Have not slept in 2 days

[Jules1953]

I thought I was doing ok getting off Sifrol but the last 2 nights I have not slept. Last night I took 1 paracetamol 650mg, 7mgs of Endone and 0.190mgs of Sifrol

My body has been restless and jerking. No sleep.

Any suggestions.

I am trying to get off Sifrol due to augmentation.

Julie

[Joolsg]

Withdrawal is really tough. Go as slowly as you possibly can and be aware that after you drop the last dose you will get no sleep and constant jerks for 2-3 days & then you’ll maybe get 1 hour a day for a week.

You will need opioids like tramadol or OxyContin or codeine to deal with withdrawal symptoms and if you can get it, cannabis.

What dose of Sifrol were you taking and when did you start reducing?

[Joolsg in reply to Joolsg]

Just looked up Endone- it’s oxycodone so that will help.

[Jules1953 in reply to Joolsg]

Hello Joolsg

Thanks for responding to my posting. I have been awake all last night and all day today.

My Sifrol dose was 0.75mg and I have been reducing the amount I take over the last month.

I have been using Endone to assist me.

So today, late morning I have started on Gabapentin 100mg

and at approx 2.00pm I took 3mg of Endone.

I am wondering what dosage people using Gabapentin would recommend I start with.

And are there any other suggestions.

At present I am still very uncomfortable and having to keep moving.

Julie

[Joolsg]

The minimum withdrawal period is 3 months and up to a year. The slower the better. I’m not familiar with Sifrol(pramipexole) doses but the idea is to reduce by 10% every 2/3weeks and wait for symptoms to settle before dropping another dose. It can be quite hard to split the pills- pill cutters are only so good.

I presume you’re in Australia (Sifrol) and it’s 8.15am here in the UK.

When I was withdrawing from Ropinirole, during the last month, I took tramadol every 4 hours and smoked illegal cannabis as and when. That allowed me about 30mins fitful dozing.

My husband stayed up all night massaging my legs and that really helped.

It is horrible and extremely difficult.

Gabapentin takes 3 weeks to be fully effective and the average effective dose is 900mg which should be taken at night. Some take 300mg an hour before bed and 600mg at bedtime, others take 900mg just before sleep.

Gabapentin won’t help much until about 3 weeks after withdrawal as your body will still be adjusting.

It’s really tough but stick with it as life off dopamine agonists is so much better. The RLS is much milder and only in the legs and only at night.

Withdrawal from these drugs is more difficult than getting off heroin or crystal meth and we get little help from medical professionals. If they actually saw someone going through it with the constant violent jerking and total lack of sleep they might believe us when we tell them how hellish it is.

I wish you strength- lots of us have managed it and know what you’re going through.

[Hidden]

I was on 0.75mg pramipexole, I reduced it by half a 0.125mg tab ever four weeks. If withdrawls are terrible then try cutting a tab in quarters, - difficult.

Gabapentin takes about 2 - 3 hours to be fully absorbed so it's best to take it 2 - 3 hours before bedtime.

It's worth taking at least 900mg. It will help, biu it won't be entirely effective while you have augmjentation and it won't entirely eliminate withdrawal effects, but it will come into its own when you stop the pramipexole.

[Jules1953 in reply to Hidden]

Thanks Manerva, I have not slept for 2 days now.

[Jules1953 in reply to Hidden]

I commenced Gabapentin (GP) today

11.00am 100mg GP

3.00pm 3mg Endone

6.00pm 100mg GP

7.00pm 5mg Endone

11.00pm Paracetomol 665mg

1.30am 100mg GP

2.16am 1/4 of 0.75mg Sifrol

I am still awake. Feeling twitchy,

Julie

[Hidden in reply to Jules1953]

Sorry, you're a few hours ahead of me depending where in Australia you live

Currently 10.45pm on Friday here.

A few suggestions about your medications.

There may be reasons I don't know about why you take these at different times, but if not even if you get symptoms during the day and want to spread the medication out over the day, this isn't necessarily a good idea since you're not getting enough when you most need it - i.e., at night.

Sifrol is best taken 2 hours before going to bed and the same time every day. If you're taking it at 2.15 am because you can't sleep because of symptoms then it's best to take pramipexole before symptoms get to their worst, not after.

Similarly, gabapentin is also best taken 2 - 3 hours before bed because it takes that length of time for it to be fully absorbed. If you take it in 3 divided doses of 100mg several hours apart the level of it it in your blood will never be enough to be effective. You need to take the whole 300mg at the same time. Divided doses is for other conditions not RLS. In addition 300mg is only the starting dose, you probably need to go up to 900mg.

You can build this up in steps of 100mg a day. When you get to 600mg 2 -3 hours before bed, you can start taking any above that 2 - 3 hours before that. (i.e. 4 - 6 hours before bed.)

