Dysautonomia Awareness

What causes dysautonomia?

There are two main types of dysautonomia, primary and secondary:  

• Primary: It happens on its own without another cause.
• Secondary: It happens because of another condition.
   

Primary dysautonomias happens on their own, without a specific cause. They aren’t as common as secondary dysautonomia (secondary means something else is causing it).  

A specific example of a primary type is an inherited form called familial dysautonomia. Any of the following can increase your odds of having it:  

• Being of Jewish (especially Ashkenazi Jewish) heritage.
• Being of Eastern European heritage.
• Having a family member with dysautonomia (especially a first-degree relative like a parent or sibling).
   

Another primary form is “idiopathic” dysautonomia, which means it happens for a reason that healthcare providers can’t explain or detect.  

Secondary dysautonomias:

There are conditions that can cause or contribute to dysautonomia. Some examples include (but aren’t limited to):  

• Amyloidosis.
• Amyotrophic lateral sclerosis (ALS), often known as “Lou Gehrig’s disease.
• Autoimmune autonomic ganglionopathy (AAG).
• Autonomic dysreflexia.
• Botulism.
• Brain tumors (including cancer).
• Chiari malformation.
• Complex regional pain syndrome (CRPS).
• COVID-19 infection (especially ”long COVID,” when you have symptoms for much longer than expected).
• Ehlers-Danlos syndrome (and other connective tissue disorders).
• Guillain-Barrė syndrome.
• Lewy body dementia.
• Lupus.
• Lyme disease.
• Medications or medical procedures.
• Multiple sclerosis and neuromyelitis optica. 
• Multiple system atrophy (MSA).
• Neuroleptic malignant syndrome.
• Orthostatic hypotension.
• Parkinson’s disease.
• Porphyria (especially acute intermittent porphyria).
• Postural orthostatic tachycardia syndrome (POTS).
• Primary focal hyperhidrosis.
• Pure autonomic failure.
• Rheumatoid arthritis.
• Sarcoidosis.
• Serotonin syndrome.
• Sjőgren’s syndrome.
• Spinal cord injury.
• Toxins, poisons or heavy metals (like mercury, arsenic or organophosphates found in pesticides).
• Traumatic brain injury.
• Stiff person syndrome.
• Tetanus.
• Type 2 diabetes.
• Vasovagal syncope (less commonly known as “neurocardiogenic syncope”).
• Vitamin B12 deficiency.
• Wernicke-Korsakoff syndrome (or vitamin B1 deficiency).

What are the complications of dysautonomia?
 

Because dysautonomia affects vital body processes, there are many possible complications. Most of the complications revolve around symptoms of dysautonomia, especially when they’re severe or disrupt your usual routine and activities.  

Serious symptoms and complications generally include:  

• Heart rate issues (too fast, too slow or irregular).
• Fainting (which can lead to injuries from falls).
• Trouble breathing.
• Disrupted digestion, which may lead to constipation, diarrhea or other problems.
• Disrupted kidney function, leading to urinary tract infections or incontinence.

Your healthcare provider is the best person to tell you more about the possible complications you might experience and how to avoid them or limit their effects.  

How is dysautonomia diagnosed?
 

A healthcare provider can diagnose dysautonomia using a combination of methods and tests. Diagnosing dysautonomia is often partly a process of elimination. It also involves determining how and when symptoms happen and finding the pattern that links them.  

But even experienced providers may find dysautonomia challenging to diagnose. That’s because dysautonomia can cause symptoms throughout your body that might not seem connected. Providers may also link symptoms to whatever condition is causing dysautonomia but not realize dysautonomia is also happening.  

Some of the tests that may help with diagnosing dysautonomia (or rule out other conditions) include:  

• Physical and neurological exam.
• Tilt table test.
• Heart tests (especially electrocardiogram).
• Sweat tests (like the quantitative sudomotor axon reflex test).
• Pupil measurement testing (pupillometry).
• Ultrasound and other tests for symptoms related to urinary incontinence.
• Blood tests (especially testing for antibodies  that indicate an autoimmune disorder or testing  levels of certain neurotransmitters like catecholamines.

Many other tests are possible, depending on your symptoms. Your healthcare provider can tell you more about tests that may help.  

How is dysautonomia treated, and is there a cure?

There’s no cure for dysautonomia, but many symptoms are manageable. The treatment approach for dysautonomia depends strongly on many factors, especially what’s causing it.  

Some treatment approaches that might help include: 

• Diet changes: Increasing salt intake can increase your blood pressure, keeping it from plunging as much when you stand.
• Hydration: Keeping hydrated helps maintain blood pressure.  
• Medications to increase blood pressure: These are helpful when you have orthostatic hypotension and its related effects.
• Immune-suppressing medications or other immune system treatments: These can treat dysautonomia with autoimmune conditions, which happen when your immune system attacks part of your body.

When dysautonomia occurs because of a medication or medical treatment, stopping that medication or reversing that treatment is usually a priority.  

Because there are so many possible treatments for dysautonomia, your healthcare provider is the best source of information about treatment options. They can provide details that are most relevant to your situation and needs. They can also tell you about possible side effects and complications to watch for and what you can do to limit or avoid those.  

Can dysautonomia be prevented?

