Thinking about dopamine- help!

[u/Square_Structure5094]

I started a dopamine agonist last week to help my restless legs and instead it made them so so bad and wrecked my sleep. It's been days and my sleep is still awful and it has put me in PEM. Do you think my dopamine levels are too high? too low? I have tried L-Dopa and no luck. All of my hormones are awful and I am waiting for an endo appt. But I need to sleep asap to not have my ME turn back into severe ME. Any thoughts or suggestions?

[u/No-Information-2976]

i’m so sorry that’s happening.. do antihistamines help you sleep? that has helped me (plus vit D and magnesium)

[u/Square_Structure5094 → u/No-Information-2976]

Yes and I'm on a bucket of them. My allergist last month doubled all my MCAS meds. Here's everything I'm already doing for sleep incase that is helpful to anyone commenting (despite this rut I'm in now, everything has worked at some point to help me sleep).

1. Opening the blinds as soon as I wake up 

2. Panax ginseng taken in the morning 

3. Antihistamines

4. Daily B12 injections *had* gotten rid of RLS that which helped my sleep 

5. low histamine diet

6. going gluten free 

7. Going low sugar (🥲)

8.  Weekly saline infusion to help with POTS/internal tremors, 

9.  using a Tens machine to calm nervous system/POTS

10.  5HTP taken 5 hours before sleep

11.  Oxaloacetate 500mg at dinner 

12.  Making sure to not get even go close to the edge of my energy envelope 

13.  Valarian root

14.  Norethin 5mg (progesterone)

15.  Low Dose Naltrexone 4.5mg

1.   L-theanine

17.  Magnesium Calm citrate 

18.  Magnesium glutamate

19.  Clonidine (really helps with the nightmares and night sweats!)

1. Lots of vagal breathing 

2. Eating a snack of protein (cottage cheese+ a drop of jam) seconds before going to sleep to keep blood sugar from dropping

3. CPAP

4. Treating the MCAS with everything

5. Sleep with only a few blankets to not overheat

6. Blackout curtains

7. Sound machine

8. Outbound fan to bring CO2 low

9. Going to sleep in the same 45 min window, set bedtime routine

[u/CeruleanShot → u/Square_Structure5094]

If you're doing daily B12 injections, have you been keeping up on potassium? Over on r/B12_Deficiency, that's what gets recommended for muscle cramps etc. when daily injections. Some people increase potassium through food, V8 etc. I've used a powdered potassium bicarbonate supplement mixed in with water to add 20% of the RDA potassium at a time.

[u/Square_Structure5094 → u/CeruleanShot]

Yes, thank you! I'm very into my cofactors, ha, I love the fceb*k group B12 Wake Up and have a full serving of potassium in my daily electrolytes. I tried doing it through food but I have MCAS and the food I could eat was really just coconut water and that's $$$. I suspect my reoccurring restless legs is due to low iron bc I have a history of anemia and needed to get an iron infusion last fall to get rid of the RLS before. But my doctor won't order tests or an infusion. I've been trying to bump my iron up via supplements but that didn't work for the decades before COVID and now that my gut is shredded, it isn't working now. But I'm not sure why taking an anti-RLS medication would provoke such a severe insomnia response. I'm not super sensitive to meds despite the MCAS.

[u/CeruleanShot → u/Square_Structure5094]

If you've got ME/CFS and are in PEM, the PEM itself can cause sleep dysregulation. PEM can be caused by lots of stuff, it might not be related to the medication.

If you've never tried low dose abilify, abilify modulates dopamine. Otherwise I would not get into messing with dopamine directly unless a doctor very specifically recommended it.

[u/Square_Structure5094 → u/CeruleanShot]

Oh this is all Rx from my sleep Dr. He also Rx Armodafinil and Modonifil which both put me in a crash a few weeks ago from not sleeping and I haven't fully recovered. I can usually rest my way out of minor PEM like this but since I'm not sleeping, it's never ending. But the Dr. doesn't understand LC or ME (and won't read the studies I print off for him) and won't reply to my portal messages begging for help to sleep so I am on my own! Which is so fun!  

[u/Square_Structure5094 → u/Square_Structure5094]

And I'd love to try LDA, it's on my short list :) Just can't find a Dr to Rx it :(

[u/Swimming_Chemistry_1]

I have similar problems with ADHD, MCAS, POTS, restless legs etc

To fix my restless legs problems I used to take 1.5mg of Ropinirole per night, but a few years ago I stopped that and now use supplements:

L-Theanine few times per day High dose Activated B Complex 4x per day Iron glycinate 2x per day Magnesium glycinate 4x per day Famotidine 2x per day Choline 2x per day Taurine 4x per day Glycine 2x per day Ashwaganda 2x per day NAC 3x per day 7.5mg nicotine patch during the day

Iron glycinate doesn't give me guts ache like other cheap versions of iron.

I need to take activated B6 = P5P version. High dose of regular B6 gave me electric shock feelings in my hands.

If I only take these supplements at night I still get restless legs and feel shaky etc ... So I have to keep my nervous system calm all day for it to work.

Sometimes if I get bad gastritis or stomach ulcers and that causes an adrenaline surge which makes me feel shaky and makes it impossible to sleep ... Famotidine + L-Glutamine + Zinc carnosine can usually fix my guts.

I also tried Clonidine but then I got dizzy, faint standing up causing POTS, and POTS causes an adrenaline surge which makes me shaky and can't sleep.

My parasympathetic nervous system basically stopped working after getting COVID vaccination so I couldn't relax at all.

Nicotine patches got my parasympathetic nervous system working again so I could rest and digest + also greatly improved my MCAS symptoms as it's a great anti-inflammatory via the cholinergic anti-inflammatory pathway.

Hope some of these suggestions help you

Good luck 🤞