What to Do When Nothing is Working for Your Cluster Headaches

Cluster headaches are an evolving beast. No treatment seems to work forever, whether you’re chronic or episodic. A common phrase we hear among clusterheads is “What works for one cycle, won’t work the next.” A steroid burst may break one but do nothing the next time you try it. At least, that was the case for me. My husband used to respond to Toradol, sumatriptan, and other options that do nothing to touch his intractable chronic cluster headaches now.

What are your options?

Clusterheads often cycle back to medications to see if they may work again. Still, many of us have found ourselves in the patient’s seat, asking, “What else can we try?” Sometimes, that answer is nothing—in which case, the true answer might be to find another doctor. There are lesser-known treatments for cluster headaches with evidence-backing that could be worth a conversation with your neurologist or headache specialist.

It’s important to try the Level A treatments first.¹ Those include high-flow oxygen, sumatriptan injections, and zolmitriptan nasal spray, as outlined in a May 2019 article in Practical Neurology.² Make sure that you have tried oxygen therapy correctly. You need high-flow (at least 12 liters per minute), a non-rebreather mask (no holes by the nose), and a hyperventilation breathing method to achieve pain relief with oxygen for cluster headaches.

Intranasal ketamine

Ketamine infusions are a common inpatient treatment for migraine disease and cluster headaches. A nasal spray of this compound is showing more and more promise, though. The report linked above discusses nasal ketamine and how this anesthetic is “best reserved for those failing or otherwise not suitable for other abortive therapies.” A compounding pharmacy must fill a ketamine prescription from your provider, and breaks are needed to prevent tolerance issues. This treatment has given my husband a markedly better quality of life over the last two years.

Serotonergic hallucinogens

Psilocybin and LSD are being studied for their abilities to stop a cluster headache cycle and extend remission periods. Studies are ongoing at Yale University, but previous research in Hannover, Germany, and at Harvard University demonstrated the potential for these psychedelic compounds to end cluster headache attacks. People who have treated their attacks with psilocybin mushrooms or LSD often share their stories. Bob Wold was prescribed 70 medications before learning about these substances, which changed his life. The 2019 report discusses DMT (N,N-dimethyltryptamine) as another psychedelic agent showing promise.

Other lesser-known treatments

Chugging a red bull or 5-hour energy is a treatment hack for cluster headache attacks, but there are other note-worthy treatments discussed in the literature and among patients, including:

• Implanted sphenopalatine ganglion stimulator for chronic cluster headaches
• Handheld, noninvasive vagal nerve stimulator for episodic cluster headaches
• Lidocaine nasal spray
• Vitamin D3 Regimen³

How to approach your doctor

Most health care professionals, including neurologists, are woefully uneducated about cluster headaches, let alone how to treat them. You’ve likely had at least one doctor give up on you or try to give you opioids (there is ZERO evidence that opioids help cluster headaches) instead of oxygen therapy or sumatriptan injections. The best way to approach your doctor about trying the treatments above is to print out the research. You can bring it with you or submit it through your online portal to help them better understand how to help you.