Migraines have been a part of my life for over 20 years, by this I mean that I have had episodes of these types of headaches, sometimes in clusters over a few days but my main reason for them being such as part of my life is that my husband is the one who suffers. He feels completely drained, goes grey in pallor, feels sick, cannot eat but mainly just has to go to bed for the day, or more. This condition has plagued him throughout most of his 30 years in the Police, into his retirement and pursued him into his new job that he started in 2018. He always refused and continues to refuse to take time off, even though he should have taken time to recover on many occasions.
This approach to work is admirable but the impact on us as a family has also been significant. Derm would struggle though his shifts and now the college day in his new job and then quite literally collapse at home. He would be absent even when present, with a pained expression on his face, concentrating, talking, engaging all too much for him. He would be short tempered and easy to irritate. Planning was and still is a nightmare, never knowing when it would strike him down.
The children have learnt that if Dad is grumpy he probably has a bad head and is best left alone. I have to continue. For example and this is one of many examples, we had an 18th Birthday celebration in Centre Parcs in Bedfordshire this January but Derm felt too unwell to even make the journey. So, off I go driving down to Bedfordshire with my 3 children. We had a good time but Dad was missing once again, a spectre in he background, losing out on memories and experiences as a family once again.
Today the 12th May 2019 was another example. We had arranged to go to Be Military Fit (BMF) in the park as usual and then Derm would take Eric to a local pub to watch Manchester City play. BMF did not happen for him, kick off was at 3pm but he did not get out of bed until 4.15. I encouraged him to go and find Eric in the pub as he had been taken by his older sister but then left on his own at 4pm as she was going to the cinema. This plan was not met with any joy! But I felt that Eric had been looking forward to some time with Derm and also should not be left in the pub on his own…I hate football as much as Eric loves it, so I refused to feel guilty because I do everything else!
It struck me that this was yet another day missed of life. It was beautiful outside, sunny and not too hot but I spent all day in my smelly workout gear because I did not want to disturb him by having a bath in our room, on my own, doing housework of all things! ( hate housework nearly as much as football!). I too have lost a day…one of so many and as I reflect I realise that any spouse of a person with a chronic condition also suffers a similar fate. their lives are dictated by the rhythm of their partner and how they are feeling that day/week/month. This side of life is not really looked at because it feels selfish (and indeed I do feel self indulgent writing this blog) to bemoan the impact on yourself when you are not the one afflicted by the migraine, chronic fatigue, depression, anxiety, alcoholism…the list goes on. But affected you are.
Migraines are a chronic condition but there seems to be no cure. Temporary respite from certain interventions may occur but the brain seems to find away around these manmade blockades and rerouting to make itself know again in stereo. Derm found 6 month release through acupuncture but then the affliction returned. Imigran helped for a while but then they cause rebound headaches. Most medications have side effects and one that he had prescribed through a private consultation and a private prescription led onto SEVERE depression and suicidal thoughts.
He stopped that straight away but it took a good 5 months to recover and still he is on medication for the depression that it seemed to trigger. Other medication led to issues with the urinary tract, so had to be suspended again. Food is not a trigger apparently for Derm, it is inherited and is genetic. It seems that our brains crave something when going into pre-migraine mode and encourages us to eat chocolate, red wine, cheese… and then we associate the food/drink with being the because of the pain.
It seems that research is slow in this area. Things he has not tried but has never been offered are listed on Wen MD (1) & other sources referenced below:
4.CGRP Inhibitors: CGRP (calcitonin gene-related peptide) is a molecule involved in causing migraine pain. CGRP inhibitors are a new class of drugs that block the effects of CGRP.
5.Vagus nerve stimulation treatment (gammaCore) NICE say to now safe to use this device. (2)
Everything is so slow and the neurologist always insists that Triptans are the best option but not if you are so susceptible to medication side effects. Derm is worn out by the process and is just living with the condition because to go and seek advice again will require too many hoops to jump through..the GP…the Consultant who will again advise medication..trying said medication and keeping a headache diary ( again)…finding adverse reactions to prescribed drugs…Coming off the medication…seeking another referral…the cycle continues but takes a year at least..and round we go again…
I will suggest again to Derm that it is worth looking at the options now available and just hope that something works and as importantly, continues to work, because this is no way to live when otherwise you are fit and healthy enough to enjoy and embrace life. Migraines are a chronic condition that effects the quality of life for sufferers and their families.
(1) 6 New Migraine Treatment You Should Know About: https://www.webmd.com/migraines-headaches/migraines-new-treatments
(2) NICE issues Guidelines on the new migraine device: The Migraine Trust. (https://www.migrainetrust.org/nice-issues-guidance-on-new-migraine-device/)