I sat down to start this blog piece 4 hours and 55 minutes ago. I’d settled into my seat. I’d glanced over at the cup of tea I’d just made, feeling confident that it could lend a stimulating boost to the 30mg Elvanse I’d taken that morning. I’d checked the clock. Almost 12pm. Marvellous! Plenty of time to perfect my first ever blog. I was feeling proud of myself. Almost 12pm meant that it was not yet afternoon. It was technically still morning, and I was definitely winning at life by starting so early. I quickly checked my phone. Ooh. I spy a text message. The beginning seemed a little ominous: “let me know when you arrive”.
Arrive?! Where am I supposed to be?! At lunch with a friend, as it turned out. I thought that was tomorrow. Although, to be fair, I wasn’t 100% sure what day I was actually on anyway. As Google hasn’t yet added the neurodiverse default message of “running late – be there soon!” to its repertoire of auto-responses, I wasted a couple more minutes letting my friend know the surprising news that I would yet again be late. That 30mg really hadn’t cut the mustard. That’s probably because I should be on 40mg. Welcome to the medication shortage.
“I wasted a couple more minutes letting my friend know the surprising news that I would yet again be late. That 30mg really hadn’t cut the mustard. That’s probably because I should be on 40mg.”
Most people with ADHD are currently hunting for pharmacies with medication in stock with more fervency than the Knights of the Round Table looked for the holy grail. Most of us have had about the same amount of success. None. Nada. Carrying on the religious theme, we’re all hoping for a Christmas miracle. All I want from Santa is my prescription to be filled. I’d like him to requisition all the Coca-Cola trucks they have in their seasonal commercial, pour out the coke (it rots your teeth anyway. Who wants the tooth fairy and Santa to arrive simultaneously? Awkward!) and fill them with bottles of Elvanse. And no, I haven’t been good this year. I’m going to blame the shortage for that.
Goodbye medication and hello emotional dysregulation, low motivation and zero focus. It’s been like a visitation from the ghost of Christmas past, shining a light on the horrors on pre-medication days and a vision of an (unwanted) medication-free future. Back to the good old days of crying at the drop of a hat. Just because. Because the theme tune of Marco Polo is just so haunting. Because I burnt my toast. Because I stabbed myself in the eye with an eye liner pencil as I couldn’t find my glasses and thought I’d have a bash anyway.
Which brings me onto the return of… forgetting! I have 3 tablets left, which I’m hoarding to use on those special days when having words come out in the right order, at an appropriate time and without accidentally insulting someone is crucial. I’m supposed to take migraine medication daily. I usually wash it down with Elvanse dissolved in water, a habit a long time in the making, but which has proven to be a surprisingly robust system. Removing the Elvanse has kiboshed it. Last week, on my (potentially) second day of “did I take it?” ponderings, I decided I’d just need to work it out using the classic “retrace your steps” method. Could I see an empty glass of water? Nope. I had no clean glasses, so I’d need to have taken it out of the dishwasher anyway – and there was no gap! As the migraine medication affects blood pressure, I checked it for good measure. Very average. As my typical blood pressure has me one step away from passing out territory, I felt confident enough to assume I’d forgotten, and I took it. As it turned out, that was not the right course of action, but that’s another blog entirely. I was exhausted after all that (and not just from the significant reduction in blood pressure from doubling up). Life without medication is exhausting. A dystopian groundhog day of failing, forgetting and floundering. A return to, as the lovely lady from the brilliant YouTube series “How to ADHD” put it, “failing at normal”. It’s enough to make you cry (copiously) and binge on Netflix (motivation and all that).
“Life without medication is exhausting. A dystopian groundhog day of failing, forgetting and floundering.”
The most pressing question on most of our lips is when the shortage will end. Most of us have been affected, due to the extent of the shortages, which include not the most commonly-prescribed stimulant medications (lisdexamfetamine) but also non-stimulant options such as Guanfacine. We were informed, tentatively, that issues would resolve by December. Unfortunately, last week ADHD UK warned the shortages will likely last until Spring, based upon a recent update from Takeda, the producers of Elvanse (lisdexamfetamine) and Intuniv (Guanfacine). Takeda cited ongoing issues related to increased global demand and manufacturing problems 1.
Like most of us affected, on reading that I felt dejected and incredibly frustrated. The response to the medication crisis has been so poor that at times I’ve wondered if Frank Spencer from Some Mothers Do Have ‘Em has been project managing it. Official advice was for ADHD clinics to contact patients directly regarding the impending shortage. The vast majority of us only found out at our local pharmacy, when they couldn’t fulfill our prescriptions. Only specialists can change our prescriptions, and as they’re currently inundated by patients requesting changes, actually getting in touch with them represents the kind of arduous task we need the medication for in the first place. Reducing or stopping it is more than an inconvenience. It has serious health consequences. 62% of those without medication have reported an increase in suicidal thoughts 2, which is concerning, given we already have a fourfold risk of suicide 3.
The official advice is to hoard our medication and take it on special days, such as those we work on. As most people work the majority of the week, that’s never been the most sustainable of solutions, and is redundant now for those of us on Elvanse, unless our employers are happy for us to work one day a week until then. Plus, most of us don’t want to willingly go on and off medication. Although abrupt withdrawal is most serious for those on Guanfacine, for whom tapering is a must, it’s still no walk in the park. It’s not even just that the ADHD symptoms come back; they also bring some friends along with them in the form of withdrawal, the highlights (or rather lowlights) of which include fatigue, depression, mood swings and sleep disturbances 4. Those only last a few days, but we get to start that vicious cycle again any time we deem a day “important” enough to make a dose from our rapidly dwindling stash.
Spring seems a distant prospect in the middle of winter. We may face more shortages in the future. Despite the attention given to rising demand (thanks, Panorama), the current ADHD medication shortages are part of a wider medication supply crisis relating to manufacturing and Brexit-induced red tape. As many of us have found to our dismay, even in a crisis pharmacists can’t alter prescriptions. A prescription for 40mg Elvanse can’t simply be fulfilled with two bottles of 20mg, no matter how overflowing the pharmacy is in bottles of 20mg, and how constant the maths behind 20+20 may be. Changing this, at the very least, could help smooth out supply issues and spare pharmacists the wrath of hordes of dysregulated ADHDers 5. The official response so far doesn’t appear to acknowledge the seriousness of both our condition and the consequences of removing treatment.
Medication offers many of us sweet relief from feeling that we are either not enough, or we are far too much (often, paradoxically, at the same time) by helping us become the best versions of ourselves 6. Without it, I fear I may be channelling my inner grinch and making an appearance on Santa’s naughty list this winter. Roll on April! (so says me – and probably everyone else!)
– Heidi
References/further reading/links
- https://www.chemistanddruggist.co.uk/CD137786/Pharmacies-field-calls-from-anxious-patients-as-ADHD-med-shortages-persist ↩︎
- Fitzgerald, C., Dalsgaard, S., Nordentoft, M., & Erlangsen, A. (2019). Suicidal behaviour among persons with attention-deficit hyperactivity disorder. The British Journal of Psychiatry, 215(4), 615-620 ↩︎
- Catalá-López F, Hutton B, Page MJ, et al. (2022). Mortality in Persons with Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-analysis. JAMA Pediatrics. https://doi.org/10.1001/jamapediatrics.2021.6401 ↩︎
- https://www.arkbh.com/stimulants/vyvanse/withdrawal/ ↩︎
- https://www.independent.co.uk/news/uk/politics/nhs-brexit-medicine-supply-shortage-b2442211.html ↩︎
- @yourewrongaboutadhd ↩︎
