I am not sure what harm a cannabis spray could do, though there isn’t enough research yet to back up the myriad claims made for it. It is the current internet-fuelled panacea for all neurological ills, with claims of successful treatment of everything from Parkinson’s disease to MS to back pain and headaches. ‘Whatever works’ is my mantra, but I am sure someone is making a lot of money out of a treatment that has yet to be proven.
Patients or the families of patients with severe MS regularly ask about stem-cell transplantation. Family members will offer to remortgage the house to pay for it, such is their desperation and eagerness to help. Stem-cell transplantation has shown serious promise for the future but it is still in its infancy in terms of treating most people with MS. I have yet to see a successful outcome from stem-cell therapies in private clinics abroad that are advertised on the internet. I have advised many people not to travel for these prohibitively expensive treatments; procedures can cost up to €80,000. Often they and those who love them will mount high-profile fund-raising drives to pay for their trip. Inevitably they return to me for conventional treatment. They never agree to my requests to go back online to point out the pitfalls so that fellow sufferers are not similarly deceived. I’m not sure it would matter if they did. One man I advised against travelling pulled out his wallet, took out a photograph of his four young children and said, ‘Look, Doctor – I have to do anything I can to be there for them, regardless of scientific proof.’
What can you say to that? An MS diagnosis from a neurologist leaves so many questions unanswered, it’s understandable that people want to try whatever is out there.
I have sent the occasional person to reputable UK clinics for this procedure. These were cases where we had tried and failed with every other treatment option and where the MS was still very active despite all of our attempts at therapy. Sadly, so far it has not been effective for any of my patients. In the right hands, with patients that get treatment at the optimal time, it can be successful, so the future of transplants looks much brighter than even a few years ago.
I guess cognitive biases push us to google what we want to read and I tell patients that I do not blame them in the slightest. I even wonder whether I will follow suit when my own neurological diagnosis is made. After all, I have diagnosed many a doctor with motor neuron disease, MS or Parkinson’s and they seek alternative therapies almost as much as non-doctors. I don’t blame them either, as hope is an extraordinary thing and I no longer underestimate the power of placebo effects as I once did.
It seems to me that many people’s attitude to medication – for MS and other conditions – is formed by their need to be in control. As I mentioned earlier, time and again when I take a history, and ask what medication a patient is on, they don’t mention vitamin supplements or complementary therapies. But people spend small fortunes on largely unproven complementary and alternative therapies, and yet baulk at the suggestion that proven medication, which the state will provide practically free of charge, might help them more. So I have concluded that this is about control: medicine is prescribed by a doctor and supported by medical research that can be quite technical and inaccessible, and alternative therapies are self-prescribed by the patient based on their own research, anecdotal and online. And even when someone with MS is doing very well on state-subsidized medication, it is not uncommon for them to attribute their well-being to their regime of reiki and Pilates. Again, whatever works.
On a related note, patients commonly ask, sensibly, what side effects the drugs I might prescribe could have. And I usually explain that the first effect will be, hopefully, to alleviate their MS symptoms, their headaches, their pain or their seizures. Then I’ll list the most common reported side effects, thereby risking the ‘nocebo’ effect, where describing potential side effects leads to a patient being more likely to experience them – and thus being less likely to take the tablets and benefit from their positive effects. It is a difficult line to walk when trying to help someone, while still giving full disclosure and risking scaring off the poor patient altogether.
This preoccupation with side effects applies to all patients equally, most remarkably young people, who will list off all sorts of illicit drugs they’ve taken over a weekend of partying at a music festival: ketamine, ‘a few E’, a little cocaine and several buckets of alcohol. They may even realize that this overindulgence has caused the fits that have brought them into Casualty or into my clinic. And yet they ask suspiciously about the potential side effects of the anti-seizure medication I prescribe. At such moments I like to imagine them shouting over the blaring music, interrogating their dealer about side effects as they hand over pills or some other mystery substance.
Abnormal reactions to medication are not uncommon, so we always check if a patient has had any allergies to drugs in the past. One of the most important discoveries in the twentieth century was penicillin, and Alexander Fleming would be turning in his grave to hear people casually respond that they ‘might have’ had a reaction to penicillin when they were younger. As a result, for the rest of their lives, they will not be given one of the greatest drugs medicine has to offer for fear of causing harm. As drug allergies can make it difficult to find the right medications for patients who need them, I always urge students to probe deeper as to what each allergic reaction was; it may turn out not to be a true allergic reaction – someone simply felt nauseous after taking a particular antibiotic or painkiller. That’s a risk we – and likely they – would be willing to take to save their life, or to help treat a serious disease.
13
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A PAIN IN THE HEAD
Mark was forty-five years old and had migraine headaches ‘twenty-four/seven’ for over twenty years. Your heart sinks as a young doctor when faced with such a story, but the more experienced physician relishes the challenge of such a case. Disregarding the constant pain, he had held down a steady job in finance. His last few years had been very stressful at work and his migraines had escalated in severity and frequency. He had recently separated from his wife and blamed his marital problems on the irritation caused by his constant pain. He blamed the stress at work as the cause of his migraines. He drank to help alleviate the stress. The drinking was negatively affecting his migraines and his marriage, and on it went. The vicious cycle had led to his life falling apart. ‘If only I could get the migraines under control, everything would be OK.’ His single-mindedness in the face of his illness meant that he was taking no responsibility for the knock-on effects that he had some control over. The idea that the rest of his life would fall back into place once his headaches were cured was fixed in his mind.
