When my son, Jake, was six years old he became very unwell. He was in the final half term of year 1 when he developed a low grade temperature, nausea, stomach pains and headaches. He looked absolutely shocking, very pale with dark shadows under his eyes and completely lethargic. We initially thought he had a nasty virus and after a few days he seemed to be better. He returned to school, but the symptoms returned and he ended up being largely absent from school for the remainder of the school year. Our GP (and my husband, who is also a doctor) struggled to make a diagnosis because his symptoms changed almost daily. Due to his age it was also hard for Jake to describe what was happening to him.
Over the summer holidays Jake became well again and we just wrote it off as a virus that his immune systems struggled to fight off.
Then in year 2, almost a year later, Jake got identical symptoms but stronger. Every time we set foot in a car nausea kicked in, he couldn’t bear bright lights and insisted on wearing sunglasses. Once again the symptoms abated during the summer holidays.
At the beginning of year 3, when Jake was still 7 years old, the illness returned, this time with a vengeance. On a couple of occasions Jake collapsed on the floor clutching his abdomen - I thought it was appendicitis. Our GP immediately referred Jake to a paediatrician who was very thorough and convinced Jake was suffering with childhood migraine. The migraines were clustering which is why the episodes were lasting so long and he was suffering with both head and stomach migraine – I hadn’t even heard of stomach migraine before and these had been a confusing factor as they gave Jake acute tummy pain and a temperature. Jake’s longest cluster lasted from January 4th until Easter Sunday – 4 months – it was awful. The paediatrician prescribed a drug called Pizotofen and initially there was improvement – sadly this was short lived and the clusters returned in full force. Jake was then put on beta blockers, which helped a little but within a couple of months the dose had crept up to 60mg daily and side effects were nearly as bad as the illness. Jake was largely prostrate on the sofa during the day and even taking the dog out for a walk was a logistic nightmare. When Jake was able to attend school he was so exhausted by the drugs he couldn’t concentrate well and was unable to participate in any sports, he was like a zombie and very blue. I had to go in to school daily to pick up work for the core subjects and home educate Jake. We couldn’t get a tutor in as he could only handle 10-15 minutes work at a time, so I had to do little bits throughout the day. If Jake had a few hours where he felt better I would bring him in to school for lessons and to see his friends – something I felt was extremely important for Jake. It was a difficult situation as his class teacher wasn’t initially very supportive, she and another teacher in the school felt Jake was cherry picking his classes, which upset us both. It just created another stress to deal with and my husband and I had to go in to the school to meet with teachers and the head of department to outline just how ill Jake was. I think it was very hard for people to understand that something as commonplace as a migraine could make an individual so ill and be so debilitating. Thankfully support improved after this meeting and I was able to keep the balance with school work. The school Matron was amazing – her daughter had been extremely ill as a child and been on some of the same drugs as Jake, so she really kept an eye on him and the less sympathetic teachers.
By and large friends were supportive, which helped a lot. Some kindly helped me with things like the school run for my daughter, but I felt awful asking the whole time. There were, however, those who couldn’t compute how his illness was impacting on life in general. I was exhausted and found it hurtful if they were flippant or doubting, it really affected some friendships. Those people who were instantly supportive and understanding inevitably were migraine sufferers.
The nausea was the most persistent symptom which caused lots of problems. We could only travel very short distances by car which impacted hugely on us as a family. There were no outings, one of us would have to stay with Jake whilst the other went shopping or dropped our daughter somewhere. We were unable take a family holiday that year, which we all really needed. If a stomach migraine kicked off it could be quite violent and distressing and we were hesitant to leave Jake with a babysitter – it would have terrified them! We were all just so exhausted by the situation. It was an isolating and depressing time
To help combat the nausea the paediatrician prescribed Ondesetron. This is a drug they give children who are undergoing chemotherapy and the initial results were great and we thought we were over one of the big hurdles. Sadly it didn’t last long, and although Jake wasn’t vomiting he felt sick the whole time. I was rapidly losing faith in conventional medicine and was desperately trying anything anyone said had helped their child with migraines, including cranial osteopathy and homeopathy. Nothing worked.
There were then talks of brain scans etc and the paediatrician felt it was time to refer us - Jake went to Great Ormond Street Hospital under the care of a consultant who specialised in childhood headaches. When we met the consultant he was very reassuring and said that Jake’s migraines were probably linked with hormone surges and that he would suffer with them until he was through puberty. Interestingly, his second question to Jake was whether suffered with travel sickness - there’s a strong link but they don’t know why. He held off on the brain scan and prescribed different drug, Imigran 10mg via a nasal spray. This drug helped if we were able to spot the onset of a migraine very, very early. If we didn’t catch the migraine immediately we found ourselves back in the cluster patterns again, so it was a bit hit and miss. When we went for our second visit to GOSH the consultation recommended a procedure which would block the occipital nerve. This involves injections near the base of the skull directly into the nerve. Not a nice procedure with only a 60% success rate. We debated this long and hard and I was just about to take Jake back up to GOSH to talk it through further when all symptoms stopped. It was like someone had flicked a light switch off. No one understood why, the general consensus was that Jake’s hormones had settled down. We gradually stopped all medication and Jake returned to a normal bright and lively 8 year old – it was absolutely incredible. He had missed nearly all of year 3, it had been the most depressing time for all of us and the relief was immense.
Jake sailed through year 4 without a blip and we nearly took the normality of life for granted.
Jake had a brilliant start to year 5 and then one morning woke up feeling ill again. It was all too clear that a migraine was underway. I contacted GOSH and book Jake in. Having had over a year of good health it was amazing how rapidly we all felt depressed and helpless. Jake started to miss a lot of school again and we were plunged back in to a horrid cycle we had hoped never to encounter again.
Jake was two weeks in to a cluster when a friend of mine came round. She is medically trained and when she saw Jake she couldn’t believe how ill he looked. She told me to contact Ian Thirkell at Arc and try a unit on Jake. She briefly explained what the units do and reassured me it couldn’t hurt him and that she felt convinced it would help. At this point I would have sold my soul to make Jake well. I called Ian immediately.
Ian kindly came round that evening and lent us a unit – he was fabulous with Jake and explained how to use the device. Ian was very confident it would help. We put the unit on Jake overnight and when Jake woke up the next morning his migraine had stopped. It was absolutely amazing. I called Ian to tell him the news and he didn’t seem at all surprised! He said he thought he would be hearing from me with good news. I still can’t believe it kicked in after only 12 hours.
We used the unit every night for six weeks and Jake didn’t suffer any migraine symptoms at all during that time. Since then we have just used the unit once or twice a month to ‘top up’. Two years later and Jake hasn’t suffered from a migraine cluster again. Very occasionally Jake will feel a migraine starting, we put the Arc on him and give him the Imigran nasal spray. Within hours the migraine stops and I breathe a huge sigh of relief.
Jake is now a healthy and happy 12 year hold. He is starting puberty and so far there have been no clusters and life has been normal. We keep topping up with the Arc and don’t envisage we’ll ever be brave enough not to.
We don’t only use the Arc on Jake now. A year and a half ago my daughter contracted Glandular Fever and has been battling with post viral exhaustion ever since. She has very sensitive skin and was allergic to the pads and gel on the Arc so we were unable to use it on her. We have since found gels that she can use and have been using the machine regularly on her. Her stamina has improved and she is now back in full time education having previously only been able to manage a few classes each week. I am so grateful, I honestly don’t know where we would be right now if my friend hadn’t thought to get me in contact with Ian.