Dipyridamole

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
legsbestill
Posts: 463
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Fri May 04, 2018 7:31 am

Hi Yawny,

It would be great to welcome another member to the dipyridamole club - especially one so erudite as yourself.

I don't believe I had side effects from dipyridamole other than a headache (a tolerable one - not a migraine) which lasted maybe one or two days every time I increased the dose until I got to 350mg. I started getting the headache once I hit the 150mg mark. I haven't paid much attention to the when-to-take directions and I don't think the report of the study gave much direction about when the participants took their dose. Neither does it indicate what their starting dose was or by how much they increased each time they titrated up. I take my dose in the evening usually between 7.30 and 9.00pm.

Like Holland, I continue to feel more 'normal' than at any stage since I started my post-augmentation journey about two years ago. Also like Holland, I am using other drugs to manage my rls symptoms in addition to dipyridamole (see below). I am a restless experimenter so am always messing around with my system in an attempt to attain the optimal system with the minimum side effects. I have a slight anxiety about the tiny risk of the anti-coagulant properties of dipyridamole causing internal bleeding (my mother suffers from an auto-immune condition, the name of which escapes me, which causes her body to attack her own white blood cells so the risk of bleeding has been a live one in our family for many years). In consequence I have reduced my dose pf dipyridamole quite a lot.

My latest experiment is with ldn which I know doesn't work for everyone but I want to eliminate it from my enquiries. I am titrating up to 2.5/3.0mg daily (should be there by mid-May) and give that 3 months or so to see whether it has anything to offer me.

For now I am taking:
dipyridamole 100/125mg daily;
pramipexole (mirapexin) 0.044mg (the heady days when I was able to use a quarter tablet turned out to be attributable to a virus I was brewing - my rls is often less significant when I have a virus - I am determined not to increase my dose above half of a 0.088 tablet however);
pregabalin (lyrica) 75/85mg daily (I hate this drug and would love to eliminate it but I find that when I go below 75mg the legs start to act up so am sticking to this dose for now while I follow up other avenues);
ldn (currently 1.5mg daily).

In the last few days the legs have acted up at night. If that continues I may try increasing dipyridamole back to 150mg. While I am increasing ldn I am reluctant to take kratom so I am not taking breaks from pramipexole as previously because on the non-pramipexole days I was using kratom to cope with the symptoms.

I believe that the dipyridamole is contributing to my regime - as I say I feel better than I have ever done. I am convinced that dipyridamole completely eliminates the creepy crawley feeling although not so much the urge-to-move. However I do wonder if the bulk of my good coverage at present is attributable to the pramipexole and that those good days will come to an end as I become tolerant of that tiny dose - that may well already be happening. My plan is to struggle along until I have given the ldn a good chance (about end August) and then take a month or so off pramipexole using kratom in the hope that resets my receptors (unless ldn works).

I think you are right to start at about 50mg (I started at 100mg but am at the other end of the drug-sensitivity spectrum to you). I think I really started to feel the benefits at about 150mg and ultimately went as high (if memory serves) as 350mg. At that dose the headache did not go away so I started to reduce. I do think that it is still contributing even at the low dose I am currently on.

Good luck with this, Yawny. I hope it brings you great benefits. Apologies for the long rambling post.

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

Re: Dipyridamole

Postby stjohnh » Fri May 04, 2018 1:48 pm

Yawny, The published dipyridamole trial had the subjects taking the medicine at 8 p.m. I sometimes eat at that time and have noticed no difference in effectiveness if I take it on an empty stomach or full stomach. My bottles do not contain any information on timing of food.

I just reviewed my earlier posts in this fairly long thread. While after the initial phase I have had no noticeable side effects, I did have mild headache and dizziness for a few days when I first started the medicine.

What medicines are you currently taking? Based on the very limited experience of myself and legs, I'd suggest adding 50 mg of dipyridamole to your current medications, rather than trying to substitute dipyridamole for one of your other medicines.

I currently take a 75 milligram tablet of dipyridamole at 7:30 in the evening and then an additional half tablet approximately midnight.
Blessings,
Holland

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

Re: Dipyridamole

Postby stjohnh » Fri May 04, 2018 2:24 pm

legsbestill wrote:... I do wonder if the bulk of my good coverage at present is attributable to the pramipexole and that those good days will come to an end as I become tolerant of that tiny dose - that may well already be happening. ...


