Here you can read the personal accounts from TNA UK members. Sharing our experiences of TN is a useful way of helping us to understand the nature of the condition and the various coping methods that others may employ. If you would like to share your experience of TN please email [email protected] or write to us at:
TN Association UK, PO Box 10973, Nottingham, NG16 9GN
Janet's story
MY TN EXPERIENCE
No-one can ever forget their first TN attack. Mine occurred while I was entertaining at home. Towards the end of the evening, suddenly, out of the blue and with no warning whatsoever, I experienced the most painful, electric shock-type pain in my right upper jaw area. The pain went as quickly as it had occurred.
The following day I made an emergency appointment with my dentist. He gave me a thorough investigation and took some X-rays but could find nothing wrong. I asked him what he thought the problem was, but he had no idea. He suggested a referral to a dental surgeon at a local private hospital, which I agreed to.
I actually saw a locum as the dental surgeon was away. On examination, the locum suggested root canal treatment and the extraction of at least two teeth in the area of the pain. The episodes of pain had increased to about 30 or more a day. I carried on going to work but couldn’t concentrate. I couldn’t eat, could only drink with a straw, and was often too scared to talk for fear of triggering another attack. My defences were down and I agreed to the locum going ahead with the work he suggested. I returned home unhappy that I had lost some teeth but relieved that the pain was a thing of the past. The anaesthetic wore off, I looked in the mirror, smiled and yes, you’ve guessed it, I had another attack just as horrendously painful as the others. I sank down to the floor in floods of tears.
At my partner’s suggestion, I went to the A&E at our local hospital. Eventually I was seen. I was told that the pain was probably due to an infection and given pain relief and a course of antibiotics. I told the treating doctor about my experience with the dentist but this didn’t seem to interest him.
The medication had no effect whatsoever and by this time I was becoming seriously depressed to the point that I didn’t want to get out of bed in the morning.
I made an appointment with the GP, who looked blankly at me while I tearfully described the pain. He suddenly brightened and said he would refer me to a maxillofacial specialist. So off I went to the Maxillofacial department at a London hospital where I had an X-ray and a blood sample. I was called in again when the X-ray result was available, and the doctor suggested an MRI brain scan which was arranged for the following week. The result revealed no abnormality but I could have screamed with frustration when the letter merely said, “You will be pleased to know that your brain scan was reassuringly normal.” Yes, of course I was relieved but I still didn’t know what was wrong with me!
Three weeks later, the longed-for breakthrough occurred. An elderly gentleman in my office came over to say hello. I burst into tears and, on questioning, described my problem. Without hesitation, he said, “Oh, trigeminal neuralgia – it’s a b****r, isn’t it?”
That evening, I spent hours on the internet gathering all the information on TN I could find. I made an appointment with the GP and triumphantly presented him with reams of paper. His response was disheartening: “Don’t believe everything you read on the internet, it doesn’t mean you have TN.” However, by now I was confident enough to insist on a referral to a neurologist.
To cut an already long story short, I was referred to a neurologist who recommended an MVD, and without really describing what it entailed, cryotherapy and acupuncture. I left the hospital feeling thoroughly demoralised and quite scared.
Life has a funny way of dealing with things, doesn’t it? My partner arrived home one evening announcing that he had been offered a promotional job with his company in Bristol. Three months, and a lot of pain, later we moved to the South West, saw a neurologist in the area and received what can only be described as first-class treatment.
What was worse for me – the condition or the “treatment” I received? It’s a hard question to answer! – Janet B
Mike's story
TOO OLD FOR AN MVD
I first contracted TN in August 2008. Like most of our fellow sufferers, I suspect, it took me completely by surprise – waking up, indulging in the first yawn of the day and going rigid with pain as if someone had applied an electric wire to my lower left cheek. I made an emergency appointment with my dentist and she assured me it was an abscess and removed a tooth in my lower jaw. That didn’t work, of course, and for the next two years I suffered debilitating pain with only occasional periods of remission.
In 2010, I suffered a heart attack which required a quadruple bypass and was amazed to find that I was pain-free for the period of the operation and the recovery period afterwards. However, the pain returned and during a check-up with my doctor I mentioned this and he almost immediately recognised that it was TN and prescribed carbamazepine. This brought some relief, but he also referred me to Mr Jeremy Collyer at Queen Victoria Hospital for a cryotherapy procedure. This was really effective but only lasted six months. After a repeat procedure Mr Collyer suggested he refer me to Mr Carl Hardwidge at Hurstwood Park in Haywards Heath for advice on a more permanent procedure.
