Down to 50mg of pregabalin a night. Sleeping better. Tics and twitches are almost nonexistent. Bad dreams have gone. My only concern now is, what are the long term effects? Is augmentation possible? Especially since I have no desire to stop taking Dipyridamole. BTW, I take 300mg (4 * 75mg) all at once about 90 minutes before bed.
I enjoy not taking pregablin. I was taking 300mg, now down to 50mg.
I don't know how to say this, but Dipyridamole obliterates my RLS.
What wonderful news! I assume you have read the (accounts of the) studies by Sergi Ferre and his group on adenosine which made them to suggest and research dipyridamole? Several of the original papers are very tough reading. But there are several more laymen-oriented reports that are easier to understand
Anyway, I am mighty pleased for you.
Too early to say whether it may lead to augmentation like the DAs do. Only time and many more people taking it for RLS will tell.
No worries about internal bleedings? My former gp dismissed it for that reason.
Internal bleeding I think is the least of my concerns. From what I can tell Dipyridamole is a terrible blood thinner. I believe that is why it is no longer used for that purpose. Of more concern is were chest pain/angina pectoris, electrocardiographic changes (mostly ST-T changes), headache, and dizziness.
I have not experienced any of the above, those are what are listed in drugs.com.
Augmentation would be my biggest concern.
Hi widebody, my neurologist advised against dipyridamole yesterday. For two reasons. The buprenorphine works very well for the rls, its problem lies in its side effects (drowsiness, brain fog). And she mentioned that headache is a frequent side effect. Luckily you don't experience that.
Hopefully time will bring more experiences with dipyridamole. But also a better medicine to lower the high adenosine due to the reduced receptors. Or even better: a medicine that increases the receptors to normal. Then we're getting close to a cure. However, I haven't as yet read anything about the possible cause of Brain iron deficiency, other than several associated general genes. Too unspecific to work with, I guess.
Thanks LotteM, I am quite happy with Dipyridamole so far. I am completely off pregabalin and feel much better. Th Dipyridamole is still working, but I have to be careful not not eat before or after taking my medication. While it sounds easy, I am a late night snacker, always have been. Habits are hard to change.
My understanding is that Dipyridamole blocks the ent1 receptors and increases intercellular adenosine.
So it is. Good to hear Widebody. If the methylphenidate does not help or when it does but at a later stage the dipyridamole is definitely a treatment to try. Very importantly it is the first treatment based on research into the mechanisms of rls. All other treatments are based mainly on observations that it helps, ie trial and error.
Now I am a bit confused. First you say buprenorphine, which I understand. Now you are discussing methylphenidate, which I don't understand. 
Hi Lotte, why did your neurologist advise against dipyridamole?I have just started taking it so i'm interested in all perspectives.
Fantastic news. I'm delighted.
So pleased for you. I recently had a trial of dipyridamole. I was so hopeful but sadly it did not help one single bit at 300mg but I got unpleasant headaches with it. So disappointed for me but happy for you and anyone else it helps
I am sorry. Can i ask, is your RLS primary/genetic? Do you respond to iron treatment?
My RLS is genetic but also I have peripheral neuropathy so I have it from 2 directions. I’m doing my best to get my Ferritin up with ferrous bisglycinate and have at one point got up to 88. I plan to discuss with the haematologist I see for another reason in Aug if I can’t get high enough but it would be so good if something reasonably innocuous & oral due to trick - rather than an opiate which is my next and only other option & one I’m wary of taking in case it backfires in the longer term
Ask for an iron infusion as with a ferritin above 75, iron tablets are not as effective. As for your peripheral neuropathy I assume you are taking gabapentin as that helps it as well as RLS. Are your RLS symptoms under control?
No RLS not under control. Been on Pregabalin but it stopped working. For a long time I have been considering what to do next. Dr Buchfuhrer has been great at advising me from afar. What a lovely guy he is.
Yes he is!
It’s so wonderful to read this. I’m so happy for you.
Thanks for updating us. Do you have a goal, like eliminating pregabelin entirely?
Yes, about 2 months ago, I was taking 300mg of pregabalin a night. I dropped to 150mg within a week. That was a big drop, so I am taking it slower now. I should be of pregabalin in about two weeks. I don’t think the pregabalin is helping, I am just addicted to it.
No you are dependent on it. There is a difference.
Yay!!! Soooo happy for you! I have the same success as you do from using it. 🤗
Do you have hyperarousal? I am sensitive to sounds. Did you respond to iron? Do you take iron as well? Not at the same time as Dipyridamole. Since it appears the adenosine hypothesis is caused by a BID. I am wonder if people with primary RLS may not respond.
I am concerned about long term side effects. Given my history with DA drugs I am watching for any personality changes. Have you noticed any side effects? Dipyridamole does not make me sleepy or groggy.
I haven't noticed any symptoms of hyperarousal or other side effects. I had several iron infusions, none of which helped my RLS.
Very interesting, I have no idea how any of this stuff works. Why do some people respond so well an others don’t?
BTW, hyperarousal is caused by the glutamate buildup in the brain. (My understanding)
Could it be a placebo? In my case I sincerely doubt it. My movements after dark are involuntary. Yes I get the urge to move as well, but the jerking and twitches are not under my control. That are almost completely gone.
