Personal Sleep PR

[WideBody]

This is the first time I have passed 8 hours of sleep in the almost 8 years of keeping track. I usually score 80 or 81. 89 is an all time record for me.

So what happened. First off, I could feel my RLS earlier in the evening. Little things were beginning to trigger my RLS, nothing strong but definitely hitting the buttons. About 6pm I was thinking, this is going to be a Dipyridamole night. I forgot about taking it, but around 8:30 I remembered, I just didn't want to chance it. I took 225mg of Dipyridamole. I haven't had any in about 3 weeks.

I was ornery and skipped my tea, taurine and glycine routine.

I went to bed, I did the usual stretches and kicks but feel asleep rather quickly. When I woke up, I felt like I had become one with the bed. It was amazing.

I could show you my months of 3 hour nights that started this whole thing.

There is hope.

BTW, got my blood work, my Ferritin is 74, TSP is 41%

[SueJohnson]

That's great ! So pleased for you. What do you think did it? The dipyridamole or not taking the tea which can make RLS worse for some?

[WideBody in reply to SueJohnson]

Thanks Sue, Now that you mention it. I am not sure. I know I was over tired which is why the little things were starting to bother me. I don't plan to take dipyridamole tonight. I do plan to go back to my normal routine. I do plan to focus on isolating my iron at night. 74 ferritin is low for me.

[Ramuu in reply to SueJohnson]

DIPYRIDAMOLE IS EFFECTIVE IN MANAGING RLS AND PML D THAN GABA OR PREGABALIN AND ALSO SAFER ?? HOW MUC H TO START WITH ?? AND HOW TO GO ABOUT ??

[WideBody in reply to Ramuu]

Long term iron deficiency creates a deficit of adenosine in the brain. Dipyridamole is an ent1/ent2 blocker that increases intercellular adenosine.

Google “adenosine hypothesis for RLS” and “Dipyridamole RLS double blind study” 225mg is an effective dose for me.

youtu.be/XuIRPVNxHMU?si=Nv_...(Not working as expected?)

[Ramuu in reply to WideBody]

THAK YOU VERY MUCH,, IT IS TOO MUCH OF TECHNICAL STUF F. PLEASE TELL ME , WHETHER IT IS MORE EFFECTIVE AND IS IT SAFER THAN GABA AND PREGABILIN ??

[SueJohnson in reply to Ramuu]

In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Ramuu in reply to SueJohnson]

THANK YOU VERY MUCH, BUT READING THESE LENGTHY AND DETAILED REPORTS, I DON'T HAVE THE PATIENCE DUE TO MY EXTREME CONDITIONS. PLEASE ADVISE ME WHETHER , THEY ARE EFFECTIVE AND SAFE COMPARED TO GABA AND PREGABALIN ??

[WideBody in reply to Ramuu]

I have taken all the drugs including gabapentin and pregabalin for years. It took about 3 months to come off Pregabalin. I started reducing Pregabalin the day after I started Dipyridamole.

Dipyridamole has less side effects for me.

To be clear Dipyridamole may help you if your RLS is/was caused by an iron insufficiency.

Have you done a morning fasted full iron panel? That is the first step. What was your ferritin and transferrin saturation percentage? Those are two really important numbers you should know.

[Ramuu in reply to WideBody]

THANK YOU VERY MUCH FOR YOUR REPLY. MY IRON PANEL REPORT SUGGESTS , I HV NO DEFFICINECY : MY IRON: 98 , NORMAL RANGE :70-180 TIBC ; 274 NRANGE: 261-462, S ATUARTION; 35.77 % N RANEG; 14-50

[SueJohnson in reply to Ramuu]

It is safe and has helped some people on this forum and another one I was on. It doesn't help everyone and may have side effects you can't live with. The one most likely is headaches but they may or may not go away after awhile.

[Ramuu in reply to SueJohnson]

THANK YOU VERY MUCH.. ONLY THING IS I HAVE TO EXPERIMENT !!

[WideBody in reply to Ramuu]

Your iron is definitely in the normal range. I assume this was done in the morning and fasted. Also that you were taking no supplements prior to the test.

Given that, I doubt Dipyridamole will help. My understanding is Dyipyridamole mechanism of action is to increase intercellular adenosine. The deficit in adenosine is caused by a deficiency in Brain Iron.

So with out low iron, I don't think Dipyridamole will help.

[Ramuu in reply to WideBody]

THANK YOU VERY MUCH FOR YOUR REPLY. ALL CARE WAS TAKEN BEFORE IRON PANEL TESTS WERE DONE

[Ramuu in reply to SueJohnson]

I HAVE BEEN ADVISED BY NEUROLOGIST, THAT MY CONIDITION IS PARKINSON'S PLUS, HENCE , I AM SUFFERING FROM UNCONTROLLABLE DRUG RESISTANT HIGH INTENSITY TREMOR . HE SUGGESTED ME TO UNDER GO FOCUSED ULTRASOUD / MR I GUIDED ULTRSOUND. BUT IT IS VERY EXPENSIVE, PLEASE ADVISE ME . MRgFUS -LIVE CASE DEMONSTRATION and CME ;youtube.com/watch?v=o9V2s_z...(Not working as expected?)

[SueJohnson in reply to Ramuu]

You would be best to post this on the Cure Parkinson's forum. To find it click on My Hub at top and then click on find your communities and then on Find a Community.

[Ramuu in reply to SueJohnson]

I WOULD LIKE TO KNOW WHETHER MY CONDITION IS TREMOR-DOMINANT P.D . OR I HAVE HIGH-INTENSITY RLS; HOW TO DIFFERENTIATE BETWEEN RLS AND TREMOR .THIS DOUBT I AM GETTING, THIS BECAUSE,I HAVE BEEN ABLE TO STOP THE RLS EFFECTIVELY, WHICH I CAN OBSERVE THIS ACTION IN THE NIGHT. I ABSOLUTELY STOP THE RLS OF MY BOTH LEGS, HANDS , FINGERS, MOUTH CHATTERING.

[SueJohnson in reply to Ramuu]

You may have both. If your legs or arms are better when you move them, then you do have RLS. The tremor is likely from Parkinson's.

[Ramuu in reply to SueJohnson]

Thank yo u very much for y our re ply . You are right I may have both,

[Jumpey]

Long may it continue!

[Munroist]

Excellent news. I hope you really felt the benefit. On the rare occasions, I sleep well, I feel like a different person, motivated and with a functioning imagination.

I was looking at your sleep stats, do you know what the “normal” values are for someone who sleeps well. There’s a reasonable chunk of REM in there but deep looks a little light at 55 minutes. I also note that you were awake for an hour. I recently started writing down the times I got up and went back to bed at night and was surprised to find it most nights I spent at least 90 minutes fully awake and frequently got to 2 hours. Given I go to bed just before midnight and try to get up at 8 it was clear I was trying to manage on six hours off less than optimal sleep, sometimes in chunks no longer than 30 or 40 minutes so I’ve started going to bed earlier.

[Hidden]

That's fantastic. How has your sleep been not taking the dipyridamole over three weeks?I have just introduced a very small dose of clonidine before bedtime and in combination with 300mg pregabalin, I seem to be having deeper sleep. I have always found I get better sleep taking something in combination with pregabalin.

[Merny5]

excellent! I hope this continues for you