Sometime around Jan. 2013, shortly after I was married to my wife, I developed what felt like a severe sinus headache- horrible pain behind my left eye… this was not all that unusual, sinus infections are a repeated health issue I had had for many years- it was a lot more painful than usual, but I just assumed it was an especially bad infection. I went to the doctor- who had treated me a few times already for sinus infections… he gave me the usual antibiotics and I took them- expecting that I would be cured in a few days.
Instead the pain got worse- far far worse… there was a constant feeling like my left eye socket was being abraded by sandpaper behind my eyeball, and this would often flare up and explode into a headache like nothing I had experienced before… I felt like my left eye was going to pop out- at the same time it felt like a searing hot knife was slicing the left side of my face and head while an ice pick was driven into my temple… the full blown pain could surge at any time but it fell into a pattern where I could expect it to pop up around 3am when I was asleep. The pain was insane- so intense I would forget to breathe. I would even stop breathing in hopes that I could just pass out and be unconscious through the episode…
I saw the doctor again, several times- got new antibiotics- when those failed he did an endoscopy up my nose and saw no signs of infection…
So then I ended up getting CT scans and MRI- looking for signs of brain tumors or other damage- nothing was apparent. This dragged on for months – I was a wreck- about 2 nights out of 3 I would awake in agony that would last an hour or two… I was scared of falling asleep… I was severely sleep deprived and also working one of the most intense periods of my career- it was so bad I was constantly falling asleep during meetings.
Finally I went to see a neurologist- at this time I had done a little research and thought I had an idea what the problem was- so I mentioned that my symptoms seemed to be classic symptoms of cluster headaches… he was skeptical since they ‘are so rare’ but agreed that my symptoms matched… He said that breathing pure oxygen at the onset could help, and there was an injection (Imitrex I think?) you could self administer that could stop the headache if you did it at the first signs- neither of these would help me much since the most severe episodes hit around 3am waking me up from sleep with a full blown attack… suggested I try another drug- a blood pressure medicine that has an odd side effect of completely stopping cluster headaches in SOME people.
So he wrote me a prescription for oxygen and the injection, and also for a dirt cheap old blood pressure medication called Verapamil… he suggested I try the verapamil first… I went straight to the pharmacy and picked it up and took a dose in the car.
That night I got the sandpapery feel behind my left eye, and the pain that usually preceded the severe headaches- but much to my relief it faded away… and after that I never had the headaches again- ever. I sometimes- less than once a year- get the sick sensations that usually preceded the attacks- but it passes and never goes beyond that.
Verapamil does not work for everyone- in fact there are people that find no treatment that works (though supposedly ‘magic’ mushrooms can be highly effective)… Cluster Headaches are also known as ‘suicide headaches’ because it often drives people to suicide- I didn’t get to that point, thankfully- but I can EASILY see how people could be driven to that extreme. The pain is like NOTHING I have ever experienced, migraines, broken bones all pale in comparison. Add to that the sleep deprivation and the harm it could cause to employment and relationships and you could easily see suicide as the only escape. Had it gone on for many more months I don’t know if I would still be here.
Anyway- I mention it because I have met other people that have developed chronic cluster headaches with a frequency that makes me think it is not as rare as the neurologist seemed to think… it took a huge toll on my quality of life, my health, and even with insurance it cost me considerable money before it was finally recognized for what it was. So if you develop similar symptoms (and mine came out of the blue at ~age 42) see a neurologist and tell them your suspicions immediately- it took me months to get the appropriate treatment- for much of that time I assumed it was a severe sinus infection, and in the end all it took was a CHEAP generic pill to turn the headaches off like a switch.