I did have one bad night, I can’t explain it. I am sure I took my medication. Possibly I took it to close to food?
It sounds like you are responding well to the dipyridamole and it may just take a little longer to iron out the other stuff. I am extremely grateful that it has worked so well for me and I hope and pray that it always works this well. Good luck wishes to you, too, my friend!!
That is great that the Dipyridamole is working! And that we have another tool in our fight against this awful disease.
How wonderful to hear of your success with dipyridamole! It's on my 'to try' list however I had some difficulties sourcing it in Australia.
I don't fully understand the internal bleeding risk, if anyone might care to explain it?
Does taking dipyridamole potentially cause internal bleeding, or does it increase the risk of internal bleeding where there is some other injury?
And what is the likelihood of either scenario happening?
As far as I understand it dipyridamole has an effect on the function of platelets which makes them then less good at stopping bleeding. It also dilates blood vessels but the action on RLS is different from either of these. I got headaches due to dilating blood vessels but was SO disappointed it did nothin for my RLS. I had been so hopeful.It seems as we all suspect that we are dealing with more than 1 condition which have similar effects.
Dipyridamole was discovered/created in 1959 as a blood thinner. Apparently it's not a very good one so it is not used for that anymore. Dipyridamole is also an ENT1/ENT2 inhibitor. These articles will say it better than I can.
liebertpub.com/doi/10.1089/....
Dipyridamole was chosen as a drug specifically because of it's effect on adenosine in the brain. It does work.
I envy you. How wonderful to be free of the dreaded rls. Did you start with a small amount together with pregabalin, and when did you realise it was working. I don't have jerky legs just that horrible creepy crawly feeling. I would love to try it. Could you let me know the amounts. I'm taking 300 mg pregabalin but I have to take a 50mg tramadol and sometimes some Kratom. I would love to take less meds. My ferritin is fine and I take magnes ium too + vitamin D.
I went from 300mg of pregablin to 150mg in the first week when I realized Dipyridamole was working.... yeah, don't do that. Go slower. I stayed with 150mg for a month, then went to 100mg for a couple weeks. I am now on 50mg of pregabalin a night. Hope to be off of it completely in a couple weeks.
So happy for you. How much dipyridamole did you start with and did you build it up. Do you have the crawly feeling rls ? I don't like preg either but after stopping mirapexin I had to take something
Glad it works for you!
I found this site that talks about an A1 Agonist being cardiotoxic, but I can't determine if dipyridamole is an A1 agonist.worldmedicinefoundation.com...
This article says headache is the most common side effect. I am a migraineur so I don't think it could work for me.
HI, WideBody, I am very happy for your success on takin Dipyridamole. My question for you is do you experience any stomach ache or headache. I started taking 100 mg of it yesterday on empty stomach and had severe headache and stomach ache. Do you experience this side effects in the beginning? I am wondering if the side effects will wear off eventually when I continue taking it. Thanks in advance.
No stomachaches but I do still seem to get a small headaches. But then I would get big headaches form my RLS. I do still respond well to ibuprofen.
Hi, is there a particular reason you take the diprydiamole 90 mins before bed? Is it to give it time to work?
I picked up my diprydiamole from the pharmacy today. The instructions are to take at night but that's not especially specific.
Also, do you still get headaches or have they dissipated?
No particular reason I take it 90 minutes before bed. My lovely Doctor told me to “play with it”. Yeah, I hate that.
Last night I took it two hours before bed and it seemed more effective.
I can say that it really does help to take Dipyridamole on an empty stomach.
Have you tried Dipyridamole yet?
I'm just starting it tonight ...50mg to see how I tolerate it. I'm also taking my usual meds for the time being. Mine comes in 100mg capsules (I had to have it specially compounded).
Do you mean taking it on an empty stomach reduces headaches or other side effects?
I think taking Dipyridamole on an empty stomach increases the effectiveness. It's states that on the package I was given. I have taken Dipyridamole with a meal and have had minor RLS symptoms.
I do still get minor headaches at this point, it's just part of the life, not too bad. I do still take Ibuprofen occasionally, it really helps me sleep.
In the study the average effective dose was 218mg. I am a bigger person. I quickly went to 300mg, they come in 75mg pills for me. For me the pills are expensive $90 a month, roughly. I take 4 at one time.
Thanks for all the information. The 50mg dose last night went okay...am planning to increase slowly as I seem to have a sensitivity to many meds.
The cost is a real factor...i paid AUD 400 (approx USD 300) for a six-week supply as the raw ingredient had to be shipped to Australia and then compounded 🙁
So, here's hoping it works.
Please keep us updated! So thankful!
hi can you update us ? Are you still using dipyridamole?
Certainly, I take Dipyridamole every night about an hour before bed, but it doesn’t really seem to matter when. I never really have a bad night anymore. There are a few twitches at bed time but they are much less severe. I recently started wearing a sleep mask. I love it have warn it every night for a couple months. I really think the Dipyridamole helps. I also supplement with iron every night.
Anyone taking dipyridamole?
Dipyridamole working great
Vaginal bleeding with dipyridamole?
