Strange coffee relief

[Moonpen]

It’s been quite sometime since I’ve posted. I went through hell to wean off of the 0.75mg dose of pramipexole. Managed to stay off for approximately 2 months. After sleep deprivation and some embarrassing and dangerous episodes of sleep walking I started back on pramipexole 0.25mg. I have managed to stay at this dose and in this process have found coffee to give me relief. I fall asleep very easily and will usually sleep 1-2 hours to only be awakened by that awful knowing feeling in my legs. I have a Keurig coffee maker and I make a cup of good ‘ol Louisiana Community Coffee. I use the lowest setting for a strong cup and will drink maybe half no more. Within 10-15 min the restless legs has subsided and I am able to get back to sleep. For most nights am able to sleep for 5 more hours. It’s strange my father has dementia and during this process his memory of early childhood is what he speaks of mostly and he remembers the last thing his mother did was make a pot of coffee for the whole family to have a cup prior to bedtime. Maybe this is paradoxical reaction as I have discovered we have quite a few to different substances but so far it seems to be working. Now let me say If I drink just a little much more than that half a cup it will still relieve my RLS but I’m wide awake from the caffeine so I’m careful at how much I consume. I know caffeine is definitely suppose to cause worsening of RLS but maybe my experience could help others find some relief.

[Hidden]

Hi Moonpen, a few of us have found that drinking coffee can be helpful in the night regardless what article's on RLS say . I drink coffee day or night time, and it doesnt keep me awake, so its doesnt act as a stimulant for me.

[Hidden]

I can believe that coffeee helps you, others have said that. I haven't noticed that it's ever mader any difference to my RLS. However, if I do drink too much, it does spoil my sleep despite having no RLS symptoms.

I also weaned off 0.75 mg Pramipexole, some months ago, I wonder why you started on it again?

[Moonpen in reply to Hidden]

I started back because I was not sleeping at all besides 15-30 min maybe then up again walking floors, even after being completely off pramipexole for over 6 weeks. I had no relief and was truly going crazy. Since I have found that coffee helps I am going to try again to get off.

[Hidden in reply to Moonpen]

It sounds as if you've come off pramipexole without taking any alternative. In which case you may simply be experiencing uncontrolled RLS, rather than withdrawal effects. If this is so, this could continue indefinitely.

It doesn't seem.to be mentioned a lot but RLS is associated with "hyperarousal" a state of overexcitation of the nervous system. Insomnia due to RLS is usually associated with not being able to get to sleep, because of symptoms. However, this distracts from the fact that it causes insomnia more generally because of hyperarousal.

Some people find that caffeine (or coffee) does help relieve RLS symptoms, in the short term, but caffeine is a stimulant and can also worsen insomnia more generally.

A better solution, longer term, is to take an alternative to pramipexole.

[sweetiepye]

You know about iron levels, right? The levels in your body aren't the same as the levels in your brain. The levels in the brain must be higher to get rid of RLS . If you have your levels checked you will probably find they are too low in your brain. The coffee probably stimulates these brain levels so it alleviates the RLS. Having a slight fever will do the same thing. . You might want to check with a neurologist who specializes in RLS treatment with opiates. This will help you get off pramipexole.

[Moonpen in reply to sweetiepye]

I do know about iron and have had checked which at that time ferritin level was above 400. I am presently working with a functional medicine doctor and hopefully will find relief.

[sweetiepye]

Good. Sounds like you've got it covered.

[involuntarydancer]

Hi Moonpen,

There is some science behind the caffeine benefit. It has to do with the adenosine receptors - caffeine operates on them and they are implicated in RLS onset. It is referenced in a very detailed study into the possible benefits of dipyridamole for RLS sufferers by Ferre, Garcia-Borreguero and others a couple of years ago.

As a matter of interest why did you return to such a relatively high dose of pramipexole? Was it not possible to get relief with a lower dose? I withdrew from a very high dose 4 years ago and resumed the drug (very reluctantly and after much experimentation). However, I only take the European equivalent of 0.125mg (the dose is different here - mine is 0.088mg). I have had more or less consistent relief at that dose for about a year. I use other drugs to control any breakthrough symptoms.

[sweetiepye in reply to involuntarydancer]

No connection to the iron ? I'm curious and your knowledge is far beyond mine. Just as an aside, I take Excedrin for headaches, which contains caffeine, and it also helps my RLS. It only takes the edge off.

[auntiesioux]

Hi have not replied here for a few years but....I also posted that coffee almost instantly stoped my leg "seizures." I also noted that effect wore off if done too frequently, my personal experience.

I am now attempting to wean off the Requip but not too successfully. I have added tinctures of THC to my nightly routine and I am finally getting some sleep, not perfect but sleep