“For eleven years, the disease (vascular algia of the face) has taken my face hostage. Because each crisis is a torture, where I have the triple impression that someone is pushing a knife behind my eye and that they are desperate to enucleate it, while they pull out my upper teeth.The pain invades sometimes the left part of my face, sometimes the right. Its intensity is twenty times greater than that of a delivery 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 guardian angel because I was afraid of doing something stupid and jumping out of the window. One night, it was a final look in the direction of my children’s bed, which I had before I got sick, that stopped me. At 3 a.m. I phoned the Association against vascular algia of the face. They answered me, it saved me. Call the Samu? They couldn’t relieve me more, I have all the crisis treatments, but they don’t always work, because my disease is chronic.
Five years of diagnostic wandering
I was hospitalized for eight months on 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. It was suggested to me that my case was psychiatric, as I have few physical signs during the attacks – droopy and swollen eyelid, watery eye, runny nose.
One of the psychologists decreed that it came from the trauma of the birth of my daughter, whereas it is one of the most beautiful days of my life! I was prescribed transcranial magnetic stimulation, which gave me a monumental seizure. My teeth were also suspected: one was pulled out, others were devitalized and my jaw was opened five times to cut all the roots of the presumed culprit premolars and molars. As my pain persisted, the dentists refused to replace my torn premolar, which was still visible. For years, I had to live with a hole…
A background treatment helps me
Six years ago, the diagnosis was finally made. And, in 2013 and then in 2014, I had electrodes implanted in my brain, because I was insufficiently responding to medication and I was having up to twelve seizures daily. I went for it, without even thinking about being afraid of these heavy interventions, lasting 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 “stereo” noise, which is one of the triggering factors, like the white light of the neon lights, unfortunately frequent in the meeting room.
After a year dedicated to electrode adjustment, I rediscovered what it meant to live without suffering. Wonderful. So extraordinary that I could hardly believe it, so I remained cautious. I savored life, but without excess. Two years ago, I was finally able to go to the cinema for the first time with my ten and a half year old daughter.
Seizures twice a day
Today, I also have heavy background medication on a daily basis – two antiepileptics and lithium, used as analgesics, and a specific painkiller – but I rarely have a full week of respite. Right now, I’m having two seizures a day.
Unpredictable, they can last from 30 minutes to 4 hours without treatment.. From the beginning, I inhale oxygen for 20 to 30 minutes to interrupt them. Suffice to say that I never part with my bottle. I also give myself subcutaneous injections of sumatriptan, a migraine medication. I also use a nasal spray distilling this molecule. Luckily, I’m a business manager, so I can take care of myself in the office. This 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 those close to me. I feel very surrounded, very loved. The desire to give back what is given to me drives me. I try to move things forward concerning the disease within the French association, which I chair, and at European level. I have great hope: a new medicine which, at the rate of two monthly injections, will stop the seizures. 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 pain in the sword of Damocles. Live fully. Simply.
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