My experiences with Dysautonomia


Several triggers can start my orthostatic issues. At the moment, I feel the worst during menstruation and periods of warm weather. However, it is always hard for me to stand upright for a long time because it quickly leads to dizziness, nausea and brain fog. Additionally, drinking alcohol can instigate dizziness, and I lost consciousness after having a glass of wine in the past. My body simply stopped tolerating alcohol at some point.

Emotional stress and physical activity is also very hard on my body, and might cause abdominal cramping, diarrhea, nausea and severe exhaustion. As a consequence, I have to plan and organize my day precisely, because even simple tasks can deplete my energy reserves and cause another acute flare-up.

Unfortunately, I cannot avoid all triggers. Sometimes I have to ignore my body’s limits, even though this means living with the consequences afterwards.

The first signs of dysautonomia I noticed during childhood and my teens. I developed tachycardia and orthostatic issues as well. Also when I was a teenager I recognized my heart would race even more during menstruation. I guess those signs were always there, I just ignored them. When I was young, I had to sleep a lot, and my heart rate was above 100, even while resting.

On bad days (for example on hot summer days), the only thing that helps is to rest. And even without any movement, my heart races, and it feels like I would run a marathon. During these flares, my body is unable to recover from the trigger factors, which in turn leads to exhaustion on the next day. Luckily, I have only fainted twice, because usually I can tell when it is time to sit down.

Sometimes, I am not able to sweat, which means I am overheating; other times, I am sweating more than usual and freeze afterwards. My feet up to my knees are cold all the time since my body can not regulate my body temperature.

Shortness of breath is another symptom. Even if I am only walking slowly, I sometimes suffer shortness of breath, which leads, again, to exhaustion on the next day. Having a flu or other infection do highly contribute to dysautonomia symptoms and my body cannot handle it well.

If I have to stand in line, for example in a grocery store, I try to roll my feet from back to the tips, or I am just walking in circles, which helps for a short amount of time. I avoid standing as far as I can and try to find a place to sit down. Leaning against a wall can help too. Additionally, I always try to have something to hold on to.

Staying hydrated is another important factor for me. I do not leave my house without water in my bag. Moreover, since my body quickly becomes hypoglycemic, I try to have something sweat in my bag too.

Dysautonomia affects my whole body. For example, on a bad day, I additionally suffer from bladder issues and sleep disturbances created by nightly tachycardia, which is associated with sweating and awakening.

I was finally diagnosed with dysautonomia in 2015, using a tilt table test and other autonomous nerve system tests in a specialized autonomous testing lab. Besides dysautonomia, I was also told to have small fiber neuropathy.

To ease some of my symptoms,  I am using compression stockings, especially when I have to stand or walk for a long time. Those come with a second advantage as well: Since they are so tight, they stabilize my knees and hips a little bit. I find them very comfortable, and feel better when wearing them. Additionally, I try to eat more salt, and avoid the typical triggers as far as possible.

Having physical therapy on a regular basis is very important for my overall condition. I try to train all muscles in my lower back and legs, so they can pump the blood back from my legs into my body more easily. Walking also helps to keep the blood circulating, but if I do so, I have to monitor my heart rate carefully.

A good sleep hygiene, meaning regular sleeping periods, supportive pillows and a cool, dark room are very important, too.

I note bad days in my “diary” and conduct Schellong tests as well. This way I can see correlations between my condition and possible trigger that might have led to it.

The connection between dysautonomia and mast cell activation make treatment even more complex, because they can affect each other. Since I suffer from both, I have to find therapeutic approaches to stabilize both in the same way.

In my case there could be more than one cause for the dysautonomia. It could be the EDS itself, however, the cervical spine instability is definitely also a factor that worsens symptoms (especially the heart rate), and then there is the small fiber neuropathy and the mast cell activation, all of which contribute or cause dysautonomia flare-ups.

In case of GI issues, it is impossible to say whether they are caused by dysautonomia or mast cell activation.

Overall, it can be said that it is very important to try to eliminate as many factors as possible with the goal to improve my overall well-being.

More information about dysautonomia can be found here.