Life with EDS and Dystonia: Understanding Dystonic Storms with Aphasic Events

Written by: Amanda Henderson 1-28-26

Note: I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice.

Living with dystonia presents daily challenges that many people may not fully understand. This neurological movement disorder causes involuntary muscle contractions, leading to twisting and repetitive movements or abnormal postures. It can be caused by genetic or neurological factors, brain injuries, or it can be a secondary issue to another illness. For some, dystonia can escalate into severe episodes known as dystonic storms, which are intense and sudden worsening of symptoms. Additionally, aphasic events—temporary difficulties with language—can complicate life further for those affected. This post explores what living with dystonia means, how dystonic storms and aphasic events impact individuals, and some insights to help manage these experiences.

What Is Dystonia and How Does It Affect Daily Life?

Dystonia is a movement disorder caused by abnormal brain signals that affect muscle control. It can affect any part of the body, including the neck, face, vocal cords, arms, legs, or the whole body. Symptoms vary widely, from mild muscle twitches, like myoclonus, to severe, sustained muscle contractions that interfere with normal activities. Dystonia in EDS is often linked to impaired proprioception (the brain's awareness of body position) and sensory issues, resulting in chronic muscle tension and spasms. When dystonia is secondary to EDS, it often comes with a different set of diagnostics and treatments, as well. Finding the best medical care can be a challenge and take longer than usual. Rarer illnesses make patient stories being shared online even more important. Reaching out can be of vital importance to others sharing the same experiences and may have no medical support near them.

People living with dystonia often face:

• Muscle stiffness and spasms that can cause pain and discomfort

• Difficulty with fine motor skills, such as writing or buttoning clothes

• Challenges with posture and balance, increasing the risk of falls

• Loss of motor control in effected limbs, impaired muscle function leads to gait disorders, weakness, sometimes paralysis

  
  

Me with my trusty ol' rollator

In my case, dystonia is part of my everyday struggle with EDS. Faulty proprioception is compounded by potential issues like cervical instability affecting nerve signals, autonomic dysfunction, and vascular compressions, all disrupting motor control and causing muscle pain and spasms. If you've seen me walking around with my rollator, rolling around in my wheelchair, or bouncing off of counters around my house, know that my gait disturbances are an effect of dystonia. My tightened leg muscles wear out with use, so I can't walk down a long hallway without assistance. I have constant loss of motor control in my hips, as well. Though these have effected my life for several years, more recently I have begun having dytonic storms. I wrote a blog exploring them in more depth. As the storms roll on and have become more severe, they have added aphasic events, which bring yet another element to everything going on with me.

Understanding Aphasic Events

Aphasia refers to difficulties with language, including speaking, understanding, reading, or writing. While aphasia is more commonly linked to stroke or brain injury, some people with dystonia may experience aphasic events, especially if dystonia affects brain regions involved in language.

When I have particularly intense dystonic storms, I also have aphasic events along with them. The verbal effects can last much longer than the effects of the storm, itself. My brain needs to heal between each episode, but if not enough time passes between each one, the healing comes much more slowly.

Aphasic events with short term memory loss can manifest as:

• Trouble finding the right words during conversation

• Difficulty understanding spoken or written language

• Speaking in incomplete or jumbled sentences

• Accessing memories is difficult as the filing system in the brain isn't working properly

  
  

These events may be temporary and vary in severity. Finding help and healing for aphasic events while also dealing with short term memory loss can be very difficult as I don't always know where to look or that I even need help. For caregivers, outside knowledge of the patient's past self and abilities can be crucial in accessing more effective treatment options. Don't be afraid to speak up or ask questions - it can mean the difference between being stuck in memory and learning defecits that they aren't even fully aware of or getting real help that can move them beyond brain trauma difficulties.

