I have been on 100mg x2, one at about 4pm and one closer to 8pm. It is recommended to take Dipyridamole on an empty stomach. This is still lower than the effective dosage in the study and I intend to increase it.
I have cut pregabalin from 300mg to 150mg. My goal is to cut it again when the 150mg capsules run out. Down to 100mg for a month. Then 50mg for a month.
Side effects? I think I had some issues with the big jump in pregabalin. As for Dipyridamole, the biggest side effects are the dreams I have been having. I rarely had dreams before and certainly could not remember them if I did. Now they seem to be a nightly occurrence. I don’t know if that’s good or bad.
RLS is practically gone, still lurking but at a much lower level. My jerks and twitches have also subsided greatly. Even during the day. It only take about 10 to 20 minutes to fall asleep.
It is still early in this experience but I do feel it’s moving in the right direction. I will post more in about a month.
Cheers to all.
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WideBody
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Hey there! Just wanted to share my experience with dipyridamole since so few people take it for RLS in the hopes that more people with RLS may speak with their doctor about this medicine and can get relief from their symptoms. I take dipyridamole twice in the evening 4 hours apart, two 75 mg pills each dose. So I'm taking 150 mg twice in the evening, one 150 mg dose at approximately 5:30 p.m. or 6:00 p.m. and then a second 150 mg dose four or more hours later, and it gets rid of my RLS completely. The way it works for me is that once I take the first dose, there's a noticeable difference; but after the second dose, I feel like a person who has no RLS for the remainder of the night and allows me to sleep through the night. I call it my miracle drug!! Oh, and I haven't noticed any side effects.
Lana, it’s an anti-clot medication. You can’t just come on here and proclaim it’s a miracle drug and expect people like me to sleep tonight not knowing why such a medication should help with symptoms of RLS. I have no doubt it works. Fortunately for me (and you😈) I think this is why. Even though this article regards heparin I imagine dipyridamole would have the same effect on hepcidin.
For people for whom it doesn’t work, I think I know why. First, I believe it has to be taken in a large enough quantity and at the right time of day. Hepcidin has a circadian rhythm. It begins to rise in the morning and then peaks in the evening, but not late evening, more early evening. As it rises, our serum iron drops so that by late evening we have little serum iron and full blown RLS. If you waited to take this drug before bed I’m guessing it would have no where near the beneficial effect.
If you are ever in the mood to do a tired old bitch a favor (me) drop the drug for just one night and try taking iron instead per my profile page. It’s a lot to ask I know because it might very well mean a horrible nights sleep. My theory is people can do it your way - lower hepcidin in late afternoon and mid evening so that there’s more iron in our blood when we go to sleep, or you can do it my way and just take some iron late evening when the hepcidin is on the decline and no longer siphoning off that black gold.
Dear LonePine, first of all, I KNOW what dipyridamole is. I KNOW it is an anticlot medicine. It is being used off label for RLS. Second of all, I said that I call it MY miracle drug. I never meant to imply that it would be a miracle drug for others. And I also recommended that anyone who might be interested can contact their DOCTOR about this medicine. You really hurt my feelings when you said, "You can’t just come on here and proclaim it’s a miracle drug and expect people like me to sleep tonight not knowing why such a medication should help with symptoms of RLS." I honestly don't care what you do. I was only sharing what works for me. So if you don't like what I have to say, then you can ignore me and don't give what I share on here a second thought instead of insulting me. I think it's very rude of you to leave a reply like that. Plus, I didn't start this thread about this medicine. All I was doing was replying to someone else's post about a medicine that works very well in controlling my symptoms. I wish you good luck in controlling your RLS symptoms in whatever way works for you.
I was kidding. You and I have chatted before. I adore you. I’m thrilled that you and I may hopefully get to bottom of this and maybe help dozens of others..
in reply to
And thank you Wide Body for also trying and sharing. This is great. We so need this.
