Red Letter Day & Update

[Leeserann]

I joined this group 4-5 months ago. You guys are changing my life.❤️ No exaggeration. Your feedback and support have helped me so much in such a short period of time. I wish everyone here could also experience the positive results I've seen in the past few months. Because of the recommendations, resources and data shared, I've learned enough to:

Wean almost completely off the pramipexole (I am now officially down to .25 mg)

Switch to Gabapentin (300 mg - 2 days shy of 3 weeks)

Switched out metoprolol to propranolol (I feel so much better on this)

Take supplements and meds together and away from each other to increase efficacy

I've had all my iron blood work done so I've covered my bases and I'm literally feeling like a new person. I am less anxious and sleeping so much better. I know that the reduction/elimination of the caffeine and sugar have also made a drastic difference in the RLS symptoms, but the biggest difference seems to have been - for me personally, getting off the pramipexole. I have been on that stuff for over 25 years, and it appears that a tremendous amount of my suffering was caused by augmentation. I pray to God that weaning off of it will be enough and that I won't suffer later for having been on a dopamine agonist for so long.

All I know is that today a GOOD day. I'm so thankful to all of you for getting me to a place where I am feeling well for the first time in a very long time.

[Madlegs1]

Great news-- long may it continue!👍💚

[SueJohnson]

That's terrific - so pleased for you.

[DesertOasis]

Congrats x 100!!! What supplements are you taking and what time of day? 300mg of Gabapentin is very low so congrats there again!

[Leeserann]

Well, I don't know that the gabapentin is working yet but I'm finding soaking in a bath of water that's at room temperature water and standing wet in front of a fan before bed cools me down enough to be able to sleep with AC on - without kicking if I stay away from caffeine and sugar. I'm also still taking the 1/4th pill of Pramipexole. Without it I'll still kick like crazy. I am blown away when I hear people say a hot bath will sooth their RLS because heat makes mine go crazy. I have a cooling gel mattress and mattress pad that aren't enough. I take a "Blood Booster" with iron bisglycinate, 1000 mg magnesium (500 A.M. & P.M.), K2 with D3 not near the iron and a bariatric multivitamin.

[DesertOasis in reply to Leeserann]

Interesting! The iron bisglycinate (56mg) taken on an empty stomach before bed, rids me of RLS in a little over an hour, for one night. So I must repeat every night.

[coloradolover]

Really great news. Two questions: how long did it take for you to taper the pramipexole? And what does the propranolol do for you? I'm new to Board and may need to slow taper on my own (unsupportive doc and can't get an appointment with another neurologist). Thanks!