Ehlers Danlos Migraine

Patients with EDS may experience several different forms of headaches. Headaches caused by migraines (long-lasting headaches that are typically felt as a pulsating pain on one side of the head), muscular strain, high blood pressure, and other physical problems are examples of what you could experience. These conditions can be quite disabling. Those who suffer understand that they are responsible for far more than slight discomfort or inconvenience.

In comparison to individuals who do not have excessive flexibility, people who live with hypermobility are three times more likely to get migraines and have twice as frequent headaches. This is a significant number, and it adds yet another health concern to the list of problems that many people who have hypermobility and related diseases are already dealing with.

Fact: Migraines are more severe in people with hEDS and joint hypermobility. Migraines are also very unbearable sometimes.

What is Migraine and how does it affect you?

Migraine is a condition that involves more than a headache. Migraine is a chronic, debilitating condition that can have a significant influence on a person’s ability to carry out ordinary activities such as attending family gatherings or going to the workplace. Migraine may also be stressful for family members, including spouses, parents, children, and other relatives who are suffering from it.

What exactly is EDS?

Inflammatory connective tissue disorders such as joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome (hypermobility type (EDS-HT))have clinically similar symptoms and connective tissue disorders that are strongly associated with musculoskeletal pain, fatigue, and headache (Migraine).

In what proportion of individuals with EDS/hypermobility syndrome do they get migraines?

Aura or not, migraine headache with or without aura is regarded to be the most prevalent type of headache in JHS/EDS-HT patients.

However, most people who suffer from Migraines are unaware that they also suffer from JHS/EDS-HT. It is the most commonly overlooked diagnosis. Individuals with EDS may be more susceptible to migraines due to an underlying connective tissue disease that impairs the stability of the joints. These people suffering from migraines have increased pressure on their surrounding tissues, resulting in increased pain and inflammation, which causes the tissue to become hyperreactive, creating acute symptoms and a long-term presentation of the condition.


How do these patients exhibit themselves in therapy?

The majority of individuals who suffer from EDS-HT syndrome are utterly ignorant of their condition. They are most commonly diagnosed with fibromyalgia and have numerous neurological or myofascial pain complaints such as tendinitis, among other things.

Further investigation reveals that they have EDS-HT and have been suffering from migraines and other peripheral nerve/muscle pain symptoms as part of their overall chronic pain symptoms since birth.

Fact: EDS is characterized by hypermobility, which might progress to early arthritis in the future.

Patients with EDS-HT have a mild to practically non-existent end sensation in their joints. Due to the excessive laxity of their ligaments, they are unable to deliver proprioceptive information to their joints. Even though they are the most hypermobile patients, these patients constantly complain of joint tightness. The fact that they never feel like they have gotten enough stretch leads to their continuing to stretch, promoting aggravation of symptoms. The cycle continues as they continue to contribute to the problem. Overstretching causes operations to fail, and it also causes the repairs to take longer to complete. In some instances, the strain on the nerves can create neurological symptoms. As a result of the absence of any other issues, they are diagnosed with fibromyalgia.

What is the course of treatment for a patient suffering with EDS-HT?

  • Patients who present with headaches or neck flare-ups, particularly after sleeping, were advised to avoid stomach sleeping or to sleep with a brace in order to minimize overstretching of the tissues in the neck and aggravating the structures, therefore preventing these flare-ups. In extreme situations, neck braces are often suggested when driving to protect the neck. During loading activities, oval eight splints for the fingers are used to avoid hyperextension of the fingers while enabling them to function in a pain-free range and providing them with a precise end feel. The goal of using splints is to allow for functional activities while also minimizing cartilage wear and tear, which might lead to the development of early arthritis.
  • It is preferable to perform upper extremity exercises while lying down with the head supported, either face down or up. Consequently, all postural exercises are recommended to be performed laying down on the table, including isotonic prone rows/extensions, side-lying external rotation with the head appropriately supported, and so forth. If PNFs were prescribed, they had to be performed supine with a T-Band rather than standing until the patient’s stability was improved.
  • It is recommended that you perform the foam roll exercise, which is part of the postural correction/nerve gliding exercises, on your bed or with a 3″ roller to avoid undue tension on your anterior shoulder tissues.
  • Patients are advised to avoid placing any weight on their hands, mainly when performing pushups. The neural wrist can only be held in the fisted position.
  • These patients report tightness in the tissues, which they associate with aching. This pain usually has a neurological component to it, and stretching does not alleviate it. This is partly because extending the joint does not provide the flexibility of the patient’s tissues by stretching. Myofascial Manipulation with nerve glides is used to glide the nerve (decrease pain/sensitivity) without overstretching the joints in order to control neural discomfort and sensitivity.
  • Taping can be utilized in between sessions to decrease discomfort and speed up the process of re-education of the neuromuscular system. These individuals have a lack of end-of-range feeling in their joints. Taping is done to provide proprioceptive input to the joints to offer that end feel and provide stability to prevent joint subluxation. The corrective tape also aids in reducing the amount of stress placed on the mechanoreceptors that generate pain, allowing for neuromuscular strengthening to occur as a result of physical activity and exercise.

