Dipyridamole further update

[involuntarydancer]

It is several months since I stopped dipyridamole after taking it for about a year for my rls. Thought I’d report that I seem to continue to benefit from the good effects. I have already reported that the overall impact was slightly disappointing. The urge to move rls did not improve at all but - weirdly - the awful creepy crawley sensation disappeared completely. I never would have thought they could be separate. The other major benefit of dipyridamole, a greater energy and sense of being ‘myself’ during the day, also remains.

I am currently taking one of my infrequent breaks from pramipexole (in the hope of prolonging it’s useful life and deferring the re-emergence of augmentation) so my symptoms are quite bad at the moment. Urge to move is disrupting sleep all night but no creepy crawley feeling at all. It is surprising how much less awful the rls is without it (though obviously would much prefer to be asleep!). I am also still much less dopey and ‘drawn’ during the day even though getting no sleep.

So all-in-all I’m really glad I embarked on the dipyridamole experiment.

[Hidden]

Hi ID, thanks for that update. I'm glad to hear that the dipyridamole has worked in a sense for you.

I'd just like to share my current regime with you because at the moment it's working ok and has done for about 6 weeks (which I know is early days). I had an iron infusion 2 months ago (500 milligrams of iron) and now I take 175 milligrams of Lyrica and 62.5 grams of pramipexole nightly and also alternate between 0.75mg of clonazepam or 20mg of temazepam on a nightly basis. Reducing the pregabalin has really helped reduce the brain fog and disconnected feeling (if I recall correctly, you're not a fan of Pregabalin) and keeping the pramipexole low reduces the rapid augmentation I seem to experience at higher doses.

I'm now going to look into SIBO as Jools posted a link earlier today showing the correlation between rls and SIBO ( which follows a 2010(?) study which showed a high prevalence of SIBO in RLS patients.

[involuntarydancer in reply to Hidden]

Hi Amrob,

nice to hear from you and good to know how you’re getting on. That is half the dose of pramipexole (if I understand the differing UK/US doses correctly) I take. I have managed on it for nearly a year and a half but I now wonder am I particularly resistant to augmentation. I was on a really high dose of pramipexole before I augmented originally and judging from how I am coping during my pramipexole break, I haven’t augmented at all this time round. Nothing else works nearly so well for me.

It’s not that I’m not a fan of pregabalin, it’s just that I couldn’t get on with it at all. It had minimal impact on my rls and significant side effects - I can totally relate to the problems of brain fog and disconnection. I would - and do - entertain the idea of any drug that helps my rls. I would have zero quality of life without drugs. Judging from other people’s experience, a good deal of tweaking can be required to achieve optimal impact with pregabalin.

I notice that lots of people find that the benefits of iv iron are only felt after about 6 weeks or so so you might find that your symptoms continue to improve. I hope so.

I would definitely explore the diet/SIBO connection. My brother was recently diagnosed with gluten intolerance. Apparently gluten can block the absorption of iron in those intolerant of it and as my iron is relatively resistant to my attempts to increase it, I wonder is this an issue for me also. If only it were as easy to acquire the discipline as to formulate the theory ... I definitely find a ‘clean’ diet is better for my rls.

[Parminter]

This is so intriguing, thank you.

First, you still feel a difference a few months after stopping the drug, and second you can separate the 'nasties' into two distinct parts.

Have you reported this to Doctor Sergi Ferre? He might be very interested, and he might have an explanation for you.

[involuntarydancer in reply to Parminter]

I contacted Dr Ferre ages ago when I was still taking dipyridamole. He was interested and very welcoming of the communication. Maybe I should send him an update.

I too found it surprising/fascinating that the sensations separate into the two ‘nasties’ so completely. I find the urge to move considerably more bearable without the creepy crawlies. I don’t get the painful kind of rls and wonder what impact dipyridamole would have on that.

[Hidden]

Thanks for this information. Although I've never tried dipyridamole myself, you have said something which relates to my own experience. I have been raking Pramipexole for years and have augmented. The last few years I have hardly experienced the creepy feeling at all. When I have an RLS episode it almost immediately goes into "urge to move", actually uncontrollable twitching.

I am now in the process of weaning off Pramipexole. I've noticed that it now takes longer for the twitching to start, in fact don't experience it as much at all. However, I am now getting more of the creepy feeling.

It occurs to me that the creepy feeling and urge to move are separate in some way.

I prefer twitching to the creepy feeling, it's less uncomfortable.

[Pranjal3107 in reply to Hidden]

How is your weaning off going ? Also, what was the duration for which you took pramipex ?

[Hidden in reply to Pranjal3107]

Weaning off seems to be going well, I have no major problems with it. I have had a couple of bouts of depressive like symptoms which only lasted a few days

I started taking Pramipexole in about 2006 and was told I could increase it up to 540 micrograms, which I did. I was taking that until September 2018. I have been taking approx 132 micrograms for the last 2 weeks and will reduce to 88 micrograms in another 2 weeks, 44 micrograms in 6 weeks and none in 10 weeks. Unless that is. something untoward happens.

[Pranjal3107 in reply to Hidden]

Wish you all the luck in the world. Watching my mum struggle with RLS I know exactly the feel. Are you taking any additional med for the weaning ?

[Hidden in reply to Pranjal3107]

Luckily I'm not struggling at the moment. I try not to struggle any time.

I have been taking Gabapentin since last August, it may be that helping me.

