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Cluster headaches are a rare and severe type of headache that can cause intense pain for minutes to hours at a time. These headaches are also often called ‘suicide headaches’ because the pain can be so overwhelming that some people contemplate taking their own lives. Cluster headaches are extremely difficult to diagnose and treat, so it is important to advocate for yourself and seek out the best treatment options if you suffer from these unbearable headaches.

What are Cluster Headaches?

Cluster headaches are a type of primary headache disorder that are often described as some of the most severe headaches a person can experience. The pain caused by these headaches is typically unilateral, meaning it occurs on only one side of the head, and is often localized behind the eye. The headaches typically come in clusters, meaning they occur repeatedly in episodes that can last for weeks or even months, but in some cases, people may experience chronic clusters of headaches with no breaks in between.

There are several types of cluster headaches, including episodic, chronic, and paroxysmal hemicrania (PH). People who suffer from episodic clusters may experience headaches that start suddenly and last for 15 minutes to 3 hours, while people with chronic clusters will have headaches that occur in episodes of less than a day with no remission period in between. PH is another type of headache disorder that causes unilateral pain lasting for 2-30 minutes and can occur up to 40 times in a single day.

How to Advocate for Yourself When Seeking Treatment for Cluster Headaches

Because cluster headaches are so rare and difficult to diagnose, it is important for those experienceing them to advocate for themselves when seeking treatment. The following are some tips for how to do so:

Find the Right Healthcare Provider

You can start by looking for a headache specialist in your area who will be able to properly diagnose and treat your condition. It is also helpful to find a healthcare provider who is familiar with the latest research on cluster headaches, as well as the different treatment options available. You can do an online search for cluster headache specialists in your area, or contact your insurance provider for a list of healthcare professionals who might be able to help. Don’t be afraid to fire your healthcare provider if they are not giving you the care and attention you need.

Be Informed

Before you meet with a healthcare provider, it is important to do some research on cluster headaches in order to better understand your condition and the various treatment options. Read books, articles, and studies on cluster headaches and try to find support groups where you can speak with other people suffering from the same condition. Participating in these groups can help you learn about what has and has not worked for others in terms of treatments, and it can also provide you with much needed support and encouragement.

Keep a Record of Your Symptoms

It is also a good idea to keep a record of your cluster headache symptoms, as well as various triggers and possible remedies, to take with you when you meet with your healthcare provider. Try to document your pain level on a scale of 1-10, as well as the duration and frequency of your attacks. Also note any surrounding events that may have triggered the headache, such as stress or certain foods or drinks. This information will be helpful for your healthcare provider in diagnosing and treating your condition.

Ask the Right Questions

During your appointment, be sure to ask your healthcare provider plenty of questions about your cluster headache diagnosis and treatment options. Ask about their experience with treating the condition, as well as their approach to diagnosis and treatment. Also ask about any potential side effects of the prescribed treatments and the likelihood of improvement or remission. You have the right to ask as many questions as you need to, and it is important to advocate for yourself until you are satisfied with your healthcare provider’s answers.

Consider the Non-Medical Approach

In addition to medication, there are a variety of non-medical treatments that may help to provide relief from cluster headaches. For example, relaxation techniques such as deep breathing and meditation have been shown to help reduce the intensity and frequency of attacks. Some people also find relief from regular exercise, as well as techniques such as biofeedback and acupuncture. It is important to stay open to these options, as they can be helpful adjuncts to more traditional treatments.

In conclusion, it can be very difficult to diagnose and treat cluster headaches. For this reason, it is important to advocate for yourself and seek out the best treatment options if you suffer from these unbearable headaches. Look for a healthcare provider who is familiar with your condition, be informed, keep track of your symptoms and triggers, ask the right questions, and stay open to complementary treatments. With the right approach, you may be able to find the relief you need.