I have been meaning to update the group on this. I have stopped taking Dipyridamole for over a month now, closer to two months. I took Dipyridamole for two years. I was nearing the end of my Dipyridamole supply. I was wondering how much it was helping. So I stopped abruptly. Since then I have had a couple uncomfortable RLS flare ups.
My RLS seems so mild now, I think I can mostly control my RLS with slow breathing and focus at bed time.
I have a long history with RLS. Augmentation with Ropinerole. 24/7 RLS, An Iron infusion. Gabapentin, pregablin and all the sleeping pills.
Dipyridamole was the first drug that took away RLS. All the others were just a mask. I didn't care as much, they numbed me. When I first started Dipyridamole, it was amazing. Dipyridamole also took away the PLMD. My limb movements happen when I am awake. Dipyridamole cured even the tics during the day.
I did have headaches with Dipryidamole for the first few weeks, also some crazy dreams! After that I had no side effects. Over time, Dipyridamole became slightly less effective on the tics and twitches, but it still controlled my RLS 95%!
After time I wondered how much the Dipyridamole was helping. So I started missing a day or two. Then finally I stopped taking Dipyridamole all together.
How do I manage my RLS today?
RLS has several different components, each of which I have dealt with separately.
The Urge to move - Iron helps me and I continue to take Ferrous Bisglycinate daily at night. Vitamin D helps me keep my ferritin levels up with ease. If iron is the issue, no drugs are going to work until the iron issue is resolved!
Insomnia - seems to have gotten under control by itself.
Hyperarousal - small sounds, clattering of dishes, clicking of a clock, growling of my stomach will startle me. I don't like loud sounds and flashing lights. I started wearing a sleep mask! From day one I was addicted. I felt giddy just putting it on at night. I panic when I can't find my mask at bed time. I have not slept one night without it since getting a sleep mask. I have taken it camping and slept better than anyone else. The nights where sound can be an issue I have ear plugs and they help.
I try not to get over tired. Being tired triggers RLS. I now play a gamse of nap-roulette. I put on my sleep mask and enter a different dimension. It could be 1 hour it could be 3 hours, but my naps are amazing. Naps are a catch 22, a long nap will shorten and make my night time sleep worse.
One night I was unusually over tired, it sent my RLS into a tizzy. You know those night where you lay down exhausted and HAVE to get out of bed 10 minutes later? That night I got up, took 225mg of Dipyridamole and within 30 minutes, I was ready for bed.
So now I need to ask, can I take Dipyridamole on an as needed basis? I am serious about this.
Ibuprofen also helps me. It turns down the volume on my RLS.
I have noticed on long drives, my RLS goes into overdrive. Talking with my wife, next time we do a drive I am going to be taking Ibuprofen BEFORE we leave.
That's it, that's the full update. I am not saying Dipyridamole cured me, but my RLS is more under control.
Things that I have changed.
I started adding Taurine and Glycine in my coffee. I also started drinking Sleepy Time tea at night with Taurine and Glycine. About 6 grams of taurine and glycine a day. Could be a placebo, but if it works, it works. I am not going to change this, at least for now.
I also added 500mg of Calcium in the morning. (250mg pill with each cup of coffee).
That's my full update, sorry so long. If you have any question, please don't hesitate to ask.
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WideBody
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I am very glad things are working for you. I don't see any reason you can't take dipyridamole as needed.
Taurine may help RLS but it can interfere with the absorption of iron so should be taken in the morning since you take your iron at night. However since things are going well for you this may not matter. Have you had your ferritin checked recently?
For others: glycine should not be taken by people with liver or kidney disease nor by those who are pregnant. It can improve sleep and reduce diabetes risk.
No, I am behind on my testing. I need to do a blood test soon, just to see how I am doing. It’s hard because everything needs to be taken separately for proper absorption. So to be honest Tea is about an hour after my iron and vitamin C.
I started taking taurine to help my sleep. Well, taurine seemed to help a lot of other things too like energy and depression for me. Again, I am a sample of one and it could very well be the placebo effect. I take about 6grams a day, in my coffee in the morning and tea at night.
Glycine has a slight sweetness to it, I drink my coffee black. I kinda like it. Three grams before bed is also supposed to help with my sleep. It slightly sweetens the tea.
Humble brag, I regularly score an 81 or 82 for sleep quality on my Fitbit app.
