Trigeminal neuralgia

LooperCat

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Hi, I was wondering if any of you suffer with trigeminal neuralgia? I’ve had it for around three years and am awaiting a cryo nerve block which should give me some relief. My worst nightmare is when my pain meds aren’t doing their job properly and I have a hypo for which I need to eat - I’ve been on the floor screaming with pain before now when this happens. It’s led me to run my sugars high by not taking my QA so this doesn’t happen so often, although I’m trying to be better with it as my HbA1c was horrendous.

https://en.wikipedia.org/wiki/Trigeminal_neuralgia?wprov=sfti1
 

Rachox

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I can’t help you with your specific question but sympathise hugely with you. One of my closest friends has TN and it’s horrible watching her suffer. I hope you get your treatment soon x
 
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Juicetin

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Are you taking Carbamazenine , i have early onset neuralgia with short shock like pains at my right jaw hinge.
 

LooperCat

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I was, but it was causing me to collapse so they took me off it. I didn’t pass out, it was like my skeleton just melted.

The first time I keeled over, I hit my head on a wall and they had to treat it as a broken neck until they could scan me and make sure it wasn’t. The second time, my head landed in the bowl of cat food which cushioned the blow nicely... I did break the coffee pot I was holding atvthe time though.

I’m having a cryo-block next month, which should numb it for a few months.

In my case it’s the nerve that goes into the salivary gland that’s causing the problem, every time I salivate I get a jolt. Is the carbamazepine helping you?
 

Juicetin

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How long is the cryo nerve block supposed to dampen the pain for ? Out of interest was it a neurologist who recommended it over gamma knife, balloon compression, glycerol injection etc?
 

LooperCat

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A few months, they said. I’m being treated by a Maxillofacial professor at the Royal Glamorgan hospital in South Wales. It’s the next thing to try after the carbamazepine.
 

Orangeteddy

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My mum had TN and suffered very badly with it. (I say had it because she has since passed away - not due to TN). Attacks lasted weeks and she could not eat, drink, move or speak because of the excrutiating pain. She described it as like an electric shock in her ear. The slightest thing could make it worse - i.e a small draught or breeze against the face, any touch against the face, etc... I'm not sure if you are in the UK but here our experience was of many GPs having no knowledge of it having never encountered anyone with it - it is fairly rare. Patients get sent to dentists and all manner of other doctors before it is finally diagnosed. Mum was given Tegretol which is a preventative medication but it used to make her drowsy. She had another drug also which I can't remember. It's vital that family around you know about this condition and learn about it - they can they perhaps speak for you when you can't - and also learn how best to support you.

The following link is for Trigeminal Neuralgia Association and may have some useful info

https://www.tna.org.uk/
 
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LooperCat

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I was diagnosed following a routine trip to my dentist - it was only when I mentioned that the pain was up there with gallstones that he realised what it was and scheduled an MRI very quickly. I did get put on the tegretol (carbamazepine) but it was causing me to collapse so I had to stop taking it.

Thanks for all the info and the link xxx
 

LooperCat

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My TN isn’t quite in the usual spot on the trigeminal nerve either - it’s where it enters the salivary gland in my case. So you can touch my teeth until the cows come home with no pain. However, anything that makes me salivate sets it off. A delicious smell, touching food to my lips, and obviously eating and drinking. Apparently my case is “interesting” :facepalm:
 

meab2

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Can't help with your question but just wanted to say my mum suffered with TN too ,its such an awful condition she suffered for a good 4 to 5 years I think . She lost a lot of weight just because it was so difficult to eat,she had to put soup in a syringe because eating with a spoon would cause pain . Luckily she had an operation in which they put Teflon in her head just behind her ear and she's been fine ever since . Not sure if that's the correct spelling of Teflon but she was told its like a piece of sponge .
 
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Juicetin

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Can't help with your question but just wanted to say my mum suffered with TN too ,its such an awful condition she suffered for a good 4 to 5 years I think . She lost a lot of weight just because it was so difficult to eat,she had to put soup in a syringe because eating with a spoon would cause pain . Luckily she had an operation in which they put Teflon in her head just behind her ear and she's been fine ever since . Not sure if that's the correct spelling of Teflon but she was told its like a piece of sponge .
Hi, she had microvascular decompression, which is major brain surgery, they cut a hole in the side of your head, separate the blood vessel which is touching the nerve and wrap teflon round the nerve then put you back together again. Even that isn't a 100% guarantee of a fix for the neuralgia, but i'm really glad it worked for your mother.
 
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LooperCat

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I went to see my Maxillofacial team yesterday to get the nerve cryogenically frozen. However, after some discussion we decided that at the moment the risks outweigh the benefits, because it’s so difficult to get to. I might end up doing it eventually but the very high chance of losing my sense of taste, the ability to salivate properly and permanently having a numb cheek is just too much for now. I can handle the odd twinge, so keeping that one on the back burner for now.

I’m so glad they were able find a fix for your mum.
 
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Kate.pa

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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.
 
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LaoDan

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Hi, I was wondering if any of you suffer with trigeminal neuralgia? I’ve had it for around three years and am awaiting a cryo nerve block which should give me some relief. My worst nightmare is when my pain meds aren’t doing their job properly and I have a hypo for which I need to eat - I’ve been on the floor screaming with pain before now when this happens. It’s led me to run my sugars high by not taking my QA so this doesn’t happen so often, although I’m trying to be better with it as my HbA1c was horrendous.

https://en.wikipedia.org/wiki/Trigeminal_neuralgia?wprov=sfti1
My mother does, she takes Gabapentin which seems to work wonderfully. She had a really hard time getting that diagnosed, suffered a lot.
 

Craig20

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I’ve only just been diagnosed after 8 months of seeing different dentists. My doctor gave me carbamazepine which actually worked but my side effects were unbearable.
The dizziness, nausea and finally pins and needles in my neck and face stopped me from taking it.
Waiting on my gp to try something else.
 

TriciaWs

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I suffered with two lengthy bouts of TN in my 20s, followed dental work the first time. Eating was a real issue as anything hot/cold or that needed chewing would set it off. I found lukewarm soup the easiest thing to cope with or warm cocoa with a little egg beaten in.
 

Hopeful34

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I’ve only just been diagnosed after 8 months of seeing different dentists. My doctor gave me carbamazepine which actually worked but my side effects were unbearable.
The dizziness, nausea and finally pins and needles in my neck and face stopped me from taking it.
Waiting on my gp to try something else.
Sorry you've got this diagnosis. I've had TN for a lot of years, and like you carbamazepine helps, but the side effects aren't good. I don't know what dose you were taking, but could you cut down, and see if you can tolerate a reduced dose? I've done that, and whilst not ideal, it does help to a degree.