Dipyridamole

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Polar Bear
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Re: Dipyridamole

Postby Polar Bear » Thu Feb 08, 2018 6:24 pm

Holland, thank you. I am very happy to have learned about the half life and decline from your post.

I agree with you regarding the exhaustion of lack of sleep - for many years I have worked on 3 - 4 hours nightly. I also understand that although we know there is a benefit to pacing any changes.... We are desperate to find out 'could this work". The shortish half life makes a difference.

You are doing so well
Good luck
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Thu Feb 08, 2018 6:47 pm

Holland, given the situation, I think that dropping back to 150 would be a reasonable next step in your experiment. I went back and checked and you said that the NIH test started at 100 mg then went to 200 and then 400 with patients who were not being treated otherwise. That suggests to me that , on average,100mg wasn't enough and that 400 was probably didn't provide any added benefit or made things worse. Since you have 75mg pills and are not getting much sleep at 225mg, 150 would seem to be the logical next step, especially since it puts the 200mg level sort of in the middle. Even if you didn't have total movement control in the evening, getting more sleep would be worth it.

The other wild card in all of this is iron levels. We have no way of knowing what sort of serum iron levels the NIH subjects had versus yours. And no one has any idea what the brain iron levels are for any of you. Since BID was tied to adeonsine receptor issues in their mice, it would make sense that the required dipyridamole dose might vary with BID. Of course, that is one of the variables that future tests will need to look at since this continues to look very promising, in spite of your sleep problems.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Dipyridamole

Postby stjohnh » Thu Feb 08, 2018 7:50 pm

:shock: I want a stem cell injection today that fixes my faulty DNA and corrects the faulty serum-to-brain iron transport.

How about an app that shows your brain iron level when you hold your phone up to your ear?
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Thu Feb 08, 2018 8:01 pm

Rustsmith wrote:... you said that the NIH test started at 100 mg then went to 200 and then 400 with patients who were not being treated otherwise. That suggests to me that , on average,100mg wasn't enough and that 400 was probably didn't provide any added benefit or made things worse...


The dipyridamole trial was actually conducted at the Sleep Center in Madrid. I have no information on how the drug titration was carried out. The dose range may have been something as simple as the Spanish equivalent of the FDA lists the dosage range for dipyridamole as 100 - 400 mg daily.

In the initial phases of my experiment I ramped up the dosage quickly, assuming, probably erroneously, that since I had severe restless leg syndrome and the trial participants probably had mild to moderate restless leg syndrome that I probably would need a dose at the higher end of the range used. Generally for most medications I use a dose somewhat less than the usual dose for most people, it seems as though my body is somewhat more sensitive to many drugs than most people. For instance for sleep I had been using 150 mg of gabapentin, lower than most people that use gabapentin.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Thu Feb 08, 2018 8:40 pm

Holland wrote:I'm considering taking either 0.0625 mg pramipexole at midnight if I am still not asleep or perhaps 10 or 15 mg of THC or perhaps 100 mg gabapentin
I wrote:activation of A2A might be blocked by dopamine... at least, they say that catalepsy induced by an A2AR agonist can be counteracted by a D2R agonist (top of p. 7). So maybe that tiny bit of pramipexole is necessary?
Maybe the choice should be pramipexole, a tiny dose.

I want a stem cell injection today that fixes my faulty DNA and corrects the faulty serum-to-brain iron transport.
How about an app that shows your brain iron level when you hold your phone up to your ear?
:lol: :lol:

Steve wrote:The other wild card in all of this is iron levels. .... Since BID was tied to adeonsine receptor issues in their mice, it would make sense that the required dipyridamole dose might vary with BID.
True.
Beth - Wishing you all restful sleep tonight
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stjohnh
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Re: Dipyridamole

Postby stjohnh » Thu Feb 08, 2018 9:52 pm

Beth, yes, my inclination, if no sleep by midnight, is to take 0.0625 mg of pramipexole.
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Fri Feb 09, 2018 6:37 pm

WOW! Last night was pretty remarkable. This will probably be a somewhat long post so the punchline first and then those that want to can read the details.

Last night I took 112.5 mg of dipyridamole. I then SAT for 3 hours watching the Olympics. I have not felt quite so normal for at least 5 and possibly 10 years for that 3 hours. I still had trouble sleeping so at midnight took 0.0625 mg pramipexole. An hour or so later I went to sleep for 6 hours, double or triple what I had been sleeping for the last week.