During discussion with Mr Hardwidge, we agreed that a Gamma Knife procedure would be the most appropriate in my case – I am too old and fragile to risk a general anaesthetic for an MVD. I duly reported to St Bartholomew’s Hospital in September 2014 to be welcomed by Mr Ian Sabin and his caring nurse. As you know, the Gamma Knife involves drilling four small holes in the skull and fitting a metal framework to the head. My daughter, who had accompanied me for support, was highly amused by the effect which made me look like Hannibal Lector. She promptly took a photo of me which she circulated to the rest of the family via her iPhone!
However, despite the slight temporary discomfort, the procedure seems to have worked and I am now in the process of reducing my intake of carbamazepine. I can recommend this procedure to any other old fogeys like me and look forward to a pain-free life from now on.
Pat's story
MY GAMMA KNIFE
With help from my husband, as I was suffering from a painful bout of TN, I was able to attend the presentation at the London Radio Surgical Centre on 5th March and would like to thank all concerned for providing such an excellent, informative and supportive event.
Just five days later, I underwent “Gamma Knife” treatment at the National Centre for Stereotactic Surgery in Sheffield and I thought that this brief, personal account – written almost immediately afterwards – may be of interest to others who may be considering various treatments:
I went into hospital on the day before my treatment and met several members of the Stereotactic Radio Surgery Team who were, without exception, friendly, informative and reassuring. The following day began with the fitting of a lightweight “frame” to my head (just a few seconds of slight discomfort from the local anaesthetic), followed immediately by an MRI scan. A detailed plan for my treatment was then made by a physics technician, and approved by a neurosurgeon, and then I had the final treatment – lasting exactly 59 minutes – which took place in the Gamma Knife „machine‟ (very similar to an MRI scanner but much quieter!), where I lay listening to music – very relaxing. Afterwards, I had a Polaroid photograph taken (very becoming!), before the frame was removed and I returned to the ward. The following morning, I was visited by two of the radiographers who checked on my progress and gave me follow-up advice. Then I went home, feeling tired but without pain.
Pain relief from Gamma Knife treatment should not be immediate since it works on newly developing cells rather than destroying existing ones, but at present I still have no pain! I certainly feel very positive about my experience and would be happy to chat to any other TNA member who may have had similar treatment or may be considering it.
NB. The Sheffield Hospital’s website, www.gammaknife.org.uk, is excellent.
Mark's story
DIFFICULTIES WITH DIAGNOSIS AND GAMMA KNIFE TO THE RESCUE
This report is about me, Mark, 29 years old and profoundly deaf. I have been suffering Trigeminal Neuralgia (TN) twice for over 8 years since from 21 year old. Here is my experience about this atrocious illness.
In May 2011, I was a student at Sheffield Hallam University (SHU) and was on my work placement year in Hull when I had both the bottom back wisdom teeth removed. A couple of months later the pain on the right side of my face started to slowly increase, it was more sensitive and felt like it was burning, and I had more toothache. Then the pain gradually worsened, it became shooting pain and severe electric shock type pain which spread from my right ear radiating throughout my cheek. My jaw was in tension and my teeth clamp and grind tight together.
When this excruciating pain was happening, I had to stop what I was doing and put both my hands on the right side of my face, and I cried too because the pain was so severe. I started to lose some weight to seven stones because I wasn’t able to eat meals or even drink very well because it was so painful and took a long time. I couldn’t brush my teeth too because it hurt so much. It limited me going out like I used to do such as see my best mates for a drink or going shopping and it affected all my daily life as well as disturbing my night’s sleep. I felt physically tired and emotionally stressed, so many times I wished the pain would go away but it didn’t. The only medications I was taking at this time were painkillers Codeine, Ibuprofen and Paracetamol but these were not helping me. My family all tried to help me but it was difficult as they also couldn’t understand why I had this pain.
I had seen my dentist regularly to see if it was a bad tooth or something else but he did not find anything wrong with my teeth so referred me to Sheffield Charles Clifford Dental Hospital to see a specialist dentist. My first appointment was in November where I saw a consultant in oral surgery, with the support of my parents and a British Sign Language (BSL) interpreter, we discussed this awful illness. The consultant thought I had Temporomandibular Joint (TMJ) and referred me to a physiotherapist to see if it could help improve it and arranged to see me again in 4 months time. My first appointment with the physiotherapist was in December and after some tests I was given jaw exercises and massage to do. Unfortunately, over Christmas the pain increased and on Christmas day, when the whole family gets together, I was embarrassed to eat in front of them because it was so difficult due to the severity of the pain and I did not want them to see me crying.
