My experiences with Dysautonomia

My orthostatic issues occur through different triggers. At the moment I feel the worst during my menstruation and during summer.

It is always hard to stand on my feet for a long time because it quickly comes to dizziness, nausea and I cannot concentrate anymore. I completely avoid alcohol because my body does not tolerate it anymore.

Emotional stress and physical activity is very hard on a dysautonomia patient and can lead to heavy cramping of my stomach, diarrhea, nausea and exhaustion. This means you have to divide your energy through some simple tasks and not do too much.

Unfortunately I cannot avoid all triggers which means I have to go far over my borders and live with the consequences and thats very annoying.

First signs of dysautonomia I have had during childhood and teens. At least I have had tachycardia and orthostatic issues as well. Also the worsening during menstruation occurred while I was a teenager. When I was a child I had to sleep a lot and my heart rate was high even while resting.

On bad days (for example during hot summers) the only thing that helps is resting and not moving. And even then my heart races like crazy. During these flares my body is not able to recover which leads to bad exhaustion on the next day.

Luckily I have only fainted once because usually I can feel when it is at the time to sit down. Sometimes I am not able to sweat at all which means I am overheating, other times I am sweating extremely and freeze a lot. I have cold feet up to my knees all the time. My body can simply not regulate my body temperature.

Sometimes I am very short of breath even if I am only walking along the street 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.

If I have to stand in line I try to get on my foot tips and back or I am walking on one point which helps for a short amount of time. Usually I avoid standing and try to find a place to sit. Leaning on a wall can help too. I always try to have something to hold on with my hands.

It is also very important for me to stay hydrated. I practically have always water in my bag. Also my body is quickly hypoglycemic and that is why I try to have something sweat in my bag too.

Dysautonomia affects my whole body. For example on a bad day I have additionally bladder issues and sleep disturbances. Nightly tachycardia occurs and 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 diagnosed with small fiber neuropathy.

Therapeutic I am using compression stockings especially when I have to stand or walk for a long time. It also has a second advantage, it is very tight and therefore stabilizes my knees and hips a little bit. I find it very comfortable and feel better with it. Additional 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 me to not decondition. I try to train my extremity muscles so they can pump the blood from my legs to my body more easily. Taking a walk helps to keep the blood circulating but I have to be careful with my heart rate. It could rise too much.

A good sleep hygiene which means regular sleeping and waking times, good pillows, a cool and dark room are very important.

I also have a dysautonomia diary where I note bad days and write down my Schellong tests. Then I can see a correlation between possible triggers.

The connection between dysautonomia and mast cell activation is very tricky because they can affect each other. So a good therapeutic approach for both is very important.

In my case there could be more than one reason for my personal dysautonomia. It could be the EDS itself, 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.

The gastrointestinal issues are impossible to divide whether they are caused by dysautonomia or mast cell activation.

Overall 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.


Update 2016

After a viral infection in December 2015 my condition has massively deteriorated. I am suffering from an exhaustion that I never experienced before. When I got up in the morning and took my shower I already feel ready to sleep again. I barely have enough energy for the smallest tasks like shopping or cleaning the apartment and I am physically very weak.

My compression tights are my closest friends at the moment because without them I can hardly stand for 5 minutes.

I really hope this is only an after-effect of the infection and disappears soon.

After a very long and disabling episode of exhaustion I was able to improve my situation by accident. The decisive factor was actually the hot shower in the morning. It does cost me a lot to overcome but now I am taking cold showers every morning which gives me a lot more energy.

Furtermore I take a Nuun tablet daily and the electrolytes give me a little boost of energy.

Additionally I have noticed I can control my pain with Ibuprofen and that by controlling the pain the exhaustion gets better. Ibuprofen acts also partially as an antihistmine which possibly keeps my mast cells under control. At night I take one Vitamin B12 to regenerate my nerves.

Apparently this worsening of symptoms was caused by a combination of dysautonomia, MCAS and pain and finally I got somewhat better.