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Re: What med cocktail works for you??

Posted: Mon Aug 13, 2018 1:55 pm
by stjohnh
6:30pm 0.0625 pramipexole
7:30pm 75mg dipyridamole, 720mg kratom, 100mg gabapentin, 15mg THC
11-12 75mg dipyridamole, 360mg kratom, 50mg gabapentin, 5mg THC

I go to bed at 9-9:30. Go to sleep in <15 min most nights. 1-2 times per week takes about an hour. Wake up several times to pee (I'm 70yo). Wake in morning at 6am. Sleep 7-8 hours.

I have mild urge to move symptoms from 5-7pm. Keeps me from lying down to read or sitting still during that time.

Been on this combo almost 1 year. Only change has been increasing the 11-12pm dose of dipyridamole from 37.5mg to 75 mg a few months ago. That got rid of the marked 2hr spell of tiredness/fatigue occurring almost daily in the early afternoon.

Re: What med cocktail works for you??

Posted: Mon Aug 13, 2018 2:47 pm
by mutsy67
legsbestill wrote:I continue to find it helpful to read of other peoples regimes and totally understand why you ask.


Thank you, I am finding it very helpful. We're all different and we all experience RLS differently, but there is still much we can glean from what others are doing. After all that's why we have this board - share and learn! I am wondering if you have an update on how the LDN is working for you? Will be starting it this month for autoimmune diseases and it would be so wonderful if it helped RLS too, esp since we lose opiods in order to take it!
Thanks, Shari

Re: What med cocktail works for you??

Posted: Mon Aug 13, 2018 3:18 pm
by mutsy67
debbluebird wrote:I have tried about 20 meds.


Every time I have a medical person look at my med list and comment on how many meds I take, I know they know nothing about RLS. Its so difficult to manage and you have to constantly change the cocktail to have a few weeks/months peace. Your regime is particularly interesting with skipping days on some items...that's a new something to research! Thanks for your input, very helpful!

Re: What med cocktail works for you??

Posted: Mon Aug 13, 2018 3:34 pm
by mutsy67
stjohnh wrote:11-12 75mg dipyridamole, 360mg kratom, 50mg gabapentin, 5mg THC
...
I go to bed at 9-9:30. Go to sleep in <15 min most nights. 1-2 times per week takes about an hour. Wake up several times to pee (I'm 70yo)


Thank you Holland, this information is so helpful. I appreciate everyone taking the time to reply, I've learned so much new info from the last time I researched meds a few years back.

I am reading this to be that when you wake around 11 pm to midnight you take the "dipyridamole 75 mg, 360 mg kratom, 50 mg gabapentin, and 5 mg THC."
Is it RLS that wakes you in this time frame? Are you able to go right back to sleep, or do you have to wait for the meds to kick in?

I've not tried THC and dont know if that works quickly. I know when I've had to take additional doses during the night of opiods it can take an hour (of vigorous moving) before i can fall asleep again.

Thanks much!
Shari

Re: What med cocktail works for you??

Posted: Mon Aug 13, 2018 6:27 pm
by Rustsmith
Shari, the time that it takes THC to work depends upon the mode of delivery. Smoking (not recommended) or vaping provides an impact that is almost immediate, but it also wears off rather quickly. Tinctures that are placed under the tongue can take a few minutes to work, but last longer. Edibles can take an hour to kick in but the effect can last for hours.

Re: What med cocktail works for you??

Posted: Mon Aug 13, 2018 7:35 pm
by stjohnh
mutsy67 wrote:I am reading this to be that when you wake around 11 pm to midnight you take the "dipyridamole 75 mg, 360 mg kratom, 50 mg gabapentin, and 5 mg THC."
Is it RLS that wakes you in this time frame? Are you able to go right back to sleep, or do you have to wait for the meds to kick in?


Shari, I am never awakened by urge to move symptoms or kept from going back to sleep. After I pee I am able to immediately go back to sleep, thanks to the THC, gabapentin, and kratom. I don't have to wait for the late night meds to kick in.

Re: What med cocktail works for you??

Posted: Tue Aug 14, 2018 4:11 am
by legsbestill
Ldn update: I wish I could say that it helps my rls but if it does it is minimal. I have read accounts by some people who found it completely resolved their symptoms but sadly that has not been the case for me. Maybe it will work that way for you - fingers crossed.

I do think it helps me feel well and alert during the day however. Dipyridamole also helps greatly with daytime well being. This is hugely significant for me as I found the drugs that do help with the urge to move symptoms were having a devastating effect on my ability to function normally during the day.

I am taking a break from mirapexin at the moment and need more Kratom in consequence. I therefore moved my ldn in the morning which may affect its effectiveness somewhat.