I was so frustrated as nothing seemed to be working, I was in so much pain. I started to look on the internet and research what my symptoms could be and what could help reduce this pain. I discovered about TN and a medicine called Carbamazepine. I took my research and went to see my GP who thought this might help and prescribed me 100mg – 200mg of Carbamazepine.
When I returned to the physiotherapist in January and explained how I had been, he felt that I could have a neuropathic pain since the physiotherapy had appeared to aggravate my symptoms. The next month was my appointment with the oral surgery consultant where we had a long discussion about my medications and thought the next step was for me to try tricyclic antidepressants as an analgesic and muscle relaxant drug which would require monitoring to find the correct dosage. I explained what I had found out about TN but they felt that I was too young to have this condition. The consultant also referred me for cognitive behaviour therapy due to the severity of the pain and the fact I would panic when the painful electric shock type pain happened. My next appointment with them was for 4 months and I was to have an MRI before then.
I was still having a lot of pain, severe shooting, electric shock type pain which spread from my right ear radiating throughout my cheek to my mouth, it was so sensitive and felt like it was burning. I was feeling really depressed and my concentration was poor. I was in my final year at university and because of this I found it difficult to meet my dissertation deadlines. I did manage to complete my degree in June 2012 and I was awarded a 2.1 which made me very happy.
My pain did not reduce and I tried different combinations of my medication seeing the oral surgery consultant every 4 months. The Carbamazepine gave me lots of side effects which were double visions, wobbly walking, memory loss, tiredness and falling asleep in the day. The higher the dose the more side effects increased. This was also extra pressure in my life. Christmas 2012 was worse than the previous Christmas because I was experiencing side effects from my medication, I was extremely slow at eating and I felt embarrassed again.
By March 2013, at my oral surgery consultant appointment, I explained that appointments every 4 months was too long for me as I felt so depressed and helpless because I could see no life aim in the future with this atrocious illness that affected my daily life. I was struggling to eat, was really tense when trying to chew and it was difficult to even drink. I found it difficult to sign, it affected my right ear and I couldn’t wear my hearing aid because of the pressure, I felt all one-sided. I was taking the highest dose of carbamazepine I could tolerate, 1600mg. During this consultation, Professor Loescher overheard me and asked the consultant to explain all the symptoms. She advised a change to Carbamazepine Prolonged Release (PR) which I could then increase the dosage of and Pregabalin. An urgent appointment with Professor Loescher was booked.
Once we met with Professor Loescher and her team they confirmed that I did have Trigeminal Neuralgia (TN), at last it felt like I was being listened to and I had some hope that I might get better. I felt happier because I knew what was wrong. It was not certain why I started with TN and there were a number of possibilities -maybe it could be linked to my deafness but we have not confirmed this.
I still felt worn out as the Carbamazepine PR gave me the same side effects although I could tolerate a higher dose. I was advised the best course of action was for me to have Stereotactic Radiosurgery (Gamma Knife) rather than Microvascular decompression (MVD) and we all agreed with this.
My first Gamma Knife was on 3rd July 2013 and my memory is that I have a metal frame screwed on my forehead and back of my head, had an MRI scan then went to surgery room, lay on the machine bed and the metal frame was attached to the bed to make sure my head didn’t move. It took about 30 minutes and it was quicker than I thought. I had a review in October where I was pleased to say that the pain had reduced slowly. I was still taking the Carbamazepine PR
Christmas 2013, even though I was still experiencing side effects from my medication I was able to eat most of my Christmas dinner with my family and I was not embarrassed. That was the best moment of my life.
In January 2014, at my review appointment they were delighted to hear that I had the best Christmas dinner for a number of years with very little pain. I was advised to try to reduce the Carbamazepine PR by small increments once every 2 – 3 weeks. Clinically there was no evidence of any sensory deficit but it could occur as radiosurgery has effects over a long time. I only needed a 6 month review and at this one I was able to say that the pain was lots better and I had reduced the Carbamazepine PR to where I was not experiencing as many side effects. I was very happy and felt I could move on with my life.
Just before Christmas 2016, the TN pain returned, exactly the same pains that I had in 2011. I had to increase my Carbamazepine PR and again had side effects. I was urgently referred to see Professor Loescher in January 2017 and we all agreed that the Gamma Knife procedure was the best option again. This happened on 1st March. It was explained that there was a possibility that I could have a 70% chance of developing some degree of facial numbness which I do have now. Again, it worked and I was able to reduce the Carbamazepine PR. Unfortunately, I have developed pins-and-needles in my cheek and mouth and sometimes in my nose and eyebrow, also a dry eye and I dribble now too, that can be embarrassing. This isn’t going to go away. This time the review was a year and that made me feel much happier.
