Dysautonomia- why we should take it more seriously (opinion)

As i sit here smoking my Guice strain of cannabis I felt inspired to write my opinion on something that has been bothering me for decades. Please note that this is not medical advice. It is my opinion based on my experiences.

Why doesn't the medical community take dysautonomia seriously? First off, let's talk about what dysautonomia is. Here is a brief description from the dysautonomiasupport.org

"Dysautonomia refers to a group of neurological disorders in which the autonomic nervous system (ANS) has become dysregulated. This can involve the failure of either the sympathetic nervous system or parasympathetic nervous system or both."

Symptoms of Dysautonomia often include:
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Bradycardia (Abnormally Low Heart Rate) or Tachycardia (Abnormally High Heart Rate)

Widely fluctuating Blood Pressure, high or low.

Frequent, Large Swings in Heart Rate or Blood Pressure

Orthostatic Intolerance or Exercise Intolerance

Frequent Bouts of Dehydration

Chronic Fatigue

Heart Palpitations

Dizziness or Vertigo

Syncope (losing consciousness) or Near Syncope

Low Blood Volume

Frequent Nausea and Gastrointestinal Motility Issues

Difficulty Swallowing

Chest Pain

Shortness of Breath

Frequent Migraines or Headaches

Hypersensitivity to Light, Sound, Touch, or Smell

Difficulty Regulating Temperature " (end quote)

As you can see that is a lot of debilitating symptoms so why has it been ignored by so many doctors? I have had these symptoms since my early teens. It was mostly dismissed and I was told to eat more salt and carry salt packet with me at all times. But for the most part these symptoms were ignored by EVERY DOCTOR I SAW.

In fact it was even ignored when, in my 20's I passed out and fractured my ankle in the fall. I was basically told to just be more careful and when I feel pre-syncope coming on to just lie down.

Right because it is perfectly acceptable when in public or at work to just lie down in the middle of the floor. Great plan, doc.

To be clear I actually have two forms of dysautonomia POTS (Postural Orthostatic tachycardia Syndrome) and vasovagal syncope. I was diagnosed vasovagal before POTS but I can tell the difference between the two because of how I feel pre-syncope (also when i have a vasovagal episode I don't feel an erratic heartbeat until I basically am at the point of loss of consciousness. With POTS I feel my heart rate increase within seconds of standing.

You may at this point be wonder wtf is syncope? Syncope refers to loss of consciousness pre-syncope or near syncope refers to all the symptoms of syncope but without loss of consciousness.

Here are some symptoms of syncope/ pre syncope

Severe Nausea
Blacking out
Feeling lightheaded
Falling for no reason
Feeling dizzy
Feeling drowsy or groggy
Fainting, especially after eating or exercising
Feeling unsteady or weak when standing
Changes in vision, such as seeing spots or having tunnel vision
Headaches
cold sweats
numbness/ tingling in feet and hands ( I personally lose control of being able to walk when symptoms get bad as I can't feel my legs) Source: clevelandclinic.org with additions from me

Keep in mind syncope and pre-syncope are only 1 symptom of dysautonomia. Yet I was ignored by every doctor I saw until about a year ago when saw an ME/CFS specialist. Disgusting. I would also like to note I am not the only one with this experience. Like with all "invisible" illnesses they are often dismissed by doctors and society. "First do no harm" doesn't apply to us . Dismissing patients without cause does more harm than you can imagine.

For me during a vasovagal episode I get very distinct pre-syncope symptoms. No exaggeration it feels like I am dying (technically I kind of am because my heart does stop for brief periods of time when I pass out). These symptoms usually last for 20-30 minutes if I lie down at onset. I estimate I lose consciousness less than half the time in a vasovagal pre-syncope incident.
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POTS on the other hand is completely different., both symptomatically and they are kind of opposite of each other (one causes rapid heart beat the other a sudden drop in heart beat). Before I took beta blockers every time I stood up I would lose my vision and have severe dizziness/lightheadedness and it was getting to the point where I lost consciousness/ blacked out most of the time I stood up- or was standing up for more than a few minutes (like at a grocery store). This is a much faster reaction than the vasovagal episodes. I also can feel my heart beat going crazy immediately upon standing.

There are times when I am sitting up that I do have POTS symptoms but they are milder than when I stand. This has been verified by my Fitbit. My Fitbit thinks I exercise several times a day because just sitting at my computer puts me past the anaerobic threshold. (I have post exertional malaise / exercise intolerance so assure you I am not actually working out)This is with Beta blockers. Without Beta blockers I would be bed bound by now. I know this because I was basically bed bound before I started taking them.

I am a cannabis user and I really wish I could safely consume it while in pre-syncope (lying down safely) but since I can't feel my hands and passing out is a serious choking risk . However cannabis does help the the aftermath. After an episode I don't feel right for several days. My overall pain increases, my digestion is out of whack and I just feel sicker than usual. Also for me the vasovagal episodes tend to happen in clusters. If I have one, I usually have another shortly after.

My POTS is active all the time. Beta blockers do keep it under control for the most part. Sometimes even they are not enough.

I am writing this post in hopes it reaches one person it can help. Maybe you or a loved one is suffering from this or any other invisible illness and it could be comforting to know you are not alone.

If you are a medical practitioner, please believe your patients and take them seriously. It is more likely that they are really suffering than "faking". In my experience chronically ill people tend to fake feeling well, not fake being sick. Please stop treating patients as liars or just dismiss them unless you have evidence to back that up. This is very damaging and traumatic for people that are looking to you for help. There are millions of people suffering with legitimate illnesses who are being ignored.

I'll end it here. If you are suffering, diagnosed or not please know that I believe you. Your experiences are valid and you deserve proper care and treatment. ♥️🦄