Legs, there are good theoretical reasons and a moderate amount of experience suggesting that people on very low dose dopamine agonists will not augment.
Blessings,
Holland

yawny
Posts: 230
Joined: Sun Nov 08, 2015 4:20 pm

Re: Dipyridamole

Postby yawny » Fri May 04, 2018 8:25 pm

Holland & Legsbestill,

Thanks for the great feedback...I’m ready to start the experiment tonight at 50mg. I will just add it to my current regimen. The only medications I take are for RLS/PLMs. I had a sleep study at the most reputable hospital in the area and they diagnosed me as having PLMD (I didn’t have RLS the night of the study). I have had symptoms of RLS but it’s changed over the last few years from moderate to mild to rare/nonexistent episodes. I believe supplemental iron and Low Dose Naltrexone (LDN) are specifically responsible for the changes in my RLS. However, the PLMs have been chronic and probably considered moderate in the range although there has been improvement here as well. I have movements throughout my body and am not sure what’s PLMD and what’s not. I’ve seen a wide range of doctors with different specialties and my non-PLMD movements have been called Benign Fasciculation Syndrome or non-epileptic seizures.

My neurologist is a bit outside the box and is treating me primarily for chronic anxiety. So no dopamine agonist, and I’ve never been on one consistently except for a two day trial where I gave up because I wanted to give medical marijuana another chance. My neurologist believes by treating my excessive anxiety that I’ll be less aware of the movements. And the past few years have been one experiment after another of trying to find the right balance and cocktail of medications. I had huge success with the muscle relaxant Tizanadine but had to stop for stomach problems. Really, all of the following is meant to calm me down so I can turn off the hypervigilance and sleep.

Starting at 8pm, I am currently taking:
Buspirone- 2.5mg
1st CBN marijuana muffin- 45mg (this is degraded THC)
Progesterone- compounded progesterone capsules & OTC Emerita Pro-gest cream
Gabapentin- 100mg

Then right at 9:30pm bedtime:
Low Dose Naltrexone- 3.5mg (on my way to 4.5mg)
Doxazosin- 1mg
Magnesium Glycinate- 200-400mg
2nd CBN marijuana muffin- 45mg (this is degraded THC)

P.S. Legsbestill (I so adore your “rambling,” never stop),
I’ve read that LDN’s benefits/effects are variable by dosage and timeline. Some people do really well at low doses while others at high doses. One MS patient of the LDN pioneer Dr Bihari was doing well but just a small dosage increase had her walking again. Timeline is the same thing. Some people respond immediately while for others it can take a year. The research I’ve done has convinced me that LDN is a lifelong medication, or supplement, even if you don’t see any obvious benefits because I’m convinced that our planet is so polluted that we all have, or will have, some level of autoimmune dysfunction, which LDN treats. Many of Dr Bihari’s family and medical colleagues report to take LDN preventively as it has such a broad benefit to the immune system.
Last edited by yawny on Fri May 04, 2018 8:45 pm, edited 2 times in total.

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

Re: Dipyridamole

Postby stjohnh » Fri May 04, 2018 8:41 pm

Yawny,
I'm a little bit confused. Do you have RLS and PLMS or just PLMS? What symptom do you hope to improve by taking the dipyridamole?

The trial patient study showed improvement in RLS urge to move symptoms, subjective sleep quality, and measured PLMS.
Last edited by stjohnh on Fri May 04, 2018 8:52 pm, edited 1 time in total.
Blessings,
Holland

yawny
Posts: 230
Joined: Sun Nov 08, 2015 4:20 pm

Re: Dipyridamole

Postby yawny » Fri May 04, 2018 8:49 pm

I have PLMS, and I also have RLS that’s mostly under control. I’m hoping Dipyridamole will improve my
PLMS. I’m very aware of my PLMS from the moment I start nodding off until morning. It’s constant and disrupts my sleep.
Last edited by yawny on Fri May 04, 2018 9:02 pm, edited 1 time in total.

