Dipyridamole

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stjohnh
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Re: Dipyridamole

Postby stjohnh » Tue Jan 30, 2018 3:32 pm

I could use some ideas on where to go from here.

I have now finished three nights of dipyridamole at 225 mg at 7:30 p.m. At the same time I have been taking 0.0625 mg pramipexole, 15 mg THC, 720 mg kratom, and 100 mg gabapentin.

The problem is that starting approximately 45 minutes after taking these medicines I develop abrupt and moderately severe symptoms that are very reminiscent of dopamine agonist withdrawal. This lasts approximately 30 - 45 minutes, then abruptly resolves.

While an initial impression of dopamine agonist withdrawal symptoms seems reasonable (since I had cut my usual dosage of pramipexole from 0.125 mg in the evening to 0.0625 mg), the fact that these symptoms resolved quickly after only 30 - 45 minutes seems incompatible with dopamine agonist withdrawal as the only explanation for those symptoms. I had been thinking that this may be a drug drug interaction, however the multiple medications I take, all of which affect RLS symptoms in some way, make figuring this out much more complex.

The most straightforward option would seem to be just stop the pramipexole completely and continue the other medications as I have, anticipating I would have another couple of crummy nights and then get a better idea of how the remaining medications are working.

Another option that I am considering is taking the dipyridamole at 6:30 p.m. rather than 7:30 p.m. and take the other medications at 7:30 p.m., including the 0.0625 mg pramipexole. This has the advantage that if there is a significant change from the pattern of the past few nights that the problem is some type of drug drug interaction rather than simple withdrawal from dopamine agonist. I'm basing this on the idea that most of the medicines have a onset of action approximately 30-90 minutes after ingestion.

Another possible option that I considering is continuing the same medications that I have been for the next few nights. If I do that and symptoms continue, that argues against dopamine agonist withdrawal.

Anyway, all thoughts on how I should proceed I would be appreciated.
Blessings,
Holland

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Tue Jan 30, 2018 4:50 pm

Holland, I like the idea of moving up the schedule on the dipyridamole to see if that helps. Since dipyridamole is supposed to help to improve natural dopamine receptor levels, that would seem to me to point away from dopamine withdrawal. That and the fact that the symptoms stop at about the time that the dipyridamole should be kicking in seems to be an important clue.

My second choice would be stopping the pramipexole. If you did that and your RLS really went crazy, then you could always take the pramipexole late. The benefit of this approach would be that it would point rather strongly at dopamine withdrawal.

And thanks for doing this for us. Did Sergi ask to hear about your experiences?
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.

badnights
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Re: Dipyridamole

Postby badnights » Wed Jan 31, 2018 5:24 am

I'm not sure if you can be certain that the effects of DA withdrawal will have dissipated in a week. Doesn't it vary by person and sometimes take longer? If so, just carrying on and observing that symptoms continue would be inconclusive.

Same for quitting pramipexole completely; you would have to wait long enough to be certain the withdrawal was over, to avoid confounding things.

The simplest thing, to me, seems to be moving the doses apart. Is an hour enough?

I should read that paper.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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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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Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Wed Jan 31, 2018 1:28 pm

Yay!!! I took Steve's suggestion (and later supported by Beth). Last night I took the dipyridamole at 6:30 p.m. and the rest of my medications at 7:30 p.m., including the half dose of pramipexole. Amazingly I had none of the urge to move symptoms that were quite severe and short-lived as I had on the prior 3 days. Also I had no urge to move symptoms after I went to bed about 9:15. Thank you Steve and Beth.

The secondary problem I need to deal with fairly soon is that for the past four nights I have awakened about 4 a.m. and have not been able to go back to sleep. No urge to move. No thoughts of the day rushing through my head. Just can't go back to sleep.

My plan for tonight is to repeat exactly what I did last night, to be sure it wasn't some outlier in terms of how the medications work. I'm thinking that tomorrow night, assuming I have a stable response to what I had been taking, is to stop the pramipexole altogether. I have only been taking 0.0625 milligrams of pramipexole (a very small dose) for the past 4 nights anyway.

Beth, yes please read the article. The more brains that are looking at this situation, the better. My situation is immensely more complicated than the trial of untreated RLS patients mentioned in the article. Anybody that has some chance of understanding some of the discussion in the article is likely to be able to contribute to my attempts to use the dipyridamole to help my RLS.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Wed Jan 31, 2018 7:35 pm

I'm struggling my way through it. It's not badly written, thankfully.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Wed Jan 31, 2018 11:06 pm

Beth, as I was reading it the first time I had to keep reminding myself that I often have to read papers in my own field several times to really understand the points that the author is trying to make. The fact that this one was written just beyond my level of understanding was useful since it helped me understand a little bit more about receptors than I knew before.
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
Posts: 546
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Fri Feb 02, 2018 4:35 pm

I have now finished four days at 225 mg dipyridamole at 6:30 p.m. and my other medications at 7:30 p.m. The initial anticipated side effects of dipyridamole (headaches, lightheadedness, flushing) have all, as anticipated, resolved. I have continued the 1/2 of my usual dose of pramipexole, at 0.0625 mg at 7:30 p.m.

My duration of sleep is about the same as before starting this experiment. Urge to move has not been a problem. Subjectively I feel distinctly better in the morning, and toward the evening I seem to have less trouble with impulse control problems (more apt to actually do something productive rather than play Solitaire or watch TV). This is of course highly subjective and could be placebo effect.

Even though this is quite early in this experiment I feel that I have made a significant advance in my treatment, even if I don't make any other changes. I am now at 1/2 the prior dose of pramipexole which I consider a benefit.

