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Autonomic Dysfunction Community
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Avatar universal

POTS/Syncope

I would appreciate any answers you can give me,
When I was younger (2nd grade) I passed out at school, I was standing outside at a flag ceremony and I felt uneasy and quickly blacked out and lost control of my bladder. My mom was a little worried, but didn't think that passing out was a big deal, because it happens to people. However, I switched to catholic school (3rd grade) soon after that and attended mass every Thursday and every Thursday I would pass out. I remember seeing a type of colorful 'white noise' from like a TV screen before fainting, I would very often miss that Friday because I would be so so tired from blacking out. I started seeing a cardiologist who diagnosed me with Neuro/Cardiogenic Syncope and was put on Fludrocortisone. After 5th grade my symptoms had lessened and I seem to have been doing just fine. I took myself off of the medication and discontinued seeing my doctor. I had very few episodes up until Senior year. This time it seemed like it came back with a vengeance. Black Friday shopping with my mom was horrible, I was at Menards and I remember standing in line and I could NOT stop staring I heard my mom vaguely calling my name, my heart started pounding super hard and super fast and I felt so so sick and just fell. I passed out again and cried pretty much all day because of my major head ache and constant feeling of nausea. I passed out 2 more times that week. Finally getting over that I thought I was over it, I began seeing my cardiologist again and was put back on my medicine, but it was different this time! My heart never has raced like that before! I was so scared, so I researched for myself, and I came across POTS and I fit every symptom. I asked him about it, and he told me that was not what this is. I have never had a tilt table test and he refuses to give me one. Its now Feb. and I passed out at work and at home this week! Both times the same thing, MAJOR headache, nausea, rapid heartbeat and blurry vision. Only this time, I shook violently upon waking up and dry heaved as I was shaking, and again staring uncontrollably. My 'syncope' never felt like this does and it's scaring me and preventing me from doing a lot. I can barely walk up stairs without losing my breath and have my heart throb, I have a life and I feel like I'm slowly becoming deconditioned.
3 Responses
Avatar universal
Have you ever had any autonomic testing done? Because there are a lot of diseases with similar symptoms to POTS.
1 Comments
Avatar universal
You should talk to your doctor and insist on having autonomic testing done. I know how frustrating it all is. I'm having a hard time too. I can't even take a shower standing up.
1 Comments
Me neither! And when I did bring it up, e swore up and down that this (POTS) is not what it was.
Avatar universal
Sorry, just saw some keywords. severe headaches (migranes most likely - I was told I had "sinus headaches" so bad that i had to go on opiates multiple times - even though i had no mucus), passing out, POTS symptoms, nausea, worsening with stress, severe anxiety, fatigue, and the term deconditioning (that usually refers to muscles shrinking and cellular decline, but that may not be what you mean).
Weird question - can you touch your thumbs to your wrists? Or put your palms all the way on the floor? or any hypermobility issues?
Just asking because I went 32 years with POTS symptoms being attributed to mental health or me "faking it" as well as being sick all the time and a myriad of weird symptoms.
I hope by now you have your answer and are feeling better, but a lot of people with POTS have it because of a connective tissue disorder. Mine is Elhers Danlos and unfortunately its the most neglected condition in the world. So anyone please, look it up if you suspect and ask to get the checklist done and then genetic testing to figure out what kind. Hypermobility Syndrome can also be linked with POTS, as can Marfans.
And I personally always see static - its a rare condition called snow eyes/visual snow. Can't believe you all see through a clear TV. whattt.
but the migraine/gut/dysautonomia cluster is very common in EDS. I'd also recommend learning about Mast Cell Disease and Chronic fatigue and hypoglycemia and get a blood workup for nutrient levels if that doesn't fit (and still if it does, though chronic fatigue is a diagnosis of exclusion i believe so all the symtoms of it are found in EDS). But anyone should be tested for POTS who suspects it. A table test isn't even whats needed necessarily - there are other options. Propranol and other beta blockers can sometimes make Mast Cell worse, but they can help. Guanfacine and some other ADHD medications help if its hyperandrenergic (constant adrenaline rushes) as well as a medication for PTSD related nightmares - things you can all get from a psychiatrist. As well as clonodine but that can have a feedback affect.This sounds terrible, but if you cannot get a referral to a cardiologist (you should!) for an echo and testing for dysautonomia than you could at least try that method for some relief. Lots of salt, fluids, potassium, exercise as much as you can but rest when your body tells you, lower stress, and work on deep breathing. You know that sounds offensive if you have dysautonomia/POTS, but hey, it's something.
HOWEVER: know that the type of POTS/dysautonomia you have is very important to know for prescription purposes. If its hyperandrenergic, the meds I mentioned can make it better. But if it's the more common kind, they can worsen it. Its important to know if you pass out because your heart rate shoots up or is low, and if your blood pressure is high or low. I have hyperandrenergic with a fast heart but low bp, which is possible.
I would recommend looking up a dysautonomia clinic or getting a referral to a cardiologist. A doctor cannot know what you have without testing it. If you have hyperandrenergic or are just anxious because of medical trauma, or are from any marginalized community, they are so resistant to validating any physical concern. I'm so sorry for all who experience this. Elhers Danlos society website is useful for quality dysautonomia clinics because its such a complex sydrome (even if you don't have it, id recommend checking it out). You can also hire a medical advocate.
The antiinflammation diet/FODMAPS can also be helpful for heart health. I hope this issue is long resolved, but for all who see this, I hope it helps. I've been both a frusterated consumer, a psych student, taken epidemiology classes, have a best friend who is an epidemiologist, a disability advocate, and have worked with public health. I hope any of my pain can be flipped into a positive to help another who is suffering, so please reach out :)
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