Personal Stories
Lisa Higgs' Story
Hello, my name is Lisa. I am 38, and was diagnosed with Trigeminal Neuralgia in 2005. I have three children aged 8, 5 and 3. I'd like to tell you about my diagnosis, my life with and the treatment of my TN.
In February 2005, I was living in Swindon with my husband and running my own company along with raising a young family. I was a happy, outgoing and confident person in all aspects of my work and social life.
I started to get pains down the left side of my face, mainly in my upper and lower back teeth. They started as short sharp twinges; I thought it was sensitive teeth but I would get them every time I opened my mouth. They started to get gradually worse and I started to get them when I tried to chew my food, if I spoke for too long or if something touched my face.
I realised it was something more than sensitivity when I was out for a drink with friends and I had to move away from the outside door to get away from the draught, I couldn't drink my cold drink and I couldn't hold a conversation for the attacks constantly coming when I tried to talk.
The next day I saw my GP and he told me that he thought I had Trigeminal Neuralgia. My two sons, then aged 4 and 11 months, had just had chicken pox and he thought I might have had shingles on the trigeminal nerve. He prescribed an anti-shingles drug and Tramadol, and referred me to a neurologist. I have since found out from fellow sufferers that early diagnosis is vital for TN and I was very fortunate that I had a GP who quickly diagnosed TN and that I did not spend months not knowing what it was or undergoing unnecessary dental work.
The first thing I did when I got home from the surgery was "google" Trigeminal Neuralgia as I had never heard of it before. The first link to come up was titled: "Trigeminal Neuralgia - The Suicide Disease"!!! The second was a link to an MVD video (a Microvascular Decompression - a brain surgery operation) which I watched in numb silence and, thankfully, the third was to the Trigeminal Neuralgia Association UK website. I was drawn to their forum page and read hundreds of comments from fellow sufferers. I remember hoping that this wasn't what I had developed.
My neurologist appointment came through within a week or so as at the time I could be seen privately through my husband's health insurance. He sent me for an MRI and CAT scan straight away. He confirmed TN and prescribed carbamazepine (Tegretol) - a relatively low dose to start with so I could get used to the drugs. I went along fairly steadily for about six months with the carbamazepine keeping the attacks at bay and not having any side effects.
But then my marriage started to show strain and the attacks came thick and fast, with each attack getting closer and closer together. My husband and I had just set up our own Property Management Company and the stress of running our own business and having two young boys was telling, and with this increased stress my TN got worse. I was running the office and looking after the children. The attacks started to prevent me answering the phone or dealing with clients.
I also had a personality shift from being someone generally sunny and outgoing to someone sullen and quiet for fear of bringing on an attack. Sadly my husband thought the pains were a figment of my imagination and this didn't help with the strain on our relationship. Suffice to say we split up at the end of 2005.
I went back to see my neurologist and he increased my carbamazepine dose. At this point I was having small sharp pinches of pain but the side-effects were awful and they prevented me from doing so many things. I couldn't drive, I couldn't string my words together properly and my speech was very slurred. I was so lethargic and tired all the time. I was clumsy, had blurred vision, double vision, and weight gain.
I couldn't work, it was impossible to communicate and I became increasingly nervous of having to interact with people I didn't know and who didn't know I had TN. I started to stay in more and more, and some friends became less understanding with me never wanting to go out or keep in touch - as they saw it - but I simply couldn't communicate because of the severity of the attacks and the side-effects of the drugs.
I think the fact that I didn't look ill made it very difficult for some people to appreciate quite how debilitating my TN was. If you see someone with a broken leg you can seem to qualify their suffering and their limitations more easily.
By this time I had started a new relationship and my new partner gave me the support I needed to push for answers and help. I went back to my neurologist several times in a few months and he kept adding in new drugs along with my carbamazepine, and soon I was mixing phenytoin, amitriptyline and gabapentin in with it. The pains were getting worse and worse and my drugs were still being increased.
The shock-like pains went from sharp twinges to a volley of shocks - at its worst up to 50 shocks, one after the other in the course of an attack, with an attack lasting minutes. The pain was so severe in each attack that it would take my breath away and leave me completely drained.
