A Journey Through Cluster Headaches: The Story of Heidi Bedell, Pain Warrior


Living with chronic pain is a challenge few understand, but for those like Heidi Bedell, it’s often a daily reality. As a board member of The Will Erwin Headache Research Foundation, she has taken her pain and turned it into a mission to help others. Here we explore Heidi’s battle with cluster headaches and how others can find hope in their own journeys.

Understanding Cluster Headaches

Cluster headaches are frequently misunderstood and incorrectly diagnosed. The term “cluster headache” is often misleading, as it suggests something far less severe than the reality. This can breed confusion and a lack of understanding among people who are not informed of the condition. Renowned as one of the most excruciating types of headaches, they are often likened to a sharp knife stabbing into the back of the eyes. The intensity of the pain can be so overwhelming that it drives sufferers to despair, even leading to suicidal thoughts. Unlike migraines, cluster headaches are brief but violent, typically lasting 1 to 1.5 hours.

Episodic cluster headaches and chronic cluster headaches differ significantly in their patterns and impact on daily life. Chronic cluster headaches occur without significant remission periods, and if any remission does occur, it typically lasts less than a month. These headaches can happen almost daily for more than a year. On the other hand, episodic cluster headaches occur in periods or “clusters” that last from weeks to months, followed by remission periods without headaches which can span months or even years. During these cluster periods, headaches can occur from once every other day to multiple times a day. Understanding these differences is crucial for effective management and treatment.

Heidi’s Battle Begins

Heidi’s battle with cluster headaches began in 2006 when she was just 36 years old. Initially, her headaches were episodic, lasting for eight weeks every spring and occurring once a day. Unfortunately, she was misdiagnosed with migraines and prescribed medication that proved ineffective.

It took three long years for Heidi to be properly diagnosed with cluster headaches. Around this time, her condition worsened and became chronic, with headaches occurring year-round. This left her in a constant state of fear, never knowing when the next excruciating episode would strike.

The following 2-3 years was a period of immense struggle for Heidi. Living with chronic cluster headaches, she faced daily battles against pain and the emotional toll it took on her life.

Treatment Options and Challenges

Finding effective treatment for cluster headaches is a complex and often frustrating process. Heidi has tried various treatments with varying degrees of success.  There are two types of treatments – one kind manages the pain, the other seeks to reduce or eliminate the attacks from happening in the first place.

It is important to understand that not every case is the same, and the same treatments don’t always work best for every person with cluster headaches. If you are suffering from migraines or cluster headaches, consult with your doctor or a specialist about what treatment options might be best for you.

  • Oxygen Therapy
    Oxygen at a very high concentration using a special mask can be used to abort the pain of cluster headaches, and Heidi has found it very helpful. However, traveling with an oxygen tank can be a burden, so this is most practical for home use.
  • Sumatriptan injections
    Sumatriptan injections look like EpiPens. They deliver triptans directly into the blood stream, providing pain relief within ten minutes.  They can make you nauseous and the co-pay is often steep, but after oxygen it is a staple of pain relief for Heidi.
  • Topamax
    Topamax, a medication for seizures and migraines, has demonstrated some benefits for patients with cluster headaches. Initially, Heidi was reluctant to try the drug because of its serious side effects, which include extreme brain fog, loss of coordination, nervousness, tingling of the hands/feet, loss of appetite, changes in taste, diarrhea, and weight loss. However, driven by desperation and the search for relief, she eventually decided to give it a shot and live with the side effects. Topamax was effective for about 1.5 years and then stopped working for Heidi, at which point the search for relief was back on.
  • Steroid Medication
    Heidi’s most recent episode lasted five months from November to March. This time she used a steroid medication (prednisone) designed to reduce inflammation and therefore the frequency of her headaches. The side effects for long term use includes extreme insomnia, weight gain, heavy bruising and loss of bone density.  The prednisone reduced her attacks from eight a day to two, which was a welcome relief.
  • Lifestyle changes
    Heidi must avoid heavy exercise, alcohol, and heat during cluster headache cycles to keep her body temperature from elevating, which adds to inflammation, and therefore cluster headache attacks.

The Importance of Proper Diagnosis and Education

Ten to fifteen years ago, having cluster headaches felt hopeless due to a lack of understanding, recognition, and research. Today, education and access to correct medical partners are much better. Proper diagnosis and professional guidance have made a significant difference in the lives of many sufferers.

Heidi hopes that future research will find a real answer for prevention. On a personal level, she hopes to find a medication that can treat her without the serious side effects caused by many treatment options. Living with cluster headaches can be a rollercoaster of hope and let-downs. Some medications work for a period and then stop working. Heidi has gone for as long as a year and a half without medication and without episodes, but they did return. Even with the resources and support that exist now, the journey is very difficult.

A Message of Hope

Hang on and be your best advocate. The information and support are out there, and the path isn’t hopeless. Be a part of the solution—spread the word for support and be involved in the educational process. Consider making it a part of your charitable giving if you have the means to do so. Research and education are paramount and are the key to finding better treatments and support for cluster headache sufferers.  Consider signing up for clinical studies.  Interacting with others who suffer from cluster headaches can be comforting. Sharing experiences and support helps build a sense of community and reduces the feeling of isolation.


Heidi Bedell’s story is a testament to the strength and resilience of those who suffer from cluster headaches. Her advocacy work and involvement with The Will Erwin Headache Research Foundation are paving the way for better understanding and treatment of this debilitating condition. For those who suffer from cluster headaches, remember that you are not alone. There is hope, and together, we can make a difference.

If you’re interested in supporting research and education on cluster headaches, consider donating to The Will Erwin Headache Research Foundation. Your contribution can help bring us one step closer to finding a cure.