Details: I decided to take 75 mg dipyridamole at 6 p.m. Ordinarily, my urge to move starts around that time, yesterday it actually started earlier, possibly because of my extreme lack of sleep. A little later I sat down and watched the Olympics for about 3 hours. My legs and body felt completely normal. I had not felt that for many years. Even though the pramipexole does a fairly good job of controlling urge to move, my muscles and body don't feel completely normal while taking it. Ordinarily I wouldn't be able to sit down for more than about 5 minutes during this time and would watch TV mostly standing up. At about 11 I noticed slight urge to move and decided to take an additional 37.5 mg dipyridamole. I watched TV for a while longer then decided to try to sleep. I lay in bed for an hour or so without any indication that I was actually going to sleep even though I was quite tired. At midnight I took 0.0625 mg of pramipexole. I went to sleep about 1 a.m. and except for a couple of brief periods when I was awake I slept until 7:15 a.m. I woke up feeling a little groggy with a little headache.

Items that stand out in my mind most about this is how normal I felt taking the dipyridamole compared to pramipexole even though the pramipexole also does a pretty good job of controlling urge to move symptoms. The other thing that stood out on my mind about this is how much difference a tiny dose of pramipexole made in this situation. Just a small dose of pramipexole increased my sleeping from 2 hours to 6 hours.

My plans from here are to repeat the last night's medicines for at least a day or two to be sure the results are stable. After that I plan on giving trials of dipyridamole without pramipexole but using gabapentin, kratom, or THC in hopes of getting decent sleep without having to use pramipexole.

The very brief description of the dipyridamole trial reported in the adenosine paper indicated that the responders had improved sleep. However, it is possible that the improvement in sleep that the responders noticed was due to reduction in urge to move symptoms, and not due to the primary sleep disturbance that people with more severe RLS have. In other words, primarily dopamine path effects rather than glutamate path effects
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Sun Feb 11, 2018 8:45 pm

Rustsmith wrote:... So I guess it raises the question of whether the opioid causes the hyperarousal for us or it the opioid just treats the movement issues and leaves us with hyperglutamate induced insomnia because the opioid only treats the hyperdopamine side of RLS.


That's what I had been starting to think, that the "opioid hyperarousal" was actually just the opioid treating the urge to move, leaving the hyperglutamatergic hyperarousal untreated.
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Sun Feb 11, 2018 10:21 pm

Now that I am getting several days experience using a combination of 112.5 mg dipyridamole + 0.0625 mg of pramipexole I am starting to notice some details. I have been taking the initial 75mg of dipyridamole at 6 p.m. and the pramipexole at 7:30 pm

I am having mild urge to move symptoms by 6 p.m., they were a little worse last night than the previous night but not terribly severe, and were at about the same level at 7 p.m. or 7:30. That is telling me that I need a somewhat higher dose of dipyridamole to control urge to move symptoms, however I paid attention to what happened after I took the dose of pramipexole. 45 minutes after taking the pramipexole dose the urge to move symptoms resolved completely. So the pramipexole is helping the urge to move symptoms in addition to helping the sleeplessness that I was having previously. As on the other night I have been taking the additional 37.5 mg of dipyridamole at about 10:30. Last night I got almost 6 hours sleep, and awoke more refreshed than the previous couple of nights. It still amazes me that such a small dose of pramipexole can make such a big difference.

I think I will start moving the time of the pramipexole dose earlier in the evening, hopefully getting it to 6 p.m. along with the dipyridamole dose without causing the brief period of severe restlessness I had when I was first starting the experiment.
Blessings,
Holland

yawny
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Re: Dipyridamole

Postby yawny » Tue Feb 13, 2018 7:01 pm

Isn’t strange how you learn something new and then it immediately pops up in an unlikely place? I’m putting together an information packet on Low Dose Naltrexone (LDN) for a family friend recently diagnosed with cancer and I’m scanning a page and see Dipyridamole...wait, that’s what Holland is experimenting with! Apparently, it’s used off label for eye disorders and they’re trying to get the word out. I struggle with dry eye syndrome and have never heard of this treatment.