I think tonight I will stop the pramipexole and increase the dipyridamole to 300 mg at 6:30 pm.
Blessings,
Holland

Polar Bear
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Re: Dipyridamole

Postby Polar Bear » Fri Feb 02, 2018 4:55 pm

Watchng this and cheering you on. I hope all goes well tonight when you cease the pramipexole.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Fri Feb 02, 2018 8:34 pm

That all sounds like a dream come true. I hope that it continues.
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
Posts: 546
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Sat Feb 03, 2018 8:07 pm

Well, I have mostly good news. Last night I took 300 mg of dipyridamole at 6:30 p.m. and my other medications at 7:30 p.m., completely eliminating the pramipexole. Remarkable, at least to me, is I had no urge to move from about 7 p.m. until midnight. At midnight I noticed a very slight urge to move sensation, certainly not enough to keep me awake and not enough to make me get out of bed. It lasted maybe an hour or so and then resolved. So clearly the dipyridamole is doing a good job at controlling urge to move symptoms. I am so happy to have stopped the pramipexole.

It's not all good news, however. I only got a couple of hours sleep last night, I just couldn't go to sleep until 2 or 3 in the morning. No significant urge to move symptoms, just couldn't go to sleep. This has happened in the past occasionally with my other medications. Also I am probably still mildly withdrawing from the pramipexole.

My plan for now is to continue the same medication regimen that I took last night for at least a few days, maybe a week or so and see how stable my symptoms are and to what extent my sleep improves without any other changes.

At a minimum I can say that dipyridamole helps to control urge to move symptoms, even in someone like me with moderate to severe RLS who is taking other RLS medications.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Sat Feb 03, 2018 8:16 pm

Beth, as I was reading it the first time I had to keep reminding myself that I often have to read papers in my own field several times to really understand the points that the author is trying to make. The fact that this one was written just beyond my level of understanding was useful since it helped me understand a little bit more about receptors than I knew before.

Ya, I keep having to stop and look things up. The brain architecture is still pretty much foreign territory to me. I'm struggling now through the fascinating part on linked receptors (heterotetramers) which seem such an elegant way of regulating things. Wow. I'm reminded of why physiology fascinated me when I was an undergrad.

But I work all day and I can't read well in the evenings because my symptoms have become worse again and I don't understand a thing. I can't even read a novel sometimes. It was soooo nice to be getting better :( I have to figure this out, maybe stop coffee again or maybe it's all the stress of a dying dog, ex-husband and mother all at once...

Holland, how was your night? I'm excited for you.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

stjohnh
Posts: 546
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Sat Feb 03, 2018 9:17 pm

Hi Beth, sounds like you are having a tough time as well. I described last night in my post immediately above yours.

I am in the process of reading the article for the third time, it gets better each time and I learned a lot more. The article actually does have some discussion of caffeine and even though I haven't had what I thought was a noticeable problem with caffeine, I have decided to cut it out as well.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Sat Feb 03, 2018 10:03 pm

ya, that was my thinking as well when I read that part. It has to be having a negative effect. Sigh. So I didn't have any this morning.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Sat Feb 03, 2018 11:01 pm

One of the things about the article that makes me feel that this is a major step in RLS research is how they have tied so many different things together in their explanation, which makes it a elegant explanation to me. In addition to the obvious things, like the paired receptors, adenosine's impact on both dopamine and glutamate, an explanation of why we are sleepy but cannot fall asleep and the things like the caffeine effect, one of the details that jumped out at me was the comment about how the electrical stimulation of the BID mice had an effect at 100Hz but not at 60Hz and neither frequency had an effect on the control mice. This jumped out at me because after my research on deep brain stimulation for Parkinson's (and maybe as a treatment for RLS), the signal generator that is used can be adjusted for each individual, but they usually end up running it at 100Hz. That cannot be a coincidence.

So, not only does it tie together adenosine, dopamine and glutamate in a way that explains so much, it also addresses BID, opioids and other details that might seem disconnected (like caffeine and the electrical stimulation). To me, this would make it a major advance in RLS research even if it didn't open up a whole new avenue of treatment with ENT1 inhibitors like dipyridamole.

Also, the Foundation office mentioned that there will be an article about this work in the next issue (Winter) of Nightwalkers. Obviously it will not be anywhere near as detailed, but it should be interesting anyway.
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
Posts: 546
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Sun Feb 04, 2018 9:27 pm

Last night was another bad night for sleep. Dipyridamole did a good job controlling urge to move. Like the night before I had some urge to move symptoms around midnight, they were worse than the previous night and so I took an extra 75 mg of dipyridamole. Urge to move symptoms resolved in 30 - 60 minutes. I still couldn't sleep, indeed it was 5 a.m. before I could get to sleep. This was later than the night before and I am wondering if the extra dose of dipyridamole somehow made my sleeping worse. Last night I took my usual supplemental medications, that is 720 mg of Kratom, 100 mg gabapentin, and 15 mg THC.

I don't understand well enough the various types of receptor interactions to be able to figure if it could have been predicted that I would have some problems sleeping. I am thinking that either the dipyridamole is interacting with the gabapentin or the kratom, causing worsening sleep. The adenosine article doesn't discuss opioids or THC, the mechanism of their effect on RLS I think is pretty much unknown.

Tonight I plan on taking only the dipyridamole. No pramipexole, no Kratom, no THC, no Gabapentin. We will see what happens.

If any of you have a better idea be sure and let me know. After two nights in a row of only 2 hours sleep each night, I am even more seriously cognitively impaired than usual.
Blessings,
Holland


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