He had started taking paracetamol with increasing frequency and moved on to Nurofen and then Solpadeine. By the time I met him he was taking some sort of analgesia three or four times a day.
‘Do they help?’ I asked.
‘No, it’s like taking Smarties.’
Mark had sought help from various doctors over the years and, obviously, because he was coming to see me with a twenty-year history of pain in his head, things had not gone well. Mark clearly did not like doctors, but I think at this stage Mark did not like anyone. He was angry and frustrated about his headaches, but this was translating into an anger and frustration at his entire life. While he continued to take the over-the-counter painkillers, he also had resorted in recent years to the internet.
I listened to Mark as he showed me page after page of the research papers he felt I should read so I would understand the particular details of his predicament. He had a beautifully organized, colour-coded, Excel spreadsheet for the preceding six months outlining the pattern of his headaches. He had converted his ‘data’ into both bar graphs and line graphs. ‘I could do a scatter plot for you if you would find it easier,’ he offered helpfully. He had a low-grade pain all the time (‘the blue line, Doctor’) but superimposed on his pain were disabling pains (‘the red line’) that took him out of action for days on end. He was going to lose
his job, his wife, his children – he was at rock bottom.
He spoke quickly and appeared, initially, to have no interest in what I might have to say. When he had finished speaking he exhaled heavily, looked at me with a challenging stare and said, ‘That is my story, what can you do for me?’ He held my gaze for longer than was comfortable and, if I am honest, I felt a little threatened.
I looked over his spreadsheet and complimented him on his thoroughness. ‘I’m a financial analyst – this is what I do,’ he said. It is so interesting to see people like Mark drawing on their area of expertise to try and regain control over their medical problems. A librarian, for example, will similarly have organized charts detailing the arc of their symptoms. A doctor, on the other hand, may be the least pragmatic about their symptoms, and jump to their own diagnosis. It is then my job to try to confirm or refute their conclusions.
Neurologists are pretty good at treating migraines with medications both for the acute attacks and to prevent attacks when they are frequent and severe. But it is not as simple as that. Mark is a good example of the multifaceted approach one must take with any patient when looking at the physical, psychological and social ramifications of their illness. Even the most amateur anthropologist could see how muddy the waters of Mark’s problems had become. If someone is taking over-the-counter painkillers on more than fifteen days each month, they will get ‘medication overuse’ headache. In other words, the so-called cure is at least part of the overall disease. The Solpadeine takes the edge off the pain temporarily but, as the effects wear off, the person gets a rebound headache that will prompt a need for more pain relief. Over time they become gradually physically and psychologically dependent on these tablets. With the dependence on medication people will become anxious and their sleep patterns more erratic. Now tired and despondent, some, like Mark, start to drink to help them sleep. Plainly, too much alcohol leads to more headaches. So poor Mark had a combination of migraines, hangovers, medication overuse headaches and sleeplessness. And that is before you consider day-to-day migraine inducers like the pressure of work and the trials of life in general. Mark’s life was falling apart over what his friends and family could only see as his ‘bad headaches’. And as their reserves of sympathy ran out, Mark became isolated, depressed and ultimately very bitter.
I explained that I felt I could indeed help him, but that he now had four or five problems beyond his migraine and we would have to break each one down and tackle it separately. The easiest one was that he was taking too many ‘Smarties’. When he admitted that they weren’t working anyway, I asked why he bothered taking them.
‘If I don’t, I’ll be in agony,’ he said, so it seemed they were helping some of the time.
Mark saw the logic in what I was proposing and his attitude changed quickly. We agreed he would start by weaning himself off the Solpadeine and other painkillers over the coming month.
We skirted around the question of alcohol. ‘I don’t drink that much – a few glasses of wine with dinner and pints at the weekend,’ he said. And then, to his own surprise, he added, ‘That’s too much, isn’t it?’ I suggested he try to cut back.
We discussed ways to try to improve his sleepless nights without alcohol and I gave him broad guidelines for sleeping better (e.g. taking a gentle walk after dinner; cutting back on caffeine; making a list before retiring to try to minimize the raging thoughts that wake us all in the middle of the night; keeping screens – phone or TV – out of the bedroom).
‘There are other things we can do,’ I said. ‘You grind your teeth and clench your jaw when stressed, and we can see from the examination that this has caused laxity of the joints around your jaw. Now you will have more pain in your jaw joints contributing further to head and face pain.’
‘Oh, my dentist spotted that and gave me a splint [like a gum shield] to wear at night years ago.’
‘But do you actually wear it?’
‘No, my wife felt it was, shall we say, offputting.’ He smiled at last.
We agreed he would give it another go, and ticked another potentially fixable cause of his chronic head pains off the list.
