Dipyridamole

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legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Wed Feb 28, 2018 11:53 pm

Tonight I am taking 100 mg at 8.30pm and a further 75mg at about 11.30. This is my highest dose yet. I got a headache the last two days which I am pretty sure was caused by the dipyridamole. The headache resolved itself today so I think I am becoming accustomed to the drug. I found it interesting that I did not get a headache until I was up to 150mg. I am not sure the lower dose made much of an impact on me and I am hoping that as I increase the dose, the impact on my RLS will improve also. Tomorrow I am going to try to take both the doses earlier as I am finding I get complete coverage for my RLS symptoms from about 3.00 am and I wonder if it is not until then that the dipyridamole has really taken full effect in my system.

I am taking 150mg of pregabalin at about 9.30pm. Last night I only took 1tsp of kratom. Each night I am awake with RLS from about 1am til about 3 or 4. It is definitely the RLS that is waking me up though - not insomnia and consequently I am not minded to add in mirapex at this stage (as I understand it, the mirapex helped with Holland's profound insomnia experience). The RLS is relatively mild (I think milder than it would be without dipyridamole, bearing in mind the reduced doses of kratom and pregabalin). Last night I did yoga at 1 which helped with symptoms but did not overcome them completely. I played computer chess at about 3 and after one game my symptoms completely resolved and I fell asleep and slept soundly until 10.00 am. Our country is in lock-down because of snow (we are not used to that here) so schools, courts and universities were all closed and I didn't have to go to work.

Like Holland, I notice that I feel more myself during the day and definitely less 'dopey' notwithstanding the disturbance in the early hours.

I am apprehensive about expressing positives at this early stage but I am definitely pleased with how things are going so far. I have reduced my kratom dose substantially and I am planning to reduce my pregabalin tomorrow to 125mg.

stjohnh
Posts: 560
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Thu Mar 01, 2018 3:04 am

Legs, The abstract of the clinical trial paper is out. The mean dose used was 281 mg.
Blessings,
Holland

Rustsmith
Moderator
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Location: Pueblo, Colorado

Re: Dipyridamole

Postby Rustsmith » Thu Mar 01, 2018 3:30 am

Holland, as you pointed out earlier, the trial subject were all treatment naive and were we can be fairly certain that they were not taking anything else in the way of RLS treatments. So, their mean dose of 281 might be consistent with the lower doses that they two of you are taking if you factor in the effects of your pramipexole and kratom and leg's Lyrica and kratom.

Of course, it will be even better once we can see the full paper.

As for me, I see my RLS specialist in about seven weeks. It will be interesting to see if she will let me try it. Also, I was looking into the other ENT1/ENT agonist meds this afternoon and was surprised to see Gleevec on the list. That is a med that my wife was looking into several years ago as a treatment for her MS. I don't remember exactly why she dropped it from consideration simply because there were so many new MS meds that came out around that time, one of which proved to have lethal side effects (not the Gleevec).
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.

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Thu Mar 01, 2018 11:24 am

Had a very bad night last night with symptoms kicking in at 1.00am and not resolving (in spite of all my usual non-drug interventions eg stretches, distraction etc) til about 6am. I only took half a teaspoon of Kratom all night and wonder if the worsened symptoms are partly due to Kratom withdrawal? There was some presentation in my torso which would be consistent with this. I think I will try and stay off Kratom for four or five days and see do the symptoms improve thereafter. I also plan to increase dipyridamole further in a day or two to 200mg.

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Sat Mar 03, 2018 11:37 am

I have had severe and unending symptoms all night the last wo nights. I think (hope) these are caused/contributed to by kratom withdrawal as have taken none since Wednesday. The only thing I can say for sure about my dipyridamole experiment is that at a dose of 175mg it does not cover the symptoms I am currently experiencing.

I will persist for another week or two. I am going to increase the dose tonight and my Kratom withdrawal should settle down in the next day or two when the dipyridamole can truly show it’s worth (or lack thereof).

