It's well over a month since I started taking dipyridamole to treat my rls. I have to report that I am beyond delighted with how the new system is working at the moment - I am alert and rested during the day and sleeping at night - I feel like myself in a way I haven't done in years - but before others get too excited I will point out that in addition to a daily dose of 325mg dipyridamole, I have added in a tiny amount of pramipexole (0.044 - half of a 0.088 tablet).
Let me say that I took pramipexole for nearly 10 years in ever increasing daily doses and by the time I was told to discontinue it by my sleep consultant, I was taking nearly 1.7 mg per day. I had a traumatic withdrawal from it about a year and a half ago with awful symptoms and virtually no sleep for nearly three months and a long slow recovery thereafter. Since coming off pramipexole I have struggled to find a treatment that allowed me to live anything approximating to a normal life. Amongst other treatments, I tried neupro patches and found I augmented on them after only two months.
Although it is very unusual, I am aware of one or two others who have successfully resumed pramipexole after augmenting on it. The key seems to be to maintain a very low dose, keep serum ferritin levels high and have another treatment available to alternate with so as to reset receptors if dependency sets in. I take 0.044 for 5 nights a week. I don't take it at the weekend. Over Easter I will attempt to stay off it for a slightly longer break.
Dipyridamole definitely helps control my rls without pramipexole but it does not completely eliminate the urge to move. With the tiny dose of pramipexole I get almost total relief and the best sleep I have had in years. The fascinating thing about dipyridamole is that it does entirely eliminate the creepy crawley sensation even without pramipexole. I had always thought this sensation was an intrinsic part of the urge to move but it is not so. I never experience the creepy crawlies any more and it makes the urge to move so much more bearable. I also find that I feel very 'normal' when on it - sort of healthy and much more like the me of old.
Dosage of dipyridamole is experimental. The dose given to the participants in the study was between 100 and 400mg. Every time I increased the dose of dipyridamole (I started at 100mg), I developed a headache for a day or two but at 350mg the headache was worse than at lower doses and did not resolve even after 5 days so I had to cut back to 325mg
I started the experiment with the aim of reducing/eliminating the meds I was on (pregabalin and kratom) because, although they worked well to control my rls, they caused me to be too tired and dopey/druggy during the day. I now feel great during the day. I have completely eliminated kratom (I do have some made up by my bed at the weekends when I am not taking pramipexole but so far I have managed to cope with the symptoms I have on those nights without any drug other than dipyridamole). I reduced the pregabalin too fast in the early weeks - from 200 to 125mg per day - and experienced terrible restlessness, particularly at night. At first I thought that this was caused by eliminating kratom but I am pretty sure now that it was the reduction in pregabalin. I get echoes of it each time I reduce my dose - I am reducing much more gradually now. It has taken me nearly three weeks to get from 125mg to 100mgs daily.
Incidentally, I think that the restless symptoms were helped by introducing a very low dose of naltrexone. It may have been a coincidence but they resolved very soon after I started taking the naltrexone.
I am going to have my serum ferritin levels checked on Wednesday. I take two 20mg gentle iron tablets every other day and will be interested to find out what my levels are. I am considering trying a vegan diet, since it has been so successful for Raffs, in an attempt to further reduce my reliance on pharmaceuticals.
Apologies for the long post. I tried to put all the information in that I thought might be of interest. I felt it was important to put my decision to resume pramipexole into context, given the misery I know it is capable of causing and has caused to so many on here. I will be interested to see how long I am able to continue to take it before it ceases to be effective at this low dose. I will post updates if there are any developments.