Gosh!WideBody! What a very comprehensive history of your condition and well done with the expert management over the years. I hope you had compassionate help at least from the docs involved or was it ‘all your own work’? I note that iron helps with your evening ferrous bisglycinate daily and you had an iron infusion. Would you mind me asking what level your ferritin is maintained at? I have been helped significantly with periodic iron infusions (last one was 18/12 ago). My symptoms return badly when my ferritin drops below 450ugm/L. I run along at about 500-550ugm/L. Thanks for your very interesting and informative and helpful post 🤗
The doctors really didn't help. I wish I had done a morning fasted full iron panel about a decade earlier. I was told to take iron. I took it everyday in the morning with my coffee. Got my ferritin to 200. It didn't seem to help and the nurse suggested I stop taking it. It took 18 months to fall to a normal 30. Doesn't everyone have an excel spreadsheet with all your blood work on it. My doctor was very interested in how steadily my ferritin fell. Hindsight is always 20/20. That week, I got started on my first of 5 infusions. 200mg iron sucrose each time. It was the best thing ever for my RLS and my life. I can't believe I reported over 20 symptoms of anemia, I was even diagnosed anemic with a ferritin of 7. The doctors still put me on Ropinerole. Ugggh... I wish I had never heard of Dopamine Agonist drugs.
Originally I did try to keep my ferritin around 200ng/ml, I have been higher and I didn't notice much of a difference. One doctor told me that if I could keep my ferritin up for a couple of years, I would replenish my iron stores and I probably would not have to take as much. I think I am there. 500-550 sounds on the high end, but I have never heard of ugm/L
One thing I should add. I took a whole bunch of over the counter iron supplements for several months and nothing worked. Years ago when I started with a ferritin of 7. The doctor prescribed liquid ferrous sulfate, it was cheap $10 a month. I took it with vitamin C at night. That seemed to help. But what really started raising my ferritin was adding 10,000IU of Vitamin D with a fatty meal, breakfast or lunch. My doctor wonders why it is so easy for me to raise my ferritin now, I am sure it's the Vitamin D.
Thanks for your reply. I have been taking high dose VitD3 for 5+ years , pre my iron infusions ,for bad family and personal osteoporosis. My first if 4 iron infusions was v helpful but my ferritin dropped back to <100 in 4 months . Second infusion dropped after 5 months. Third dropped after 10 months and my last one has stayed just above 500 (ugm/L = micro grams per litre which I think = ng/ml). I feel my brain has managed to reset itself and not expel the iron as quickly as all the years pre iron infusions.
Though I do find it interesting how many people get great benefit from a ferrous bisglycinate fix every evening. I thought that it might be because their serum ferritin is still too low . Though you say you didn’t find much benefit from having your ferritin much higher than 200. Prof Chris Earley thinks (I think!) that each person has their own personal threshold of ferritin below which their symptoms return++. Anyway I wish you all the best in your future RLS journey… or hopefully absence of it , or at least minimal distress from it 🤗
It is great to read a good news story. I put my wife on dipyridamole last week and it seems to have helped. Last night I wrote to Dr García-Borreguero asking how they use it in Madrid - is it first line or if people fail other medications. It seems to work earlier in the RLS process than other meds so may help calm things down - I dont think we have enough studies yet.
Finding a combination of supplements, lifestyle factors, physical therapies plus meds is always the long term solution.
The mechanisms behind Dipyridamole have to do with the effects of iron deficiency in the brain. If you are interested , google the “adenosine hypothesis for RLS”. If your wife has low iron, it may help. BTW, I emailed Dr. Serge Ferre and he responded. Please share any insights you get.
yes always start with iron infusion. I think have downloaded and read all the articles on Dipyridamole. It is not available as a prescription med here in Australia. The first quote to command I got was $1500 for a month supply but found another compounding pharmacy who did it for $90. If we start to use it a lot hopefully it will get cheaper.
Dipyridamole is available on script in Australia. It's not covered under the PBS but you can get it on private script. In terms of being a backwater, I'm often surprised how progressive doctors here seem to be compared to other forum members' doctors. I'm not sure you can extrapolate your experience in Tasmania to the rest of Australia.
Excellent info. Thank you. I regularly take 8,000 units of Vitamin D in the morning. I increased my iron bisglycinate 25mg to every 3 days - after suffering through 4 months of increased RLS (my sleep doctor was concerned my ferritin was getting too high). We know more about RLS than most docs - and mine studied with Dr. Winkelman! Glad to hear your success.