Therapy recommendations include the following:

Due to the redundant nature of their main structures (ligaments), the secondary stabilizers must be strengthened in order to function properly.

  • Mid-Range Strengthening or Isometrics of all joints, including those of the neck
  • The objective of rehabilitation is to recover smooth and balanced motion by using dynamic muscle stabilization to compensate for inadequate ligament support and encourage muscles that are joint protective of combining conscious and unconscious, giving stability while doing ADLs, therefore achieving long-term outcomes and avoiding future issues. This is a collaborative effort that is accomplished by splinting, taping, and strengthening the appropriate structures in the proper manner.

What role does Botox play in the treatment of migraines?

A complete understanding of the pathomechanism of chronic Migraines has not yet been achieved. Inhibiting the release of calcitonin gene-related peptide and substance P in the trigeminovascular system is thought to be the mechanism of onabotulinumtoxinA in treating chronic migraines some researchers. Clinical studies have indicated that long-term intramuscular onabotulinumtoxinA injection therapy at a single location and fixed dosage (155-195 U) to prevent chronic Migraine is efficacious and well-tolerated in the preventive treatment of Chronic Migraine.

Botox injections in individuals with previously undiagnosed EDS-HT

Given that EDS-HT patients have loose ligaments, the joints’ stability depends on their secondary stabilizers, which are the musculoskeletal system and the tendons and muscles. To keep the ligaments from being overworked, it is reinforced in the middle range. However, if the Botox intramuscular injection treatment is performed, it will damage the structural systems that these individuals rely on to maintain their stability. The long-term consequences of which may be harmful to these individuals, resulting in an increase in neuromuscular complaints.

Before Botox may be administered to this patient population, more research and proper assessment may be required.


Although there are various causes of headaches, experts think that two significant aspects produce headaches in the hypermobile.

  1. First and foremost, there is cervical-cranial instability (or wrong head position for those of us who are not scientists!). A forward head position of just 2 degrees can thereby double the weight carried by the head if it is not corrected. Consider what would happen if the head moved forward more than 2 degrees. That’s a lot to bear, and it puts a lot of tension on the neck and shoulders, which must be tolerated daily. They become inflamed and irritated as a result, causing anxiety and headaches to develop.
  2. Second, the location of the mandibular joint, often known as the lower jaw, which is the part of the body that humans utilize for chewing. This joint has the potential to malfunction in hypermobility, causing the joint position to shift. Muscle spasms and headaches are the results of this imbalance. It can also make eating extremely uncomfortable and make it difficult to completely extend the jaw.

Here are some relaxing methods that you may do to help ease some of these difficulties and reduce the frequency and intensity of your headaches: Relaxation is essential in order to attempt to relax those overused muscles in order to provide some pain relief:

  1. Lying supine – take a soft but helpful pillow or cushion. As you sit with your head on the cushion, try to imagine that someone is gently caressing your head. Allow the weight of your head to sink down into the pillow with each exhalation you take. Feel the love and support.
  2. It might be helpful to think that your head is becoming heavier with each breath so that you are no longer straining to keep your head up. This part of the body is difficult to relax, even when we are calm, so practicing mindfulness and deep breathing in this area will be beneficial. If you have 5-10 minutes to spare, it is quite calming to be here.
  3. To help relax your jaw muscles, consider resting your tongue on the roof of your mouth such that your back teeth are only a few millimeters apart. We frequently clench our jaws in an attempt to maintain control, but the rear teeth should never come into contact with one another. Consider the possibility of the lower jaw dangling from the head.
  4. Finally, soften the lips and allow them to be separated by a very little distance. Fascial tension, which includes tightness around the jaw and the lips, might result in a headache if not addressed.
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