I would have to concentrate on my breathing and on fighting back tears, as they would set off another attack as they rolled down my cheek. The attacks prevented me from doing so many things. I couldn't chew my food, or drink hot or cold drinks - everything had to be lukewarm. I couldn't wash my face or put on any make-up. I couldn't brush my teeth and even just swirling mouthwash around my mouth would set off an attack.
For nearly three years I wiped only the right side of my teeth with a soft bristle brush and would mix mouthwash and warm water to splash into the left side of my mouth. I couldn't wear my hair down because when it brushed my face that would set off an attack.
I couldn't go outside in cold or windy weather or take my children outside to play. I couldn't talk and I would walk around with a pen and paper so that I could communicate with people. I couldn't use the phone at all; I had a code with my parents that I would call and put the phone down if I needed them to come over. And they would drive a 50-minute journey to make sure I was okay.
I would use text and email as much as possible. It makes me wonder how people with TN coped before such communication advancement.
But the worst thing of all was not being able to kiss my children, as just brushing their faces next to mine would set off an attack.
It was around this time that I subscribed to the TNA, which meant more information became available to me, together with details of local support groups. As there wasn't one in my area, Jillie Abbott from TNA UK came to Swindon to visit me and discuss the possibility of setting up a support group in Wiltshire. Jillie gave me lots of information and the title of two wonderful books that became my TN bibles - Striking Back and Insights.
I found myself pregnant again in May 2006 and was instantly taken off everything except carbamazepine, which put me into a complete panic that the drugs would have damaged my baby and that I would get even worse attacks. I was put under the care of a consultant obstetrician and her concern was the length of time I had been on phenytoin.
I was put on a huge dose of folic acid and monitored every couple of weeks. Within about eight weeks of being pregnant my TN disappeared as quickly as it had originally arrived. Within 12 weeks my partner was serving with the Royal Air Force in Baghdad and I was alone coping with a stressful pregnancy and the constant fear of an attack, even though I was pain-free and remained pain-free for the duration of my pregnancy.
One of the problems with TN is not just having the attacks and the excruciating pain that goes with that, it's the fear of having an attack, the fear of doing anything to bring on that kind of pain. We teach children, from a very young age, not to put their fingers in plug sockets because they will get an electric shock. Well, living with TN is like constantly putting your fingers in a plug socket even though you know you will get a huge shock.
I was kept on a holding dose of carbamazepine and was prescribed pethadine for sudden attacks. All my children have been very premature and Ruby was no different, although I carried her the longest and she was just shy of full term.
My partner Andy came back from Baghdad on 12th January 2007 and I had Ruby on January 16th. She was, thank goodness, perfect in every way and no harm had been done with all the drugs.
I settled into the routine of being a new mum again and was over the moon that I was still pain-free and on hardly any drugs ...... until I stopped breastfeeding. Just three weeks after I had stopped, the TN attacks came back worse than ever and I couldn't get the drugs back up quick enough to stop the huge attacks I was having.
They were so bad that I would tear at the side of my face trying to rip it off so it wouldn't hurt. I guess this happening so soon after I had had a baby didn't help with my mental state, and I sank into a huge depression and was put on anti-depressants.
The drugs were going up and up and the pains were just as bad. I didn't want to see anyone, didn't want to interact with the children because I couldn't speak properly and I didn't socialize out of the house at all. I had constant trips to my GP for painkillers because I couldn't get in to see my neurologist as I was now back in the NHS system and appointments took longer to arrange.
At one stage, I sat in front of my GP in tears begging him to take the pain away. I would have quite happily taken every single tablet in my house just for some respite. He said he could take the pain away but that I wouldn't be able to lift my head off the pillow and I would have no quality of life because of the drugs he would have to prescribe for me. I told him to do it - I was desperate.
I went around in a drug haze for some time and I can only describe it as acting like a drunk, with my stumbles, slurred speech, loss of memory and lack of social skills. I ignored everyone as I didn't have the energy to try anymore. And on top of this, I was STILL getting attacks.
