Insomnia

[Baz33]

I'm waiting to see the gp again this morning, this has been a nightmare since May and I now don't sleep at night, I've no idea what to take,how to take my iron,my magnesium,my gabapentin, I'm not eating because I'm not sleeping, I'm paranoid and demotivated and nothing is working I feel desperate and helpless

[Joolsg]

Your doctor won't know how to help you.That's why we advised you to slowly reduce the Pramipexole and raise serum ferritin above 100, preferably 200 after you get the results of the bloods.

Also switch any trigger meds like anti depressants, anti histamines, statins, beta blockers, PPI after discussion with GP about the RLS safe options.

RLS-UK website has the list of trigger meds.

Then start pregabalin or gabapentin about 4 weeks before your planned last dose. Ask for a low dose opioid or buy medical cannabis to settle the increased RLS symptoms at each dose reduction.

Do NOT let GP prescribe Ropinirole again, or the Neupro Patch, or any other dopamine agonist, or Amitriptyline.

Let us know what they said.

[Baz33 in reply to Joolsg]

I had to choose between pregabalin or a patch he couldn't advise which and I'm waiting for a call today for my infusion, is the patch a bad move ?

[Joolsg in reply to Baz33]

YES. Very bad move.It's another dopamine agonist and will quickly worsen your RLS, prolonging your suffering.

Go back, get pregabalin, continue Pramipexole prescription and reduce it slowly.

Half a 0.088 pill every 2 weeks. Start pregabalin 4 weeks before planned last dose. It won't help much until 3 weeks after last dose of Pramipexole.

Withdrawal for most is really hard and brutal. But, once off Pramipexole, your RLS will be much better and the iron infusion may mean you won't need to keep taking pregabalin.

[Baz33 in reply to Joolsg]

Oh god what a nightmare, he said the prevailing was unlicensed so not safe ?.

[SueJohnson in reply to Baz33]

What do you mean by "the prevailing?"

[Baz33 in reply to SueJohnson]

Pregabalin sorry

[Fingerandus in reply to SueJohnson]

sue could you tell me which is strongest 0.25mg or 0.088mg

[SueJohnson in reply to Fingerandus]

In the UK it usually goes by .088

and in the US by .25 but they are the same strength.

[Fingerandus in reply to SueJohnson]

hi thankyou for your answer so i am still taking the same strength she said the 0.25 was less. im in Australia i should be cutting the 0.25 in half then

[SueJohnson in reply to Fingerandus]

yes

[SueJohnson in reply to Baz33]

It's perfectly safe for RLS and many many people take it in the UK. It may be controlled but it can be prescribed. It is in no way unsafe for people with RLS and is the main treatment after checking iron. See the Mayo Clinic Updated Guidelines on RLS which is the bible for treating RLS and copy the relevant sections on gabapentin and pregabalin to show your doctor. I can't access the NICE guidelines on RLS since I live in the US but I feel sure they also talk about gabapentin which is basically the same as pregabalin and about pregabalin. If your doctor still won't prescribe it ask for a referral to a neurologist. And if that doesn't work you may have to go private.

[Joolsg in reply to Baz33]

Lack of training and education. Pramipexole is far more dangerous.Pregabalin is not specifically licensed for RLS but it's clearly mentioned in NHS and NICE cks guidance which GPs are supposed to look up and use. They don't.

Go back and ask for Pregabalin.

NHS and NICE cks attached in case your GP wants to read them

cks.nice.org.uk/topics/rest...

nhs.uk/conditions/restless-...

[Baz33 in reply to Joolsg]

Thankyou .

[SueJohnson]

Take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea Take magnesium, calcium or zinc even in a multivitamin, at least 2 hours apart Don't take your iron tablets before or after exercise since inflammation peaks after a workout.

After 3 weeks on gabapentin increase it by 100 mg every couple of days until you reach 900 mg After that point wait until you are off pramipexole and your symptoms have settled. Then start increasing by 100 mg every couple of days until you find the dose that controls your symptoms. Take it 1-2 hours before bedtime. Since you will need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Take your magnesium even in a multivitamin, at least 3 hours before or after taking gabapentin.

Magnesium is also best taken at night.

I know it is confusing with all of them taken at night but interfering with one another. Here is a sample schedule:

7:00 magnesium 10:00 gabapentin & iron 11:00 bed

When you are taking more than 600 mg gabapentin: 5:00 magnesium 8:00 gabapentin

10:00 gabapentin & iron 11:00 bed

For insomnia I recommend ambien or zopiclone.

[Baz33 in reply to SueJohnson]

I took 2 zopiclone and was wide awake , they've taken me off the gabapentine and put me on a patch , rigatone of something I'm.not sure ???

[SueJohnson in reply to Baz33]

See Joolsg 's reply about the patch. Why are they taking you off the gabapentin?

[Baz33 in reply to SueJohnson]

It's not working, I haven't slept for almost a month, I am having an infusion tomorrow at 10am ....I won't use the patch but continue to ween myself off the pramiplexol

[Joolsg in reply to Baz33]

👌

[Baz33 in reply to Joolsg]

They didn't give me the infusion they just gave me more oral iron ffs

[SueJohnson in reply to Baz33]

As Joolsg said gabapentin and pregabalin are basically the same drug. Strange your doctor refused pregabalin but was willing to have you on gabapentin. I agree, stay on gabapentin. It probably didn't work because as Joolsg said it won't be fully effective until you are off pramipexole and your symptoms have settled. I may have told you this but after you are on gabapentin for 3 weeks you can increase by 100 mg every other day until you are on 900 mg dividing the dose so you take 600 mg 1 hour before bed and 300 2 hours before that but don't go any higher until you are off pramipexole and your symptoms have settled.

[Joolsg in reply to Baz33]

Rotigitone. Do NOT start. It's another dopamine agonist and will continue the suffering you experienced on Pramipexole and, before that, on Ropinirole.

I hadn't realised you were also on gabapentin. Gabapentin is the SAME class of drug as pregabalin. It also isn't specifically licensed for RLS. It is an anti epileptic, like gabapentin, but has similar side effects.

Stay on gabapentin. It will help once you're off Pramipexole.

GPs mistakenly think it will help while you're suffering augmentation on Pramipexole. It won't. Gabapentin and pregabalin only help once you're through withdrawal from Pramipexole.

So, don't start Rotigitone patch. Stay on gabapentin or you'll get with symptoms from that.

Reduce the Pramipexole slowly.