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Restless Legs Syndrome
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My dipyridamole experiment - progress report

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.

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I am beyond delighted for you ID. Thank you so much for the detailed post. It is absolutely essential research material and I am going to seriously consider reducing my Oxycontin with the help of micro doses of LDN & then, if that is successful, I will ask my MS neurologist for some dipryadimole. I will stick with the pregabalin unless the vegan diet as trialled by Raffs works.

In the meantime, I am going to trial the vegan diet for 3 weeks, like Raffs to see if it improves anything.

It's clear that no one else is doing any research so we have to be our own guinea pigs.

Sleep tight, night, night

Jools

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Good luck with reducing the meds, Jules. I hope the ldn works for you. The vegan diet sounds interesting. I just have to get myself organized.

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Hi ID, why apologise for a long post when it is so informative, thanks a bunch for sharing with us, especially as my story is very similar to your own with a tough withdrawal from Pramipexole last year. I have recently changed GP because the old one knew nothing better than constantly upping my doses of any medication whenever I had a problem. I am still weaning off the 8 x tramadol he put me on to help with the withdrawal from the prami. You've got to laugh that it's just switched from one withdrawal to another, how ridiculous. Anyway, I'm rambling. The new GP has been great and researching everything she doesn't already know. She wants me to try pregabalin before I try anything else so I have started on 100mg today, on top of the 2 tramadol and 6 gabapetin and 1.5 clonazapam I am already on. need to get rid of some of the others I know, but I need some sleep first!!

Wonderful news that the Dipyridamole is working so well for you, long may it last. I'll add it to my list to try after the pregabalin if that doesn't work. Well, actually it will be after cannibis after the pregabalin...

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Thanks for a lovely reply Adge. How fantastic to have found a GP who is prepared to do her research. I would just mention that pregabalin and gabapentin are very much the same basic chemical. I have never heard of someone on both at the same time before. I would be inclined to do some research to check that that is ok and if you are going to reduce/eliminate one of your drugs, I would have thought the gabapentin would be the one to prioritise now that you are on pregabalin.

I really hope you get some sleep.

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Thanks ID. I was surprised she wanted me on both Gabapentin and Pregabalin at the same time, but she tells me she has researched and they can be taken together. The intention though is if the pregabalin works, we will then taper off the gabapentin. Yesterday was my first dose of pregabalin, and unfortunately I've been pacing the kitchen all night and not managed a single minutes sleep. I'm sure I read a post before that pregabalin can worsen symptons in the short term before improving them. Do you know how long I should expect it to take for the pregabalin to kick in? Given my usual resistence to low doses, I assume I will have to increase from the initial prescription of 100mg for it to be effective, so I might be looking at several weeks or even months from what I can gather?

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You sound like me - needing high doses. My understanding is it can take a while for pregabalin to kick in - from several days up to nearly four weeks. I found it took about 10 days to experience the full benefits.

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Great summary and work, ID. I am anxious to get rid of the groggy/balance aftereffects with the Rx.'s, too. Your experience is encouraging. Thank you so much for sharing it. Although the Horizant works on my RLS, it leaves me with those lingering problems. I, as they say "hate to look a gift horse in the mouth", but it seems like I traded one set of problems for another. Admittedly, I am so much better off now, than when I was on, or withdrawing from pramipexole, but as you are pursuing, there must be better options. I see my RLS Dr. next week and plan to quiz him on the dipyridamole, naltrexone and pregabalin, as well as the iron infusion.

Please do well and keep us all informed on how it is going. We will have to rename you Chingachgook of the RLS Tribe. :-)

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Thanks Bd. Poor daytime symptoms are the main reason I embarked on this experiment. Horizont is very similar to the pregabalin I am on and I certainly noticed the balance problems when I was on a higher dose. At least you are getting good sleep on it.

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Should have said: dipyridamole is also known as ’persantin’.

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Well done ID! Please continue being the guinea pig for this and for us, as I think and assume you know you’re not there yet. But so far so good.

Am I right you are still also in pregabalin 100mg, but aim to reduce further?

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Hi Lotte, I definitely realise I am far from out of the woods yet. An interesting time will be in about a month's time which will be just over two months after I resumed pramipexole. Typically I have augmented on neupro about two months after starting it so that indicates that augmentation could set in around then. And of course any time thereafter when augmentation could kick in. However, I have not felt this good for many years so it is no hardship at present to continue to be a guinea pig.

In regard to pregabalin last night was the first night I took 100mg - I was taking 112.5mgs for 9 days prior to that. I am reducing at a rate of about 10% of my dose every 10 days or so. It is very laborious and every so often I get a re-emergence of the horrible restlessness and discomfort that I experienced when I first started reducing at far too fast a rate. I would love to eliminate pregabalin but I am conscious of the role it plays in promoting deep sleep and will keep an eye on day time sleepiness as the dose reduces to ensure that eliminating pregabalin does not result in reduced deep sleep.