It wasn't long after this that Jillie Abbott from the TNA called to say hello and see how I was doing, keeping in touch after our meeting. I poured my heart out to her and told her of all the drugs that had been added to my treatment and the fact that I simply couldn't function as a whole person. I was no use to anyone and the strain was taking its toll on my partner and my parents who were caring for my children and me 90 percent of the time when my partner was away - which unfortunately was a lot. A six-month tour of Afghanistan in amongst all this was a huge stress to me and the attacks just kept getting worse and worse.
Jillie suggested that I would benefit from seeing Prof Joanna Zakrzewska, who is the TNA UK's Medical Advisor; she suggested I start by going to my GP to try and get a referral.
That week, I made yet another appointment with my GP and told him that I didn't know how I should go about it, but Prof Zak was the person I wanted to see regarding my TN. I have to say my doctor was fantastic; he simply wrote her a great long letter about me and we waited to see what would happen.
Two weeks later, her office sent me an appointment and off I went up to London. At our first meeting, Prof Zak took me off everything except carbamazepine which she reduced as a new drug, oxcarbamazepine, was slowly introduced. After a long discussion about the pain and the triggers, Prof Zak said that I had classic TN and that I would be a good candidate for an MVD operation, should I want to go down the surgery route.
I dismissed it as not for me, as long as the drugs controlled the pain and kept me relatively free of side-effects. At this stage I wasn't hoping for a miracle, I was just desperate for some respite to the pain. The transition from one drug to another was hard and I can remember feeling so nervous of reducing the drugs I was on - even though I felt terrible, they were like a safety blanket that I couldn't let go of, for fear of the attacks getting worse.
In June 2007, I went to the TNA Conference in Windsor where they had a day of talks and workshops, with surgeons and consultants, about the condition and treatment of TN. It was great having the opportunity to put questions to specialists in a relaxed environment and getting everyone's feedback on all the available information. This, for my partner and myself, was an invaluable day. Mixing with fellow sufferers, swapping stories and ideas was so refreshing as I felt everybody understood my situation.
My partner also found it hugely helpful speaking to other partners of TN sufferers, knowing that he was not alone in his feelings of frustration and helplessness while I was having an attack.
Eventually, I ended up on only oxcarbazepine and the attacks started to get less and less. I was never pain-free and I still stopped myself doing lots of things that I knew were pain triggers; my face would start to twinge and I would just freeze until it passed. My vision was still blurry and my depression was still deep-rooted but I did feel better than I had in a long time - although the fear was still there regarding the attacks.
Unfortunately, it wasn't too long before my dose of oxcarbazepine was slowly increased, up and up as the attacks became stronger and stronger. At its highest I was on a daily dose of 3600mgs and I was terrified it was all going to start again with the many drugs I had mixed previously.
That's when I hit a wall; enough was enough. My children were getting older and my boys were aware that I was always poorly. I wanted to be a proper Mm who could go and run round outside with them and not worry, so I called Prof Zak's office and asked her to put me forward for an MVD. And the beginning of the rest of my life started there and then.
I went and saw Prof Zak and she introduced me to Mr Neil Kitchen to talk about the MVD operation. (I was familiar with the procedure from my own research and communicating with people on the TNA UK forum who had had it - some more than once.) I had a great long list of questions ranging from what's the percentage of deaths to how much hair will you have to shave off!! We spoke at length and when I got home I posted on the TNA forum about my appointment and had a lot of support from everyone on there as I agonized over the decision to have surgery.
I eventually decided to put my name down on the waiting list for surgery in March 2009. I actually did this without telling anyone or discussing it with anyone. I felt it had to be my decision alone and I had to be sure this was the right thing to do. I went and had my pre-op in May and on 6th August I was in hospital ready for the big day.
I was terrified about having it done - I felt guilty for my children and parents in case anything went wrong. I knew they wanted me to have it done so I could have some quality of life back, but I knew they were nervous and worried about it.
My partner was a tower of strength and brave for all of us. I spent the night before the op thinking of my children and hoping they would be okay if anything went wrong and praying to God that if all went well I would do anything he wanted me to, just as long as it was successful.