I am continuing to take 125mg pregabalin as I don’t want to absorb any additional withdrawal symptoms for now.

stjohnh
Posts: 560
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Sat Mar 03, 2018 3:45 pm

Legs, are you still splitting the dipyridamole dose, half at 8:30 and half at 11:30? What time do your symptoms usually start before you started on the dipyridamole experiment? What time did your symptoms start last night?
Blessings,
Holland

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Sun Mar 04, 2018 12:11 am

Yes have been splitting dose as you set out. Tonight is different - I am taking 200mg for the first time and I have 200mg tablets so am not able to split that one. Took the whole tablet at 8.30. They are slow release so am interested to see how things go with them.

Pre-dipyridamole, my symptoms would usually start around 12.30/1.00am. It’s been pretty much the same with dipyridamole.

It’s funny but even with the awful nights I’ve been having I feel more energized during the day. I’m not sure I could go back onto the combination of drugs I was on. I might try coping with the legs and a low dose of pregabalin for a while even if dipyridamole doesn’t work.

I am hoping symptoms will settle down soon. Typically I have not found withdrawals from Kratom to last more than 4 days. It is three days since my last dose of Kratom and that was really small.

I am very alert tonight. Hope it’s not the insomnia Holland experienced. Maybe the increased dose or slow release is causing it. I went to bed early hoping to get some sleep after the bad nights but have been awake for the last 4 hours and now don’t even feel sleepy. I think it’s the first night I have felt like this. If this level of alerting becomes a feature I might try adding in a tiny dose of mirapexin as it was so effective for Holland. I will give it two or three nights first.

stjohnh
Posts: 560
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Sun Mar 04, 2018 2:33 am

legsbestill wrote:
It’s funny but even with the awful nights I’ve been having I feel more energized during the day. I’m not sure I could go back onto the combination of drugs I was on.


That's pretty much the conclusion that I came to: that the dipyridamole seems to help in some ways for controlling the restless legs but even more important to me is that improved feeling of well-being during the daytime. Still not normal, but distinctly better than when I was on the prior combination of medicines.
Blessings,
Holland

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Mon Mar 05, 2018 12:15 am

Another atrocious night last night and low grade symptoms through the day in legs and torso. I am taking 225mg dipyridamole tonight as well as 125mg pregabalin.
I will continue to titrate up over the next week or two ‘til I reach 400mg or achieve some degree of relief. I will maintain the dose of 125mg pregabalin. Am not hugely optimistic but, as they say, I’ve started so I’ll finish. I wish I knew how quickly to titrate up. Until now I’ve been maintaining a dose for 3 days before increasing but am so fed up with no sleep that I am jumping 25mg in one day today.

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Thu Mar 08, 2018 11:36 pm

I am now two weeks into my dipyridamole experiment. My symptoms settled down somewhat last night, at long last. I am pretty sure the worsened symptoms were caused either by Kratom withdrawal or a too rapid reduction in my pregabalin dose.

I have now been off Kratom for a week and have maintained the same dose of pregabalin for nearly as long. I also took a very low dose of naltrexone for the last two nights (0.2mg). I’m not sure if this has contributed to the improved symptoms.

It has been difficult to tell the withdrawal symptoms from my usual Rls. They are not identical being more in the nature of a whole body restlessness and agitation but they have a very similar impact on sleep and do induce a similar though not as overwhelming urge to move. Accordingly the last two weeks have been a bit of a washout in terms of assessing the impact of dipyridamole as everything has been masked by the trauma of the withdrawals.

I think what I had last night was more like my core RLS symptoms. So the question is were they controlled at all by dipyridamole? I think they were less severe than they would have been if they were wholly unmedicated. I am still taking 125mg pregabalin so that may have had some impact. Typically, however, I have not found pregabalin particularly helpful at that dose. Therefore, I think that dipyridamole is helping somewhat. I am taking some cannabis tonight and increasing my dose of dipyridamole from 250 to 275mg in the hope of additional relief as am pretty fed up with lack of sleep (up til last night I had not got any sleep before 5.00 am for days). I am planning to go up to 300mg tomorrow and maintain that dose for a few days.

