Ehlers-Danlos Syndromes (EDS) and Headache Disorders
Last updated: November 2023
Constant sprained ankles. Fingers that bend all the way back. Neck pain before some of my migraine attacks. These are all things I thought were normal until I received a diagnosis of hypermobile Ehlers-Danlos syndrome (EDS).
This article looks at EDS and the correlating headache disorders. As someone who has recently been diagnosed with EDS, I am learning to tell the difference between my related headaches and migraine.
What is Ehlers-Danlos syndromes (EDS)?
EDS is a group of 13 genetic connective tissue disorders. Each syndrome has its own distinct features. But joint hypermobility, skin hyperextensibility, and tissue fragility are most common among all types of EDS.1,2
What is hypermobile EDS (hEDS)?
One of the common types of EDS is hypermobile EDS (hEDS). People with hEDS may also deal with:1
- Chronic fatigue
- Gastrointestinal issues
- Mast cell activation diseases
What has my experience been with EDS?
I received my EDS diagnosis in 2022, but it was suspected much earlier. I have hypermobile EDS (hEDS). This means I have joint hypermobility, joint instability, abnormal scarring, and chronic pain. I have also been diagnosed with chronic fatigue syndrome, irritable bowel syndrome, dysautonomia, chronic migraine, and several other conditions. Many of these additional diagnoses are common among people with hEDS.
How are headache disorders related?
A number of headache disorders are experienced by people with EDS, including migraine. Other various physical conditions like muscle tension and high blood pressure are also experienced.3
How is migraine related?
Both migraine and EDS occur more frequently in women than in men. This correlation could mean many things. Among these things, it could mean that EDS is a risk factor for migraine.3
Research shows that people with hEDS are more likely to have migraine disease with more frequent and disabling attacks. I cannot help but wonder if this is why my migraine attacks have been almost impossible to manage for so long.4,5
What is my experience with migraine?
I have lived with episodic migraine all of my life. Unfortunately, in 2009, my episodic migraine became chronic daily migraine. My family initially thought the increase in migraine attacks was simply due to stress because I was working on finishing 2 bachelor’s degrees. Unfortunately, the new chronic migraine never went away.
What are my triggers?
I have a variety of triggers that will cause a migraine without a doubt. For example, I cannot change my routine without getting a migraine. This means if I stay up extremely late or if I sleep in late, I will get a migraine.
Also, alcohol is a bad trigger for my migraine. I cannot make it through one glass of red wine without a migraine starting. Other alcoholic drinks always make me miserable the next day. It can be as simple as one glass, and I will feel like I have spent the entire night drinking alcohol.
Is my neck pain related to migraine?
There are days when my migraine-like pain starts with discomfort in my neck. A dull ache in my neck will increase until the ache in my neck is almost unbearable. This ache then causes pain in my head like a migraine. Despite the similar pain in the head, these neck discomfort-related migraine attacks are most likely cervicogenic headaches.
How are my cervicogenic headaches different?
The difference between these cervicogenic headaches and my normal migraine attacks is that they do not respond to my abortive medicines as normal migraine attacks do. I end up having to take a muscle relaxer and a pain pill to help my neck ease up. In normal migraine attacks, taking a pain pill could make the situation worse, instead of improving it as it does with cervicogenic headaches. Cervicogenic headaches are a type of cervical instability headache that causes constant neck pain in addition to the actual headache.6
Have you been diagnosed with Ehlers-Danlos syndrome (EDS)? Do you experience neck pain-related migraine attacks? If so, do they respond differently to your normal migraine treatment as well?
In the past year, has insurance made it difficult to get your migraine treatment?