What started with a ‘simple’ toothache, became Lot’s worst nightmare: facial pain. She has been suffering from this since 2020 and has been trying to live with the severe condition for almost two years. She talks about the impact the facial pain has on her work, family and social life. Will you read with us?
“I am Lot, 35 years old and mother of three children”, Lot tells me when I ask if she would like to introduce herself. “I have been suffering from facial pain since 2020. I would like to talk about it because I think it is important that attention is paid to the subject. Now that I am struggling with this myself, I know how little is actually known about it and how few people understand me”, Lot tells her story.
Hard ice balls
“If I try to explain what facial pain is, I usually compare it to very hard ice balls that are thrown in your face at high speed. And not once a day, but dozens to sometimes hundreds of times. The attacks hurt so much that I can no longer work, can no longer drive and hardly have a social life.”
Toothache
In the beginning of 2020, Lot experiences pain around her jaw for the first time. “I thought it was a toothache. ‘I hope I don’t need a root canal,’ I said to my husband before I went to the dentist. Now I think: I would kill for an inflamed dental nerve. My dentist took pictures and examined my teeth thoroughly. His conclusion: he couldn’t find anything crazy.” Initially, Lot is happy and hopes that it will pass on its own. “Nevertheless, my dentist advised me to make an appointment with the GP if it lasted longer. I have done that.”
facial pain
After a period of many hospital visits and examinations, Lot is told that she suffers from facial pain. “It has had a huge impact on my life. I take medication, but the pain never completely goes away. On a good day I have ‘only’ ten attacks of pain. On a bad day, sometimes as many as a hundred. As a result, I have not been able to work for years and I receive a WIA benefit. I mostly spend my days indoors. I help get the kids ready, my husband takes them to school. I lie on the couch a lot and sometimes take a walk. On a bad day, I prefer to lie in bed with the curtains drawn.”
No longer independent
Lot no longer drives or cycles either. “An attack always comes unexpectedly. This is dangerous in traffic. I used to be independent, I had a nice job and I was a happy mother. I am currently on medication and that makes the pain a lot more bearable. Yet my life in no way resembles my life before. Various operations are possible and together with the neurologist we are investigating whether this can help me. Unfortunately, this is no guarantee of success, but it does give me hope.”
Social life
Lot notices that her social life has also changed enormously. “I never hear anything from my old colleagues. I even got kicked out of the group app. Mothers in the schoolyard do not dare to speak to me and are shocked when I have an attack. My marriage is also suffering. Sex is the last thing on my mind and the last time my husband and I went away for a weekend just the two of us was almost four years ago. I know he finds this difficult and somehow I would understand if he puts an end to our marriage one day. As sad as it is, I am no longer the Lot I once was.”
On holiday
Lot still feels bad about her children. “Other mothers help in the classroom, join sports clubs and taxi drivers take their kids all over the city. Only when this is no longer possible do you notice how nice those moments were. I miss my children so much and I hate that I miss whole parts of their childhood. Next summer we will be going on holiday again for the first time, just in the Netherlands. I can already look forward to that. We’ll see how it goes. In any case, I am looking forward to the time with my husband and children.”
Questions? For reliable medical information, we refer you to Thuisarts.nl.
Image: Unsplash+
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