I will post again if there is anything useful to report.

stjohnh
Posts: 560
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Thu Mar 08, 2018 11:51 pm

Legs, I found that the dipyridamole helped only the urge to move symptoms, not the sleeplessness problems. I have had to continue my cannabis as THC 15 mg at 7:30 p.m. and then another 5 mg at midnight. Also I take gabapentin at 100mg at 7:30 and another 50 mg at midnight, this is the same dose I took before I started the dipyridamole.
Blessings,
Holland

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Fri Mar 09, 2018 3:18 pm

Hi Holland, I think that my only problem with sleeplessness is caused by the urge to move. In the past, I have suffered from significant opioid induced alertness - it was the main reason I reintroduced lyrica - but as I have eliminated kratom I do not think that is a problem for me now. On the only night I had reduced restlessness problems I had no difficulty sleeping. I took cannabis last night in the hope that it would help me sleep through more minor restlessness if it struck (which it did and the cannabis did not help).
I am not sure where to go from here. I would very much like to see this process through but not sure I can cope with the lack of sleep while I wait for the withdrawal symptoms to subside so that I can assess how well the dipyridamole impacts on my 'core' rls symptoms. I have no idea how I will manage when I have to return to work next week. I could possibly introduce a very small dose of pramipexole but am reluctant to resort to a dopamine agonist. Unlike you, I was not taking one when I started dipyridamole and it wasn't really what I wanted when I embarked on this experiment.
All the problems notwithstanding, I am still enjoying the greater sense of normality and the reduction in drug-induced brainfog and dopiness during the day. If only I wasn't so exhausted all the time ...
Thank you very much for your input. It is encouraging to have your responses and observations. Any additional suggestions most gratefully received.

stjohnh
Posts: 560
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Fri Mar 09, 2018 4:17 pm

Legs, the addition of a tiny dose of pramipexole at 0.0625 MG (one half of the smallest size tablet available in USA) seems to make control of urge to move symptoms much better with dipyridamole. I take it one hour before my first dose of dipyridamole.
My sense of well-being has continued and actually seems to be improving over the last couple of weeks. Measuring my deep sleep time also seems to be improving.

I too was hoping to avoid dopamine agonists, also hoping to get off the gabapentin, kratom, and cannabis. It hasn't happened, although I am off the kratom and my dopamine agonist dose is miniscule.
Blessings,
Holland

stjohnh
Posts: 560
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Fri Mar 09, 2018 4:32 pm

Here is a link to my deep sleep graph for 2/15-today. Red lines are "normal" (about 90min per night). Horizontal axis is date and vertical axis is minutes of deep sleep. Deep sleep is what you need to feel refreshed.

https://www.dropbox.com/s/79mk5wwgzya38 ... 6.jpg?dl=0
Blessings,
Holland

legsbestill
Posts: 473
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Sat Mar 10, 2018 12:16 am

Thanks for that, Holland. It is interesting and encouraging to see how you are getting on.

In desperation I have taken a half of a .088 mirapexin tonight. At the moment have no symptoms and expect to fall asleep soon (unless symptoms develop). I have also taken 300mg dipyridamole.

I would be happy if I could get away with .044 of mirapexin and some dipyridamole even if I have to continue with 125mg pregabalin (though would love to discontinue pregabalin).

The trouble is I was severely augmented on pramipexole when I discontinued it in 2016 (after 15 years taking it in ever increasing quantities). I have tried neupro a few times since and find I start to augment on neupro after about 8 weeks so I expect I won’t be able to take mirapexin for long before augmenting. Unless the fact that it’s a very low dose would cause augmentation to be deferred ... I suppose I could try taking it intermittently rather than every day which might give me longer. I imagine that at such a low dose it would be feasible to stop and start it every so often.

I spoke to my GP today about getting an iv iron infusion. Dr. Buchfuhrer has very kindly sent me the formulation and protocol he uses. It might help with keeping the meds to a minimum.


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