ecopipam

[involuntarydancer]

Following the (very small) study by Dr. Ondo into the possibility of using ecopipam to counteract augmentation by DA drugs I wondered if anyone had an experimental GP or neurologist who had suggested going down this route?

mdsabstracts.org/abstract/t...

[Joolsg]

Very interesting. I know there's also a doctor in N. Carolina who has patented a med to prevent augmentation. I wonder if it's Ecopipam or a similar med.If I were augmenting on a DA I would definitely beg my doctor to let me try Ecopipam. It's the Holy Grail of RLS- to find something that prevents Augmentation.

[WideBody in reply to Joolsg]

I still would never take a DA drug again.

[Joolsg in reply to WideBody]

I agree. Unless they could prove 100% that ecopipam stopped augmentation completely. I don't think I'd make it through another withdrawal from DAs. Still have occasional flashbacks to that traumatic time.

[Hidden]

I saw my sleep specialist today and he still maintains dipyridamole helps prevent augmentation on DAs even though I haven't come across any reference to it in the literature. (I'm aware you've experimented with dipyridamole in the past...)

[LotteM in reply to Hidden]

If he or she can prove that - even with a little doubt left, as is usual in science - it would be very important to see that in print in a peer - reviewed journal. But so far only small studies of dipyridamole for RLS and no mention of its function in preventing augmentation. To my knowledge, augmentation is not even fully understood. In sum, I am hesitant to accept your doctors belief. Incidentally, who is she/he? ( if you want to share)?

[Hidden in reply to LotteM]

Yes, it puzzles me also as he has mentioned it on at least 2 or 3 occasions. I was looking to try dipyridamole as a treatment in itself (ie monotherapy) as I'm not taking a DA.This being the case, I didn't press him on the subject.

The doctor in question is a sleep and respiratory specialist in Australia. He is generally knowledgeable and also progressive in his approach. Happy

to PM further info about him.

[involuntarydancer in reply to Hidden]

Interesting that he is a respiratory specialist. The only specialist I have heard of in Ireland to use iron therapy in the treatment of rls is also a respiratory specialist. I presume they fall into this area via the treatment of sleep apnea. Maybe respiratory specialists are a little more likely to keep up to date with literature. It would be great if dipyridamole did protect against augmentation. It seems to have relatively few side effects and can be beneficial to those in need of blood thinners. But, like Lotte, I haven't heard of it being used in this way before.

[Hidden in reply to involuntarydancer]

Yes, i don't know whether you have an equivalent in Ireland/UK but as a respiratory and sleep specialist he sees patients with/for• Obstructive and Restrictive Lung Disease

• Asthma And Allergies

• Sleep Apnoea

• Restless Leg Syndrome

• Periodic Limb Movement Disorder

• Insomnia

• Parasomnias and Hypersomnias

• Fatigue Management

• Forensic Sleep Medicine

[involuntarydancer in reply to Hidden]

It will be interesting to hear how you get on with dipyridamole. Have you started it yet? I am surprised more people don't look at trying it. It seems to be reasonably well tolerated - at least by comparison with other rls treatment drugs. I have a suspicion it will turn out to be one of those treatments, like pregabalin, that has a lower incidence of success amongst those who have been through augmentation.

[Hidden in reply to involuntarydancer]

I haven't started the dipyridamole as yet. There have been some issues with getting my prescription filled. There is a supply problem in Australia and so my pharmacist has to order it from the US. Because I would be using it off-label, the pharmacist wasn't comfortable with a script issued by a GP, and so I had to go back to my sleep specialist for a script.

Anyway, at my recent appointment, I asked my specialist for a referral to repetitive Transcranial Magnetic Stimulation (rTMS) as this is something i'm very keen on trialling . The specialist isn't keen on me pursuing more than one therapy at a time (understandably) and so didn't issue a script for dipyridamole.

So, i'll be trying rTMS and if that doesn't work, will look at obtaining dipyridamole. I'll report back on my experience of rTMS but at this stage it will be approx 3 months before i know the outcome as it takes 25 - 30 sessions, and then, as forum member Arjiji reported, it took approx one month after that to experience the benefits.

Like you, i'm very surprised that more people haven't considered trying dipyridamole.

Interestingly, I took a DA (pramipexole) for approx 12 months (and experienced augmentation in that time). I then switched to pregabalin and find that works well to control my limb movements. Interestingly I never had the problem withdrawing from DAs that other members report.