In July 2018, I saw Professor Loescher and I was able to say I was still pain free and was well but I still needed to take my Carbamazepine PR. I am still pain free and currently only take Carbamazepine PR 400 mg in the morning, I have put back on my weight and feel much more healthy. I am so pleased.
My life has completed changed because of TN, the pain I had and the medication I need. I want to say how grateful I am to having Professor Loescher and the team to look after me and support me through my treatment.
Sherrie's story
MY GAMMA KNIFE EXPERIENCE
In 1993 I started having severe attacks of facial pain which nobody seemed able to diagnose, including two consultants whom I paid to see. A two-year remission stopped me looking any further but then the attacks returned with a vengeance, so I got on to the web and eventually found out what was wrong. Sometime later – after yet another session of being sneered at by one of the same consultants but this time on the NHS and, after waiting 18 months to the day for an MRI scan, was eventually given an appointment for an MVD in April 2003. I was also prescribed gabapentin after two horrendous visits to our local night-time Kettering Emergency Services (Keydoc) following suicidal pains while I waited for the operation.
The MVD was unsuccessful but the gabapentin kept the pain under control and following a clerical error by the NHS, I again saw the neurosurgeon, who was gently coerced into referring me to the Royal Hallamshire Hospital in Sheffield. I was referred to the radio-stereotactic unit about the possibility of gamma knife treatment. My experience of the NHS (and its consultants) had been chequered to say the least up to that point, but the RHS and its staff were amazingly kind and encouraging.
It was suggested that while the medication kept attacks at bay, it wasn’t worth risking treatment. The gamma knife (a beam of radiation is directed at the nerve to kill it) is not always successful with patients who have already had the MVD and there are some scary side-effects. However, I was told to contact them again if the effectiveness of taking gabapentin stopped, which it did the following year, and I was booked in for Gamma Knife surgery in early December 2004. Having holes drilled in my face to hold a ‘cage’ in place so that the radiation targeted the right place, was not much fun and lying flat on my back for a second MRI and the treatment was scary, as I can’t normally do that. However, the staff who dealt with me during and after the treatment were truly wonderful and the consultant I’d seen was always available by e-mail or phone when I’ve needed to ask questions, (E.g. about changing my medication).
Did it work, though? Late December through to April were the worst months of my life (and not too good for my poor, supportive husband!) but, once my meds were sorted and I’d regained the strength lost since last October, I started feeling good and am now feeling better, more energetic and happier than I have for as long as I can remember. Thank you to TNA UK for the extra knowledge I’ve gained and for the people I’ve been lucky enough to come across.
Frank's story
Over a period of at least ten years my TGN episodes have been more or less controlled by medication but matters became worse earlier this year culminating in three fifteen to twenty minute attacks which were quite unbearable in their intensity.
This drove me to a neurological clinic (Hayward’s Health) where within two weeks a surgeon carried out a Radio Frequency Rhizotomy procedure. It was a day patient operation at the Royal Country Hospital, Briton.
I cannot speak too heihgly of the surgeon and the whole experience. The pain left me immediately and has not recurred. Life changing.
I have gradually reduced my pills to none.
I am advised that there is a 40% chance of no further problems in the next five years. If the problem returns I am told to return to taking medication and I believe it is possible to have a repeat rhizotomy.
But for the present I am so delighted to be normal and I would be very happy to pass on my experience. Earlier this year I spoke to a lady in Northern Ireland on our help line and it was so useful to do so – if only to be in a better position to talk things over with my consultant.
Kirsten's story
KIRSTENS TN STORY
My name is Kirsten and, at first glance, I look like a healthy 28 year old woman, who has everything together. I’m a clinic coordinator at a hospital and I’m married, with two cats.
For the last three years, I have been running a website documenting my life with trigeminal neuralgia. I find a lot of strength in writing about my struggles with pain, but I also wanted to create a place on the internet that is just a real person, blogging about real life with TN.
I have had trigeminal neuralgia since I was 23 and my five-year anniversary is July 9th 2015. I’ve always said that I’m pretty sure everyone can remember the exact moment their TN started.
It was my dentist who first identified that I had trigeminal neuralgia, refused to do any dental work for my pain (thank goodness!), but as I wasn’t officially diagnosed, there was nothing he could do for me. I was sent home, in agonising pain, on over-the-counter painkillers and my fight to find answers began.
I was met with a lot of ‘no, you’re too young’, or ‘you can brush your hair today? Can’t be neuralgia’, from everyone but my GP. My GP has been my biggest supporter throughout everything and has questioned other medical professionals for me, chased referrals, checked medications and been a shoulder to cry on, so I haven’t had to do it all alone.
