Really upset and frustrated about finding the right Vyvanse dose
Hi,
I am autistic with ADHD. Autism diagnosis came first, ADHD 2 years later, soon followed by starting stimulant medication.
Being on these meds has been very positive in many ways but also has been extremely difficult, frustrating, upsetting etc for me. Basically the problem comes down to the fact that I just don't know what the right dose is for me and I drive myself insane trying to figure it out.
I started on 20mg Elvanse (Vyvanse's name in the UK), worked my way up to 70mg and stayed there for a while, not sure how long exactly, maybe a year or so. Eventually I decided to try moving down to 60mg, because I was feeling irritable and angry more often than I would like, fight/flight response, sensory sensitivities etc.
Moving down to 60 made me notice how bad the above symptoms had been for the past year or so when I had been on 70mg, because they were obviously not as pronounced on the 60mg. I could tell the difference. My focus etc seemed just as good on the 60 compared to the 70 too, so I was upset that I had wasted so much time on a dose that was simply too high for me and not even working better than a lower dose. I think I had probably stayed on the 70mg for so long because I basically thought "bigger is better," the bigger the dose the better it would treat my ADHD, which was obviously wrong and ignorant of me to think.
From that point on, I think I became a bit obsessed about finding the right dose once and for all. I stayed on 60mg for a few months but eventually became concerned that I was still experiencing irritability etc, albeit less than on 70mg. I was also worried that being on a high dose of Elvanse was making my autistic traits more pronounced and difficult to deal with.
So for just over 2 months now, I have been on 50mg. I'm getting to the point, yet again, where I'm getting really anxious and worried about whether this is the right dose for me. It makes me feel so stupid because this keeps happening, this situation where I obsess over whether or not a particular dose is right for me and I just find it impossible to tell. I feel quite sure that 70mg was not right, because the physical side effects were so pronounced, but I'm really struggling to figure out what dose I should stick with instead. The difference between 60mg and 70mg feels so much clearer than 50mg and 60mg so it's hard to decide between them. It feels like such a high-pressure, high-stakes decision and one that I have to make right now.
It's so difficult because I really struggle to identify and describe what I'm actually feeling, and my memory is generally terrible, so I also struggle to remember clearly how I actually felt day-to-day on a particular dose, and how that compares to how I'm feeling now on a different dose.
On this 50mg dose, I feel like I barely notice the dose kicking in. I don't really notice a "crash," but it does feel sometimes that my mind is more loud and chaotic at night than in the morning, so maybe that's a sign that the meds are wearing off. I don't remember that happening as much with the 60mg.
With the 60mg, again my memory is terrible, but I do remember being more aware of it kicking in. I would notice increased heart rate etc, which I have Propranolol to help deal with. I also get increased heart rate soon after taking the 50mg dose but slightly less than on 60mg. I would also notice a difference in my mental state, being aware that my mind seems a bit less chaotic than it was 30 minutes ago, I seem more able to pick one train of thought instead of wrestling with 7 or 8 different ones, etc. It's a bit tricky to explain but generally I would be aware that I had taken a particular medication, and that medication was now coming online. I don't remember having "crashes" etc on the 60mg. It seemed to have the same kind of effect through the day. Sometimes I would notice my heart rate increasing again after 4-5 hours, but that was usually because my Propranolol was wearing off and I needed to take another one.
I don't know how to feel about this, because I know some people say that you shouldn't really "feel" the medication, it's supposed to operate in the background and make life easier, so from that perspective the 50mg is the right dose. On the other hand I feel like if I don't notice that dose of medication, and I'm finding it hard to tell what effect it's having, maybe that means it's too low. I find it really hard to tell because currently on the 50s, I am able to get things done at work, but I noticed today for example my interest and ability to focus on work flagging after a couple of hours, at certain points I found myself looking away or thinking about other things etc.
When I'm not at work, I can relax a little bit, but it's like I can never really commit to relaxation because there's always like 50% of my mind thinking about something else, usually worrying about something, sometimes multiple things at once. Often it will be worrying about my Elvanse dose. On the 50mg, this means me worrying about whether I should go back on 60mg. When I was on 60mg, this meant me worrying that it was still too high of a dose, and I should move down to 50mg. I find it really impossible to tell and it makes me feel awful because I struggle to identify my feelings and emotions, my memory sucks, basically I just don't really trust myself to make the right decision and stick to it. It should be really basic stuff to know if I prefer the way I feel on one dose of meds vs another dose but it just feels like this neverending problem for me.
Currently I'm leaning towards going back on the 60mgs but I could easily change my mind again tomorrow. When I was on the 60mgs before, I decided to try the 50s because I was worried that it was still impacting my autism traits, sensory sensitivities, maybe still making me irritable etc. I think those were valid concerns but there's also the feeling that maybe 50mg doesn't help me focus as well as the 60mg, and it's really hard to figure out which of those two options is preferable. It kind of feels like having to choose between being more autistic or being more ADHD.
It makes me so frustrated with myself and feel stupid. Please be kind in the comments because I know I probably seem like an idiot. I am trying my best I just find it really hard to figure out if 50mg or 60mg is best when I'm AuDHD and struggle to identify my feelings.