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I think you're doing great. Is someone looking over your shoulder? I mean, is someone helping you with observing your sleepiness? As things usually change slowly, it is hard to observe ourselves.

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Thanks, ID, for taking the time to be so detailed; it's helpful! I'm still getting 90% relief with kratom (twice or thrice daily).

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Yes; I found kratom remarkably effective. Would probably still be taking it except that I found it difficult to work well during the day if I took a lot (enough to quell my rls) the previous evening. I would need to sleep late to recover from the kratom dose and that wasn't always possible with my work.

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Curious - do you have any other underlying condition that calls for dipyridamole, like peripheral artery disease? It seems off-label for RLS. I don't see it mentioned. en.wikipedia.org/wiki/Dipyr...

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Hi DC, no underlying conditions - fortunately for me. I took my lead from a very involved paper and very small study which looked at the possibility of using dipyridamole in the treatment of rls. Am too tired to get the reference for you but if you put dipyridamole in the search bar you should come up with the first (of three - this being the third) thread I started about dipyridamole and you will get the reference there.

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Thank you so much for sharing. Always, always great to hear news like this and in such great detail - so helpful. Wishing you all the very best. X

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thanks smiler

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Physicians Com!ittee for Responsible Medicine just released an app for clinicians who want to use nutrition in place of meds whenever possible. Here are the resources they give for patients who want to try a vegan diet. In the USA the preferred name is Whole Food Plant Based nutrition as it is possible to eat an unhealthy vegan diet.

Web ResourcesThe Physicians Committee for Responsible Medicine (PhysiciansCommittee.org) provides patient education materials, a free online 21-Day Kickstart program, and nutrition and cooking classes across the country to support patients in exploring the health benefits of a plant-based diet.

Kaiser Permanente offers patients a “Quick Start Guide” to changing their diet and moving toward a more plant-based approach. share.kaiserpermanente.org/...

John McDougall’s Health and Medical Center, (http://www.DrMcDougall.com), offers health and nutrition information, and low-fat vegan recipes, in addition to medically supervised nutrition immersion programs.

The Vegetarian Nutrition Dietary Practice Group of the Academy of Nutrition and Dietetics website (www.VegetarianNutrition.net /FAQ) has free, ready-to-print patient handouts on many topics.

The Vegetarian Resource Group (http://www.VRG.org) offers recipes, information regarding vitamins and minerals and the health benefits of vegan diets, and access to vegetarian publications.

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Many thanks for such a multiplicity of information. I will enjoy looking through it.

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If the Kaiser link does not work search on "Kaiser Permanente guide to plant-based eating" for numerous results from HMO giant Kaiser. Thanks for your info. Very helpful.

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Absolutely fascinating - I just read the original article. Cutting edge biochemistry investigation of RLS. I think they're on to something!

frontiersin.org/articles/10...

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My experience on dipyridamole suggests they are definitely on to something.

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I agree, DicCarlson. Ferré is the first to approach RLS and the search for a potential medicine this way, i.e. bottom up. I tried to summarise the essence of the paper a while ago. Shall give the link.

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Sorry. Can’t seem to copy the post - from two months ago and by Involuntarydancer - from my phone and paste the link here. Shall try again from my laptop in the morning.

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Lotte’s fantastic summary of the paper is also contained within my first post on dipyridamole so putting dipyridamole in the search bar will enable it to be tracked down.

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Correct ID!

So here's the earlier post by ID with somewhere down the line my selective summary of what I thought was the relevant info form the Ferré paper on adenosine neurotransmission and its role in RLS, in which he mentions the potential benefit on dipyridamole.

healthunlocked.com/rlsuk/po...

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Hey ID. I hope you don't mind, I used the great information in your initial summary of your switch to diypridamole, in my discussion, of options, at my visit to the RLS Clinic this week. They liked your report and said to present any new information for their consideration/review. Really like their open approach.

How are you doing. Have you been able to further reduce the pregabalin without increasing symptoms?

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Hi Bill, I am really chuffed that your Rls clinic was interested. Of course it is a study of one which has obvious limitations.

It’s funny you should post about this today because over the last few days I was delighted to find that I could reduce all my meds. Pramipexole dose was halved to 0.022 and dipyridamole to 225 (actually 200mg last night). I am reducing pregabalin slowly and now down to 80mg.

I was thrilled with this needless to say, HOWEVER, this morning I woke with a full viral infection (sore throat, aches, cough, misery) which with hindsight I had been brewing for a few days. My Rls has occasionally improved when I have a virus so possibly that is why I was able to reduce the meds.

I will continue to post. Obviously I would be thrilled if such a low dose of pramipexole did the trick.

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ID, hope the virus is short and simple, and that it is your meds. modification that reduced the RLS.

I'll let you know what they (RLS Clinic) say when I hear from them, hopefully early this week.

Thanks for the very helpful information and keep us posted on your progress.

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