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Q. I have suffered with "The Monster" for more than 20 years. That's what I call my headaches. It took 5 years and trips to 5 different teaching hospitals to get a decent diagnosis. These are the most excruciating pains you can get, like a red-hot poker in your eye socket.
For most of the years, I'd inject Imitrex and the pain would leave eventually. Imitrex is a drug I'd rather not take unless there is no other choice.
One day it caught up with me. I'd had seven attacks that day and I called my doctor and said unless I could get help, today would be my last. I sent the same message to the Headache Clinic in Jefferson Hospital in Philadelphia. They apparently took me seriously. The next day I had an appointment with Dr. Stephen Silberstein, the chief headache guru.
I was diagnosed with cluster headaches and prescribed verapamil for prevention and oxygen with a re-breather mask for treatment.
Amazingly, the first time I used the oxygen the headache was gone in several minutes. It was the first real relief I had gotten in years. That was 10 years ago. What I almost killed myself over has now become nothing more than a nuisance that occasionally wakes me up at night with bad pain.
I am never without my oxygen. I keep a portable tank with me wherever I go. Insurance doesn't cover it, but I bought my own regulator and I rent a D tank of oxygen for about $10.00. It lasts me about 20 treatments.
The symptoms are so unique that cluster headache shouldn't be mistaken for anything else, but I was diagnosed at various times with trigeminal neuralgia, sinus condition, and (best of all) PSYCHOSOMATIC pain. Please educate the medical profession so more people don't end up suicides.
A. Your story really points out the importance of a correct diagnosis. Patients and doctors need to work together to get that right so the proper treatment can be found.
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I to have suffered from the "monster" since 1996. My attacks were every other year in the summer months for 3-4 weeks and usually occurred 1 hour after I went to bed lasting 3-4 hours. I have seen many doctors and specialists over the years and taken many tests including an MRI and CAT scan with no solution to the problem.
Finally, in 2006 I took it upon myself to research the subject and I found several clinics doing experimental treatments on this issue. One used inject-able pain killers in the eye, the second used oxygen therapy as you suggested, the third was drilling holes in the skull, and the fourth used muscle relaxers. When my attacks began in 2006 I decided to use an over the counter muscle relaxer. It immediately minimized and eventually stopped the pain. I carry these mucsel relaxers wherever I go and at the first sign of the pain (which you can recognize quickly) I take one. I have not had an attack since.
It appears in my case the attack seems to be a result of pressure on the supraorbital nerve. This supra orbital nerve comes from the semilunar Ganglion (nerve junction box) through the supra orbital foramen (small opening in the skull above the eye) and serves the upper eyelid, the conjunctiva (tear duct) the frontal sinus, and the skin of the forehead.
My attacks are caused by muscle tension in that region which constrict the supra orbital nerve at the supreorbital foramen and cause the severe pain. The muscle relaxers relieve the constriction and thus the pain subsides. This theory is substantiated because during an attack my eyelid will droop, my eye will become dry, my frontal sinus will dry up and my skin on my forehead will become numb.
The reason for the nerve constriction can be due to sinus pressure, or an infection, or a blow to the eye but mine seems to be a tightening of the mussels around the eye most probably due to squinting in the bright summer sun. I now wear wrap around sun glasses and keep my muscle relaxer handy at all times.
What is the "over the counter muscle relaxer" that you use?
Thanks in advance for your help.