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Cluster headaches are extraordinarily painful brief headaches which appear in groups, or clusters, in cycles which can last for weeks or years. It is believed that cluster headaches are among the most extreme pain which humans can experience, and the intense physical experience of cluster headaches has been known to drive patients to desperate measures. There is no cure for cluster headaches, although several medications can be used to treat patients during an attack, or to help prevent the headaches. In extreme cases, surgery may be offered.
Like many other chronic headaches, the trigger for cluster headaches is unknown. They often appear suddenly, without any type of warning, and can disappear within minutes or hours. It has been suggested that cluster headaches may be linked to specific foods, such as alcohol, caffeine, and chocolate, and a doctor may place a patient on an elimination diet as part of a treatment plan. They may also be related to the natural cycles of the body, since cluster headaches often appear on a regular and predictable basis.
The mechanism of cluster headaches is understood. They are a type of vascular headache, meaning that the symptoms are caused by the dilation of blood vessels. The blood vessels put pressure on the trigeminal nerve, causing intense and sharp pain. Patients have described the headaches as resembling hot pokers being forced into the eye or skull. Generally, cluster headaches attack only one side of the face, and are accompanied by symptoms such as a runny nose or drooping eyelid.
A patient of any age can experience the onset of cluster headaches, although most patients are between 20 and 40. The headaches start with two to three attacks each day for a period of four to eight weeks, and then the cluster headaches usually stop for around a year. These episodic cluster headaches will continue to run in cycles of attack and remission. Chronic cluster headaches appear with no remission, and can be very debilitating. Sometimes, a period of remission can last for decades, and in some cases, cluster headaches disappear entirely eventually.
The pain of cluster headaches can interfere with sleep, mental health, and daily life. In rare instances, patients have been known to commit suicide or self harm in an attempt to deal with the pain. Doctors keep a close eye on their patients to prevent this from happening, and a patient who experiences unbearable cluster headaches may be offered surgery on the nerve to attempt to reduce the pain. Fortunately, cluster headaches are extremely rare, occurring in approximately 69 out of every 100,000 people.
I have suffered with these headaches for years starting in 1984, then nothing until 1994. They only lasted for a couple of weeks, but I thought I was going to die. My GP thought I was exaggerating the severity of the pain. I was banging my head on the wall, the floor, the radiator, etc., for weeks, but all he gave me was paracetamol.
Then in 2006, the headaches came back. I had a new GP by this time, but the same symptoms again. He said I was depressed or it was a tension headache. I pointed to the whole of the right side of my face along my temple area towards my eye and down the jaw area, and
the GP then said, “Oh, you have an abscess. You need to see your dentist.” He couldn't get me out of the surgery fast enough. He was fed up seeing me every day, so I went to the dentist and told him about pain. He said nothing was wrong with my teeth on that side, but I begged him to pull them out any way, just in case the GP was right.
I soon found out when the anesthetic wore off that he was wrong and I was left with no teeth on that side. I wish I had listened to the dentist. I was still left with pain all night.
I can’t go on. I am completely and utterly exhausted, and thinking of ending it all. Only the crying of my daughter brings me back.
I called my brother and told him to get me to a hospital, and within an hour, I was seen by a neurologist, was told I had cluster headaches and that I was in a cluster stage. I was given medication steroids and sumatriptans, which worked wonders within a few days, but got some relief in hours from intravenous drip.
Why did my GP let me suffer for weeks with these symptoms? My eye even went all bloodshot and he said it was nothing to worry about. I had asked and begged him to send me to the hospital on several occasions when I went to see him.
When I was discharged and had to see him for preventative meds for my headaches, he said he never heard of cluster headaches. Don't they have to keep up to date with new illnesses that are diagnosed since they did their training? If not, they should be made to at yearly intervals like others.
Since that time, my headaches have gone from episodic to chronic and I have had short breaks between headaches. I had an MRI brain scan in 2011 after developing some symptoms of weakness, pins and needles, swallowing, other headaches, balance and coordination confusion and memory problems. It showed some evidence of small vessel disease, and again my GP said it was nothing to worry about and normal for someone of my age, which was 50.
I went about my business, but my symptoms got worse. I had my annual eye test and they picked something up and referred me to an eye clinic, and after some tests, sent me for am MRI scan this month. I have just been told I have a Cavervova. I’m not really sure exactly what it is, except it has something to do with blood vessels and that it can bleed, but it’s not cancerous. One described it as a benign tumor, but I need to ask my neurologist next month at my appointment. If anyone else has similar/anything else, it would be great to hear from you.
I suffer from these 'headaches', and headache is too mild a term to describe them. If you have been diagnosed with them the key is to get early and aggressive treatment to try and minimize the severity of the attacks. Effective treatments can include pure oxygen inhalation at the onset of an attack (by prescription only and with appropriate training)), application of cool, not cold, cloths to the affected side of the face.
Steroidal treatment, inject-able Imitrex, and various prescription painkillers may be prescribed, with the Imitrex being used for onset of attacks and steroids such as Prednisone used as a prophylactic during the non remission period.
Painkillers are not effective at the beginning of an attack, as they work
too slowly to afford any relief due to the rapid escalation of the pain, but they might be useful just before the attack cycle begins. I use prescribed oxycodone before I sleep- while it won't stop the attack at night, it helps manage the pain a bit.
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