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

Re: Dipyridamole

Postby stjohnh » Fri May 04, 2018 8:54 pm

How will you tell if the PLMS is improving? By definition PLMS occurs while you are asleep.
Blessings,
Holland

yawny
Posts: 230
Joined: Sun Nov 08, 2015 4:20 pm

Re: Dipyridamole

Postby yawny » Fri May 04, 2018 9:09 pm

My understanding is that most people are unaware of PLMS. But I semi wake up from many of my involuntary movements, attempt to go back to sleep and just as I cross over to sleep there’s another involuntary movement and I’m awake again although it’s not a full awakeness. This repeats for some time and eventually I have a chunk of sleep. My sleep study recorded many more awakenings than I was aware of. I’ve never been one that needs to get up and walk. Instead I toss and turn and fall back asleep to this pattern, or eventually become fully awake and there are no symptoms in my awake state.
Last edited by yawny on Fri May 04, 2018 9:17 pm, edited 1 time in total.

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

Re: Dipyridamole

Postby stjohnh » Fri May 04, 2018 9:16 pm

Well, it will be very interesting to see how you respond to the dipyridamole.
Blessings,
Holland

legsbestill
Posts: 463
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Fri May 04, 2018 9:27 pm

legsbestill wrote:
... I do wonder if the bulk of my good coverage at present is attributable to the pramipexole and that those good days will come to an end as I become tolerant of that tiny dose - that may well already be happening. ...


Legs, there are good theoretical reasons and a moderate amount of experience suggesting that people on very low dose dopamine agonists will not augment.

Thanks for that, Holland. It would be marvelous if my very small dose continued to be effective for me.

yawny
Posts: 230
Joined: Sun Nov 08, 2015 4:20 pm

Re: Dipyridamole

Postby yawny » Fri May 11, 2018 6:37 pm

Well, I tried Dipyridamole. Not only did it not improve my symptoms but it increased my hyperawareness which made it even harder to sleep through my PLMS. That’s the opposite of what the study suggested, but I’m always in that rare group that has idiosyncratic reactions — the same thing happened to me when I took Benadryl (awake for 3 days). So, after five sleepless nights and rummy days, I gave up the trial. I can’t rule out drug interactions with the possibility that my meds are competing for receptors. But I wouldn’t know how to do an experiment that tests this. If my medications change, then I’d consider trying Dipyridamole again.

Polar Bear
Moderator
Posts: 7162
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Dipyridamole

Postby Polar Bear » Fri May 11, 2018 7:16 pm

yawny - Benadryl is to be avoided at all costs, it's really bad for rls symptoms.
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

legsbestill
Posts: 463
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Thu May 24, 2018 12:53 pm

Well, I tried Dipyridamole. Not only did it not improve my symptoms but it increased my hyperawareness which made it even harder to sleep through my PLMS. That’s the opposite of what the study suggested, but I’m always in that rare group that has idiosyncratic reactions — the same thing happened to me when I took Benadryl (awake for 3 days). So, after five sleepless nights and rummy days, I gave up the trial. I can’t rule out drug interactions with the possibility that my meds are competing for receptors. But I wouldn’t know how to do an experiment that tests this. If my medications change, then I’d consider trying Dipyridamole again.



This alertness seems to correspond to Holland's early problems with dipyridamole. He managed it by adding in pramipexole at a low dose (0.0625mg). I didn't experience the hyper alertness at all. How perplexing this condition is.

I was reading through the thread to try to find a pattern as am currently experiencing an unpleasant and difficult to describe symptom day and night - not quite restless legs but a slightly restless feeling with a nebulous sort of ache in my arms and legs as though the blood has difficulty getting through to my hands and feet. At first I thought it must be due to reduction in pregabalin but have increased that back up to 100mg daily and no improvement. Then wondered if it was due to reducing dipyridamole to 125mg so titrated back up to 200mg with no improvement in the symptoms. Am pretty sure it is not pramipexole as symptoms are there on the days I take a break from pramipexole. It is the same whether I take kratom or take a break from it. The only remaining culprit is ldn ... not sure what to do about that as had hoped to continue taking it for some time.

On a more positive note, I continue to experience much better days - alert and normal with none of the brain-fog and fatigue of pre-dipyridamole days.

One final point for those interested in minute details: the 0.044mg dose of pramipexole I take 5 days out of every 7 is exactly the same as Holland's 0.0625mg. The apparent discrepancy is due to a difference in how the drug is measured here in Europe.

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

Re: Dipyridamole

Postby stjohnh » Thu May 24, 2018 3:50 pm

Rats, sorry the dipyridamole didn't work for you. I continue to have a very positive response.
Blessings,
Holland

legsbestill
Posts: 463
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Fri May 25, 2018 7:36 am

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.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest