Restless Legs Syndrome (RLS) Discussion Board

Posted: **Fri May 25, 2018 1:08 pm**

legsbestill wrote:The start of the post (the whole first paragraph) is actually a quote from yawny which was meant to be in a yellow box. I will try to amend it.

In fact Dipyridamole continues to work very well for me. I love it. In spite of the fact that I am having some sleep interruption at present, I am ‘myself’ and feel well and energized during the day and I function much better with no brain fog. I attribute this entirely to dipyridamole. It has been life changing for me.

Yay!!

Send a pm to the moderators, I don't know if they can modify a post, but I'm sure they can delete it. Yours without the yellow quote box is extremely confusing.

Posted: **Sat May 26, 2018 5:12 am**

stjohnh wrote:
legsbestill wrote:The start of the post (the whole first paragraph) is actually a quote from yawny which was meant to be in a yellow box. I will try to amend it.

In fact Dipyridamole continues to work very well for me. I love it. In spite of the fact that I am having some sleep interruption at present, I am ‘myself’ and feel well and energized during the day and I function much better with no brain fog. I attribute this entirely to dipyridamole. It has been life changing for me.

Yay!!

Send a pm to the moderators, I don't know if they can modify a post, but I'm sure they can delete it. Yours without the yellow quote box is extremely confusing.

Modified.

Posted: **Sat May 26, 2018 10:29 pm**

Thanks for that

Posted: **Sun May 27, 2018 7:31 pm**

legsbestill wrote:Thanks for that

Posted: **Sat Nov 13, 2021 5:53 am**

stjohnh wrote: ↑
Thu May 24, 2018 3:50 pm
Rats, sorry the dipyridamole didn't work for you. I continue to have a very positive response.

Are you still using diprydimole?

Posted: **Sat Nov 13, 2021 2:56 pm**

No. My IV iron infusions resolved nearly all my RLS symptoms. I still have mild sleep problems which respond well to THC. I have considered restarting dipyridamole to see if it would take the place of THC to help me sleep, but haven't done that yet.

Posted: **Mon Nov 15, 2021 2:01 pm**

I started out on 75MG for 5 days, and have titrated up to 150 mg.

At 75MG, it not give me insominia, but it did not control my urge to move symptoms well. At 150MG, it gives me pretty severe insomnia, but it controls my urge to move well; allowing me to reduce the mirapex i take. Both doses provide me with a more refreshed feeling when waking up despite getting the same amount of sleep quality and quantity.

Gabapentin and Lyrica also give me insomnia, which also act on excess glutamate in the brain and should be making me more tired rather than less. Any ideas why this may be happening?

Posted: **Mon Nov 15, 2021 3:27 pm**

Oozz wrote: ↑
Mon Nov 15, 2021 2:01 pm
I started out on 75MG for 5 days, and have titrated up to 150 mg. ...

Gabapentin and Lyrica also give me insomnia, which also act on excess glutamate in the brain and should be making me more tired rather than less. Any ideas why this may be happening?

Not really, other than normal sleep is a far more complex process than most people realize, and our differing genes can make one person with RLS react to the same drug in different ways than another person with RLS.

Posted: **Mon Dec 13, 2021 12:29 am**

stjohnh wrote: ↑
Sat Nov 13, 2021 2:56 pm
No. My IV iron infusions resolved nearly all my RLS symptoms. I still have mild sleep problems which respond well to THC. I have considered restarting dipyridamole to see if it would take the place of THC to help me sleep, but haven't done that yet.

Did the quality of your sleep improve as well? I recall you saying that you track your sleep and your % of deep sleep was very low while on medications.

Posted: **Mon Dec 13, 2021 3:49 pm**

Subjective sleep quality improved, but the proxy I was using for deep sleep (heart rate variability) didn't change much. But the only real way to check is with a brain wave study (dedicated EEG type sleep instrument, formal sleep study, etc.)

The big improvement was in a feeling of well being during the day.

Posted: **Sun Jul 03, 2022 7:29 pm**

So I'm going to revive this topic

I've finally started a mere 25mg dipyridamole nightly for 4 nights now
Even at this very low dose I've noticed a moderate improvement of RLS onset symptoms in that they occur later and less severe, and a slight improvement in the length of duration of rebound symptoms overnight.
.... that said, rebound rls from my 2 separate Codeine doses still wakes me up and keeps me up.
I also experience the same tiredness as others had 30 minutes after taking the med, and if taken on an empty stomach , this continues for hours with extreme cognitive impairment
It seems hard to hit the sweet spot.

I have been tapering my Clonazepam very slowly from 0.75mg to now about 0.1mg .
I imagine this has contributed to a very significant elevation of RLS the last few months .
Increasing Codeine a bit was no help so I finally added the dipyridamole.
I believe the combination of Clonazepam, small dose of thc oil, vaporized thc , Codeine and the dipyridamole now causes an extreme short term memory loss.
I feel extraordinarily impaired when this is occurring.

I am reluctant to increase even this minimum dose.
It does provide a moderate increase of coverage but also seems to have its drawbacks .
I still may entertain the idea of Codeine contin to combat the overnight rebound
I may also entertain the idea of reintroducing a fraction of a 1mg patch of rotigotine yet again (I've augmented on a DA numerous times)
.... it seems that everyone needs to "cheat" by going back to a DA at a very low dose
I've never tried a 5 days on 2 days off approach .

My point is ... I'm not optimistic that adding dipyridamole will help me significantly .
Perhaps a higher dose may help but the brain mush is too much
... maybe I need a few more days to adjust (?)

Maybe I need Codeine contin for longer periods of coverage
Maybe I yet again need a bit of a DA (although I swore never again )

Sigh

Edit : Is anyone else even taking this for RLS ??
I may be more inclined to take it if I heard another success story .
I'm a bit deterred otherwise

Posted: **Mon Aug 15, 2022 3:47 am**

Is anyone else even taking this for RLS ??
I may be more inclined to take it if I heard another success story .
I'm a bit deterred otherwise

I wish. I just convinced my doctor to prescribe it, then the pharmacy got back to her and told her my insurance doesn't cover it. So she said forget it. I see her again in Sept. I'll tell her I want to pay out of pocket.

Posted: **Sun Sep 04, 2022 11:00 pm**

badnights wrote: ↑
Mon Aug 15, 2022 3:47 am

Is anyone else even taking this for RLS ??
I may be more inclined to take it if I heard another success story .
I'm a bit deterred otherwise
I wish. I just convinced my doctor to prescribe it, then the pharmacy got back to her and told her my insurance doesn't cover it. So she said forget it. I see her again in Sept. I'll tell her I want to pay out of pocket.

It took me weeks to find an online compounding pharmacy to make this for me .
I'm not even sure you will be able to obtain aggrenox anywhere in Canada
... the pharmacy clearly has something that your insurance wouldn't cover though ... not sure what.
Pocketpills is a legit online pharmacy that will make whatever dose you want at a very reasonable price .

I actually stopped taking my Dipryridamole.
It seemed to help a bit initially, but even at 25mg it hit me super hard on night #4 to the point I was very uncomfortable to say the least.
When I stopped it my RLS ironically got temporarily better .
It perhaps hits me differently given my platelet count is quite low.
When I cut my finger I need a bandaid for a week .
Each time I'd remove it would start bleeding again.

I just feel like a long term course of Dipryridamole would have more risks than benefits given that it is an anticoagulant.

As I mentioned before , if discontinuing my Clonazepam after 3 decades doesn't stop my RLS symptoms (which it probably won't) my next step is my already prescribed Codeine contin.
If thar doesn't work, I'd rather avoid being full blown opioid dependant, but I do also have an Rx for the Butrans patch (which is Buprenorphine)

If you want affordable Dipryridamole, pocketpills will almost definitely ship to Yellowknife .
I used then to fill my first and only dipyridamole script .

Edit .... I forgot to mention I did cave and tried 0.25mg of neupro patch after yet another very long break.
I only wore it at night
I should have tried the 2 days on 5 days off (or even 5 days on 2 days off)
I augmented by night 8 or 9 with strong RLS in my arm and haven't tried going back.

Ecopipam or something similar cant come soon enough for those of us that can't take opioids 24/7

Posted: **Sat Sep 10, 2022 1:56 am**

Ecopipam or something similar cant come soon enough for those of us that can't take opioids 24/7

At first I hated the thought of this med - - it seemed to just be covering up the problems caused by DAs, not actually fixing anything. Now I don't care, I'd love to be on something that didn't make me worry about supply and crossing borders.

Posted: **Thu Oct 13, 2022 1:36 pm**

Hi Holland. Are you still there? I, too, am a "retired" physician (actually stopped working when I became too sleep-deprived to continue) and I, too, have been very interested in the dipyridamole studies out of Spain. I would love to experiment on myself if I could get a doctor to prescribe it. I used to have pure RLS sensory sx for about 10 years but when I was started on ropinerole 3 years ago they changed to pure motor sx (I wonder why??). I have been off all DAs for quite some time but continue to have only the motor sx--twitching and jerking whenever I doze off, night or day, unless I am medicated. The dipyridamole study showed pretty good improvement of PLMs so I would love to get my hands on some. Any way to treat this disease without mind-numbing drugs would be a blessing. I desperately need some sleep. So, Holland if you are still following this forum please let us know how it is going with the dipyridamole.
Paul

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