ADHD healthcare in the UK is very hard to come by. You can only get It on govt insurance (NHS) basically via something akin to a loophole (Right to Choose), and the prices of private relative to median wage and disposable income render It inaccessible for most.
To put this into context for non-brits I was diagnosed in January after around a 10 month wait after my GP referred me, and still waiting on titration, I was quoted a waiting time of 6 months, and I’ve been following up every month since through every contact form available and still no sign of when this will be okay. I work in the tech sector (software development company) as a mid-level cybersecurity engineer. My salary is in the 70th or so percentile for the UK, and paying private would easily take a quarter of my disposable income after rent and bills.
It sucks to see how people just suffer endlessly waiting. But there is a way to have your cake and eat it too and its called self-medicating. It’s not a perfect solution but we don’t live in a perfect world/system, and for me the benefits to life quality make the hassle well-worth it.
However I was banned by /r/ADHDUK when someone asked whether self-medicating was a good idea and I responded with a list of pros and cons in what at least I thought was an extremely sensitive, dispassionate and balanced manner, and the thread was locked shortly after, with the mods lock comment putting in a final word that self-medicating is “always a bad idea” - a narrative that seems not at all accurate in my view.
To my shock though this didn’t seem to be just a case of power tripping mods, but an overwhelming community consensus as well.
Coming from the trans community where self-medicating to transition is arguably almost more common than receiving genuine medical care due to various failures and malice on behalf of the government and the healthcare system in the UK, I am somewhat shocked people had such a negative view of even the idea, and that it seemed fairly common even across the ADHD space as a whole. Honestly I started self-medicating about as soon as I put the referral in, I knew I had ADHD, the diagnosis etc. is just hoops for me to jump through.
So I’m curious what is the outlook in this community? Positive? Negative? Neither? What do you think of self-medicating and why?
The problem I have with self-medication (of ADHD meds or any other substance) is not so much that people are doing it - as you said, it’s a rough world out there, and you do what you can to survive and function.
But - “Medical supervision of treatment” is (or should be) not just a couple of empty words. All ADHD meds can have serious side effects and contraindications that you don’t necessarily know about beforehand or notice by yourself. Discovering your un-diagnosed heart disease by taking amphetamines without supervision and getting life-threatening arrhythmia can just feel like “I’m getting a bit dizzy for a time after taking the meds, no need for concern, I’ll just take it easy” (I know, because I have arrhythmia, and wouldn’t know it if I hadn’t had an ECG, as I barely notice it happening). Medical supervision should catch that kind of thing, that’s what it’s for.
You and I don’t know who reads this and what kind of conclusion they will draw, and what kind of risk assessment they do beforehand trying it out themselves. Giving you the benefit of the doubt that you have done your full research, and are aware that there is a chance you might harm or, if particularly unlucky, kill yourself doing this (especially if you cannot verify the purity of your medication, it could be cut with anything), and have weighed that against the benefits of being able to do work and function better in everyday life, I have no problem with you self-medicating or talking about doing that.
But if you don’t transparently communicate these risks, and how you came to your conclusion that this is the only way for you, it looks to others like an easy way to forgo the harder, non-medical, not-as-effective but also not-as-dangerous ways to treat yourself, implying that everyone can and should do it this way.
And I understand why some communities want to curb that from the get-go. Some rules are written in blood.
Great take.
Is the dizziness by any chance like a one motion sensation?
Like someone pushed your head forward just once for a moment and then it immediately stops? I’ve had this on both Amph and various serotonin things on come up and come down. I do have a pretty fast resting heart rate (always had) but no docs bother to explore it no matter how much I ask because no pain/etc. it only drops below 80 while I’m asleep.
I wouldn’t describe it as dizziness, at least not continuous, but it’s also not quite a brain zap or a brain quake.
Not for me, I literally don’t notice it unless I know it’s happening right now and “listen” for it.
But I’ve been told by other patients that they feel it as light-headedness or dizziness, may feel their heart pounding or like they can’t breath, or like the heart/body skips a step, and if the arrhythmia exacerbates to fibrillation, people lose consciousness very quickly (and may or may not die if untreated). Maybe that translates to your experience, but I don’t know. Generally it’s described more as a continuous feeling for some time, from a couple of seconds up to hours. But it varies a lot. ECG monitoring helps there.
But my specific arrhythmia were also found quite a long time ago, by chance during a standard exam for sports competition fitness as a child. So for pretty much my whole life I’ve been barred from stimulant and basically psychopharmaceutical medication of any kind, since pretty much all of them can cause or exacerbate heart conditions.
Seeing as I totally don’t notice episodes, a scenario where someone didn’t go to that exam and unsuspectingly walks around with that same or similar heart condition completely untreated, and kills themself by self-medicating and slipping into fibrillation is totally possible.
That said, it’s also not a very wide-spread condition, just a rare possibility. Still, please continue to advocate for yourself to have that checked out!
(Edited for an attempt at brevity)