dipyridamole

[Caravan24]

Anyone know dose of this? Might have more chance of getting this than other drugs. Seem to have an understanding gp but reluctant to prescribe much!!!

[amrob123]

Yes, WideBody on this forum has used dipyridamole successfully for some time now. I have resumed using it also. I initially tried it about 2 years ago, but stopped because of the headaches. This time I'm taking a lower dose and it's not so bad. I am looking to increase my dose as i'm only on 100mg. Headaches are a very common side effect. It's definitely worth trying. Search dipyridamole using the search function on this forum and you will find past posts on it.

[SueJohnson]

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. Headaches tend to disappear or lessen after around 5 days although WideBody said after several weeks. For some they are severe enough to cause them to stop it.

[amrob123 in reply to SueJohnson]

From WideBody's posts, he/she took painkillers ongoing to deal with the headaches from dipyridamole. While on an effective dose of dipyridamole, the headaches didn't lessen for me. Ar a low dose, they are tolerable.

[WideBody in reply to amrob123]

Taking Dipyridamole on an empty stomach is definitely helpful for sure. I am not sure how Sue knows that, but I concur.

Also, yes, I take Ibuprofen because it helps the headache for sure, although I don't get the headaches like I used too.

I take the ibuprofen because the two of them together takes away my RLS. I can't explain it. I have yet to have an RLS episode where the combo of Dipyridamole and Ibuprofen didn't resolve it in an hours time, and I am asleep. I then sleep very good.

I should add. I have stopped taking Dipyridamole daily. I just don't need it anymore. However, I have bad nights and sometimes streaks where I am more comfortable taking Dipyridamole. I now take Dip as needed. Before a long car ride? Just not feeling it at night. Once or twice after I went to bed and RLS kicked me out.

A 30 day supply lasted about 5-6 months. I need to get more, it's a bit expensive. I was prescribed 300mg a day 4 * 75mg pills. So a months worth is 120 * 75mg pills about $200. I have never taken more than 225mg at once.

To add to this, I also take supplemental Iron with vitamin C, Vitamin D, K2, Magnesium and calcium. All of which I think helps my RLS.. Primarily keeping my Ferritin above 100 is the goal. It used to aim for 300, then 200, now a ferritin of 100 seems to work for me.

I rambled too much. Sorry.

[violetta254]

I am taking 150 mg along with 10 mg of methadone. I am not getting headaches but soon will try increasing to 225 mg and trying to go down to 7.5 methadone. In the study, the effective dose was 225-250 mg of dipyridamole.

[amrob123 in reply to violetta254]

Methadone is a heavy duty painkiller. It would be a pretty severe headache it couldn't conquer!

[violetta254 in reply to amrob123]

Methadone does absolutely nothing for any kind of pain at the 10mg dose. I just don't get a headache from dipyridamole at that dose.

[amrob123 in reply to violetta254]

2.5mg is the starting dose for pain relief. WideBody gets relief with ibuprofen.

[violetta254 in reply to amrob123]

What are saying? I am unclear if you are arguing about methadone for RLS or what?

[Classof69 in reply to violetta254]

I have both, but I am saying if you have RLS there is no need for mithadone oxy or Mirapex , I haven’t had RLS now for a month since taking Seratame. I still once in a while take Mirapex.

[violetta254 in reply to Classof69]

Please stick to what works for you rather than what should work for me. Seratame did nothing for me. And "once in a while" taking Mirapex would not work for me. I spent a lot of time, energy and pain getting off of Mirapex after it augmented. I just was able to lower my dose of Methadone with a 150 mg dose of dipyridamole and am hoping I can lower it further and I have no side effects from it. So this is information for others who want to try it, not an argument about what works and doesn't.

[Typicallygaslit]

I tried it, got explosive diarrhoea and something else I forget.

[WideBody]

I have a bit of experience using Dipyridamole and it is helpful in removing the symptoms of RLS, before I explain how Diyridamole works for me, I have a couple questions.

The theory behind Dipyridamole is the Adenosine Hypothesis of RLS.

ncbi.nlm.nih.gov/pmc/articl...

Low brain iron creates a deficiency of adenosine in the brain. Insufficient Iron Stores creates low brain iron. Dipyridamole is an ENT1/ENT2 inhibitor in the brain and increases intercellular adenosine. (In reality, I think the goal is just an ENT2 blocker)

Before starting Dipyridamole, have you had a morning fasted full iron panel? Does supplemental iron help your RLS? If so, then Dipyridamole may help.

I can get into more details if you are still interested. I didn't want to waste your time.

[Caravan24 in reply to WideBody]

I would love more information. Take daily iron and magnesium. Have not taken medication for 3 months but getting very little sleep

[WideBody]

Sorry it took so long to respond. When I started Dipyridamole a couple years ago, it was a wonder drug. It made me feel like a person without RLS. However over the course of several month, Dipyridamole would take about 80-90 of my RLS away. I also found I didn't need to take it. Eventually I asked to take it on an as needed basis.

Dipyridamole really helps, but to get the other 10-20 percent I take Ibuprofen.

In the beginning I didn't take ibuprofen, I would get headaches. It took a month or two, I don't get headache anymore.

I still have to watch my iron levels. It is important to take Dipyridamole on an empty stomach away from fat as it inhibits absorption.

I wish I would have started with Dip, instead of DA drugs/gabapentin/pregabalin. The side effects are so much less and Dipy is so much more effective.

Good luck.

[amrob123 in reply to WideBody]

Hi WideBody, I'm resuming my dipyridamole trial... i'm a little leery of being on it for too long given that doctors keep giving warnings about internal bleeding ( i don't fully comprehend the level of risk). Can you tell me how long you took it for consistently, before you could just take it on an as-needs basis? Also interested to know how you're going these days?