sucks cause I personally love gluten, like who knew it was in literally everything. 🥲

I have had Raynauds for a long time now and we just didn’t realize it and it’s getting worse. ❄️

I’m also a 10 year dancer and now I can barely dance which is hard because I’m a dance assistant teacher. I have lost basically the only hobby that kept me active, healthy, flexible, & mentally stable. I have lost 10+ pounds of muscle since January. I’m working on finding a new outlet for me but it has proven quite difficult. 😥

It took forever to get my school teachers to believe me but I think they finally understand how debilitating this really is. Coding is my hardest class at the moment because I can hardly problem solve or even absorb knowledge. 🙃

I have above a really high GPA and I’m not planning on losing that so I have had to spend so much time studying and getting tutored just to keep up with everyone else. 🥹

Yes during this entire thing I was and am battling depression which longs to rot away in a comfy bed with ice cream, movies, and a pile of books. 💤#POTS #Depression #Syncope #PosturalOrthostaticTachycardiaSyndrome #MightyTogether #MentalHealth

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What is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a sustained increase in heart rate of at least 30 BPM (40 BPM for 12 to 19-year-olds) within 10 minutes of standing.⁠

⁠Symptoms may include:⁠




Shortness of breath⁠


Chest pain⁠

Low blood pressure⁠


GI issues⁠


Brain fog⁠


Blurred vision⁠

Dry eyes and mouth⁠

Muscle pain and weakness⁠

Cold hands and feet⁠

Skin flushing⁠

Frequent urination⁠

+ more⁠

#POTS #AutonomicDysfunction #Dysautonomia

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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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Does anyone else shake after an episode? #PosturalOrthostaticTachycardiaSyndrome

Recently I’ve been really overexerting myself. I know I shouldn’t be pushing myself to the absolute limit but if has been necessary.

After I sit and recover I have started trembling. Like full body shaking. I haven’t noticed this before. Does anyone know why this is happening? Does it happens to you?

#Syncope #Dysautonomia

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Prevalence of POTS Symptoms

What POTS symptoms do you experience? Share your experience in the comments. ⁠

Prevalence of POTS symptoms⁠:

Lightheadedness (99%)⁠

Tachycardia (97%)⁠

Presyncope (94%)⁠

Headache (94%)⁠

Difficulty concentrating (94%)⁠

Nausea (90%)⁠

Shortness of breath (88%)⁠

Palpitations (87%)⁠

Memory problems (87%)⁠

Muscle pains (84%)⁠

Foot coldness (84%)⁠

Stomach pains (83%)⁠

Muscle weakness (83%)⁠

Hand coldness (82%)⁠

Chest pain (79%)⁠

Bloating (79%)⁠

Tremulousness (78%)⁠

Hand tingling (76%)⁠

Blurred vision (75%)⁠

Low blood pressure (71%)⁠

Constipation (71%)⁠

Diarrhea (69%)⁠

Skin flushing (69%)⁠

Frequent urination (68%)⁠

Foot tingling (67%)⁠

Dry mouth (66%)⁠

Hand numbness (65%)⁠

Dry eyes (60%)⁠

Foot numbness (58%)⁠

Syncope (36%)⁠


#Dysautonomia #POTS

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I'm new here!

Hi, my name is DesertGal. I'm here because I'm looking for answers for my syncope problems. I've had this for four years and its becoming more frequent lately. I am not someone who believes in taking medications chronically so I try to handle it by natural means. I haven't actually fainted for the past three years but found the best thing to bring me out of it when I did was Adrenal Tonic by Standard Process. I make sure to drink salt water (celtic sea salt) and I also use Stamina paks by Trace Minerals to balance electrolytes. Licorice (the herb) will keep BP from dropping. I walk daily and try to stay away from processed foods and too much sugar as carbs can bring on an episode. Looking forward to hear what other people might be doing. I have watched lots of videos about this and have learned much from them. I am now about to try craniosacral therapy to see if that will help. I do see a chiropractor regularly as well. #MightyTogether

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My name is Dan. I am here just checking things out. Found The Mighty while searching for info on vasovagal disorder. I have had to syncope incidents in the past year. Not pleasant at all, smashed my head a couple times. Also, I have kidney disease and severe hearing loss as a result of Alport Syndrome.



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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