First time for this. : Last night was... - Restless Legs Syn...

Restless Legs Syndrome

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First time for this.

Woody4 profile image
17 Replies

Last night was unbelievable. Haven’t been on 300 gabapentin, .25 pramipexole, very long but it has been great. Not any symptoms of RLS or augmenting until last night. It was my whole body. The ‘can’t get comfortable feeling’ is the closest I can describe it. All day my legs ached, at times had to move them, couldn’t set still. Night time it blew up really bad. Sound familiar to anyone, if so: What did you do??

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Woody4 profile image
Woody4
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17 Replies
Madlegs1 profile image
Madlegs1

Welcome to the club of 1000s. 😜 It sounds like you may be starting to augment. Although it may just be a blip. Did you take any triggers that may have set off the jittsies?

0.25 of Prami is maximum dose for RLS, so if you are augmenting, you should start to get off it. VERY SLOWLY and by TINY increments.

There is plenty of advice on this forum for that protocol.

BUT. Don't panic-- see if things normalise. If they do- by checking triggers, then carry on up the Khyber🥴😜😎.

Why are you taking the Gabapentin as well?

Look forward to hearing from you.

Ps-- elfindoe will undoubtedly tell you to get iron checked, etc, etc -- so I'll get in first!😎

Elffindoe profile image
Elffindoe

Just a couple of ideas -

1) Augmentation can occur with pramipexole even on a low dose. 0.125mg is a low dose.

2) 300mg gabapentin is only the starting dose. Typically it takes at least 900mg. The most effective dose is between 1200 and 1800mg.

Get your iron levels checked.

i.e. serum iron, transferrin saturation (TSAT) ferritina and haemoglobin.

If all these are normal then

1)If ferritin is less than 75 strat on an oral iron supplement

2)If it's between 76 snd 100 enquire about an IV iron infusion.

Identify any triggers and/or aggravating factors that may make your RLS worse.

This is mainly other medications, e.g. antidepressants, sedating antihistamines, anti-psycholtics, some anti-emetics, some anatcids, beta blockers and others.

Woody4 profile image
Woody4 in reply to Elffindoe

I’m trying to get off the pramipexole. I get 1 mg pills sent to me, pill is scored so the first split to .5 is easy. Now is where the trouble starts. I use a pill splitter to get to .25 mg which makes it too small to split again. I’m sure taking it every other day isn’t acceptable.

Elffindoe profile image
Elffindoe in reply to Woody4

That's got me confused. I didn't know pramipexole came in 1mg tablets.

That's more than the maximum recommended dose for RLS, i.e. 0.75mg.

Most people with RLS who take pramipexole either use 0.25mg or 0.125mg tablets.

Using 0.125mg you can cut them in half so that you can reduce the dose in steps of 0.0625mg. You can then take the same dose for two weeks before reducing again.

Taking a tablet every other day isn't a good idea since every time you reduce you may get withdrawal effects within 24 hours every other day, instead of fading over two weeks.

Woody4 profile image
Woody4 in reply to Elffindoe

The pills are scored so it’s easy to break them in half. The VA, I’m assuming, gets a better deal by buying medicines this way. I have several different meds that I have to break in half to get the prescribed dose. The Dr I was going to started me of at .5 mg of pramipexole. When I started augmenting, he prescribed 1 mg and when that only worked for a short period of time, he, seriously, told me to double the pramipexole and to take it 3 times a day. That’s when I cancelled all future appointments and forced the VA administration to help me find someone with more knowledge of RLS. They have gotten me an appointment with, hopefully, a more informed clinic. In the meantime, while waiting for the appointment, my VA Dr agreed to read some literature on RLS and prescribed gabapentin.

Elffindoe profile image
Elffindoe

It may be easy to break the 1mg tabs in half, to get 0.5mg.

However, unfortunately, as you say it's not easy to cut them into 0.25mg pieces, even less 0.125 or 0.0625mg pieces.

The latter being the suggested reduction amount.

Woody4 profile image
Woody4 in reply to Elffindoe

No trouble the last couple days. I’m trying to remember what I had to eat or drink that day. What about the trigger being before that day?? I know I’m stretching. I don’t know if it will work or not, but I am going to try cutting the pramipexole up into tiny pieces and then dividing it up into 8 piles in order to get a smaller dose.

Elffindoe profile image
Elffindoe

Triggers usually have their effect the same day, but with food, it may be a couple of days, I guess.

Your best bet with the tablets is to try and get 0.125mg ones. I reduced in steps of half of one of these. In order to get the same dose with 1mg tablets, you'd have to divide it into 16 piles.

8 I'd say is barely feasible, 16 impossible.

You could try crushing the tablets into powder, but still would have to divide into tiny amounts.

Woody4 profile image
Woody4 in reply to Elffindoe

Food or drink, I’ve not had anything I can think of.

Last night I tried splitting a pill into 8 piles (1.25). Only been 1 night and all’s good so far.

Elffindoe profile image
Elffindoe

That's good to hear.

Woody4 profile image
Woody4 in reply to Elffindoe

Wanted to wait a couple nights to get a little better idea of what’s happening. I had a couple nights of nothing, then third night after about 3 hours sleep I woke up with my right arm acting up. I flipped and flopped hoping it would stop. And lo and behold after 10-15 minutes, it stopped and I slept the rest of the night. Last night I woke up to real mild symptoms in my leg. It didn’t last very long and I fell back to sleep. Could this possibly be a sign the pramipexole is wearing off??

Elffindoe profile image
Elffindoe in reply to Woody4

It sounds promising,i.e. no severe witdrawal effects.

However recall that stopping pramipexole will ony reduce augmentation. Unless you replace it with something then you will still have RLS symptions as you had before starting pramipexole.

The pramipexole didn't cause your RLS, it only caused it to get worse.

Woody4 profile image
Woody4 in reply to Elffindoe

Won’t the gabapentin stop the RLS??

Elffindoe profile image
Elffindoe in reply to Woody4

Apologies, I overlooked the gabapentin.

It could stop the RLS, but 300mg isn't really going to help. It's simply not enough.

How much it will help won't really be clear until you've entirely stopped suffering withdrawals from the pramipexole.

There's no standard fixed dose for gabapentin for RLS. The dose needs to be gradually increased until it becomes effective.

However you may need at least 900mg.

Woody4 profile image
Woody4 in reply to Elffindoe

Today was a little more intense but about an hour after taking the gaba and .125 parm things have settled down

Elffindoe profile image
Elffindoe in reply to Woody4

Good, you're doing well.

Woody4 profile image
Woody4

Okay things were going great..In the beginning I had a couple days with mild symptoms in the evenings. Went away with the meds, good sleep. Then everything was really good, no evening symptoms nothing. Now 2 nights in a row, not the drive you out of your mind kind, but just like a gentle, you don’t really want to go to sleep do you, aggravation. I’ve taken a gabapentin when I got up and sat for an hour or 2 and gone back to sleep. You think this is a sign I should up the gaba to 600 from the 300?? I’m still taking .125 pramipexole.

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