Cluster headaches: The lesser known, often misdiagnosed head pain

Hi, my name is John, I am 24 years old, I have been dealing with this condition for about6 years now. While I applaud that you are bringing to light the misdiagnosis that occur probably on a daily basis, which also happened to me for about 2 years before I saw a specialist who had the right diagnosis. I have no idea where you got the idea that some “simply grow out of them” I am on many different support groups which I recommend to anyone with a debilitating condition as it was almost as helpful as the most knowledgable neurologist I have seen. While your article very informative we differ on key points. I think a little bit more research into the subject will show you that this condition stay with most of its patients

After living with frequent debilitating headaches for many years and seeking help from medical doctors with all kinds of diagnosis with no results, I finally found out from a chiropractor that I had some disc alignment problems at the base of my skull that was pinching nerves whenever there was swelling in my neck and shoulders. Eventually chiropractic manipulations resoved my headaches. Now I occasionally need an anti-imflammatory pain reliever to deal with less frequent headhaches. I no longer deal with days lost from debilitating pain.

I nhave nsuffered from coluster headaches since I was 42, I am now 70. The onlyn relief is the use of oxygen. The clusters are two times a year for about two months each and come every day at the same time and come and go for three hours.

Hello, and thank you for bringing more attention to cluster headaches, and the frequency of errors in diagnosis of this condition. I agree with John that it is unlikely that people will outgrow this condition. I am nearly 64 years old, and have been suffering from cluster headaches for most of my adult life (certainly for at least 35 to 40 years, to the best of my recollection). I stopped using all tobacco products more than 33 years ago, and I drink alcohol only moderately, often going several months without even a taste of beer or wine … and virtually no hard liquor at all. I really have not found that alcohol consumption triggers these cluster headaches in me. For me, it seems that stress, lack of proper sleep, bright lights (particularly flashing lights and bright headlights in fog or at nighttime) are far more often the triggers of my cluster headaches.

Please keep up the good work in making more people aware of these unique and very dabilitating headaches. Hopefully, more research into the condition will help in identifying effective treatment options. In my case, ice and massage therapies have been somewhat successful in shortening the duration and reducing the pain of these cluster headaches that I experience.

A reply to John Robinson question “simply grow out of them.” I suffered with cluster headaches for many years, some lasting on and off for 2 weeks. After “change of life,” I never had a headache again. Now I realize that this would not apply to men, but there is the possibility of growing out of them.

I’ve been dealing with migrain headaches since 1964. I trigger 8 of the 9 kinds. The only type I have not gotten is cluster. The longest migrain laster over 90 days, at an intensity of 8-10 for the whole time. I’ve learned that a consistent routine each day, avoidance of food or inhalent triggers is better than most meds. Most meds were worst than the headaches themselves. Cold pressed olive oil is the best treatment. Up until 3 years ago, I considered a good year to have 50 out of 365 days, without a migrain. I have fewer than 50 days a year with migrains now. The pain level has dropped below 6, with 10 being the max. I’ve never grown out of them. I have learned have to control them better, mostly through a friend whose son is doing research on the subject. I keep in touch with people I know who get them, but we have no support groups where I live.

Probably one of the poorest written articles regarding cluster headaches I’ve ever read. As a chronic cluster headache patient I’ve had many discussions with neurologists who are intrigued by the patient groups proclivity towards nicotine habits in the sense that nicotine is a known vaso-constricter. Which would be favorable in the case of a cluster headache patient. This is very compelling as a research angle, not as a blaming mechanism or as a label to marginalize the patient group. I’m very active in Advocacy regarding this disorder. In April, I’ll be returning to our Capital in Washington DC for my 2nd year. A team of 63 went last year. The event was sponsored by “The Alliance for Headache Disorders Advocacy”. One of the specific “asks” of congress is for funding to end this type of marginalization. The disorder is neurological and known as The Suicide Headache. The pain is not something that ends when a patient gives up smoking. It’s a life long disorder with a 200% higher suicidality. Please, understand I mean you no disrespect, however, the perception of cluster headaches as you have written is so far from the reality and the truth that I had to respond. I was 15 when I had my first attack. I know many who were even younger.

I have been a chronic Cluster Headache sufferer for 37 years and have studied CH for a great while and am one of the leading supporters on a face book support group. I have finally achieved a CH free status by using the vitamin D3 anti-inflammatory regimen that is on Cluster headaches dot com….I have been CH free for 97 days now. Your statement about CH saying that they can happen up to 8 times a day is incorrect and many sufferers can have them 10 to 25 times a day as was also my case… please correct this statement…. Sincerely ……John Fletcher

I also wanted to add that Cluster Headaches is the most painful condition known to medical science…More so than broken or shattered bones, child birth without anesthetic, having a limb amputated without anesthetic and they have been given the name “Suicide Headaches” because of the incredible horrific pain involved…Please make a note of it…..

I don’t mean to hijack thread but i do need to add a few more comments because this article is so far off base with the incredible understatement of the severity of Cluster headaches as Cindy has stated and i do totally agree with her. The sveverity of A cluster can be told to others but ununt of pain involved as suffering mostly 7 to for a CH an 8 would put any non sufferer in the emergency room with the thought that you are dying. A 10 for a CHer puts us on the floor screaming at the top of our lungs and banging our heads against anything we can find …The wall, a door knob, the telephone receiver etc…For me it’s like having a hunting knife buried deep in my right eye socket with a 5 lb hand held sledge hammer pounding on it in and out (Literally) Water pouring out of my eye and total insanity surrounding my brain sometimes just rolling around on the floor just screaming for it to stop. I have had a few that i have simply passed out from the insane horrific pain. But if you have never had this incredibly painful disorder there is no way to grasp the severity of this pain. So if you know a CH sufferer please be understanding and helpful if possible cause they didn’t name them suicide headaches for nothing…..Johnny