Ainslie Course experienced her first cluster headache when she was only 19. She was awakened from sleep by intense head pain at 2am. The pain was violent. Personally violent. Restless and sweating. She thought she was dying, sure she had a tumor or that her brain was bleeding. For an hour and a half, she clutched and punched her head, balling her fist into her right eye, trying to release the pain. Was she dreaming this?
What is a Cluster Headache?
Cluster headache is nicknamed “suicide headache” because the experience is so intense that people are known to consider suicide as a method to end the pain. However, cluster headaches are not migraine; they are extremely intense headaches, often occurring at night, violently waking one from sleep. Entering REM sleep can be a trigger.
The excruciating pain is almost always on one side of the head, usually at or near the eye socket. It is accompanied by tearing of the eye, stuffy or runny nose on one side and facial sweating. Agitation or restlessness is common; people often pace or rock, groan, cry or even scream. Cluster headache attacks are more common in men than women and occur in cycles or “clusters” and can last weeks or months, followed by periods of remission.
Journey to a Diagnosis
As a young, otherwise healthy adult, Ainslie saw dozens of doctors and specialists. Time after time, she was diagnosed with migraine, and her doctors prescribed all sorts of pills. Over her 15-year journey to a proper diagnosis, she tried close to 60 different medications. She kept telling the doctors they weren’t helping, but either they didn’t believe her or they called her an “attention seeker” or a “drug seeker.” Finally, one doctor said he thought her pain was imaginary and told her she needed a psychiatrist, not a neurologist, saying, “There might be one thing that would help you: a straightjacket.”
It wasn’t until she was in her 30s that she flew to London to see a neurologist. Through her own research, she was sure she had cluster headache. She couldn’t get a doctor to commit to that diagnosis because she didn’t tick the right boxes. The doctor in London asked her to tell him about her headache attacks, and within five minutes of her explanation, he diagnosed her with cluster headache.
The Worst Cluster Episode
Her worst experience was a very rare double cluster that occurred on both sides of her head. It only happened four times in 36 years, but they were horrific. One time, she got into her shower and ended up vomiting, wetting and soiling herself. Her body just couldn’t handle the volume of pain. She remembers lying on the floor, looking up at the bedroom ceiling, covered in her own bodily fluids, thinking, “Will that take my weight if I hang myself right now?”
Twenty years ago, Ainslie found Bob Wold, president of Clusterbusters. The organization was in its infancy, having only about a dozen members. Everyone communicated by email. No one knew what each other looked like. She just knew she was a clusterhead that desperately needed help, and Bob was there for her. Ainslie credits Bob with saving her life when he taught her about busting.
Treating cluster headache with psilocybin (magic mushrooms) is called busting, i.e., busting a cluster headache cycle. It took a while for Ainslie to “pluck up the courage” to bust, but she learned from Bob what supplies she would need to bust safely. At first, she didn’t bust regularly because she couldn’t reliably get supplies, but she had “cluster angels” to help her out. Today she is self-sufficient and sometimes picks her own mushrooms. In Scotland, if you know just the right spot, you can pick your own mushrooms. They grow wild, with a very short season of 10 days at the end of October.
Clusterbusters is a non-profit organization that supports research for better cluster headache treatments and a cure. It provides support for clusterheads worldwide. Ainslie went to her first conference in 2015 in Chicago, where she finally met Bob in person for the first time — an incredibly emotional moment, as you may imagine.
Ainslie has been very involved with the group for the last twenty years. In 2019, she was asked to join the board and accepted immediately. She loves volunteering for Clusterbusters. They are a wonderful organization and Bob, in particular, has done amazing advocacy work. Today, Ainslie is honored to be Vice President. She is proud of the work they do globally. Currently, she is concentrating on trying to have psilocybin rescheduled in the UK, making it legal to obtain.
Hard to Cope
Cluster headache commanded Ainslie’s life for a very long time. If she had to go anywhere, it was like a military operation: She had to make sure that she had her abortive medication and oxygen tank with her. She wondered how far she could travel and always parked her car close to the store’s entrance in case she had a cluster attack.
Ainslie remembers sitting in the back seat of her car with an oxygen mask on, agitated and rocking, while several people knocked on the window, wondering if she was okay. They were nice people who meant well and asked if she needed an ambulance, but she couldn’t answer. It was always physically and mentally exhausting, depressing and embarrassing. What must they think of her? All she could do was ride out the attack until she was okay to drive home.
The Right Attitude
Ainslie makes it very clear she is not a sufferer. She is a survivor. Psychologically, she thinks it is much better to say, “Go me! I’ve survived this!” than “Poor me, I suffer from cluster headache.” She believes we have to train ourselves not to think we are sufferers. We are warriors. Survivors.
Ainslie still gets cluster cycles in the spring and fall. They are still bad, but they aren’t nearly as intense, and the attacks are less frequent now because of busting. She acknowledges that she has cluster headache disease and needs to manage it, but it doesn’t keep her in the house anymore. She is now able to travel a lot — and she loves to travel.
- If you suspect you have cluster headache, go to a headache specialist neurologist, not a general neurologist.
- It is imperative to request oxygen from your doctor and get on it right away when you feel an attack coming on. Abort time is 15 -30 minutes.
- You can find a huge amount of information from Clusterbusters and many social media support groups.
- Surround yourself with people. They can’t take your pain away, but sometimes being able to share with someone who truly understands is a precious thing.
- Even if you only have short periods of good time, do something for yourself. Go outside, put your sunglasses on and take a walk; call a friend; or run a bubble bath. It may only be for a short time, but these are comforting and positive things to do.
- Most importantly, make sure you educate yourself about your condition and treatment options. Print off information you find, and then go prepared for your neurology appointment. Also, be sure to take notes at your consultation, and don’t hesitate to ask questions!