Pain in the back of the head then in the eyes, in the neck… The doctors diagnosed Audrey with Arnold’s neuralgia. Except that the symptoms are more and more violent.
A few years ago, Audrey Aronica42 years old, had a good life. Beauticianshe had created her business, was bride and mother of two children who are now 16 and 11 years old. But everything fell apart in January 2018.”I started having pain in the back of my head that went up to the top of my head. After a week, I saw my GP who thought it was a migraine and Arnold’s neuralgia. But my health did not improve and every week I returned to see him. There The pain did not go away, and even got worse in the face. I did not react at all to Doliprane® and I started to have pain in my the eye and at the level of teeth. My whole face was taken hostage”explains Audrey.
“I have no solution other than cutting off your head.”
On February 24, 2018, she went to the Emergency Department. “The pain was so bad that I thought I was having a stroke. It hurt like I was banging my head against the wall and I was throwing up.“. Doctors then confirmed Arnold’s neuralgia, a neurological condition characterized by compression or inflammation of a cranial nerve, the greater occipital nerve, responsible for chronic pain localized in the neck and skull region. But the pain persists and her general practitioner refers Audrey to a neurologist who shows no empathy. “I will never forget this meeting because she said to me: “But madam, except for your head, everything is fine with you. I have no solution other than cutting it off.”. We were in shock with my husband and I left with a nice prescription for anti-epileptics, antidepressants, anxiolytics, painkillers, anti-everything”.
Audrey’s situation is getting worse
The young woman suffers more and more but refuses to give up. She consults two neurologists who make no diagnosis other than that of Arnold’s neuralgia. “I had violent symptoms on the face and eyes in particular and I could no longer work full days. I continued to research and identified a migraine surgeon located in Lausanne in Switzerland who followed me for two years.“
“The pain feels like your eye is being ripped out”
Treated using infiltrations of cortisone and botox then operated on, Audrey spent a fortune. “The nerve decompression undergone in Switzerland improved the pain on the left side. But three months later, the pain on the right got worse and I really experienced a descent into hell. My social life exploded and I closed my business because the pain was so unbearable. They feel like your eye is being gouged out. When I had a seizure, I couldn’t stop moving” explains Audrey who ends up consulting a specialist neurologist at the hospital in Lariboisière in Paris who finally diagnosed cluster headache! This neurological diseasethe cause of which is still unknown, manifests itself by painful attacks centered around the area around the eye and the temple. “He immediately sent me a prescription so that I could obtain oxygen at the highest flow rate, the standard treatment for this pathology which is described as suicide disease. At first I found it difficult to tolerate: I had already lost 10 kilos and my blood pressure sometimes dropped to 8. When you have cluster headaches, the painful crises sometimes occur 8 to 10 times during the day. However, we can only treat 2 to 4 attacks per day: we must therefore choose those that we will relieve. For my part, I opted for those occurring at night.”
More than 7000 euros of treatment, not reimbursed
Audrey then begins treatment based on anti-CGRP antibodies in the form of injections. “At the beginning, it was necessary to do two injections, at 250 euros per injection not reimbursed, for the attack phase. They gave results because the pain went on a scale of 10, from 10 to 5 which is huge for me. I took this treatment for 30 months and therefore spent more than 7000 euros.”
The mother was operated on again on December 5, 2023.I was asked a neurostimulator composed of electrodes implanted on the occipital nerves at the back of the head. These electrodes are connected by a cable that goes down my neck and passes over my chest, over my collarbone. It looks like a pacemaker.”
This intervention changed Audrey’s daily life. “It is a real relief even if it is difficult to bear a foreign body implanted in the body. My background pain is daily but my attacks are more bearable. I still take other medications like oxygen, anti-inflammatories, and painkillers, but I stopped taking triptan, a medication prescribed for seizures that caused my heart rate to increase significantly.“However, she is very tired and has agreed to draw a line under her previous life.”I really have removed from my mind the fact of returning to a normal life and to heal. Hopes hurt too much when they are doomed to failure. I don’t know if you can accept your illness, but you have to accept living with it. Finally, that’s what I did“, breathes Audrey who lives with permanent guilt.
“Unlike other people, my relationship withstood this ordeal”
“Unlike other people, my relationship withstood this ordeal. My husband has been amazing but I still feel guilty for disrupting our family life. We no longer live like we used to. We can no longer go to friends’ houses on Saturday evenings for example because, from 7 p.m., I sometimes have to go to bed because the neurostimulator cable is unpleasant. We have already set our vacation for summer next but I know they can be canceled at any time“, regrets Audrey who now has the status of disabled worker. The mother also decided to get involved in the Association Francophone pour Vaincre les Doleurs (AFVD). “I first became a volunteer for this association. I wasn’t looking for an association dedicated to my pathologies but to pain because ultimately the disease doesn’t matter. I met some great people there and they gave me a lot of help. I became its vice-president and patient expert. Since then, we have been mobilizing to raise awareness among the general public regarding the invisible disability. Last year we released a clip that showed the invisibility of pain and therefore disability “.
Because, regularly, Audrey is the victim of unpleasant remarks concerning her disability which is not visible. “A day, my 11 year old son stood up for me in a supermarket when an elderly person told me that I didn’t have to use the disabled lane. My child said to her: “But what right do you have to tell her that? You don’t know what my mom has.”
“Some disabilities are not visible, you should not judge before you know”
“In the association, we are mobilizing to explain that certain disabilities are not visible and that we should not judge before we know” insists Audrey, who insists on the importance of therapeutic patient education programs. The AFVD organizes zoom cafés to allow patients to find out about treatments but also to discuss with other people affected by the same issues. “Many patients who suffer a lot isolate themselves. However, if medical wandering is a reality, we should not hesitate to turn to associations that provide valuable help. Thanks to my family and my role in the association, I am doing better. Even though I have struggled with my image since the neurostimulator was placed, I remain positive and move forward with resilience. Because I am proof that, despite hardships, we can rebuild ourselves!”