There’s this too. Only subscribers have access to full article. Darn great explanation of why dipyridamole works for RLS. I truly believe timing is still important and maybe it failed others for this reason. There are no coincidences. It was meant for you to happen upon the right dose and timing and share it with us. Here’s the excerpt:
Etiologies of sleep-related movement disorders (SRMD)
Mauro Manconi, Davide Sparasci, in Reference Module in Neuroscience and Biobehavioral Psychology, 2021
Adenosine
Blood iron deficiency (BID) in rodents is associated with changes in adenosinergic transmission, with downregulation of adenosine A1 receptors (A1R) as the most sensitive biochemical finding. The hypoadenosinergic transmission, leading to hypersensitive striatal glutamatergic terminals and facilitation of striatal dopamine release, represents a pathogenetic factor in RLS for both PLMS and hyperarousal. Furthermore, inhibitors of adenosine transporters such as dipyridamole, by increasing the tonic A1R activation mediated by endogenous adenosine, could represent a new alternative therapeutic strategy for RLS. In animals with and without BID, the striatal application of dipyridamole decreased basal levels of glutamate. Caffeine, a non-selective A1R/A2AR antagonist, counteracts the effect of dipyridamole (Ferré et al., 2018).
Once again, it seems the important factor is blood/serum iron rather than ferritin, if I’m reading this correctly. Actually, I think in the first line it should read “brain iron deficiency.”
I don't have that number. I would like to add that this drug has the potential of providing complete relief of the symptoms of RLS without altering your receptors (seemingly so) and without any addictive properties. Bingo!
Here’s an article about the diurnal rhythm of hepcidin. See the “Results” section. Why can’t they be more specific. I want to know the exact hour hepcidin begins its descent. It seems that in terms of dipyridamole you want to take it (and allow for time for it to enter bloodstream) before hepcidin peaks and crashes our serum iron. Well, it seems no matter what, you got it right.
If my theory is correct, you should have gotten same day improvement in RLS? Did you? Thanks to Lotte I found the below clinical trial. HOWEVER, the researchers had the participants take one dose at 9pm. I think the way you and Lana are taking it is better. The participants still reported improvement in RLS, but I want a do over. I want a clinical trial with your dosing schedule. movementdisorders.onlinelib...
I think if you increase to 150 mg each dose it may work better for you. My neurologist started me off at 150 mg per dose. I wonder if you could ask your doctor about increasing it?
Oh, I'm so glad you asked me that because when I read that part last night about taking it on an empty stomach, I meant to address that, but I forgot. I actually don't take it on an empty stomach and my doctor didn't tell me to do so. Also, my first dose (timing-wise) in the evening is with supper. My pill bottle doesn't say anything about taking it on an empty stomach. I think I'll Google it and see if it says anything about that. I could ask my neurologist if he thinks that makes a difference or not. Great question!! 😘
Dipyridamole is the first medicine for RLS based on research into what happens in the brains is people with RLS. This work is done by Sergi Ferre and his group. For example see this paper: pubmed.ncbi.nlm.nih.gov/293...
There are more. Based on this research and ensuing knowledge they surmised that the existing medicine dipyridamole, based on the way it works in the brain, interferes with the adenosine system in a way that would be beneficial for people with RLS. They did a pilot study. Later on, Garcia-Borreguero and coworkers did a proper double-blind placebo-controlled trial on dipyridamole for RLS. It wasn't a cure but it did help: movementdisorders.onlinelib....
Just to substantiate why people may be given dipyridamole for their RLS. It is still very new and needs further substantiation. Or better: development of a medicine that more specifically interact with the A2R receptors to 'normalise' them.
Dreams are generally good and normally indicative of healthy REM sleep which along with NREM make up health sleep cycles. Do you feel more rested and alert and like you are sleeping better?