Interesting news, WideBody. Thank you for your concise and comprehensive story. And yes, I think you can take dipyridamole on an as needed basis. Why not? If it works...
The most interesting I find is that your approach has led to a partial cure, a very strong reduction of your symptoms. Something that so far only people with effective iron treatment have reported. Hard to pinpoint your key treatment, unfortunately. But you think it was the dipyridamole?
May I ask what prompted you to start taking the taurine and glycine? For which specific symptoms? And what effect did you notice?
Anyway, very happy for you. Also for providing inspiration for treatment options.
Good Morning @LotteM. As you probably notice, I focus on iron a lot. I try to keep mine above 150 and below 200. That's just iron in the blood not necessarily the brain.
I started looking at Taurine years ago but I didn't pull the trigger until I saw the studies.
(The above study was done in a test tube... take everything with a couple grains of salt)
There was another study, which I can't find that spoke of the benefits of taurine supplementation in anemic women. It did find a positive correlation but could not explain the mechanisms behind it.
Thanks WideBody. I'll have a better look in the next few days into your article, and maybe hunt for the one on the effects of taurine in anemic women. I get hope from your report that taurine gives you more energy in the day, exactly what I am looking for.
WideBody, thanks for sharing your experience with dipyridamole, and congratulations on finding something effective. I have recently starting taking dipyridamole, as a last resort since nothing else has helped me and my daytime somnolence, profound fatigue and impaired cognition continue to worsen. All sensory symptoms of RLS ("urge" to move) are completely eliminated with low dose methadone, but my motor symptoms, which I believe are atypical, continue: involuntary jerking movements when I try to relax or rest my brain, usually spasms of my torso, but also my extremities. Mostly during the day. ( these atypical motor sx are presumed to be the result of augmentation by DAs 3 years ago, but I am not convinced). And restorative sleep still eludes me after years of treament.
So far I have had iron infusion, ropinerole, pramipexole, gabapentin, pregabalin, clonazepam, kratom, methadone and transdermal buprenorphine. With each new drug I thought : this one is going to make me better! sometimes I did feel better, for a short time. But the trajectory is ever downward, worsening brain fog , sleepiness and fatigue (could it be the methadone?).
Anyway, I started the dipyridamole at 50 mg at bedtime, added to my methadone 3.75 mg daily, plus various sleeper meds trying to get a night's sleep, and titrated up gradually to 300 mg. With each increase I had a mild headache easily relieved with acetaminophen. I now have dry lips and angular stomatitis (small cracks at the corners of my mouth) and wonder if this is due to the dipyridamole. Not bad enough to stop the drug if is helping. Basically the drug is well-tolerated.
At first, as the dose was increasing, I thought I had less twitching at night, and maybe less during the day (wishful thinking?), but no "miracle." I also tried dividing my dose bedtime and morning to see if my daytime symptoms would improve. Nothing obvious. At 300 mg I just don't know if it is helping or not. How would I know? My insurance company won't cover a sleep study so don't know what my PLMS is doing. I still need armodafanil or modafanil in order to function at all during the day. Without it I am too sleepy to think and practically too sleepy to move. With it I often get lots of stuff done, plus my depression and suicidal ideation completely resolve--until it wears off.
Sorry for the rambling account, but mainly I am wondering if I can expect any more from the dipyridamole if I continue it, or should I just give up?
You said “these atypical motor sx are presumed to be the result of augmentation by DAs 3 years ago, but I am not convinced”
I am convinced I augmented and have the same daytime twitches and tics? Wanna sue the pharmaceuticals with me? Spasms of the torso? You mean in the stomach?
Dipyridamole was a miracle for me. At first it took away all tics and twitches, now the few that get through I can manage, but it is still annoying.
Have you tried a sleep mask? Ear plugs? Do you startle at small sounds? Maybe gasp for air for no reason?
Maybe try ibuprofen and not acetaminophen? Sorry I don’t have much to offer.
Yes, my "spasms" occur in the abdomen (or maybe diaphragm) and chest primarily. They are a sudden involuntary muscle contraction which usually causes a short exhalation out through my nose, like a snort (a stranger might think I was snickering at them). They can occur when my mind is calm and I am just falling into a state of relaxation; but strong negative emotions, like remorse or anxiety, often trigger one of these--the stronger the emotion the more violent the spasm. Being cold and having a chill will also trigger one.