In the last five years, I’ve been diagnosed with trigeminal neuralgia, a hormone condition and a rare eye disease, which meant I lost the central vision in one of my eyes. When they say things happen in threes, I wasn’t expecting that it would be this!
I know I shouldn’t, but I sometimes find myself comparing my health to other people’s. I dedicate a lot of time every day speaking to people at various stages of their journey, with varying levels of severity. Everyone is struggling with something and I sometimes have to remind myself that just because I can work at the moment, doesn’t make my pain any less valid. I’m very much a ‘go, go, go’ person and I’m worried that if I stop, I won’t be able to start again. I’m sure a lot of people can relate to that.
Sometimes being positive about my otherwise very difficult situation is all that keeps me going. I find writing and speaking about my pain to be such a therapy. I get just as much back as I give, because I have seen people pull together in the darkest of times.
I can’t put into words how much I am looking forward to meeting the organisers and members of the TNA, when it is safe to travel around the country again! I look forward to meeting people face to face with our condition for the first time and hearing all your stories.
Caroline's story
CARING FOR SOMEONE WITH TN
Member’s wife Caroline talks about caring for someone with TN …
Living with someone with TN can be very hard. My husband John developed the condition about 10 years ago. Fortunately, he was diagnosed quickly so we knew what we were dealing with. Well, we thought we did, but nothing can prepare you for this type of condition. It’s so frustrating not being in control of the pain. The drugs help dampen down the pains but unfortunately for John, nothing takes it away completely – if only I could do something to help alleviate the pains. John could take larger doses of oxcarbazepine but he doesn’t want to be a zombie and, in between pains, wants to be able to function normally. The only thing I can do is to be patient and keep everything I’m in control of in shipshape order, i.e., the house, children, cooking, etc, so there is as little stress as possible for him as stress definitely exasperates the pains.
When my husband was first diagnosed, I contacted the TNA and I’m so pleased I did. They certainly helped me to understand the condition and gave me the support I needed. I wanted to learn as much about the condition as possible. Talking to someone who knew what the pains were like certainly helped me. Plus, I got involved with helping the charity which was a comfort too. However, my husband didn’t want to talk to anyone about his pains. In fact, just seeing the TNA newsletter makes him feel uneasy.
Being there to support John I know also helps and it’s a comfort to him to know he has someone there who cares and tries to understand, plus the reassurance from me that episodes of pain will subside. However, this bout of pains has not completely gone away for over a year now, which has been hard on all of us.
John is a very calm person and rarely gets cross or raises his voice. TN pushes him to being desperate at times and less tolerant of life’s challenges. He is scared it will never go away. It’s like watching your loved one being tortured. I’m sure I would be awful to live with if I had to endure this illness. I wish we could share the pains, as I can see them wear John down and I believe they have aged him. He copes fantastically and does try to be happy and normal in between pains and even during them when the pains allow. But the family often see him sitting quietly, bent over holding his head, and this is hard, especially for the children.
It’s a real shame that we miss out on some social events, as it is hard for John to concentrate and be social while he has the pains. Another hard fact about the condition is that no one really understands; many people refer to it as ‘headache pain’, but it is nothing like that. John said it would be easier if he’d broken a leg as people could see what was wrong with him. It’s a cruel condition. He does sometimes talk of ending his life when the pains are at their worst, sometimes he suffers for 20 minutes at a time. No wonder they call it the ‘suicide disease’. However, when he is free of pain, he knows what life is like without the pain and hopefully this will keep him going.
It’s also hard for people to understand the longevity of the condition. People think it can be cured and for some people it can be. John had an MVD (a Microvascular Decompression) nine years ago but, in his case, where the blood vessel interferes with the nerve is too near the brain, so the operation was not successful. It was very disappointing. John doesn’t want to try any other surgery as he is worried another procedure may make it worse, and that would be impossible to deal with. We just pray this episode will leave him soon and he can start enjoying life fully again.
Another thing which makes it particularly difficult in being the carer of someone with TN is that you, as the carer, can’t really complain about any ailments you yourself may have, since nothing you are experiencing will be anywhere near the level of pain that TN causes. If you can imagine having a tooth drilled and the dentist hitting the nerve (which hardly ever happens these days with anaesthetic injections) – I have had that pain but only very briefly thank goodness … well, TN sufferers have that level of pain for long periods of time, in John’s case for anything up to 20 minutes, so how can there be any comparison?
