A torrent of severe headaches
Cluster headache is one of the most severe pain disorders known to humankind. It is characterized by sudden, excruciating attacks of pain lasting 15 to 180 minutes, typically affecting one side of the head, such as the eye, forehead, or temple. Up to eight attacks can occur per day. In addition to the pain, symptoms may include red eyes, watery eyes, nasal congestion, runny nose, increased sweating of the forehead and face, constricted pupils, drooping eyelids, eyelid swelling, and restlessness with an urge to move. The attacks occur in clusters over a specific period, usually an active phase of approximately six weeks. The term "cluster headache" is used in English to describe this type of headache. Some sufferers experience headache-free weeks or months between these clusters of attacks; this pattern is classified as episodic cluster headache . Other sufferers do not experience such headache-free intervals; this subtype is chronic cluster headache .
Late diagnosis, serious consequences
According to various studies, the prevalence of cluster headache in the general population is approximately 1%. On average, according to a survey by cluster headache self-help groups in Germany, it takes more than eight years for a correct diagnosis to be made. Effective diagnoses are often made very late or not at all, meaning that effective therapies are either not initiated or only started after many agonizing years of a painful odyssey, doctor-hopping, the use of unconventional methods, and serious complications. Furthermore, cluster headaches are largely unexplored, undiagnosed, and often mistreated or left untreated, making them one of the most debilitating and simultaneously most disabling pain disorders. Social isolation, personality changes, anxiety, depression, despondency, anger, grief, despair, and a loss of the will to live are among its many companions. Family members usually suffer alongside the sufferers, often in fear and despair. Yet, with specialized knowledge, cluster headaches can generally be diagnosed quickly and accurately today. Highly effective treatment options exist, which, when understood and applied appropriately, usually provide effective and rapid relief.
Prevent pain, avoid complications
Cluster headaches are barely mentioned in medical training and continuing education. Disability law makes no mention of this severe pain disorder. Those affected are still considered the stepchildren of medicine. Even the German language lacks a word for this pain. Cluster headaches are the nameless pain . The result is a kind of pain illiteracy. It is often called "suicidal headache": the extinguished will to live without hope describes the tragic individual consequence of a delayed diagnosis and ineffective treatment. This video from a cluster headache clinic documents a typical course of a long, tragic ordeal.
I suffered from CK until 2022. For 12 years. It took five years to get a diagnosis. We tried everything. Then I had a neurostimulator implanted. That didn't help either. I also took cortisone for years. And then, in May 2022, it suddenly stopped. After that, I never needed oxygen or AscoTop 5 Nasal again. What I'm trying to say is, please never give up hope. Never. The doctors have been baffled ever since. But trust them.
I'm 55 years old and have suffered from cluster headaches since I was about 15. It started in school, right in the middle of class. I remember it vividly. I screamed, threw my head down, and shook it repeatedly. Then it got better. My attacks always come after eating, and then when I'm sitting or sleeping. I was told it's all psychological. At 49, I was prescribed oxygen after extensive testing of other triptans and painkillers. Nothing helped, or I had extreme side effects. So far, I only use oxygen when I'm near the cylinder, and I take Dronabinol THC preventively, which helps most of the time. However, I can't take a break; otherwise, all hell breaks loose.
I have face cluster headache for 15 years. Oxygen is a magic for me.