You seem to be taking about 0.188mg Sifrol. This is a quarter of 0.75mg. I'm not clear why you're doing this, perhaps because you have 0.75mg tablets? In which case it would be better to get 0,125mg tablets.

I'm also not clear what amount you're reducing it by at each cut. If your previous dose was a half of 0.75mg then the reduction you've made is much too much. The smaller you make the reductions and the longer the time between each reduction is, the less the withdrawal effec ts will be and that seems to be your problem now, i.e., withdrawal effects. Twitchiness and sleeplessness.

I suggest you reduce in steps of 0.0625mg i,.e, half a 0.125mg tablet or even a quarter and every 4 weeks.

Paracetamol has no effect whatsoever on RLS.

Then endone should be helping with withdrawal effects, but it won't help if you're reducing the Sifrol too fast.

I hope this makes sense.

[Jules1953 in reply to Hidden]

Hi Manerva, I so appreciate your feedback.

It is now 8.00pm Sunday evening here in Western Australia.

A new night and new attempt at getting it right.

Just taken 300mg of Gabapentin (3x100mg tablets)

0.125mg Sifrol

(I will get a new prescription so I don't have to cut my 0.75mg sifrol in quarters.)

Thanks from Julie

[Ranjits]

I tried to come off from premipoxle twice . But afraid I start taking again two tablets of 0.88 mg every night and some days when my jerks are bad I took co- codamol one tablet nothing else I could do

I have tried Gabapentin Amitriptene every painkiller nothing stoping this restless legs I think I have to live with this terrible syndrome So my advice is start taking which one suitable for you and please let us know what’s helping

Good luck

[Jules1953 in reply to Ranjits]

Hi Ranjits,

I finally had some sleep from 6.00am till 5.00pm

A combination of Gabapentin and Endone and small amount of Sifrol.

Prior to finally getting some sleep I had taken over a period of hours.

400mg Gabapentin

13mg Endone

2 x 665mg Paracetamol

I am feeling very wiped out.

Julie

[Hidden in reply to Ranjits]

Hello Ranjits

I think you mean 0.088mg pramipoexole, having missed out a zero.

0.088mg is the same as 88ug (micrograms) and is the smallest pramipexole tablet.

It is, as you're finding very difficult to withdraw from pramipexole. When reducing the dose you will experience withdrawal effects. This can be both worse symptoms and sleeplessness and can include depression.

This often causes people to stop withdrawing and even increase the dose again. This is the problem with drugs like pramipexole or opiates that cause dependence.

Unfortunately, if pramipexole is causing problems then the only way to relieve the problems is to stop taking the drug and this means getting through the withdrawal effects.

This can be done by reducing the pramipexole in very small amounts over longer periods of time.

You could try reducing your pramipexole by 22ug at a time, that is, cut your 88ug tablets into halves and quarters.

You are currenty taking 2 X 88ug tablets

You could reduce to 1 tablet plus one 1/2 tablet plus one 1/4 tablet

then

1 tablet plus one 1/2 tablet

then

1 tablet plus one 1/4 tablet

and so on.

If you make these reduction no more often than every 2 weeks and up to 4 weeks, then this will reduce withdrawal effects.

Painkillers will help reduce withdrawal effects, but only opiates, nothing else. If your doctor is sympathetic and knowledgeable about RLS they may prescribe you tramadol or codeine. Otherwise the best painkiller is cocodamol. Jules1953 is taking endone a quite potent opiate.

It's best to avoid amitriptyline altogether as it can make RLS worse.

It seems quite a few people say they've tried gabapentin and say it hasn't worked, but there are several reasons why this may be. These include -

1) it takes 3 - 4 weeks to start working and because it doesn't work within a few days, some people stop taking it.

2) the dose has to be built up to an effective dose and some people just don't take enough, it doesn't work and they stop taking it.

3) if somebody is taking a dopamine agomist, like pramipexole and suffering augmentation, then gabapentin is not going to work fully until the pramipexole is stopped. People who are suffering augmentation that find gabapentin doesn't affect the augmentation stop taking it.

4) people who are reducing pramipexole who start taking gabapentin think the gabapentin isn't working because they have withdrawal effects. Gabapentin will not fully work during withdrawal. They stop taking it.

The only sure way of find out if gabapentin works for you is to start taking it and KEEP taking it whether you think it's working or not until at least 4 weeks after completely stopping pramipexole. If you don't do that, then you can't say it doesn't work.

I also suggest you ask your doctor for pregabalin rather than gabapentin it is better for RLS.

This is worth the effort and discomfort of going through pramipexole withdrawal, other wise you will be stuck in your current situation.

[Hidden]

Jules, I'm 5yrs your junior. Brisk exercising of legs - walking & exercise cycling) for atleast 45mins, followed by 15mins of vaping some weed. Works everyth time.