[Memmy]

May I ask why you stopped dipyridamole

[involuntarydancer in reply to Memmy]

I wasn’t sure if it was having any positive impact and I don’t want to be on any medication unnecessarily. I didn’t notice any disimprovement when I discontinued so I stayed off it. It was definitely the dipyridamole that caused the cessation of the creepy crawley sensation.

[Pranjal3107 in reply to involuntarydancer]

So you aren't taking any meds for your RLS ?

[involuntarydancer in reply to Pranjal3107]

If only! I reintroduced a low-ish dose of pramipexole (0.088mg) about a year and a half ago. I take intermittent breaks from it in hope of deferring augmentation. I augmented after taking increasingly high doses over a ten year period and came off it in 2016. I sometimes need a boost to the pramipexole and I use Kratom for that. When I am on a break from pramipexole (which I am at the moment), I use Kratom and some OxyContin (as little as possible as I hate the process of withdrawing from OxyContin) to manage.

I am one of the lucky ones who responds well to raising iron levels and have taken to eating chicken livers to supplement iron levels. I think I am also relatively resistant to developing augmentation (touch wood).

[involuntarydancer in reply to involuntarydancer]

I should emphasize that returning to pramipexole after having augmented is counter-indicated and very few people do it successfully. Having augmented once, most people start to augment again very quickly. It has worked for me so far but could fail at any time. My iron levels are much higher now which I think makes a big difference for me so I need a lower dose of drug and also protects against augmentation. Also I suspect that I am relatively resistant to augmentation. I think that I don’t augment too readily.

[Memmy]

Hi, Im always interested in your comments. Are you still getting relief from Kratom?

[involuntarydancer in reply to Memmy]

Hi Memmy, great to hear from you. Yes, I still find Kratom affords me the best relief and enables me to feel the closest to normal of any drug regime I have tried (and I have put in the time experimenting). However, I noticed that my intake was creeping up so have implemented a temporary cutback in the hope of resetting myself. I haven’t been on here in a while due to other issues so feel out of touch. How are you getting on?

[Memmy]

Lovely to hear that you are getting on ok. I cant complain either. Still the same legs but basically controlled. I still have the legs every night but I take the very lowest dose of mirapexin at around 9.30 every night. I drink a coffee if they stop me from sleeping. I want to try Kratom to see if I can stop the mirapexin. Im not in Athens now but when I go back I have found a shop which sells it so Im looking forward to experimenting. You said 1 teaspoon in some grapefrut juice at night. Is it only grapefruit juice or can I use other juices. Its quite expensive but if it works it will be worth it. Do you get yours online? Keep well

[involuntarydancer in reply to Memmy]

Hi Memmy,

I have ordered it online from dekratom.nl which I find a good company. I think it’s much cheaper to get it that way than in a shop. It is becoming increasingly difficult to source as it is illegal where I live and online companies no longer ship here due to the regularity with which it is seized by customs. Another forum member who lives on mainland Europe has very kindly helped by posting it to me during the Covid crisis when travel is so difficult. I would be lost without that.

Grapefruit juice is supposed to help potentiate Kratom. I started noticing some heart pounding with it so switched to orange juice with some added lemon juice (orange juice on its own was too sweet and tasted awful with the bitterness of the Kratom). Some people take it with water but the taste .... 😒

The days when I only needed one teaspoon in the evening seem very long ago but it’s a good starting point. In fact I’d probably start with slightly less than a full teaspoon.

I bought a micro weighing scale online because I wanted to be sure of my dose. I take about 3mg at bed time (that probably is about a teaspoon). But if I only took one dose at bed time, I’d need at least two more through the night. I discovered that if I take it during the day, I rarely wake through the night. It seems to be cumulative in effect. Also this ensures my daytime symptoms are controlled.

So now I take: @ about 11am a dose of 2mg; & again 2mg @ 3 or 4 pm; a dose of 3mg at about 7 or 8 pm and another 3mg at about 11 or 12pm. I also still take 0.088mg mirapexin at about 8 or 9pm.

Usually that allows me to sleep through the night!!!! For so long that seemed an impossible dream. but I do usually keep a small shot (2mg) of Kratom by my bed for if legs kick off through the night. So my dose is considerably higher now. I also have to contend with a degree of cognitive impairment during the day after the Kratom dose as it makes me a bit ‘muzzy’ but that is off-set by the benefit of a relatively undisturbed night.

I do worry about the amount I take and at present I am taking a very reduced amount (just one dose of 2mg daily in the evening) in the hope that I will reset my sensitivity to it. I am using oxycodone instead. I find it much less effective and much more disruptive to mental well being and to sleep (it causes me to be alert at night). Sorry this is so long but thought my experiences might be helpful.

[Memmy]

Thanks so much for sharing. It really helps and we learn from others. I will try with a level teaspoon and see what happens. Do you know why it is illegal in some countries? I hope I can get it as Im tired of taking meds. Thanks fir your help

[involuntarydancer]

Hard to know exactly why it's illegal as studies repeatedly show that the incidence of death related to abuse is exceptionally low - much lower than for many wholly legal drugs, not least paracetemol and alcohol. Perhaps it is perceived as being a drug only used for recreational purposes of which we have little cultural experience or maybe there is a similar push behind the scenes as that in the 1960s for cannabis to be made illegal - because it is an unprofitable but often effective drug.

It does seem to be possible to lobby legislators in countries where it is currently not illegal but where there is a push to outlaw it. In the US efforts to outlaw it have been repelled in many states by enthusiastic lobbying by people who successfully use it to manage medical conditions. I recently read that the main cohort of users in the US is middle aged and middle class - which may explain why they were listened to.