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Neuralgia trigeminal

(6 Posts)
kjafh Mon 15-Feb-21 13:13:57

The illness began quite inconspicuously, in spring I started to have weird “toothache” which were, however, neither all-day nor regular. In the beginning I did not attache a great importance to them, but soon they began to worsen rapidly. I had never experienced such pain, I could not exactly determine from where they actually come, they were very “deep”. I suspected that it was probably not typical toothache, yet I could not assign it to anything else. Moreover, I had indeed problems with teeth by that time (root canal treatment), one tooth was even extracted. However, the pain lasted for months, they appeared all along the jaws and above all they became more and more intense.The dentists assured me that the teeth were already fully all right, I even consulted the issue with several specialists. Not until one dentist alerted me that it could be trigeminal neuralgia, I arranged an appointment by a neurologist who confirmed the diagnosis. Also, I had undergone several medical examination (MRI, CT) that excluded multiple sclerosis and tumor.
The pains were distinguished by strong intensity, the intervals between them were getting shorter, the pains were deteriorating and in the end they were in fact not disappearing at all. I could not sleep, I lost 15 kilos. The doctor prescribed increasingly stronger medicaments of all sorts so that I could manage the pain at all, he even suggested gamma knife radiation. The pains absolutely hindered me from any activity, I was basically only lying, it was the worst imaginable physical pain, on the scale 0-10 the pain was of value 10. The worst thing was, however, that the pain graduated and nobody knew what to do about it. The big dose of strong medicaments resulted, of course, to substantial side effects with which it was likewise impossible to live normally.
As late as after 3/4 year, my state of health was getting better, after I had started to attend acupuncture, on the recommendation of another patient with trigemininal neuralgia. Nowadays I can say that the acupuncture literally saved me. Of course, the relief did not come immediately, I felt first improvement approximately after 6 weeks. After regular attendance twice per week, my health state considerably improved. It is important to highlight the necessity to search for true experts, in specialized centers or hospitals where they can really do the acupuncture well. Likewise, you have to be patient and completely change a lifestyle. Nowadays, after two years of treatment I can say that my state is about 90% better, I could substantially reduce the doses of medicaments, return to a normal life - of course with certain limitations. Now, the pains appear particularly in cold weather, air conditioning, wind, draught - it is therefore very important to wear a headgear - a cap or a headband - (also in the night when needed) that protects the temples where there is a main knot of trigeminus. It is often stated that the trigeminal neuralgia can be caused by the previous exposure to cold. With hindsight, I realize that before the trigeminus problem occurred, I had been working in an open office with an extreme strong air-conditioning. It is necessary to avoid all sorts of cold, including food and drinks which immediately trigger strong pain. Contrary, warm, staying on the sun, only warm food and drinks and using of infrared light is very desirable. Similarly, the trigeminus is enormously sensitive to the touch, the pain is triggered by brushing teeth or chewing, therefore the best is to avoid hard food. A big problem represent stress, fatigue and various sorts of noise, primarily high tones - to be in a noisy restaurant, cinema, theatre or at a concert is almost impossible.
Last but not least, I would like to mention my experience with doctors - unfortunately there are only a very few experts that truly know trigeminal neuralgia and can listen to the patients, really help them. Too often I met with an approach that the doctor did not know what do, or worse they did not listen to me, only prescribed some medicaments that had no effect at all, in the worst case contested the diagnosis (and this at the time when I was experiencing the worst pain) or even asserted that everyone had a different pain threshold and that in fact, the trigeminal neuralgia was not so bad or that doing sports would help. It is clear that such a doctor does not know at all what the trigeminal neuralgia is about. So, the treatment was psychically difficult, unfortunately due to the approach of certain “doctors” too. Nevertheless I was so lucky to finally manage to reduce the pains, thanks to the acupuncture, high-quality doctors and suitable medicaments.

Aveline Mon 15-Feb-21 13:31:19

That sounds awful kjafh. When I was studying neurology we were taught that Trigeminal Neuralgia was excruciatingly painful. I'm surprised that more modern NHS staff were not very sympathetic. I suppose they were pretty powerless to actually take the pain away. Sounds like you were very thoroughly examined and assessed though.
I'm glad that you feel so much better but I'm sure it's left you very wary of a return of TN. Fingers crossed your precautions keep you as pain free as possible.

CassieJ Mon 15-Feb-21 14:49:38

I had this a few year ago. Trigeminal Neuralgia pain is truly excruciating. I have never felt pain like it. Luckily my GP was very on the ball and realised what it was. I did have a check up with the dentist first who also did an xray, but found nothing wrong with my teeth.
I was given high doses of pain medication, and I was lucky in a way that mine only took about two weeks to subside, but it was just awful while I was going through it.

I did read up on it quite a bit and one thing it said was many people ended up having teeth removed due to the pain, but in actual fact there is nothing wrong with the teeth and the pain continues. So be very wary if you suffer from this and a dentist offers to pull your tooth.

My pain [ touch wood ] has never came back, and I hope that continues.

Sheena Mon 15-Feb-21 14:56:55

kjafh ... my experience has been so similar to yours . My TN started in November 2019 as what I described as extreme toothache.. but dental xrays showed nothing at all wrong with my teeth.

I felt so disheartened I even changed dentists for another opinion (and decided to keep her as my dentist she was so kind and understanding) . Again more xrays. She referred me to a Maxfax consultant and I had a full face xray, and a CT scan.

Again nothing showed.. and no problem with the sinuses either.

Then came the first lockdown .. and still the horrendous pain continued. The only thing that helped was heat.. so I sat holding a hot waterbottle and took one to bed at night for months.

Eventually I was able to see my dentist again in July and she thought, from looking at the x rays , that one of my top molar teeth which was very heavily filled, may just be the problem.. so I had very lengthy root canal treatment on that tooth. She did feel that this was going to solve my pain problem as the tooth apparently had no blood supply, and the nerves had died.

I was so hopeful that that would be the end of it but no such luck. Still the pain continues in my upper right teeth, cheek, right side of nose and nostril up into my eye and eyebrow and temple. My dentist said to her this sounded very much like facial neuralgia and best to see my GP which I duly did.

Luckily my GP is completely understanding and sympathetic. I am now on a low dose of amitriptyline which just about takes the edge off.

The pain I can only describe as the worst possible toothache you can imagine together with bouts of sharp electric type shocks .. enough to take your breath away. It is ghastly.

kjafh I wish you well , and anyone else who suffers with this horrid condition,

Blossoming Mon 15-Feb-21 15:32:40

I have a soft splint to wear at night which also helps.

Nannatwiglet Mon 15-Feb-21 15:37:59

I echo everything that’s been said before about the excruciating pain and misery of TN.

I suffered with this pain for quite some time...a couple of years in fact.I used to get pain even on a hot day with the slightest draft of breeze blowing .I thought my teeth were at fault , but my dentist assured me all were perfectly fine. He told me about his mother having the same problem, namely Trigeminal Neuralgia and told me to see my GP.
My GP gave me carbamazepine - anticonvulsant-which helped with the pain but made me dozy and sleepy.
I suddenly decided to visit an acupuncturist for the first time to see if she could help me.
She did....and after about two months treatment the pains disappeared. Oh the relief....
I haven’t looked back since then...
This was about 20years ago...and I have never had a recurrence of TN since then. I always make sure I am wrapped up warm around the head face with woolly hats/scarves in cold weather...and make sure when sitting in the car that a cold draft doesn’t fall on my face...from an open window or air con for example. Don’t go anywhere where a blast of cold air from air conditioning falls on ones face either!