It started June 2010, a pain that radiated up my neck into the back of my head with a mild frontal headache. It felt as if the nerves in my neck and head were inflamed and there was a horrible feeling of pressure. It wasn’t like any headache I’d ever had before as most of the pain was in my neck and there was more pressure than ache.
At the time I had a bad cold so I just put it down to being congested and thought it would go away once I’d recovered. I was used to headaches. I’d suffered with migraines since the age of 11 and had one or two a month for years until I discovered peppermint tea in an alternative remedy book and started drinking it. Then the migraines disappeared. In all that time, I had never taken a pain reliever. I just went to bed in a darkened room, put cold cloths on my head and waited the 12 hours till it was over. The pain was severe, but it still didn’t tempt me to use pain relievers. I knew it was self-limiting and it would go away on its own.
That’s what I thought about the strange new headache -- that it would go away by itself. I was wrong. After several weeks, it was still there. I remember thinking that I wanted to drill open my head to release the pressure. There were days when I couldn’t work because looking at a computer screen made my eyes hurt and the hyperacusis (hypersensitivity to sound) I used to suffer from came back with a vengeance. Whenever my neck really hurt, I couldn’t bear any noise. Even people talking felt like someone scraping their nails on a chalk board. My instinct told me that my audial nerves, that lead from the ears into the back of the head, were swollen. I went to my doctor, and he agreed. He said that mucus from my cold had probably worked its way to the back of my ears and that might have caused the irritation. He gave me a decongestant and an anti-inflammatory.
I decided to take the treatment, having already suffered for weeks. It took longer to help than I thought, but after another five weeks of taking the medications every day, I was better. I thought that would be it. I was wrong again.
I had a month or so with no pain and then it came back again, so I went and bought more medication from the chemist and asked to be referred to an ENT consultant. Not having a car, my toddler and I got up at 6:30 a.m., and made an hour-long bus trip across town to reach the hospital, to then sit in queues with other patients for another two hours. The consultant, a young-looking man, didn’t listen to me at all when I told him my hearing was only affected when I had neck pain and when the neck pain and head pressure resolved, so did my sensitivity to sound. He informed me that the pain was muscular, when I knew it wasn’t. The sharp, stabbing nature of nerve pain is completely different from muscle pain and I could feel in my own body that there was inflammation. He insisted that the neck issue and ear issue were two separate conditions when I knew they were interlinked and he refused to investigate, other than to run hearing tests that determined I had hyperacusis, a fact that had already been established years earlier.
I left the hospital upset, feeling disempowered and angry that I wasn’t believed and went home to continue taking my medications. The pain would go and I’d feel fine, then it would happen again. The intervals of normalcy became less and less.
Nine months later I realized I’d got through a whole packet of anti-inflammatories in a week. The pressure in my head was so bad it woke me up in the night and the next morning I was in so much pain I could barely move my neck and kept asking my children to talk quietly. A horrible thought entered my mind. Maybe I had a brain tumor? Perhaps that was why this headache and pressure wouldn’t go away? I looked at my son, only three years old. He needed his mommy. I decided not to work that day and went straight to the doctor.
I didn’t mention the word tumor to the doctor. I didn’t want to seem like a drama queen, but when she got out her light to shine in my eyes, I knew that’s what she was thinking. I knew that patients can show signs of one through an eye exam. She got me to follow her fingers, and asked me if I could see them okay.
She then took my blood pressure. If the blood pressure is too high, that can cause pressure in the head. Mine was fine.
Eventually she told me what was plaguing me all these months. The good news was, I wasn’t dying. I had neuralgia, a condition of autoimmune origin in which nerve fibres cause pain. The bad news was, it could be long term. I was both relieved and devastated.
Then came the problem. The treatment for neuralgia, said the doctor, was either high dose anti-inflammatories, antidepressants or an anti-convulsant called Gabapentin. Anti-convulsants and anti-depressants affect the nervous system and can shut down nerves, which is why they are used for nerve disorders. But I reacted with numerous side effects to previous doses of antidepressant, including shaking hands, drowsiness, vomiting, and a racing heart beat so I had to stop using them.
I would have opted for the higher dose anti-inflammatory, which was probably less dangerous, but the doctor said it was better to prevent the pain rather than treat it, so she wrote a prescription for Gabapentin, without asking what I thought. She didn’t ask about my medical history or ask if I was taking any other medications or supplements. I was taking glucosamine for joint pain caused by cerebral palsy (and it worked like a dream).
I picked up the drugs from the chemist and went home to read the patient information leaflet. I was surprised to find that the pharmacist hadn’t included one in the box. So I looked on the internet, and found that Gabapentin interacts with glucosamine and can make you have less of the drug in your blood. Okay, but not if it stops it from being therapeutic. I wasn’t about to stop taking glucosamine. Since using it, I could walk without pain, sit on the floor and get into taxis without a ramp, all of which was impossible before I discovered it.
More worryingly, I have a history of depression, sometimes severe, and I found information on Medline Plus that indicated my mental health could change in "unexpected ways" and that I could become "suicidal." The description went on to say I would need to call a doctor if I experienced a list of symptoms that included sleep difficulties, anger, mania, violent behavior or a preoccupation with death or dying.
Is it really acceptable or safe to give this medication to someone with a history of depression, when 1 in 500 people become suicidal after taking it? Surely someone with my history would be pre-disposed to having such a reaction? That would make the cure worse than the disease.
I put the drugs away and now I am sitting here wondering what to do about my neuralgia. I do know that doctors have a responsibility to ensure their patients aren’t contraindicated to the treatments they prescribe and that I will be doing more research on neuralgia before I decide what I will do.
Source: Medline Plus - http://www.nlm.nih.gov/medlineplus/druginfo/meds/a694007.html
Joanna is a freelance health writer for The Mother magazine and Suite 101 with a column on infertility, http://infertility.suite101.com/. She is author of the book, 'Breast Milk: A Natural Immunisation,' and co-author of an educational resource on disabled parenting, in addition to running a charity for people damaged by vaccines or medical mistakes.