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Migraine is a complex and life-altering disorder on its own, but many people with the disease also live with Ehlers-Danlos syndrome (EDS), a group of connective tissue disorders that affect the skin, joints, and blood vessels — essentially the glue that holds the body together. And while one condition does not cause the other, both do influence each other.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos Subtypes
Hypermobile EDS (hEDS) is the most common subtype, with joint hypermobility as the primary symptom. People with this type usually have loose or overly flexible joints (some call them “double-jointed”). This can — and does — come in handy if you’re a gymnast, dancer, or contortionist.
Another common form is classical EDS (cEDS), which tends to affect the skin more. People with this form often have joint hypermobility as well but also stretchy, fragile skin that can split and bruise easily, be slow to heal, and leave unusual scarring.
A less common and more severe form, vascular EDS (vEDS), can cause the walls of the blood vessels, intestines, or uterus to rupture.
It’s important to understand that not everyone who is superflexible or has joint hypermobility has EDS: Those with symptoms related to hypermobility that don’t meet the criteria for any type of EDS are given the diagnosis of hypermobility spectrum disorders (HSDs).
Ehlers-Danlos Syndrome Symptoms
While each type has its own symptoms, the most common EDS symptoms include:
- Overly flexible joints
- Soft, almost velvety skin that’s thinner and stretchier than normal
- Bruising easily or often
- Unusual scarring or wounds/cuts that take longer to heal
- Joint and muscle pain
- Fatigue
- Difficulty concentrating
- Digestive problems
- Dizziness
- Headache and migraine
Does Ehlers-Danlos Syndrome Cause Headaches or Migraine?
- Migraine
- Coat-hanger aches (pain in the neck and shoulder area in a coat-hanger pattern)
- Carotid arterial dissections
- Intracranial hypotension
- Chiari malformation
- Cervical spine disorders
- Temporomandibular joint disorders
Although there is a clear link between connective tissue disorders and headache disorders, the reasons for that are not yet as clear.
“The underlying pathophysiologic mechanism linking EDS and migraine is not fully understood,” says Lauren Natbony, MD, assistant clinical professor of neurology at the Icahn School of Medicine at Mount Sinai and medical director of Integrative Headache Medicine of New York. “Various theories have been proposed, suggesting a complex interaction between connective tissue abnormalities, vascular irregularities, nerve compression, and heightened pain sensitivity,” she says.
But correlation is not causation: “While EDS and migraine are linked through a higher rate of co-occurrence and possibly shared pathophysiological pathways, one does not directly cause the other,” says Dr. Natbony, who estimates around 15 percent of her headache patients also have some form of EDS. But she adds that because she is a specialist and screens all patients with joint hypermobility for EDS, her percentage is likely skewed.
Migraine Is Worse in People With Ehlers-Danlos Syndrome
What is clear — as studies have shown and doctors and patients will attest — is that migraine is more severe in people with EDS than in people without it.
Natbony says there may be several reasons for migraine symptoms being more severe: “First, people with EDS often exhibit a heightened sensitivity to pain,” she says. “Second, chronic joint pain, frequent dislocations, and general fatigue associated with EDS can contribute to the body's overall stress load.
“Chronic stress is a well-known trigger for migraine attacks and can also make the management of migraine more challenging. Furthermore, individuals with EDS frequently experience other comorbid conditions like dysautonomia, which may also predispose them to migraine.”
Because EDS involves multiple body systems that may need to be treated with medications — in addition to migraine medications — medication overuse headache might also be a factor.
A Bundle of Related Conditions
Dysautonomia is an umbrella term for a malfunction of the autonomic nervous system (ANS). The ANS regulates the body’s involuntary functions, like breathing, blood pressure, heart rate, temperature, and sweating. One form is postural orthostatic tachycardia syndrome (POTS), another underdiagnosed condition that often goes hand in hand with migraine.
Mast cell diseases are caused by overactive mast cells, which are the cells that protect us from foreign invaders like germs and parasites. Dr. Martin says that mast cell diseases are very common in patients with EDS.
The combination of all three disorders — EDS, POTS, and mast cell diseases — can make migraine “more frequent, more severe, and more disabling.”
How Ehlers-Danlos Syndrome and Migraine Are Managed
Managing migraine along with these multiple conditions is especially complicated and should involve more than one specialist, partly because it’s difficult to parse out which conditions are causing which symptoms.
“There is no simple answer here,” says Natbony. “Managing both EDS and migraine requires a comprehensive and multidisciplinary treatment approach, as the overlap in symptoms and the unique challenges of each condition complicate standard treatment protocols. Ideally, a treatment plan should include:
- Pharmacologic treatments
- Physical therapy tailored to the patient's needs
- Psychological support
- Careful monitoring of symptoms and medication side effects
Gentle Movement and Mindfulness
One treatment that covers all the bases is exercise; however, that must be done carefully.