We were making progress. This is more than half the battle in my view – gaining the patient’s confidence and restoring hope that they don’t have to serve a life sentence of pain. It was not going to happen quickly I warned, as, after all, he had had headaches for over twenty years. Rather than an immediate cure, we could realistically aim to improve things by 50 per cent over the coming months.
‘Months!’ he said. ‘I don’t have months – my wife threatened to divorce me if I didn’t keep this appointment today!’ (He genuinely had given up on doctors, and had planned on not showing up for the appointment with me.)
On we went down the list. Next, I would arrange some physiotherapy for the tensed muscles of his neck. Finally, I asked him to continue his record-keeping, albeit a tad less obsessively. ‘Only fill it in once a day, just before going to bed. Identify the different types of headaches you have had, and see where we are making progress, and where we can do better. Make it more Roald Dahl and less Dostoyevsky,’ I said. Finally, he laughed.
I recommended some anti-migraine tablets that he hadn’t tried before as a preventative. He was now buoyant, bordering on elated. Having a plan was everything. The man liked a well-conceived plan, after all. It is crucial for people with chronic pain such as Mark’s to give not just hope, but a sense that they have regained control of their lives. Mark was determined to try anything, but in my experience this uncomplicated approach works for the majority of people with chronic headaches.
Mark returned a few months later a different person. He was smiling and shook my hand vigorously. He looked healthier and explained that he had followed the plan to the letter. He had a pedometer on his belt and when I asked him about it he said he had been recording over 15,000 steps a day. He still had some headaches, but no longer felt that they were the end of the world. The physiotherapist was marvellous, he said, and she released all of the tension in his neck.
As happens with many middle-aged men, he had gone to extremes. In my experience it is a typical man thing to try to reassert their alpha male status, at least in their own minds. They will listen to doctors but only to a point as many do not like being told what to do – especially by a man of their own age. Whatever advice I might give, the middle-aged man will ‘double the dose’. If I suggest they go for an evening walk instead of watching television, they will go out and buy some Lycra and start running as if they were teenagers again. If I suggest a low dose of vitamin D, for example, for people with MS, the middle-aged man will take three or four times the dose suggested.
Mark joined a gym and had taken up running every night; he had given up dairy again (I had not advised this …) and was studying mindfulness (… nor this); he had worn the dentist’s splint and cut out all the non-prescribed drugs he had been taking for years.
In addition, he admitted shamefacedly that having read the instructions on the medication I had prescribed he had decided to try to do without it – another typical bid to reassert control. I rarely push it if people like Mark don’t want to take medication for migraines – if the pain is bad enough, I reason, then they can come back to my ‘potions’ if they need to.
‘I still have headaches about once a week, but I can see the progress I have made and aim to take on the second half of the pain over the next three months,’ he said. Now, with half his pain eliminated, three months didn’t seem such a long time to hope for a resolution. I knew he would not be fully cured, but now he had the tools to manage the chronic headaches, and more importantly he had regained control of his life.
Not everyone with chronic headaches embraces the treatment regime that Mark did. Many fall back into old habits after some small initial victories. Some people with chronic headaches give up on conventional medicine. Such is their desperation that they will take advice from anywhere – online, friends, colleagues, fellow pub-goers – on the scantie
st of evidence. Usually, they give up dairy first. Then they will take on all sorts of other dietary restrictions. This is often followed by supplementing with St John’s Wort and Butterbur, for which there is a little evidence of effectiveness for some people, though it’s not very scientific. They wear copper bracelets to ‘ward off’ headaches. Inevitably they will try acupuncture and variations of reflexology. I’ve heard an increasing amount about cranio-sacral therapy of late. And yet, here they are, sitting in front of me looking for a cure. But you cannot fix everything that contributes to the problem, and nor is it a doctor’s job to do so – Mark’s marriage never recovered, for example – but you can at least point them in the right direction.
14
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COPPERS ON A WEDNESDAY NIGHT
Most of us get band-like pressure across our foreheads from time to time when our work or home lives become overwhelming. We take a couple of paracetamol and get on with our lives. For a significant proportion of people, however, headaches can be much more severe and sometimes totally incapacitating.
Pain in the head is different from, say, a pain in the knee or the shoulder, for the simple reason that we cannot examine our own heads very well; we cannot see or massage the injured area satisfactorily. Beyond this, the brain within is what makes us who we are, what makes us human. As central as it is to our own identity, the brain is in many ways the great unknown, and thus people’s fear may be that pain is the beginning of a fatal illness.
There is astounding variability in how each person suffers with headaches. Some people get fairly mild, infrequent migraines, whereas other people’s lives can be ruined by recurrent headaches. Classically someone might get a visual disturbance called an aura and see twinkling lights around their field of vision. This can be followed by difficulties finding the words they want to say; weakness or tingling in their arms and legs; mild confusion; some even appearing detached from their surroundings. The majority end up with a severe throbbing pain on one side of their head. They become sensitive to light and intolerant of noise and have to retire to a dark room and try to switch off from the world while they suffer in silence. I have seen many people in Casualty with such severe headaches that we suspected (as did they) that they might have had a stroke, but the scans were almost always clear.
Just One More Question Page 9