Keep calm and be strong .. all of us with you and we are stronger that any headache
Today just started my cluster for this winter.. I will be strong as always and for the next 6 weeks will fight and win
I (female, 57 years old) have suffered from cluster headaches for 38 years, initially episodically, and chronically since 2010. I've been dealing with headaches since childhood; migraines with aura started in elementary school, and then at 19, things changed: the migraines almost disappeared, but cluster headaches began. I've struggled through life, working full-time (which wasn't always easy with cluster headaches), then having two children (the cluster headaches completely disappeared during pregnancy, but returned as soon as the children were born), then working part-time, then just a few hours a day, and finally, I couldn't work at all anymore. In 2019, the only option left was to apply for disability benefits (which, by the way, are very low). The limitations imposed by this chronic illness are extreme, and to this day, I can't understand why the social welfare offices only ever grant these people a disability rating of 20 or 30. Is it just about money again? It is high time that this severe, extremely painful condition is enshrined in the principles of social care, because for severe trigeminal neuralgia, which occurs frequently, meaning several times a month, with intense pain, there is already a disability rating of 50-60. Chronic patients experience extremely painful attacks several times a day and receive a rating of 20 or 30? That's unacceptable and urgently needs to be publicized. Chronic cluster headache patients also depend on the help of caregivers, because they need assistance not only during attacks (administering medication, fetching and connecting oxygen cylinders, ordering and picking up medications from the pharmacy, scheduling doctor's appointments, emotional support, and so on), but essentially all the time. Because when you are confronted with such attacks daily (or, like me, every night), the risk is high that you will eventually reach your limit and/or no longer want to cope. You simply don't have the strength to manage your life anymore; even the smallest everyday tasks become impossible. Decades of pain attacks and medication take a toll on your physical and mental health. The side effects worsen with age; what you could easily handle at 20 is no longer possible at 57. For example, I can now only take one 240 mg Verapamit tablet a day (compared to three 240 mg tablets before), otherwise my whole body is filled with water. Imigran makes me extremely tired, and now that I'm older, it takes twice as long for my body to regain some semblance of clarity, meaning half the day is already gone. The sleep deprivation caused by the nighttime attacks practically promotes the development of other illnesses, because the body can't regenerate as well as healthy people with normal sleep patterns. As I said, living with chronic cluster headaches is very, very exhausting, life-limiting, and requires a great deal of support and understanding from family members. But: giving up is not an option, especially not when you have children. To all cluster headache patients: hang in there, hang in there, hang in there!!!
Hi everyone, I've had this chronic pain for about 25 years, and I never leave the house without my injections (Sumatriptan Inject, Tempil). The only thing that's really helped over all these years is Aimovig 140 mg exactly every four weeks, and if that's not enough, then Verapamil 2 x 240 mg max per day.
I avoid oxygen and nasal sprays because they only help to a limited extent; you have to take it within a few minutes, otherwise the medication takes too long to work. Try it out, I can only recommend it: high doses of Aimovig and Verapamil, and always have your injections with you. After a month pain-free, slowly taper off the Verapamil. All the best, I hope I could help.
@Jürgen Schönbier Imigran Nasal is TOO SLOW, I had the same problem at first. With Imigran injection, even the worst attack, even when it's already at its peak, is over within a maximum of 5 days. Sure, I'm just as groggy afterward as after an attack without medication. But it doesn't hurt :-)
I've had cluster headaches for 30 years, chronic for 15. Without Verapamil 2x240mg and Immigran injections (6mg) during acute attacks, I would have killed myself long ago. Get these medications prescribed; I know it's not as easy in Germany (I'm from Switzerland) as it is here. But don't give up! Since I started Verapamil and Immigran injections, my quality of life has improved by 1000%.
I've been affected for 20 years. I normally have 3-5 attacks every day, and when I'm in an episode, it's around 8-15 attacks!
Sometimes it's just awful, but you learn to cope and enjoy the pain-free time.
It started for me four years ago. At first, I could set my watch by it: three hours of pure agony, then my nose would clear and the pain would be gone. For the past year, it hasn't left me in peace, with three to eight attacks a day, each lasting three hours or more. I've lost control of myself in everyday life and avoid going out. On top of that, I have four children and two dogs. I don't even know what to do anymore. I find it helps to cool the affected area down to 0 degrees Celsius with an ice pack.
I've been suffering from this for about 15 years.
It starts with someone living inside my head, pounding relentlessly, harder and harder. Crying and screaming, I try to lie down in a dark and quiet room. Unfortunately, nothing helps. I get up, try to move, and it only gets worse, so I can't stop it. I hit my head with my own hands; I just want to be dead. In those moments, I behave like a wild animal.
I've been suffering from this for about 20 years. First, there was a break of 10 years, then another of 9. Now, since April, it's been my constant companion… up to 12 attacks a day! Affected is the right side: nose, eye, forehead, jaw, ear, and cheekbone. Medication: oxygen; Imigran Nasal.
If I manage to get oxygen right at the beginning, a full-blown attack can often be prevented. But if it's already underway, only Imigran, about 25 minutes later, helps to stop it. My longest attack this year, on Ascension Day morning, lasted a whopping 5 HOURS… it was HELL.
I'm really hoping that the switch will soon be turned off… hopefully.
To all those affected: stay strong!