Understanding Common Headache Types in HEDS

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Living with Hypermobile Ehlers-Danlos Syndrome (HEDS) often means dealing with a variety of symptoms, and headaches are among the most frequent and challenging. These headaches can arise from different causes, each requiring specific attention and management. Understanding the common types of headaches in HEDS can help you identify triggers and seek appropriate treatment.

Medication Overuse Headaches

Medication overuse headaches (MOH) occur when pain relief medications are taken too frequently. People with HEDS may rely on painkillers such as Tylenol, Motrin, or Aspirin to manage chronic pain, but overuse can backfire, causing headaches that worsen over time.

Key points about MOH:

• Often develops after regular use of headache medications for more than three months or 15 headaches days in a month for a 3 month period.

• Symptoms include daily or near-daily headaches that worsen with medication use.

• Common medications involved include over-the-counter pain relievers, triptans, and opioids.

• Treatment involves gradually reducing medication under medical supervision to break the cycle.

  
  

For example, someone taking ibuprofen daily for joint pain might start experiencing constant headaches that only ease temporarily after taking more ibuprofen. This cycle can be hard to break without professional help. It will generally take a month of not using the "regular use" pain killer" for the rebound headaches to subside. If the headache is tolerable use a heat or ice pack and lie down for a bit till the headache subsides rather than using a medication. Reserve medications for headaches that will not go away without pharmaceutical intervention.

Migraines in HEDS

Migraines are intense headaches often accompanied by nausea, light sensitivity, and visual disturbances. People with HEDS have a higher risk of migraines due to connective tissue abnormalities affecting blood vessels and nerves.

Characteristics of migraines include:

• Throbbing or pulsating pain, usually on one side of the head.

• Lasting from 4 hours to several days.

• Triggers such as stress, hormonal changes, certain foods, fragrances, or weather changes.

• Possible aura symptoms like flashing lights or tingling sensations.

  
  

Managing migraines in HEDS may require a combination of lifestyle changes, preventive medications, and avoiding known triggers. If migraine is more than 14 days in a month preventative medications need to be discussed with your healthcare provider. Things like Triptans, Inderal, Topamax, Depakote, and the latest on the block the CGRP inhibitors which come in tablets or injections. For instance, maintaining hydration, avoiding known triggers, and regular sleep patterns in combination can work well together to reduce migraine frequency for most people.

TMJ Dysfunction Headaches

Temporomandibular joint (TMJ) dysfunction is common in HEDS due to joint hypermobility affecting the jaw. TMJ problems can cause headaches that feel like tension or pressure around the temples and jaw. At times the whole affected side of the face can become sore and tender.

Signs of TMJ-related headaches:

• Pain or tenderness in the jaw joint area.

• Clicking or popping sounds when opening or closing the mouth.

• Difficulty chewing or jaw locking.

• Headaches that worsen with jaw movement.

  
  

Treatment may include physical therapy, jaw exercises, bite guards, or pain management strategies. For example, a person with HEDS might notice headaches intensify after chewing tough foods or clenching their jaw during stress.

Orthostatic Headaches

Orthostatic headaches occur when standing up and improve when lying down. They are linked to changes in cerebrospinal fluid pressure or blood flow, which can be affected by the connective tissue laxity in HEDS.

Features of orthostatic headaches:

• Headache worsens within minutes of standing.

• Relief occurs when lying flat.

• May be accompanied by dizziness or lightheadedness.

• Often related to postural orthostatic tachycardia syndrome (POTS), common in HEDS.

  
  

Managing orthostatic headaches involves addressing underlying blood flow issues, increasing fluid and salt intake, and sometimes using compression garments. For example, someone might find their headache disappears after resting horizontally for a while.

Intracranial Hypertension Headaches

Intracranial hypertension means increased pressure inside the skull, which can cause severe headaches. In HEDS, fragile blood vessels and connective tissue abnormalities may contribute to this condition.

Symptoms include:

• Persistent, severe headaches often worse in the morning.

• Visual disturbances such as blurred vision or double vision.

• Ringing in the ears or pulsatile tinnitus.

• Nausea and vomiting in some cases.

  
  

Diagnosis requires medical imaging and pressure measurements. Treatment may involve medications to reduce pressure or surgical options in severe cases. Early detection is crucial to prevent complications like vision loss.

Cervicogenic Headaches

Cervicogenic headaches originate from problems in the neck, which is a common issue in HEDS due to joint instability and muscle strain.

Typical features:

• Pain starts in the neck and radiates to the head.

• Often one-sided and worsens with neck movement.

• May be accompanied by reduced neck mobility.

• Triggered by poor posture or neck injury.

  
  

Physical therapy focusing on neck stabilization and posture correction often helps. For example, someone with HEDS might experience headaches after long periods of looking down at a screen or sleeping in an awkward position. If you do a lot of computer work ensure that you raise the computer up so you are not looking down and straining your neck. Also important when looking at your phone to raise it up instead of looking down at it.

Understanding these headache types can empower those with HEDS to recognize patterns and seek targeted treatments. Since headaches in HEDS can have multiple causes, working closely with healthcare providers is essential to develop a personalized management plan. If headaches become frequent or severe, professional evaluation is necessary to rule out serious conditions and optimize care.