Being the carer of someone with TN means it is particularly difficult to complain about any ailments you yourself may have, since nothing you are experiencing will be anywhere near the level of pain caused by TN. Imagine having a tooth drilled and the dentist hitting the nerve (which hardly ever happens these days with anaesthetic injections)! I have had that pain but only very briefly, thank goodness, but for TN sufferers that is the level and intensity of the pain and it can last for long periods of time – in John’s case for anything up to 20 minutes at a time.
Good luck to you – whether you are a sufferer or a carer, I would highly recommend you seek the support of TNA UK, who work hard to give guidance, information, someone to talk to, plus raise awareness of the condition amongst the medical profession, so that quicker diagnoses are made and more money is given to research for more cure options. I can’t thank the TNA enough for all their help and support they have given me and continue to give me.
Roger's story
MY LITTLE WORLD
I’m Roger, aged 65 and semi-retired from running large IT programmes in industry. Although ‘semi-retired’ I am very busy with all sorts of interests including my own small marine consultancy business, flying, boating and doing various other jobs.
About 5 years ago I was in a business meeting, all very focussed and thinking ‘outside of the box etc.’ when I noticed a strange ‘tickle’ on the right side of my face near my eye. It didn’t last for long and I thought no more about it.
Some six months later, I was in the shower when something horrendous happened. I felt an acute ‘electric shock’ in the same place as my previous ‘tickle’ which seemed to consume most of the right side of my face. I found myself panicking and before long went down on my knees holding the towel to my face. I thought it wouldn’t stop but, eventually, it did. I was bewildered and exhausted.
I went to see my GP very quickly and she printed off a piece of paper and handed it to me – ‘Trigeminal Neuralgia’ it said in big bold threatening letters at the top of the page. I read on and a whole new world revealed itself to me – carbamazepine, MVDs, glycerol injections to name but a few.
The attacks returned, not too frequently but over time the attacks became more frequent and more intense. As it progressed, I likened it to having a six inch nail embedded in my face or a bared mains cable being rubbed around my right eye.
My GP and I worked well together to bring it all under control. A slow increase of carbamazepine reduced the frequency of the attacks and symptoms however, it was also clear that over a 6-12 month period the medication was becoming less effective. I see myself as a bit of a whizz with the Excel Spreadsheets so I created a Pain Chart and recorded medication, frequency of attacks and pain on a daily basis using simple scales. I monitored eating, showering, teeth cleaning and random attacks. It helped me to understand the pattern of what was happening and the GP was also able to draw some conclusions from this chart.
Meanwhile, I was trying to get my life back. At one time I was on about 1800mg per day of medication, becoming lethargic and finding that eating was a nightmare. It took me more than half an hour to consume a piece of grilled salmon, and noisily sucking thin porridge off a spoon in the morning was bordering on anti-social behaviour. I did jigsaws, carried on driving and went to meetings. On one occasion, with each step on Waterloo Station, the jolting disturbed my “six inch nail” so much I had to stop off at Costa Coffee, negotiate some water and slink into a corner to take more tablets.
Eventually the medication was at such a high level I felt that something else had to be done – I had nowhere to go. I managed to get an urgent appointment with Mr Owen Sparrow – what a blessing that man and his team are. After some discussion and examination, we decided that a Glycerol Injection was the most favourable ‘next step’ for me. I went to Southampton Hospital early one morning, ‘nil by mouth’ of course, and was given a local injection in my face to which was added a small connector. Then I was put to sleep and a much larger syringe was connected. This syringe would be used to put glycerol in the exact place, a location called ‘Meckel’s Cave’. They woke me up at this point and asked me to confirm that I could feel anything. People started asking me questions, but speech was beyond my capability. However, in a disjointed sort of way I pointed to the spot and gave the thumbs up. Everybody seemed delighted at this and to my relief I was laid back down and promptly returned to anaesthetic oblivion. A little later I was awake and back in the land of the living.
Alleluia! There was no pain whatsoever although a quarter of my head felt numb!
I thought that was it – have a hospital sandwich and a cup of tea and go home, but I then had to sit up in bed for four hours with my head held face down on a stack of pillows so that the glycerol didn’t seep out of Meckel’s Cave. I was hungry, my back was aching but I didn’t care – the six inch nail had gone and so had the bared mains cable.
At last, I had got my little world back. No more attacks and I was slowly coming off the medication. Within two weeks I was back to normal and life was right again. I consider myself very fortunate – I had found the Trigeminal Neuralgia Association, I had a brilliant GP who understood and worked with me and I don’t live far from the ‘A’ Team at Southampton General Hospital.
That was nearly four years ago. I remain conscious that it could come back and keep a supply of carbamazepine at home or when I go away. But so far……………. so very good.