That's the real question, right! I use a fitbit sleep tracker. So far my sleep numbers aren't improving, they are not getting any worse either. I think the biggest reason for that is I stopped taking 2 * 150mg of pregabalin and dropped to only 1 * 150mg on the third night of Dipyridamole. I got cold sweats, nausea, heart palpitations. I felt so bad I got a covid test and went to the Doctors. I was negative... (I wasn't very bright and didn't think this could possibly be withdrawal symptoms.) it took a week for the symptoms to start simmering down. Even though my sleep numbers look the same, I do feel better and I am not as tired during the day. I also think pregabalin has a mind numbing effect. So I do feel more alert. (if it is a placebo, I don't care).
I have about 5 more days of 1 * 150mg and I am dropping to 100mg (2 * 50mg) for a month, then 1 * 50mg. Then it's just me and the Dipyridamole.
I have a sleep app which listens to how restless I am and similarly gives me a score for how well I slept as well as a graphical representation of deep and light sleep. However they do very sensibly say that if you feel like you’ve slept well you probably have and don’t fixate on the numbers (and vice versa). Sounds promising and yes coming off pregabalin does give you that bit of clarity back. I think the rate you are decreasing will allow you to get used to it and really assess the changes. All the best!
Thanks for the update. Did it start working right away or did you need a few doses to build up in your system before noticing any results? Also, you said at first it didn't last through the night - is it making it through the night now? For someone who has symptoms 24/7, how often do you think we'd need to take a dose? I have to take tramadol 4 times a day because each dose only lasts 4 to 6 hours.
It did work right away. I was on a very low dose. It has since been doubled to 200mg per day. I do want to increase it. That sounds like a lot of tramadol. I think it is worth a discussion with your Doctor.
Hi ookla, just a quick comment. You're taking tramadol four times a day and having symptoms 24/7... Dr B. told me a long time ago that tramadol can cause augmentation? Have you looked into this? Usually symptoms 24/7 is a symptom of augmentation. I hope not for your sake but I didn't want to not mention it incase...
Thank you. The tramadol works, but my doctor is threatening to take it away if my sleep apnea isn't taken care of (I did cpap for years and it didn't help) - so I'm looking for an effective alternative.
WideBody I am really interested in this. Did you get your neurologist or GP to give you a prescription? Are you in the US? How did you convince them? I seem to have both types of RLS - the urge to move my leg (25%) and the twitching type (75%). I'm wondering if it would help me...
I am in Oregon. I emailed the paper to my Doctor. We have been through a lot, by we, I mean me. I have been through a lot with my doctor. He has since become very responsive. I got the script the same week. No telling if it will help you, but I can say the side effects are negligible compared to everything else I have tried.
I am afraid I don't see what the problem is? Perhaps post your comments? I think around here we agree to disagree agreeably. I warn you, we have all been through a lot. A lot of us don't get a lot of sleep.
Please post your comment. We're all keen to get the whole story and able to hear different sides of it. I'm looking at this as an option so would like to be fully informed...
Do you have coffee in the morning? I see a drug interaction with caffeine. I can give up my afternoon green tea - but not my morning coffee!
I am fully aware of the interactions. If I overdose on Dipyridamole, caffeine is the antidote. I still drink two cups of coffee in the morning. I take 300mg of Dipyridamole about 8pm, on an empty stomach. I think that is important. BTW, according to the studies 218mg was the average effective dose of Dipyridamole.
Please let me know how you make out with Dipyridamole. I don't know if I asked you, but did you check your iron? The way I understand it. The problem with adenosine is caused by low iron in the CNS. If Iron is not your issue, I don't think the Dipyridamole will help. (I am not an expert, I just read a lot.)
Interesting. What was your ferritin before the infusion? Did you wait for 8 weeks after the infusion before testing? What type of infusion did you get? Mine was iron sucrose 5 * 200mg each time. It definitely made a difference for me. If I ask too many questions, just tell me to stop.
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Anyone taking dipyridamole?
Dipyridamole working great
