My Dysautonomia Toolkit – Anxiety vs. Dysautonomia

If you have read this blog before (or follow me on Twitter), you know that I was finally diagnosed with hypermobility Ehlers Danlos Sydrome this year, after years of being told that it was all in my head. What I was told was generalized (and somatic) anxiety disorder has turned out to be dysautonomia.

Dysautonomia is, literally, the dysfunction of the autonomic nervous system. In layperson’s terms, dysautonomia means that things that should work automatically in your body – like your heart rate, breathing, temperature control, glucose regulation and blood pressure, for example – no longer do.

The autonomic nervous system regulates internal organs and bodily functions automatically. This includes heart rate, respiratory rate, digestion and body temperature among other things. It is the principal mechanism that controls our fight or flight response. The vagus nerve plays a key role (especially when it comes to transmitting information to and from the gallbladder, liver, pancreas and the heart as part of the autonomous nervous system).

When the autonomous nervous system does not function as it is meant to, you end up with erratic communication signals in your body. You may feel cold when it is hot outside, for instance. Your blood pressure may go down when it is supposed to go up (or stay the same) – for instance when you stand up from a lying/sitting position. You may have increased heart rate while sedentary or may feel like you are not getting enough air into your lungs.

Dysautonomia and Anxiety

If you have any of these symptoms, it is quite likely that you have been told you have an anxiety disorder, that you must try to breathe deeply, practice mindfulness & get rid of the stress in your body. All these things are helpful, of course, but they will not necessarily fix your symptoms.

If you have been repeatedly told that all your symptoms are in your head and that anxiety is your problem, but you feel strongly that there is a physical cause for your complaints (especially if you are not responsive to the tools to cope with anxiety),  please speak with your doctor about dysautonomia.  

There is no clear scientific explanation for the fundamental cause of dysautonomia (except for diabetic neuropathy, where uncontrolled diabetes causes damage to the autonomous nervous system) but it is becoming increasingly clear that dysautonomia is a common factor in several illnesses – especially EDS and post viral illnesses (such as Long Covid, Myalgic Encephalytis).

Treatment

Treatment for dysautonomia is symptomatic. You may be given betablockers if your heart rate can go high suddenly or be asked to increase the salt in your diet/use compression stockings if your blood pressure is low. Your doctor may ask you to monitor your blood glucose regularly & receive help to maintain good levels, either through diet or medication. Inhalers are usually prescribed to help with your breathing at times, if necessary or asked to dress in layers at all times to help regulate your body temperature externally. Addressing the symptoms will be the key to addressing any anxiety you may have & not the other way round.

Personally, I have a dysautonomia kit. Any time I feel anxious or like a panic attack is on its way, I use it to determine which one of the elements that should be controlled by the autonomous nervous system is out of whack and address it. Usually that does the trick.

Dysautonomia Test Kit

1. Glucose Monitor
2. Blood Pressure Machine
3. Pulse Oximeter
4. Thermometer

Dysautonomia Help Kit

1. Glucose drink/Dextrose/Water
2. Beta Blocker/Electrolytes
3. Inhaler
4. Shrugs/Scarves/Socks
5. Antihistamines

1. Glucose- Blood Sugar levels

My first go to is my glucose monitor. Most of my symptoms are from hyper or hypo glycemic episodes. If it is a hypo or nearing one, I immediately have my nutridrink (which doubles up as a calorie drink on bad eating days) or eat dextrose tablets if my glucose levels are seriously low. If it is a hyper episode, I drink water, do some gentle stretches or go for a short walk.

• Blood Pressure and Heart Rate

If my glucose levels are fine, I check my blood pressure. If it is high, I usually just lie down quietly or take a betablocker if my blood pressure is too high. When BP is low, I drink water with electrolytes or eat something salty & increase my water intake. Of course, I also make sure that I lie down till the episode passes or improves.

• Oxygen

The next think I use is my pulse oximeter. This shows my SpO2 (Oxygen saturation) and heart rate. If my SpO2 is low, I use my inhaler (Ventolin) or take deep breaths if I’m hyperventilating.

• Body Temperature

Finally, I check my body temperature if everything else is fine. Usually, it will be low and I’ll put on some warm clothing/heat pack and drink something warm.

• Allergies and Indigestion

Sometimes, I may need an antihistamine to calm my body down if there is anything allergic going on & that can also present as anxiety. I use Avamys nose spray, desloratadine or Tavagyl if it is an extreme situation. Sometimes it could also be indigestion, in which case a Gaviscon always helps!

One of these things usually resolves my anxiety or panic. If everything is fine, then I reassure myself with that fact and start my deep breathing techniques or try a diversion (painting or singing).

I check these things before I go outside, to make sure that I’m prepared. I always carry with me my nutridrink, water, dextrose tablets, inhaler, rescue antihistamine and antacid. It is exhausting, yes, but it is definitely better than having a panic attack because I’ve crossed the threshold where I can reason with my body & mind or worse, being told that it is all in my head.