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. And for 12 years. 5 years were needed for a diagnosis. Tried everything. Then a neuro stimulator was implanted to me. Nothing helped either. Also consumed cortisone for years. And then: May 2022 suddenly stopped. After that, never again oxygen or ascotope 5 nasal. I want to tell you, please never give up hope. Never. Since then, the doctors have also been at a loss. But trust them.
I am 55 years old and have been suffering from clusters since I was around 15 years old. It started at school in the middle of class. I can still remember it well. I screamed and threw my head down and shook my head again and again. Then things got better. For me, the attacks always come after eating and then while sitting or sleeping. I was told it was all psychological. At the age of 49, I received oxygen after a long period of testing other triptans and painkillers. Nothing helped or I had extreme NW. So far I only take oxygen when I'm near the bottle and Dronabinol THC as a preventive measure, which mostly helps. However, I'm not allowed to take a break, then 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 (57 years old) have been suffering from clusters for 38 years, initially episodically and chronically since 2010. I've been dealing with headaches since I was a child. I started having migraines with aura when I was in elementary school, then when I was 19 the turning point happened: the migraines were almost gone, but clusters started. I struggled through my life, first working full-time (it wasn't always easy with the cluster), then having two children (by the way, the cluster was completely gone during the pregnancy; as soon as the child was born, it was back), then worked part-time, then hourly and finally nothing worked anymore, all that was left in 2019 was to apply for disability pension (which, by the way, is very little). The restrictions with this chronic illness are extreme and to this day I still don't understand why the pension offices only ever grant these people a GdB of 20 or 30. Is it just about money again? It is high time that this serious, extremely painful disease was anchored in the principles of medical care, because for severe trigeminal neuralgia, which occurs frequently, i.e. several times a month with severe pain, there is already a GdB of 50 - 60. Chronic patients have extreme pain several times a day painful attacks and get 20 or 30? This is not possible and must be made public urgently. Chronic cluster patients are also dependent on the help of caregivers, because they need help not only during the attacks (administering medication, getting and connecting an oxygen cylinder, ordering medication and getting it from the pharmacy, making doctor's appointments, emotional support, etc.) but actually always . Because if you are confronted with such attacks every day (or, like me, every night), there is a great risk that at some point you will no longer be able and/or want to. You simply no longer have the strength to carry on with your life, the smallest everyday actions are no longer possible, because the body is physically and mentally degrading more and more as a result of decades of pain attacks and medication. The side effects get worse with age, meaning that what you could easily handle at 20 is no longer possible at 57. For example, I can only take 1 Verapamit 240 mg daily (compared to 3 x 240 mg) because otherwise my whole body is full of water. Imigran makes you extremely tired, now that I'm older my body needs twice as long to be able to think fairly clearly again, which means for me that half the day is already over. The sleep deprivation caused by the nocturnal attacks actually promotes the development of further illnesses, because the body cannot regenerate as well as healthy people with normal sleep patterns. As I said, living with a chronic cluster is very, very stressful, life-limiting and requires a lot of help and understanding from family members. But: giving up is not an option, especially not if you have children. To all cluster patients: hang in there, hang in there, hang in there!!!
Hello everyone, I've had the crap chronically for about 25 years, and I don't leave the house without my pens (Sumatriptan Inject, Tempil). The only thing that has really helped over the years is Aimovig 140 mg exactly every 4 weeks and if that's not enough then Verapamil 2x 240 mg max. per day.
I avoid oxygen and the nasal stories because they only help to a limited extent, which means you have to take it within a few minutes otherwise the active ingredient comes on too slowly and it doesn't help. Try it out, I can only recommend it, Aimovig and Verapamil in high doses and always have the pens with you, after a month of pain-free, slowly stop using Verapamil again, all the best, I hope I could help
@ Jürgen Schönbier Imigran Nasal is TOO SLOW I had it too. With Imigran injection, the strongest attack for me goes away within a maximum of 5, even if it is already at its peak. Of course, I'm just as groggy afterwards as I am after a seizure without medication. But it doesn't hurt :-)
Cluster for 30 years, chronic for 15 years. Without Verapamil 2x240mg and Immigran Syringe 6mg in acute attacks, I would have killed myself long ago. Get the medication prescribed, I know that in Germany (I'm from CH) it's not as easy as it is here. But don't give up! Since I've had Verapamil and Imigran injections, my quality of life has increased by 1000%.
I have been affected for 20 years. I normally have 3-5 attacks every day and when I'm in an episode I have around 8-15 attacks!
Sometimes it's just terrible but you learn to deal with it and enjoy the pain-free time.
For me it started 4 years ago. At the beginning I could set the clock accordingly, always 3 hours of agony and then my nose opened and the pain was gone. It hasn't left me alone for a year now, with between 3 and 8 attacks lasting 3+ hours each day. I no longer have control over myself in everyday life and avoid going out. There are also 4 children and two dogs. I don't even know how to continue. I think it helps if you cool the affected area down to 0 degrees with a cold pack.
I have suffered from this for about 15 years.
It starts as someone lives in my head, beats more and more without a break, crying, screaming, I try to lie down in the dark and quiet room. Unfortunately it doesn't help, I stop trying to move it gets worse, so I can't stop it, I hit my head with my own hands, I would like to be dead. At the moment I behave like a wild animal.
I've been suffering from it for about 20 years.
First there was a break of 10 and then 9 years. Now he has been my constant companion since April... up to 12 attacks a day! Affected right side: nose, eye, forehead, jaw, ear and cheekbone. Medication: oxygen; Imigran nasal. If I manage to get oxygen right from the start, a severe attack can often be prevented.
But if this is already underway, only Imigran can help to turn everything off about 25 minutes late. My longest “push” this year on Ascension Day early in the morning was a whopping over 5 HOURS… it was HELL. I strongly hope that the “switch” will soon be back to “OFF”… hopefully.
To everyone affected: stay strong!