Dysautonomia happens unpredictably and for reasons experts don’t yet understand. It isn’t possible to prevent it or lower your risk of having it.  

What can I expect if I have dysautonomia?

Dysautonomia can look very different from person to person, even among family members. Your symptoms may be totally different from someone else’s. Your symptoms and how they impact your life can also vary widely.  

Many people with dysautonomia may experience difficulties with getting a diagnosis. You’re not alone if you experience frustration, anxiety or other difficult emotions surrounding your symptoms. These feelings are common for those with dysautonomia.  

How long does dysautonomia last?

Some forms of dysautonomia may be temporary, but it’s usually a lifelong condition.  

What’s the outlook for dysautonomia?

Dysautonomia is an unpredictable condition. Some people may experience frequent symptoms. Others may go months or even years without any. It’s difficult to predict what your life will look like living with dysautonomia, but your healthcare provider can help you understand what’s possible or likely and what you can do to limit the impact on your life.  

Depending on the cause, dysautonomia may be a minor concern. But some forms or causes - especially chronic or incurable conditions - may have larger impacts. In severe cases, the symptoms may affect your ability to work or participate in activities you enjoy. This condition may also cause deadly complications.  

How do I take care of myself if I have dysautonomia?

Dysautonomia is a complex condition. Many people with it struggle to find a provider who can diagnose and treat it. Many may experience frustration or anxiety surrounding medical care because they don’t know what’s causing their symptoms, and healthcare providers can’t find an explanation for why the symptoms happen.  

If you’re having symptoms of dysautonomia and experience these feelings, you’re far from alone. You can also take proactive steps to help yourself get a diagnosis and treatment. Some things you can do include:  

• Find a provider you feel comfortable with: Your relationship with your provider is crucial to diagnosing, treating and managing dysautonomia. If you don’t feel comfortable with or listened to by a provider, or if they don’t have the necessary experience to diagnose and treat your condition, seek a second opinion or another provider.
• Keep a daily journal/diary of symptoms, activities and how you felt: Be detailed in what you record. The information you gather may help a provider see the bigger picture of what you’re experiencing or adjust your treatment.
• Stay organized: Having a system and tools that help you stay on top of your symptoms, condition and treatment can make a big difference. They can show your providers more about what you’re facing and help you feel less anxious about communicating what’s happening to you.
• Be prepared: Keep printed research articles about dysautonomia handy (like in a purse, backpack or your car) so you can give them to a provider if necessary. You should also take water, a snack and any needed medications with you to any appointment or medical visit. They can help you avoid or limit symptoms that appear at an inconvenient time.
• Advocate for yourself (or ask someone to help you to do so): If you have a trusted loved one or family member who can go with you to events, ask them to do so. Talk with them beforehand so they understand what you’re concerned about and what they can do to help.

What can/can’t I eat or drink with dysautonomia?

Your healthcare provider will likely recommend certain changes to what you eat and drink if you have dysautonomia. The recommendations often include (but aren’t limited to):  

• Avoid alcohol.
• Stay hydrated.
• Add salt as recommended.
• Make sleep and rest a priority.
• Manage your stress levels.
• Reach and maintain a weight that’s healthy for you.
• Take breaks as necessary.
• Avoid heat (use warm water instead of hot for bathing).
• Move around to avoid sitting or standing for too long.
• Monitor and manage your caffeine intake (as your healthcare provider recommends).
• Take medications as prescribed and talk to your provider before adding new over-the-counter supplements.

When should I see my healthcare provider, or when should I seek care?

Your healthcare provider will likely recommend a regular schedule for follow-up visits. Those visits are important even if nothing seems to have changed. They can help your provider track your symptoms (even if they haven't changed). Your provider can also check vital signs you can’t feel that are important indicators for dysautonomia, like your blood pressure.  

You should also call or see your provider if:  
 

• You notice a change (positive or negative) in your symptoms.
• You notice a change in the effectiveness of your medications.
• If something in your life or personal circumstances changes and influences your symptoms or how you manage them.

When should I go to the emergency room?

Dysautonomia can cause many serious symptoms, especially ones related to your blood pressure. Lightheadedness and dizziness often reverse themselves if you sit or lie down (this makes it easier for blood flow to reach your brain). Most people will also regain consciousness after fainting for the same reason.  

But some symptoms are difficult to tell apart from a medical emergency. You should always call 911 or your local emergency services number when in doubt. Symptoms that need emergency attention can include (but aren’t limited to):  

• Chest pain.
• Trouble breathing.
• Heartbeat that’s unusually slow, racing, pounding or that you’re unpleasantly aware of without trying to feel it (heart palpitations).

There are other symptoms you may need to watch for. Your healthcare provider can advise you which symptoms mean you need medical attention.  

What are some things that can trigger dysautonomia?

Dysautonomia can have triggers that make symptoms happen suddenly or worsen. Knowing and tracking your triggers (especially with a journal/diary) can help you learn and avoid them. Common triggers can include (but aren’t limited to):  

• Drinking alcohol.
• Dehydration.
• Stress.
• Wearing tight clothing.
• Hot environments.
• Nonmedical drug use (especially drugs that slow nervous system activity, like benzodiazepines or opioids).

You might have other triggers not listed here. If you think you might have a trigger but aren’t sure, tell your healthcare provider about your concern. They may be able to suggest a test or method to check.