No, I don't startle at small sounds, but these twitches, or spasms, are kind of like an exaggerated startle reaction--like a baby's Moro--because sometimes the core contraction sends a twitch out into my shoulders or arms. Sometimes I can feel a twitch coming on if I am trying to relax and I can abort it by alerting myself with a deep breath.
I have used a sleep mask and ear plugs but not consistently. I will try making it routine. The headache is no longer an issue.
WideBody, are your involuntary movements like what I describe above? Did they begin after DA augmentation? Did they continue even after the DA was discontinued? And they got better with dipyridamole! And did the dipyridamole help your sleep too (you probably mentioned this but the thread has gotten too long to read back through haha)?
Is there anyone else out there with involuntary twitches like this??
My involuntary movements are exactly as you describe. I make the same grunt sound. Negative emotions do trigger them. I know what you mean.
Yes they did go away completely for a couple weeks on dipyridamole. Sadly they still occur enough to be annoying. I hate driving now. I wonder is Dipyridamole may have a stronger effect if I take it as needed?
WIdeBody, this is awesome news-congrats! Long may the relief with natural solutions continue!
I wonder if I should go back to trying the Dipy. I gave up due to the headaches, etc. before giving it a full try. I'm doing well on low dose Suboxone but it feels like a bandaid. I am much less inclined to try to fix the underlying issue, plus withdrawing from opioids causes intense RLS. I would love to get back to natural solutions only but Dr. B seemed to think that my receptors are too damaged from the DA's. He didn't say this specifically but I asked about other solutions for months before caving and going back on an opioid. Anyway, best of luck!
Hi WideBody, I'm wondering how you're doing 7 months after you posted this? Are you still taking dipyridamole as needed or did you have to go back to a nightly dose? How is your RLS/PLMD?
Funny you should ask. I had the worst night for RLS in a long time about a week ago. I attribute it solely to THC gummies (first time and last time), which was a big fail! I don't think I will ever do that again. Even the Dipyridamole didn't help. I had to get out of bed a couple of times and I even slept a couple hours on the couch.
However, I still use Dipyridamole as needed, before long car rides mostly. I have had a couple random bad nights, where I get into bed and RLS kicks in. I try to do slow breathing etc... but when that doesn't work. I have gotten out of bed and take 225mg of Dipyridamole and wait about 20 - 30 minutes. Dipyridamole works every time. Except for the THC incident.
I still totally believe in Dipyridamole for my RLS.
I take 90mg of Iron Bisglysinate every night with Vitamin C, if my next blood test are not above 100 ferritin, I will have to switch back to liquid ferrous sulfate.
Magnesium, taurine, glycine and calcium in the morning. Potassium Citrate in my water bottles.
Daily sauna bathing. (Love it.)
I have also been adding some creatine which seems to be beneficial.
BTW, vaping has never done anything like the gummies did.
Thanks for the update WideBody. I find it fascinating that the dipyridamole seems to have reset things for you, to the extent that you no longer need it nightly. I know you've posted a paper on this (adenosine theory if i recall correctly) which i'll have to read up on. I'm still taking pregabalin which works in the main for me, but the side effects are still bothersome such that i want to come off it. I have recently done a course of fecal microbiota transfers to see if it improves my PLMD and sleep. It's too early to say whether it has had any impact. I should know within 3 to 6 months, at which time i'll do a comprehensive post here. Otherwise, it may be a case of revisiting some things that i've tried before, like dipyridamole, even though the headaches really got to me.
Recently I have been having some insomnia issues. I wake up at 3am and can't get back to sleep, then end up taking a nap and the cycle continues. Last night I took proactively dipyridamole, I went to bed with zero RLS and slept till 4am. Progress.
I guess the point is, I am glad to have a such an effective drug with so few side effects. I don't get the headaches anymore. To be fair I almost always take two ibuprofen with the dipyridamole.
WOW!!! Fecal transplant. Way to go Amrob (no pun intended). I truly believe that our gut microbiome are pulling most of the strings in our body. I will never forget the case of the woman who developed C-Diff after several rounds of antibiotics and underwent a fecal transplant utilizing samples from her healthy teenage daughter. It cleared up the C-Diff infection and in the U.S. it has FDA clearance for that purpose. This woman was thin her whole life and was proud of that fact. Her daughter was on the heavy side her whole life. After the transplant the woman put on like 25lbs even though her diet and exercise program didn’t change in the least. Her doctors prescribed various diets to no avail. She may even have sued? The point is, for anyone who has any doubts about the power and potential of these transplants…think again…
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