(see the third blue box)
https://www.ldnscience.org/about-us/about-ldnscience

I’ve got my fingers crossed every day that this new treatment works for you Holland. With a big hope it helps us all.

stjohnh
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Re: Dipyridamole

Postby stjohnh » Wed Feb 14, 2018 1:59 am

Interesting eye applications, mostly for ophthalmic circulatory problems were discussing an article I just read about that.
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Wed Feb 14, 2018 2:06 am

Over the past couple of days I've tried to pay more attention to the exact timing and effects of taking the 75 mg tablet of dipyridamole. I seem to consistently get a 30 minute spell of sleepiness starting almost exactly 45 minutes after taking the tablet. Starting approximately 75 minutes after taking the tablet I notice a distinct increase in urge to move symptoms, I'm in the process of trying to figure out how long that effect lasts. Seems perhaps to last half an hour to an hour. I had initially thought that some of these effects were do to an interaction between the dipyridamole and some of the other medications I've been taking, however it seems that at least for me the dipyridamole itself has these effects. Superficially it would seem like as the adenosine levels increase as the dipyridamole is absorbed, that I develop a sleepy spell. Perhaps the dipyridamole level increases to the point of causing sleepiness then as the concentration continues to increase it causes worsening urge to move symptoms, then as the concentration in my blood drops the urge to move spell passes.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Sun Feb 18, 2018 8:02 am

I havne't thought carefully but - could it be that the sleepiness induced by the dipyridamole triggers the urge to move? When we're alert, the urge might be there in the background even though it doesn't really bother us, but if we relax (lie down, take a sleeping pill, whatever), it flares up.

This would mean that dipyridamole delivers its effects in succession, not all at once - first it makes you sleepy, then later it takes care of the movement urge.
Beth - Wishing you all restful sleep tonight
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

stjohnh
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Re: Dipyridamole

Postby stjohnh » Sun Feb 18, 2018 6:56 pm

badnights wrote:I havne't thought carefully but - could it be that the sleepiness induced by the dipyridamole triggers the urge to move? When we're alert, the urge might be there in the background even though it doesn't really bother us, but if we relax (lie down, take a sleeping pill, whatever), it flares up.

This would mean that dipyridamole delivers its effects in succession, not all at once - first it makes you sleepy, then later it takes care of the movement urge.


I was thinking that the different symptoms were related to the rapid increase in adenosine concentration that I imagine occurs when a person takes a dose of Dipyridamole. I was thinking that sleepiness is primarily an effect of adenosine on the glutamatergic system and the urge to move is primarily a dopaminergic system effect.

Since it's very unlikely that my dopaminergic receptors or my glutamatergic receptors are normal, it seems somewhat reasonable for me to believe that different concentrations dipyridamole cause varying levels of adenosine at different times, and the interplay between all of this for me compared to a normal person is not the same.
Blessings,
Holland

legsbestill
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Re: Dipyridamole

Postby legsbestill » Sun Feb 18, 2018 7:50 pm

I have been busy at work and not been online much in the last few weeks. Consequently, am only now seeing this thread. It is very exciting, notwithstanding the not insubstantial insomnia issues. Well done, Holland, for taking the plunge and posting about it so fully.

I had been wondering about trying Dipyridamole myself. I mentioned the study to my GP on my most recent visit a few weeks ago and he became very excited (although not to the point of actually reading the study). He is a big fan of Dipyridamole and pressed a prescription on me suggesting it would be worth a try. I got the prescription made up and actually forgot about the Dipyridamole.

My current regime is not dissimilar to yours, Holland, although no mirapex. I am taking 200mg of pregabalin and two doses of about 3 to 4 mg of kratom (each) per night - sometimes three doses. This is largely covering my symptoms and enabling a total of about 7 hours sleep per night -
broken up as the kratom wears off and I need an additional dose. I am pretty sure that the pregabalin is also having a beneficial effect as I suffered considerable alerting problems when I was on kratom alone. I also feel that the pregabalin keeps the kratom experience on a more even keel - there is a slight sense of chaos when I am on kratom alone. I also take cannabis intermittently to improve my sleep which it does reasonably effectively. 7 hours sleep is obviously fantastic and beyond what I thought I might ever achieve a year ago or so but I am having difficulty functioning effectively during the day and given the option will spend all day just watching TV or even lying in bed listening to an audiobook and dozing. This is very unlike me - I am typically quite driven and more than averagely energetic. Moreover, I do not have the option of lying in bed or watching TV as am back in the workplace and in a demanding and unforgiving environment where my relatively advanced years are enough of a drawback without wandering around in very much vacant and not at all pensive mood. The idea of achieving something more 'normal' such as Holland describes is beyond exciting.

So, I got out my Dipyridamole tablets and unfortunately they are 200mg which judging by your experience, Holland, would be too strong to start with. They are labelled 'modified release' which I presume means that I shouldn't cut them up. I think I will go back to my GP and ask for a lower dose prescription so that I can titrate up. In the meantime maybe I will start to reduce the pregabalin. I would be happy to reduce that drug anyway as have never really liked it. I have some mirapexin .088mg tablets so could, if my experience were similar to Hollands, add one - or even half of one into the mix.

I will post again if I can get organised to get the lower dose Dipyridamole.


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