Post-Storm Aphasia

Looking for Answers: Diagnosis, Treatment, Cure or Miracle

Managing dystonia, dystonic storms, and aphasic events alongside EDS and all of its complications is difficult and sometimes terrifying, to say the least. Finding medical support and the right diagnostic tools can be a vast undertaking. I've been down this road before, but those experiences haven't made this new quest any easier to conquer. It's been almost five months since these storms began and I've experienced more than twenty of them, and counting, with profound effects. All of the treatment strategies I had in place in an effort to better my medical issues have been leading to dystonic storms and I've had to stop using them. My usual Physical Therapy exercises have been pared down and can still be too much physical activity for me to accomplish. The lymphatic pumps and manual lymph drainage techniques will cause a storm as well as the saline IVs I've been doing for a decade. I feel like I'm starting back at square one and not only do I have to find a new way to move forward with this body, I also have to throw out an entire plan that was working well for me even though it didn't cure me of all physical issues.

Living with chronic illness often means compensating in many ways in order to have any bit of normalcy. With the new issues added, I've tried other medications, varying physical therapy techniques, and even different kinds of doctors. I'm still in the process of going through tests and so far have found more questions than answers. In spite of this, I remain hopeful that answers will come.

Chronic illness can lead to processing difficulties that are hard to understand

In a perfect world, people who have severe difficulties and disabilities would have their needs met in any way that is required without having to point out what those needs are if they aren't capable. It would be so nice if we had code readers just like autos do- plug it in and find what's wrong, order the parts, fix it up! Unfortunately, it's not that simple- especially when the patient isn't necessarily capable of knowing what they need to ask for, themselves. By checking in on them, listening whole-heartedly, and filling in needs they may have on your own without any expectations is a blessing they won't know they have until they receive. Also, not taking absence or lack of communication personally can go a long way in caring for someone who has a chronic illness that keeps them from normal lifestyles. If you cannot step into their shoes and imagine the way their life works, take a minute to feel very lucky, but also, realize that you aren't the expert in their care and development. If you wish to understand or be of help to them, interject in a loving and caring way that will be of service to both them and thier caregivers.

There have been a few key people in my life who have stepped in to help manage some daily chores and keep track of what's going on with me. Without them stepping in, due to the nature and severity of my symptoms, I would not have been capable of asking for that support. Chronic illness can leave people alone and in a spiral of physical constraints and mental imbalance. When you add the effects of traumatic brain events, living within guidelines and parameters of survival is something that few can truly comprehend. We do what we can to manage our health and healing, but the brain becomes easily over taxed. It can be frustrating and life altering, and a little compassion and empathy can go a long way.

Some things that help support and care for someone with these limitations:

• Cognitive Fatigue: Capacities and allocations for brain tasks is very different for someone who experience traumatic brain events.

• Social Activity and Rules of Engagement: The need for social outreach becomes less of a priority when someone is struggling with basic tasks. Any social "rules" are lost in translation, as well, when safety and well-being become the only need requirements.

• Need Awareness: A more well-rounded and fulfilling lifestyle falls away without full realization as the cognitive energy demand keeps one from realizing and meeting needs that are beyond survival.

• Performing Daily Tasks: Usual routines don't require much thought until one approaches them under the duress of traumatic brain issues. Muscle memory goes right out the window and instead comes under the umbrella of learning new tasks. Imagine standing in the bathroom in front of the sink or the kitchen in front of the fridge and trying to recall the basic tasks that you regularly do there. It takes much more energy to have to run the process from brain to body than if you simply do these tasks without a thought.

Brain energy allocation pie chart- healthy vs. traumatic brain injury

Trying to be Brave in World of Pain and Insurmountable Odds

Sharing stories of personal struggle can lead to growth and help others. In doing so, I hope that my new world opens up in ways that can be understood and valued by other patients who may require the same answers and care and by medical professionals who are looking for knowledge and personal experience to help them be capable of giving care to those who haven't otherwise found it. Here's to better days ahead and brighter futures for those who navigate the health system in search of answers for sustained health and healing.