“For eleven years, the disease (cluster headache) has taken my face hostage. Because each crisis is a torture, where I have the triple impression that I am being stuck a knife behind my eye and that they try hard to enucleate it, while they pull out my upper teeth.The pain sometimes invades the left part of my face, sometimes the right. Its intensity is twenty times greater than that of a childbirth without an epidural. The birth of my son, I could relive it thirty times a day, it seems sweet to me now. This pain is so terrible that we have suicidal thoughts, so much we are ready to do anything to stop suffering. One day, in the absence of my companion, I called a friend to come and play the guardian angels because I was afraid of doing something stupid and jumping out the window. One night, it was a final glance in the direction of my children’s bed, which I had before I got sick, that stopped me. At 3 a.m. I called Association against cluster headache. I was told, it saved me. Call Samu? I could not be relieved more, I have all the crisis treatments, but they do not always work, because my disease is chronic.
Five years of diagnostic wandering
I was hospitalized for eight months under an infusion of sedatives, ineffective on the pain. I banged my head against the walls screaming … Meanwhile, my daughter was taking her first steps … without me. I was given to understand that my case was psychiatric, as I have few physical signs during seizures – eyelid drooping and swelling, watery eye, runny nose.
One of the psychologists said it was from the trauma of my daughter’s birth, which is one of the happiest days of my life! I was prescribed transcranial magnetic stimulation, which caused me a monumental seizure. My teeth were also suspected: one was then pulled out of me, devitalized others and one opened my jaw five times to cut all the roots of premolars and molars supposed to be guilty. As my pain persisted, the dentists refused to replace my torn premolar, yet visible. For years, I had to live with a hole …
A basic treatment helps me
Six years ago, the diagnosis was finally made. And, in 2013 and again in 2014, I was implanted with electrodes in my brain, because I was insufficiently responding to the drugs and I had up to twelve daily seizures. I went for it, without even thinking of being afraid of these heavy interventions, of more than ten hours, because the disease prevented me from living. Going to the park or to the restaurant was impossible for me, because of the noise “in stereo”, which is one of the triggering factors, like the white light of neons, unfortunately frequent in meeting rooms.
After a year of adjusting the electrodes, I rediscovered what it means to live without suffering. Marvellous. So extraordinary that I could hardly believe it, so I stayed cautious. I savored life, but without excess. Two years ago, I was finally able to go to the movies for the first time with my ten-and-a-half-year-old daughter.
Seizures twice a day
Today, I also have heavy daily drug therapy – two antiepileptics and lithium, used as analgesics, and a specific painkiller – but I rarely get a full week’s respite. At the moment, I have two seizures a day.
Unpredictable, they can last from 30 minutes to 4 hours without treatment. From the start, I inhale oxygen for 20 to 30 minutes to interrupt them. Suffice to say that I never part with my bottle. I also get subcutaneous injections of sumatriptan, a medicine for migraine. I also use a nasal spray distilling this molecule. Luckily, I am a business owner, so I can take care of myself in the office. It is essential, because my work keeps me at the heart of life and allows me to escape illness.
Feeling loved made me strong
My strength also comes from my relatives. I feel very surrounded, very loved. The desire to give back what I am given carries me. I try to get things done concerning the disease within the French association, which I chair, and at the European level. I have great hope: a new drug which, at the rate of two monthly injections, stops the attacks. It is authorized in Switzerland and Great Britain, but its cost of € 2,600 per month forces me to wait for its marketing authorization in France. I already dream of attending a rock concert, in the crowd, without the sword pain of Damocles. Live fully. Simply.
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