Many cluster headache patients find it difficult to talk with their healthcare provider about treatment options as most medical professionals have little to no experience in treating “clusterheads.” It’s important to seek out a Headache Specialist or neurologist who focuses on headache disorders, but patients in rural areas may have a hard time getting an appointment with a qualified doctor nearby. Specialists and neurology centers often have a six month or longer wait list as well. Whether you’re seeing your primary care physician, nurse practitioner, or a certified headache specialist, it’s critical to understand your treatment options and how to discuss them with your treating physician.
Clusterbusters has an extensive online library with documents on treatments from publications and institutions such as the American Headache Society and leading neurologists in the field. We recommend bringing a few printed resources with you to your appointment to go over in detail with your provider. Some people find that they can’t take the first or second-line medications because of comorbid conditions or the possibility of adverse reactions with other necessary pharmaceutical interventions.
Most doctors are happy to go over treatments with informed cluster headache patients, while others may not be as receptive. Here are some of our tips for how to speak with your doctor about treatment options:
Getting High Flow Oxygen for Cluster Headaches
Doctors can be squeamish about prescribing 100% oxygen to cluster headache patients at the recommended high flow rates. This could be because they’re concerned about “oxygen toxicity,” which is not typically a concern for clusterheads as you’re not on high-flow for long enough to risk lung damage. However, pre-existing lung issues could complicate candidacy for oxygen. A majority of cluster headache patients respond to oxygen therapy to safely abort attacks within 15 to 20 minutes. It’s an excellent treatment and considered first-line by headache specialists worldwide.
Clusterbusters has a detailed oxygen page where you can learn more about this treatment, and we also offer a printable resource for your provider to help them understand why you need oxygen and the correct way to prescribe it. You will need a prescription for high-flow oxygen at a rate of at least 12-15 liters per minute with a non-rebreather mask, which can be filled by a local oxygen supplier.
Insurance providers, specifically Medicaid and Medicare, do not cover the cost of oxygen, which Clusterbusters and affiliates continue to fight at the highest levels of government. View and print Prescribing Oxygen for Cluster Headache: A Guide for the Provider and bring it to your next appointment or send it to your provider ahead of time.
Creating an Evolving Treatment Plan with Your Doctor
Cluster headaches are a tricky “beast” to control. Many clusterheads find an abortive treatment that works wonderfully well only to realize its efficacy slows down over time. This is often true with sumatriptan, sometimes requiring more injections for the same results or getting no relief at all in addition to “rebound” attacks. That’s why it’s essential to have an evolving treatment plan, so when one medication or therapy stops working, you have one or more waiting in the wings to abort or prevent attacks.
Your treatment plan will depend on if you are chronic or episodic. Cluster headache medications break down into three categories: Abortive, preventive, and transitional treatments. Transitional therapies are used to break an episodic cycle and may involve a burst of steroids to stop the attacks and push you into remission. Abortives are used to end individual—or acute—attacks and preventives (prophylactics) are meant to reduce the frequency and intensity of the attacks. Examples of these medications include oxygen, ketamine, and sumatriptan injections for abortives and verapamil or Emgality® for preventive care.
Your doctor may not be aware of all the treatments used for cluster headaches as most are prescribed off-label and made initially to treat migraine attacks, blood pressure, seizures, and so on. Some clusterheads are treatment “refractory,” meaning they don’t respond to traditional methods, so you and your doctor will need to be diligent about trying new options and changing your treatment plan. We have vast treatment archives with studies on various medications and therapies and encourage you to read through our treatment options and choices for cluster headaches.
View and print this resource for your next appointment: Information for Healthcare Providers on Treatment of Cluster Headache.
Discussing Less Conventional Treatments (Psychedelics) with Your Doctor
One of the most challenging conversations to have with your doctor is about psychedelics and similar alternative treatments. Many medical professionals have legal concerns regarding the discussion of psilocybin mushrooms, LSD, and LSA seeds with their cluster headache patients. However, the doctor-patient relationship is protected by a 2002 legal precedent set by Walters V. Conant that protected a doctor’s right to recommend medical marijuana to their patients with specific diseases despite its illegality on a federal level. Essentially, you and your doctor can discuss the efficacy of alternative treatments for cluster headaches without concern for legal ramifications.
Though he or she may feel uncomfortable and is not able to “prescribe” these treatments, it’s a crucial conversation to have so your physician knows you’re trying these treatments and is updated on how you’re doing. Some patients have gone into remission for two years or longer due to psychedelic compounds, which have been (and continue to be) studied for their remarkable abilities to treat not only cluster headaches but other debilitating conditions and mental health.
If your doctor is not willing to talk with you about these treatment choices, you may want to seek out another qualified physician. View our archive of Psychedelic Research to learn more about why and how these compounds work for cluster headaches and about the “busting” protocol. Psychedelics do interact with other medications, so some or all of your pharmaceutical treatments may need to be discontinued before trying alternative methods. Bob’s Blog discusses psychedelics often.
Referrals to Other Providers
If your primary care physician (PCP) is treating your cluster headaches right now, it’s likely a good idea to ask for a referral to a headache specialist or neurologist nearby. Clusterbusters has compiled a list of preferred doctors who understand the nuances of treating this neurological condition. Another reason for a referral could be that you’re unhappy with the care you’ve received from your current provider.
It’s common for patients to get a referral from a PCP to a specialist or if they’re seen in the ER, but this step is often missed in the shuffle of things. Being an advocate for proper care is essential. If you feel unheard or dismissed by your doctor, it’s time to find a new one.
Some other points to consider as you do research and figure out how to talk to your doctor about treatments options at your next appointment include:
- How long have you had cluster headaches? If you’re new to this journey, it can take some time to find a doctor you feel comfortable with and has the necessary experience and knowledge to help you find relief. Likewise, if it’s been a decades-long battle with the “beast” and your provider recently retired or you’ve never seen a headache specialist, it’s important to continue looking as treatments change and evolve.
- Are you episodic or chronic? Chronic clusterheads may see their doctors several times a year, whereas episodic patients may only see their headache doctor once a year or when a cycle begins. Which form of cluster headaches you have will impact your treatment plan as some medications should be taken in brief spurts to avoid severe side effects, and some therapies are more useful for one form over the other.
- Have additional options come to the market since your last visit? Headache medicine is continually changing. While it’s rare for a medication specifically made for cluster headaches to come to market (the only one is Emgality® for preventing episodic clusters), you’ll want to ask your doctor about emerging options, especially if a treatment recently stopped working for you.
Talking to your doctor about treatment options is an essential step towards achieving remission or having fewer attacks. Being an informed patient gives you an advantage and makes you more likely to reach pain relief and have better communication with your provider.