Up until recently I have felt that I have been making slow, steady improvements in how much I can do before triggering a fatigue ‘crash’ or a severe migraine. I’ve been able to push the distance I can walk, how far I can drive, how much time I can spend being a parent / wife / friend / professional vs the amount of time I need to rest. But for several months now I have noticed that these improvements seem to have plateaued and I seem to be stuck in a bit of a ‘boom and bust’ cycle where I slowly push, only to crash and need to spend several days in bed or on the sofa. The rest of the time I spend feeling like I am just about surviving, certainly not thriving. This plateau has seen me re-enter the world of constant research, to try and figure out if there are tests I haven’t had and investigate possible treatments that I haven’t tried yet. I am currently waiting on a second opinion from a neurologist to make sure that the pain I have had in my head for almost 12 months solid now is definitely an intractable migraine, or if something else could be going on. I have been referred to the pain clinic to investigate botox for the head pain since I have now tried cocodamol, meloxicam (a NSAID), amitriptyline, propranolol, gabapentin, topiramate, six different triptans, CBD oil, feverfew, a daith piercing, menthol and peppermint oils, acupuncture, chiropractic, osteopathy and meditation/mindfulness without any relief at all (not to mention the operation I had to remove a sinus infection in case that helped. It didn’t).
I’m also about to start taking a medication that I hope will help my orthostatic intolerance, since I still struggle standing for any length of time but this medication comes with a long list of side effects, which includes headaches – obviously something I really don’t need! So much of this journey to recovery is trial and error, weighing up potential benefits against the risk of side effects which may make things worse. I am still making choices between how much I feel I can push myself and the risk of crashing – sometimes these choices pay off (I went to a fabulous wedding recently where I actually danced! And didnt crash too badly afterwards), sometimes they don’t (I went into London for work on a day I usually work from home and I ended the day in a heap on the floor as it was just too much).
Part of me wonders whether this is it, if I have reached a level of health that I just have to settle for. But I am not ready to accept that, so on I go – driving myself slightly mad searching for that elusive test, treatment or medication that will help just that little bit more and allow me to truly feel like I am participating in my life, rather than surviving day to day.