Dopamine Disregulation Syndrome.

[esorhanna]

I have now been diagnosed with a new disorder; Dopamine Disregulation Syndrome. The diagnosis is based on my rapid progression from initial PD diagnosis in 2023, to now using 18 -20 LD/day to cope with my symptoms. I was also prescribed Rotigotine, 4mg/day, and Rasagiline, .5mg/day. After 6 months on the agonist I developed severe insomnia, along with an overall feeling of being "amped up", and 'hyper-active". I have now quit taking both the Rotigotine as of 2 weeks ago, (a 4 week gradual withdrawal) as well as the Rasagaline, because they drove up my use of LD, and I got no improvement in "ON" times from either. The withdrawal from the agonist was excruciating, with anxiety attacks lasting several hours. I'm hopeful that this may help reduce my LD use.

I have also suspected that I may have been Vitamin B6 deficient, which can be common in high dose use of of LD, due to the metabolic demands of converting LD to dopamine, (which Esperanto informed me about, thank-you Esperanto). I have been unable to confirm my actual levels, but in the meantime I have been supplementing vit b6(P-5P) - 200 mg/day and b12 - 2000mg/day, for about 6 weeks, which has iliminated my deficiecy symptoms.

Has anyone else had experience with Dopamine Disregulation Syndrome?

[Juliegrace]

Are you taking the B6 at least two hours away from your Carbidopa/levodopa?

[esorhanna in reply to Juliegrace]

No Im not, should I be?

[JayPwP in reply to esorhanna]

drugs.com/interactions-chec...

[park_bear in reply to esorhanna]

Yes, you must space consumption of B6 (as P5P, not pyridoxine) and levodopa medication by 2 hours or by a meal between taking them. I've posted extensively about this matter. Here is the overview and summary: healthunlocked.com/cure-par...

[marimar378 in reply to Juliegrace]

If one takes it an hour away with food I think that'll be okay

[Juliegrace in reply to marimar378]

Two hours is better.

[MarionP]

Interesting. Have you seen this:

en.m.wikipedia.org/wiki/Dop...

[esorhanna in reply to MarionP]

Yes, I have researched everthing I can find to try to make sense of this diagnosis of Dopamine Disregulation Syndrome. I don't have ANY of the associated behaviour problems, and I never "crave" levadopa, in fact it usually tell gives me mild nausea. When I take LD it is because my legs start trembling, and I feeling weak overall and usteady on my feet. If I don't take LD these sensations become intolersble.

[LAJ12345]

yes, I’m pretty sure my husband suffers from this. Also his seratonin is dis regulated I think as he can’t take SSRIs without the same symptoms.

His genetic test showed he has very fast dopamine beta hydroxylase which means he burns through dopamine very quickly which produces noradrenaline which I think is what is making him shaky (could be wrong)

[esorhanna in reply to LAJ12345]

That's very interesting LAJ12345, I've never heard of that, and I have not had any genetic testing.

[Edge999]

try removing all sugar and carbs. It helps to more stabilise your dopamine. Eat meat, low carb veg, cheese…

[esorhanna in reply to Edge999]

Yes I wish I could eat more protein but my "ON" time only last's about 2.25 to 2.5 hrs so I can only eat a limited amount of protein.

[esorhanna in reply to Edge999]

I agree sugar is bad, especially in exessive amounts

[YoungPD-48]

Good morning, I have been diagnosed with Dopa responsive tremor, I think its some what similar to yours- am I correct?

Neurologist still cant find right dosages for me, tried different medication though, but one thing I have understood, too much of synthetic drugs in our body is no good, so I have refused to take any more medication, currently I am taking 3 x Sinemet plus + Co-careldopa, morning I take B1 and Macuna tab.. thats it, and try to be happy and positive by doing walking / listening music, working hard from home, meditation and drinking warm water has helped me a lot...try warm water therapy for 1 month and see the difference.

😀

[Discogs_discogs in reply to YoungPD-48]

Room temp or actually warm?

[esorhanna in reply to YoungPD-48]

I've never heard of Dopa responsive tremor, it maybe similar, I don't know. What I do know is that when my levadopa begins to run out my legs start to tremble, I begin to stiffen up, I begin to feel very weak and in a low mood, like mild depression. If I wait any longer and do not take levadopa soon, all these symptoms intensify to the point where I am unable to walk and then the levadopa takes at least an hour to kick.

[YoungPD-48]

warm enough to drink, not hot like tea, whole idea behind drinking warm water is to help your digestive system to digest the food and it will help your kidney to flush out any harmful toxin, but let me warn you, warm water will make you go to toilet frequently to empty your bladder

and stop any soft drinks / cold drinks as well

try for a month and see the difference , you will notice much lighter and relaxed which will have positive impact on your body and mood

[esorhanna in reply to YoungPD-48]

That sounds like good advice, I will try that; I usually drink everything cold, but it's worth a try to see if it helps

[park_bear]

frontiersin.org/journals/ne...

"Dopamine Dysregulation Syndrome (DDS) is an addictive pattern of dopamine replacement therapy use, above the prescribed dosage and those required to control motor symptoms. This therapeutic abuse results in severe motor dyskinesias and psychosocial dysfunction . ...It is associated with younger age at onset of PD, male gender, impulsivity, and sensation-seeking personality traits, psychiatric history of depressive symptoms, and personal or family history of substance use. There are also reports of mania and hypomania"

This does not fit you. You're using an admittedly high dosage, but to control motor symptoms.

[LAJ12345 in reply to park_bear]

This is what I believe happens with overlaying doses during the day on top of natural production at night. Some times the peak goes into a dystonia manic behaviour region , then later as it wears off it goes into a freezing shaky level. The trick is to take enough to stay in the comfort zone. Hubby has found small frequent doses keep him the most comfortable.

He did try the slow release but they were terrible for him as he burned through it way too fast still and ended up in the overdose zone most of the time after taking it for a week.

Now he takes the 50/12.5 madopar tablets 3 hourly with an extra 1/2 between the main doses and that has been good for the last year or so although at the moment he is in another bad patch mentally, with lots of stress at the moment due to various things.

Dopamine fluctuations

[esorhanna in reply to park_bear]

Yes park_bear, that's exactly my dilemma. The main characteristics of DDS are having intense cravings for levadopa, and a history of substance abuse; I have neither. I do know that my parkinson's symptoms began to increase once I began to take a dopamine agonist six months ago. Now that I've quit the agonist and the ragasiline, I have already stopped having insomnia, and a lot of the hyperactive behaviour. I expect to continue improving as more time passes. I am only 6 days into the rasagiline withdrawal, and it's very uncomfortable. As I've been researching dopamine agonist I've found a lot of evidence of that dopamine agonist therapy can cause Dopamine Dysregulation Syndrome, ( patients do not have a prior history of drug abuse, or a psychiatric history, just the precribed use of a dopamine agonist). Here is a link to a summary Abstract from NIH; pubmed.ncbi.nlm.nih.gov/197...

[park_bear in reply to esorhanna]

Right. About 50% of patients who take dopamine agonists over a five year period can be expected to develop impulse control disorder. This is not your problem.

I read your profile and I'm not sure how some of the things I would usually recommend would play with your treatment for multiple myeloma including stem cell transplant. One thing I do believe would be safe and potentially even beneficial would be Qigong, which has benefited me greatly. My story here: healthunlocked.com/cure-par...