How can docs be sure? A lot of the alleged "symptoms" would be entirely understandable from someone denied a medication that helps...and I don't get anything like euphoria from taking it...just a cessation of physical symptoms and the mood improvement that goes with that.
The only behaviour that I'm guilty of is testing dosage changes between normal and CR...(and in general I prefer CR... which doesn't sound like an addict's behaviour) but I've NEVER gone above the dose without a docs say-so.
How do I challenge this, without it looking like an "aggressive outburst"?
I am unclear as to whether he means I have it or might develop it. I've asked for clarification.
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But it seems to have more physical symptoms. With the DDS, it seems far more behavioural and I'm wondering how one can distinguish between for example, anger as part of DDS, and anger from having to suffer symptoms that a larger dose could control.
I don't have any of that though...don't gamble, don't speed, under confident if anything and appetite suppressed too. I've spent a fair bit...but all on Parkinson's...a massage recliner, the CUE1+ device and a "FLOW" headset (for possible depression arising from Parkinson's).
Tried them too...Prozac a few years back, Mirtazapine a few years later. Don't help, just make me feel..."grey", as if nothing matters, as if I care about nothing...which makes my mood lower than feeling the highs and lows.
As evidence that I do NOT have DDS...I tried CBD oil but also THC. The CBD oil gave questionable, if any benefit at all. The THC was frankly, awful. It made me confused, anxious, restless and paranoid, with no positive effects at all.
So I stopped it. And I've felt NO compunction, desire or craving to return to it since (6 months or more now).
That doesn't sound like addictive behaviour, does it?
Mirtazapine I stopped in August 2023, don't think I was clear of its after effects until 6 months later.
My specialist has said he won't increase L-Dopa past 800mg a day, citing fear of "dopamine addiction". I am unclear as to whether he means I have it or might develop it. I've asked for clarification.
Dopamine dysregulation syndrome is more often known as impulse control disorder. It is much more frequent with dopamine agonists than with levodopa. Nothing in the spending that you described indicates impulse control disorder.
I believe the maximum daily dosage of levodopa is 2 G and you are a long way from that. Nonetheless, it is better to avoid really high doses of levodopa, if possible. One of the issues is depletion of vitamin B6, which you need to be aware of. Among other things, vitamin B6 deficiency can result in need for additional levodopa. See here for details: healthunlocked.com/cure-par...
To make the existing levodopa regimen work better, you can add an MAO-b inhibitor such as rasagiline, or a COMT inhibitor such as entacapone. Your neurologist should have already suggested these options in lieu of more levodopa. I suggest requesting these from your neurologist, and if you do not get cooperation, find another doctor to work with. If for any reason the foregoing does not work for you and you need more levodopa, simply say you need more levodopa. If you still do not get cooperation, look elsewhere for medical help.
Already on Rasagaline since diagnosis, was on Ropinirole for five or six years before stopping it due to dystonia, tried both the new COMTs, disaster with Opicapone, no measurable effect with Entacapone. Stalevo no different to Entacapone, so reverted to "straight" L-Dopa ...been on it a week, just assessing if my preference for CR over standard release is still true (seems to be, but it's too soon to be sure).
It's not like I don't follow their instructions but for a year now I've been complaining of worsening symptoms, but not increasing my dose. You're the second person to state the two gram limit today, the other being a Parkinson's organisation nurse - but she said it was far easier to get the 2g in LONDON ...in the NW UK where she is (and where I am) it rarely goes over 800!
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