Jon's story
WHAT RELIEF – NO PAIN
I thought it time to write to you with a success story, in the hope that others who may be struggling with the pains associated with TN will feel there is hope around the corner.
I had all the classic symptoms – and reading “Roger’s Story” on your website was most helpful.
The TN started some nine years ago and I, like others, visited my dentist. Teeth were removed on the first two visits to see the dentist!!! On the third visit, I was told my teeth, etc, were fine but I may have TN and should visit my GP.
My GP confirmed the diagnosis and prescribed carbamazepine (Tegretol) tablets – only two x 100mg per day. The effect was wonderful. The pain disappeared and I could eat, talk and brush my teeth again.
Gradually, the medication proved less helpful and the dosage was increased. Over a period, this was increased until I would take 1000mg per day – and I was still suffering the same terrible pains.
My GP still wanted to treat me with medication, but the side effects of the carbamazepine were becoming unhealthy. The pain and the side effects made life intolerable. Fainting became a probability!!
My GP seemed not to want to cure the cause of the condition, and I had to force the issue by paying to see a consultant. Paying meant I had an early appointment to see my saviour – Mr D. Bhattaccharyya. At this stage, I only had to delay taking a 200mg tablet by a couple of hours to be in a complete distressed condition – not even able to speak to the consultant.
An MRI scan was quickly arranged to reveal the severe extent of the problem: “There is a big vascular loop (presumably of the superior cerebellar artery) compressing the right trigeminal nerve at the root entry zone near the brainstem. In fact, the loop has insinuated itself between the sensory and the motor divisions and split the two.”
Mr Bhattacharyya and his registrar (I only know him as Tony/Anthony) performed an MVD on 27the January 2014. The expertise and care I received at the Dept of Neurosurgery, Royal Hallamshire Hospital, Sheffield was exceptional.
It does take some time to fully recover from such an operation, but from day one, the TN pain had gone. I could clean my teeth and eat without the TN shooting pains.
I had a slight setback, in that (two weeks after the op) I suddenly developed Bell’s Palsy. The right side of my face looked as if I had suffered a stroke. I was re-admitted to the Hallamshire and had a course of steroids and anti-viral tablets. My facial looks have recovered completely though I still have some 15% partial numbness to the right side of my face – this will go. I now take NO medication. Feel better than I have for many years.
So, dentists to recognise symptoms earlier, GPs to refer to consultants at an earlier stage, the opportunity for the suitable procedure to be undertaken at a earlier stage. What a difference this can make!!!
And, it seems to me, if you want to be clear of the pain have the MVD. Your leaflet detailing the percentage of success of various procedures convinced me the MVD was the answer.
Many thanks for your help!
Robert's story
LIVING WITH TN AS A DENTAL STUDENT
My story began when I was twenty years old and in my second year of dental school. It wasn’t long after my birthday, around the end of February. One morning whilst washing my face, I experienced a sharp sensation across the left side of my upper lip. I’d learned about Trigeminal Neuralgia in lectures and had a gut feeling that this was it. People told me I was being silly – that I couldn’t possibly have a condition that affected more women than men, and people who were much older in years.
I tried to ignore it, but within days I found myself in an intolerable situation, experiencing what I can only describe as an electrically charged knife stabbing into my lower eye, lips and rippling down my face. My GP referred me to a neurologist. Over the next few months, I took a cocktail of different drugs – carbamazepine, oxcarbazepine, lamotrigine, gabapentin and pregabalin. Then there were the additional drugs to be taken to stop the side-effects of those drugs! Twice I ended up in hospital with drug-related allergic reactions. I felt like a zombie limping through a field of pain. I wasn’t living, I was existing.
One day, after a particularly bad attack that lasted for 30 minutes without any respite in between, I collapsed in the street. It wasn’t the first time I had experienced these prolonged, intense periods, but it was the first time I had collapsed from it. Nobody helped, assuming I was either drunk or an addict. Watching so many feet step over me and looking up at all those disgusted faces was, in fact, the pivotal turning point for me. I started fundraising (and still do), and began to openly speak about the condition, connecting with other sufferers across the globe and sharing experiences. I also returned to my neurologist and insisted on referral for MVD neurosurgery. In December 2013 Consultant Neurosurgeon Mr Ian Sabin gave me my life back.
I’ve been in remission for just over a year now. I am so grateful for being able to do things which many people take for granted: walking in the wind, shaving, being able to talk, eat, smile. Now I am no longer existing, I am living and loving it!
I’m now in my fourth year of dentistry and motivated more than ever to become a General Dental Practitioner. I will be at the frontline, so if somebody comes in with TN, I will make sure they get all the help, support and treatment they need.
