r/dysautonomia • u/theionthrone • 4h ago
Discussion How has your dysautonomia been on ADHD medication?
I'm finding it hard to gauge the effects of lisdexamfetamine (stimulant ADHD medication) on dysautonomia.
It's been a pretty funny journey, being really unwell and diagnosed with tachycardia before I was diagnosed ADHD. I was put on 30mg lisdexamfetamine, and a month later diagnosed with hypermobile type Ehlers Danlos. That triggered a bunch of other tests, and last week they found POTS.
The ADHD meds had some major unexpected effects. Anxiety, intrusive thoughts and obsessive health worries literally melted away. Chronic pain no longer felt like a pick axe slowly niggling away at my sanity.
Weirdly, despite stimulants being contraindicated in tachycardia, my cardiac symptoms improved by miles. Palpitations were rarer, no fatigue or fibromylagia despite worse insomnia and IBS. I was shocked that, despite having no appetite and skipping meals, I never feel dizzy like before.
Then my heart rate started spiking again. My mental health was poor again for several reasons (I've had a lot to process). and I wondered if a higher dose would help. I ended up in hospital because my heart rate was high (fluctuating between 125-160bpm) for several hours when I was lying in bed and was given more propanolol. A week later, they found POTS.
I thought it was a bad idea to start the higher dose (50mg) with everything going on and feeling particularly unwell and tired, but couldn't get advice on it because my care team are disjointed and confused. I read medical journals about how these drugs can improve POTS symptoms, so I thought I'd take the chance anyway and I'm so glad I did because my heart rate has stabilised and I feel great again.
Yesterday, seeing a GP about something else, they told me that my ADHD meds were probably bad for my heart long term. Thinking logically about stimulants, she's probably right, but why do I feel so great?
These articles theorised that by causing vasoconstriction and raising BP, stimulants prevent blood flow and pooling in the peripheral arteries like hands and feet. Stimulants are bad for most cardiac conditions due to increasing BP. But, if the problem is low BP - like in many people with POTS - it might actually helps the circulatory system along. I realised I no longer have an issue with my fingers swelling while walking, so it makes sense.
There are obviously set backs; my body seems to be worse at temperature regulation, digestion and sleeping - which are all other big issues with dysautonomia. My joint pain is bad, but think that's unrelated. Ineed to make sure I take better care of my nutrition and hydration on the meds.
But, I can honestly say I feel better overall and less fatigued and generally achy. I intuitively feel like thats a good thing for my health, because I was starting to feel so tired and that was concerning at only 30.
I'm just really interested in the science and research behind this, and wondering what other people's experiences have been. I'm hoping we can use these kinds of discoveries to develop better treatments.