“You probably don't want to be doing exercises that actually increase your flexibility as much,” says Martin. “More isometric exercises, that kind of increase muscle tone without increasing flexibility, would probably be the way to go. And that's something a physical therapist (PT) who has expertise in EDS patients would be helpful with.”
Peter Nguyen, DPT, a physical therapist with MovementX in Orange County, California, says that while people with migraine generally benefit from stretching the neck and shoulder areas, if EDS is also present, stretching should be limited. “Patients with EDS should strengthen muscles around lax joints and learn to move via repetition and muscle memory [without moving] toward end ranges,” he says. “Learning to move the body within moderate ranges of motion can preserve joints.”
Movement can be extra challenging for patients with EDS and migraine because of the fatigue that is prevalent in both conditions, plus the potential for injuries and the muscle and joint pain that comes with EDS.
“If you've got pain in your joints, and in your neck, and in your back, and you've got fibromyalgia, and then you've got POTS, and you've got mast cell [disease] — I mean, you can imagine that these disorders take a toll on people,” says Martin. “Each one of those things can cause fatigue. Fatigue is a huge symptom in patients with EDS and is really managed mostly by managing these disorders that can cause fatigue.”
Nguyen says that, along with muscle strengthening, mindfulness and relaxation training can be beneficial to all of the related conditions, as these techniques “increase awareness of the body and aid in core strengthening.”
Diagnosis and Treatment of Ehlers-Danlos Syndrome Can Be Tricky
Despite the challenges people with EDS, migraine, and other concurrent conditions experience, Martin says it’s definitely possible to have a decent quality of life, but the first steps are a correct diagnosis and finding knowledgeable healthcare providers to manage all your symptoms.
Unfortunately, both are easier said than done.
Because EDS involves a variety of broad and overlapping symptoms that affect multiple body systems, it’s often difficult for practitioners to pinpoint EDS as the cause immediately, says Natbony. “And while genetic tests can confirm most types of EDS, the most common type, hEDS, does not yet have a specific genetic marker identified for routine testing,” she says.
She also notes that there is a lack of awareness and education of EDS among healthcare professionals in general. “Because it is considered a rare condition, not all doctors are familiar with its signs and symptoms or confident in diagnosing it,” she says. “This can lead to misdiagnosis or significant delays in reaching a correct diagnosis.
Actress and writer Lena Dunham, who turns 38 in May, has been open about her struggles with hEDS, recently sharing on social media that it was a fan who encouraged her to see a specialist for a diagnosis after seeing her on TV and reading her writings about chronic pain. "Until I was in my late twenties, I didn't know that all my bendy party tricks (or the random fits of flushing which made red lipstick a gamble, or my migraines or swollen knees or fainting spells ...) weren't just quirks," she wrote.
Other celebrities who have been open about or reported to have an EDS diagnosis include singer-songwriter Sia, actress Jameela Jamil, iconic singer and actress Cher, singer-songwriter Billie Eilish, actress Selma Blair, and late singer-songwriter Sinead O'Connor.
What Kinds of Doctors Treat Ehlers-Danlos Syndrome?
EDS is best managed by a team of specialists from a variety of areas, including neurologists, genetic counselors, rheumatologists, orthopedists, gastroenterologists, urologists, cardiologists, dermatologists, and ophthalmologists, as well as psychologists, psychiatrists, and behavioral therapists to help manage the toll these conditions take on mental health.
Martin says the best way to find healthcare professionals savvy enough to manage all the multiple conditions is through word-of-mouth referrals. A good place to start is with a community support group like The Ehlers-Danlos Society. Your other healthcare providers can also be a good resource if they are keeping tabs on the community or hear patient recommendations.
Final Thoughts
There is a clear link between EDS and migraine, even if that link isn’t well understood. Further research is needed on EDS and its related conditions, including migraine, in order to get more precise care for people juggling these multiple conditions. Because one condition makes the other worse, it’s important that multiple qualified specialists are involved in creating treatment plans and managing symptoms.
And while living with these conditions stacked on top of migraine can seem insurmountable and be incredibly frustrating, a good quality of life is not out of reach.
“EDS is not a sentence to a poor-quality life,” says Martin. “There are instances, if you've got more and more of these illnesses, that it becomes more of a challenge — but even so, I wouldn't leave people with the thought that there are not things that we can do for them, because there's a lot that can be done to treat EDS and the other disorders that occur with it.”
