Trigeminal neuralgia: "The pain on a scale from 0 to 10 was a 10!"

Hello kattie.pa78, thank you for agreeing to share your story with us on Carenity.

First of all, could you tell us more about yourself?

I am a political scientist, 30 years old, single and have no children. I was diagnosed with trigeminal neuralgia (TN) at the age of 27.

My hobbies include theatre, sport, reading, animal welfare, cooking and baking. I am an active person; I have always had plenty of hobbies. My TN prevents me from doing some of them, but I still have many others!

What were the symptoms that led you to seek help for trigeminal neuralgia? How long did it take to make a diagnosis? How many doctors did you have to see? 

It started stealthily in the spring of 2017, with a toothache. However, this pain was neither consistent nor all day long. At first I didn't think much of it, but within a short time the pain started to deteriorate rapidly. It was a severe pain that I couldn't pinpoint and was very deep. Over the next few months, the pain spread throughout my jaw and became increasingly severe. The dentists and specialists I consulted continued to assure me that everything was normal with my teeth. It was a dentist who warned me that it could be trigeminal neuralgia, and following his suggestion, I made an appointment with a neurologist who confirmed the diagnosis after undergoing several tests (MRI, CT) that ruled out multiple sclerosis and tumour. Finally, in September 2017, I was diagnosed with trigeminal neuralgia.

Can you tell us in more detail about the symptoms of the disorder and its origins?

The pain was distinctive in its intensity. It felt like it was coming from deep inside my head, I felt pressure and a sharp pain. The intervals between the episodes became shorter, the pain got worse and in the end it didn't go away at all in fact.

I couldn't sleep or eat, I lost 15 kilos. During this time (about 10 months) I saw several doctors, around 5. The doctors gradually prescribed me different drugs, each more powerful than the last, so that I could bear the pain. They even suggested gamma knife radiotherapy. The pain made it impossible for me to do anything, I would just have to stay in bed. On a scale of 0 to 10, the pain was a 10.

The high dose of medication led to side effects that made it impossible to live normally. I was extremely tired but I couldn't sleep, I had muscle cramps, headache and stomach ache, dizziness, apathy...

As for the origin of the disorder, it's very hard to know. Even doctors don't know exactly: trigeminal neuralgia is often referred to as an enigma. However, there are a few factors that influence the origin or development of the disorder: long-term stress, psychological health, lifestyle, an accident or injury to the head, a dental procedure...

Did you feel supported during the period when the diagnosis was not yet made? How did you feel when you received the diagnosis?

I felt very awful before the diagnosis was made. Until they gave me the name of the condition during my consultation, I didn't know what trigeminal neuralgia was. The uncertainty lasted for 6 months, but I was relieved when I got the diagnosis. Having a name for your pain and an official diagnosis allows you get to work on understanding and working on your condition.

I got a lot of support from my family, I am very grateful to them. I wouldn't have been able to get through this period without their support, not only mentally but also financially, as I wasn't able to work for two and a half years. 

As for the neurologists, I didn't feel supported at all. Unfortunately, only a few of them are really experts in this disorder and know how to really listen to their patients and help them. I often found myself in a situation where the doctor didn't listen to me, didn't know what to do and just prescribed medication. Some told me that trigeminal neuralgia was not curable, but they did not give me any advice on how to live with it. One doctor even disputed the diagnosis. So the treatments were complicated to follow. 

Does the disorder have an impact on your life today?

It has been more than three years since the diagnosis and I can say that my health has improved by 90%. I can considerably reduce the amount of medication I take, return to normal life, with some limitations of course. I've read in places that trigeminal neuralgia can be caused by exposure cold in the past. In retrospect, I realised that I had worked in an open office with extremely high air conditioning. 

The trigeminal nerve is very sensitive, the pain can be triggered by brushing your teeth or chewing, so it is very important to avoid eating solid food. My pain is mainly related to the cold - air conditioning, wind, draughts, etc. It is extremely important for me to wear a hat or headband (even at night) to protect my temples where the main node of the trigeminal nerve is located. Spring and summer are quite difficult times for me because we have air conditioning in every building, supermarket, etc. So I have to avoid any kind of cold, including cold food and drinks, because they trigger intense pain immediately. On the flip side, warmth is recommended (staying in the sun, consuming warm food and drinks, using an infrared heat lamp, etc.).

Spinal pain also affects the trigeminal nerve.

Other situations are problematic such as stress, fatigue and various kinds of noise: going to a busy restaurant, cinema, concert or theatre is almost impossible.

The same constraints apply to air travel because of the air conditioning and pressure.

As this is a long-term illness, I have to always be careful to follow the measures I described. Trigeminal neuralgia has an impact on my professional, as well as private and social life. I still get acupuncture and take medication.

You have been treated with acupuncture. Who advised you to do this? What did it do for your care?

A patient who was seeing the same dentist as me and who also has trigeminal neuralgia recommended acupuncture to me. I felt the first improvements after about 6 weeks.

My condition improved considerably within a year, after regular consultations (twice a week). It's really important to find real experts, in specialised centres or in hospitals where they know how to do acupuncture. It's also important to be stick with it and change your lifestyle completely.

Are you satisfied with your care? Do you think that trigeminal neuralgia needs to be more widely known among health care professionals and the general public? 

I am completely satisfied with acupuncture. As I learned later, many patients with trigeminal neuralgia recommend it and testify to its beneficial effect. It is important that doctors stop disputing, being suspicious or even advising against acupuncture. But again I must stress that it is essential to find an expert who really knows how to do acupuncture. Traditional Chinese medicine (TCM) is best combined with Western medicine.

Finally, what would you like to say to other Carenity members reading this?

It is extremely important to try to stay positive to get through the difficult times. 

It is also important to accept the situation, the illness and the restrictions as part of your life. You have to realise that it is okay to not participate in an event or activity because it might just make your pain worse or trigger it. If someone doesn't understand, it's not your fault, it's not your fault that the disorder is restricting you.

Any final words?

Never give up and stay optimistic!

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Take care!