I went down to theatre pretty much first thing and I don't know how I walked down there as I have never felt so nervous and sick in all my life. I was chatting away and doing as I was told until I was asked to lie on the bed so they could put the drip in my hand. Then I crumbled, crying and shaking ..... and then the next thing I'm aware of is me, lying in bed with a big bandage on my head, and I vaguely remember Mr Kitchen peering over me and telling me that the procedure had gone well and that I was in recovery.
My parents and partner were waiting for me in the ward and I felt ok - tired and drained but surprisingly ok. No pain and no TN! I could not believe it - I was so grateful to everyone involved.
I stayed in hospital for a week and while in there my oxcarbazepine dose was halved straight away and I was told to continue lowering it by 300mg a fortnight, which I started to do later on.
When I got home I was exhausted and I continued to sleep as I had on all the other drugs I used to be on. My mood dipped dramatically a month or so after the op and I remember one day where I just cried and cried and cried.
The recovery time from the MVD alone was very hard and by no means "a quick fix", as it took me about four months just to get over the operation. My drugs were going down slowly and I had no attacks, which was a very strange feeling. I kept bracing myself for an attack whenever I took a sip of cold drink or went to speak.
It hasn't been all plain sailing since my op though. I was treated for an infection and needed antibiotics for a time in September, and at the beginning of October 2009 I started to get TN pain again quite badly. I was so disappointed and again I took a dip emotionally and started to increase my oxcarbazepine again, which was very disheartening.
I also have a large lump on the side of my head, which I am told is a CSF leak that should go away on its own. The good news is that since then I have been pain-free for four months and have managed to reduce my drug dosage to 600mg a day.
Along with this, I have reduced my antidepressants and I have lost over a stone in weight. My mood is light-hearted and fun-loving again. I go out as much as I can, and my partner and I have a normal life together with our children. I have started to re-train and hope to be working for myself again by the end of this year.
I now have a life.
If I hadn't found TNA UK I would still be in the turmoil of the pain and drugs cycle I was in for all those years previously. They gave me information in a format that I understood and could digest; they gave me support throughout the condition; they gave me unconditional friendship and empathy, and most of all they gave me hope.
This Association is invaluable to all those people living with the fear and reality of TN. And while I don't have the courage to say I am cured, I know, no matter what, I can get in touch with TNA UK and not feel alone. Hopefully, I can give something back too by helping others who have joined.
I have yet to set up a support group locally but I have taken several calls from people as far away as Wales and Cornwall in sheer desperation, wanting to talk to someone who, quite simply, just understands what they are going through.
My MVD by Helen Featherstone
The most difficult thing about being diagnosed with TN was coming to terms with the fact that suffering from this intolerable pain was now part of my life. I was only 27 when my dentist explained to me what he thought was causing my face pain. I had been having sharp electrifying spasms in my face for some time; these would generally be short-lived but would occur at any moment. At first I thought it was an abscess, or put it down to over-working and being stressed, and then one day I was in the supermarket with my friend, Jo. I bent down to choose a bottle of hair dye, and was nearly knocked off my feet. The pain came out of the blue, like a bolt of lightning. I couldn't breathe and was gasping for air. Jo was completely stunned and didn't know what to do. Then, a moment later, it went, just as quickly as it had come. The only way I could describe the pain was that it was electrifying. (Not that I have ever been electrocuted but I could imagine that is comparable.) It was torturous. I never knew when it was going to hit and I feared it striking again like I've never feared anything before.
I decided something had to be done. My dentist was hesitant to prescribe me with any medication but he told me my symptoms were practically text-book, except for my age. He also said that some of his older patients had TN and were taking a drug called carbamazepine (Tegretol). He suggested I had a chat with my GP and that I should start taking medication.
The visit to the GP was horrendous. He thought I had toothache and said my symptoms weren't text-book at all; that I was far too young to suffer from TN and that it was highly unlikely unless I was over the age of 70. How naïve he was. I was absolutely devastated. I was getting my pain in short successions, almost two hundred times a day. I felt as if I was going to go over the edge and I really could not cope. I rang my dentist in desperation and he referred me immediately to the Sheffield Dental Hospital.