Geoffrey's story
MY MVD IN FRANCE
I have read several stories on your website; they have prompted me to write a few lines as it might be of help to somebody.
In 2007, my dentist realised what was going on straightaway and referred me to a maxillofacial specialist who confirmed the diagnosis and prescribed carbamazepine. It had little effect other than to make me drowsy.
I am a champion of the NHS and feel people that knock it don’t realise how lucky they are. However, when it came to TN, I received no effective treatment over the next four years. Trigeminal Neuralgia seems to fall through the NHS net as it is rare and little understood. For the same reason, it doesn’t, in my experience appear to meet any of the criteria for Social Security benefits if you are unable to work.
By 2011 I was unable to continue running my small business for obvious reasons but mainly because by this time very often I couldn’t talk and so was unable to communicate with my customers. By then I had decided that, as far as TN was concerned, I was going to have to live with it. So with no income and no treatment on offer, my wife and I sold up, got into our van with a mattress and a fridge and went to France (a life-long fantasy). We travelled around France for about two years, finally deciding to live in an alpine hamlet in the south east near the Italian border.
I went to the local doctor and was required to give a brief overview of my medical history. He asked how long I had had TN …. 5 years. “Why has it not been dealt with?” he asked and picked up the phone. He made an appointment for me with a neurologist, I saw her three days later and she booked me in for a scan five days after that, and an appointment with a neurosurgeon two days after that. The surgeon said he would perform an MVD procedure for me. He arranged an appointment with a cardiologist for that evening to see if I was fit for the anaesthetic. I had the operation three weeks later and was in hospital for five days. A perfect success – happy days!
Ruth's story
A DIAGNOSIS PRIOR TO LOSING SOME TEETH
I have always taken good care of my teeth so I was shocked when, one Friday evening last March, I experienced sudden excruciating pain in my lower jaw. This worsened all through the night and continued for the rest of the weekend. After three sleepless nights and having desperately (but in vain) swallowed handfuls of painkillers, I rang the practice on Monday morning and begged the dentist to see me urgently. He examined me, took X-rays, shook his head and said he could see nothing wrong with my teeth. I insisted that I was in agony and going crazy with lack of sleep and also unable to eat, or speak, without pain. He prescribed antibiotics and more painkillers.
I consumed two weeks’ worth of antibiotics in two days, taking them every four hours, day and night, and I can’t count how many Neurofen and paracetomol tablets. I hadn’t slept for a week, nor been able to eat anything except soup and boiled eggs. I insisted on another appointment. “Just pull out the damn tooth!” I yelled, “pull out all of them!” The dentist repeated that he couldn’t find anything wrong with my teeth and said all he could think of was to give me root canal treatment but he couldn’t fit me in for that for another four weeks. I couldn’t endure another four days, let alone four weeks! It was as if a fiend was slashing at my face with a machete – a red-hot machete, and another demon was probing me with an electric cattle rod. I was going crazy with pain.
A friend who was shocked to see me in such a state rang his own dentist and asked him to take me as a patient urgently. Somehow I got myself to the practice but once again the dentist protested he could find nothing wrong and again suggested root canal work. However, he hesitated, and said he wanted to consult a colleague who had been working at nearby Bart’s Hospital. The colleague tapped my teeth with an instrument and asked me exactly where the pain was. “Not in my teeth, but it’s in my jaw,” I sobbed. “Aha,” he said, “you’ve got Trigeminal Neuralgia. Go and see your GP.”
I managed to get an emergency appointment at my Group Practice. I described my symptoms. The doctor recognised straight away that what I had was TN, explained that all the painkillers, not to mention the antibiotics, were useless and prescribed carbamazepine, 100mg twice daily.
I rushed home and googled this and at last understood what was happening to me. Fortunately, the carbamazepine worked, stopping the nerve from convulsing constantly. Now I was able to eat – carefully – very soft potatoes, pasta, and pureed fruit and vegetables, and I trained myself to talk like a ventriloquist’s dummy, through my teeth, without moving my jaw. So far so good but I needed to know more and to get some support, as I was still very shocked and could feel depression pulling me down.
I reckoned there must be an association for this condition and luckily, I found TNA UK. At once they sent me a raft of information, excellent leaflets, and a card to keep on me to warn people should I collapse on the street if the pain shocked me to my knees. I also phoned the helpline and received not only sympathy and understanding but practical advice. At last, I felt I was not alone. I now understand my condition and can manage it appropriately. I hope I will get remission but, if not, I know there is a range of treatments, such as surgical interventions, but in all this I am supported by my friends at TNA UK. Thank heavens for them!
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