The consultant I saw, Dr Loescher was sure that I had TN and prescribed carbamazepine. The pain began to subside and I started to feel better, although I hardly felt myself; I was in an absolute daze all the time. I was forgetting words, forgetting where I'd been and constantly losing things around the house. The only way to cope with this was to laugh but it was also incredibly frustrating. Then, after Christmas 2005, around February time when the nights begin to get a little lighter and the days a little longer, my pain began to subside. I was so relieved; I was going into remission and was overjoyed. I started reducing the amount of medication I was taking and began to feel "normal" again. Everyone commented: my eyes looked brighter, I was more alert and my squash game improved tremendously!
Towards the end of summer 2006, it was a lovely late summer's day and I took a trip to a theme park. I went on a ride, "pin ball" I think it was called. It was quite jolty but not excessively fast. My friend, whom I was with, had problems with his jaw and came off the ride, complaining of its aching. I was concerned and we walked a little way up the path. Then it struck. It was just like in the supermarket: a bolt of lighting, knocking me off my feet and stealing my breath. It was back. That summer it got worse and worse. I put off taking the medication as I didn't want to give up my lease for life and feel like a zombie again. In the end the pain won and I went back on carbamazepine (Tegretol).
I hated the medication, I felt as if it took me over. I was so tired and was not interested in anything. The pain was also beginning to really interfere with my life. I was starting to fear situations which previously I'd relished. Eating was always a problem and I love good food and eating out. I also had to build myself up to undertake the most menial of tasks. It could take me hours to get ready for work. Washing my face, eating my breakfast and brushing my teeth were torturous tasks that always resulted in tears and deep breathing. I really couldn't cope again. I walked into Dr Loescher's TN clinic at Sheffield Dental Hospital and just broke down. I was sobbing with frustration. I felt victimised and still could not come to terms with the fact that this pain would not go away. It would always be lurking in the background waiting to strike. It was the most alienating period of my life. I could not express how I felt to anyone. No one knew what I was going through. I felt as if I was in my own little bubble: watching the world go on without my fully engaging in life.
I tried a different medication, oxcarbazepine, which suited me better than carbamazepine. I was less zombie-like and more eloquent than before; however, it was still not ideal. I felt very tired, drained and exhausted. Winter passed again and, just as before, when Spring came, my pain subsided. During Spring 2007, when my pain was not at it's worst, I decided: surgery was the way forward for me and something I wanted to investigate. I had spent the year deliberating over this. Initially, when looking at options with Dr Loescher, I was told that cranial surgery - microvascular decompression (MVD) - was something to consider. I found this devastating. It sounded ghastly. I remember Dr Loescher saying, "One day you will actually want this." I thought she was mad. Why would anyone want a hole drilled in their head?!
After much soul-searching and research I went to see the surgeon, Mr Battersby. He had a very good reputation and was very serious and quite off-putting about the whole thing. Owing to my age, there was a possibility the pain could be a symptom of MS. Before any surgery could be considered, I had to go for an assessment and the medical team had to be certain that I did not have MS as there was a chance that, if this was the case, the surgery would only exacerbate the problem. This revelation in itself was perturbing and I couldn't help but think the worst. After an assessment, it was confirmed that it was unlikely that I had MS. I was now given the all clear to go ahead and consider surgery as an option. By this point I was becoming ever more certain that this was what I wanted. I would try anything to get rid of this pain. Dr Loescher was right - one day I really would want someone to drill a hole in my head. Despite Mr Battersby's efforts, he did not deter me from my quest. I went to see him again in January 2008, accompanied by my mother and my partner, and I was told that if I was certain this was what I wanted, then I could have surgery within weeks. I could not believe this was so quick. After the last few years of going to see this doctor and that doctor, and having this test and that test, I had reached the end of the road. It was time to jump into the unknown.
A few weeks later, I received a call from the hospital asking me if I could come in for a pre-op assessment. It seemed very quick; I hadn't really had time to digest the whole thing. Luckily, I had booked a holiday to Israel which bought me a little time. I booked the pre-op assessment for my return and went into hospital for my operation on Easter Monday 2008.
I was terrified. It felt as if this was it and I could only think the worst - that I might go into the operating theatre and never wake up again. The registrar came to see me that evening and talked me through what was going to happen. I started to cry; it all seemed too much, but I knew that I had to give this a go. I couldn't let this pain get the better of me anymore.
I hardly slept a wink. The hospital was so noisy and I was so worried. I had to get up earlier than the rest of the ward to prepare for my surgery. I think that was one of the worst parts. I was given a robe to put on and my surgical stockings and told to shower and wash my hair - something I would not be doing for a while. It felt quite bizarre and almost like a ritual. A superficial and vain point in the scheme of things was that I was also very uneasy about the idea of having a chunk of my hair shaved off.
The porters came to collect me and took me down to theatre. I felt very sombre and a bit weepy. By this point I was exhausted with all of the thinking and worry and deliberation. I just wanted to get it over with.
I remember going into the anaesthetist's room at 9.00am. They were wonderful at putting me at ease and although it was slightly uncomfortable they undertook the process of sedating me as if it were a beauty treatment. The last thing I remember was talking to the anaesthetist about diving in Mauritius.
I woke up at about 3pm in the high dependency unit. I had been through this moment so many times in my head. I remember gaining consciousness, and being aware that I could feel my hands, move my feet and hear sounds on the ward around me. Slowly I opened my eyes. Everything seemed in working order. A big fear had been that I would lose my hearing or have temporary visual impairment. I remember feeling so alive and lucky. I really could not believe it. Everything worked and, apart from being in a cushioned morphine haze. I felt fine.
The sister asked me how I was and the surgeon came to do some sensory tests. I had a blink reflex which apparently was very good news. When I sat up I was sick from the anaesthetic and, although not pleasant, this was not as bad as expected. I had heard horror stories of people being sick for days. I just felt as if I was quite hungover. I had also acquired a series of tubes, the most inconvenient being the lumbar puncture and the most painful being the deep one inserted in my right wrist.
My family and friends starting coming to see how I was. I couldn't turn my head to the right and I felt rather stiff but the overwhelming feeling was that of euphoria. I had no pain and no severe side-effects. I felt so lucky.
I was completely bed-ridden for the next two days. On Thursday I saw the physiotherapist and did a short walk to the end of the ward. My spatial awareness was a bit shaky, and having restricted head movement didn't help, but I started to manage to get to the toilet on my own and could get out of the bed and into the chair. I was making good progress. On the Friday the registrar granted me weekend leave. What a luxury! It was so nice to be back in my own home, with my family and my own bed.
I returned to the hospital on the Monday and stayed there all day but was allowed home again in the evening. I had to return on the Wednesday to have my stitches removed. I had sixteen stitches and anticipated this would be a rather painful experience. Although it involved a bit of pulling and tugging it was actually OK. In a few days' time I would be allowed to wash my hair! I couldn't wait. The longest I've ever gone without washing it was for two days; I've never been good at the natural look. I'd opted for head scarves, which also hid the loss of hair, although the surgeon had done such a good job in concealing this: unless you looked closely, you couldn't tell - it was just like having an undercut. In the grand scheme of things, my hair loss now seemed trivial.
Almost a year on - well, nine months later - I feel fantastic. I have had a few tweaks and twinges, reminding me that there is something not quite right, but no pain like I felt before. I've lost over a stone in weight, as the medication had affected my metabolism, and I also now have a new zest for life. I am much more active; I have taken up cycling, which was an impossible thought with TN because the wind on my face would have been agony. I've enjoyed my first winter in several years. I feel liberated to stand outside in the bracing wind and feel the rain on my face. The transformation in my quality of life is immense. I realise someday there is a chance that my TN will return but I now feel much more equipped to deal with that, if it happens. In the meantime, I intend to make the most of being pain-free.
Quite early on in my diagnosis I started to search the internet, looking for any information that could provide me with more insight into my condition. I came across the TNA UK website and signed up immediately for the forum. I couldn't believe that there were this many people, online that I could chat to, who understood what I was going through and who could offer support. I joined the Association and began to receive the newsletters which also helped, and gave me a much better understanding of TN and the options available. I also found it very interesting to find out more about the possible causes of TN.
I am now Regional Support Worker for Sheffield and Manchester and I would be happy to discuss my experience.
Posted 23 January 2009
