Fed up

[Rangers52]

Well the last 2 and a half wks have been hell I feel like I'm back to square 1 again.After 6 months on pregabalin and very little rls for some reason it's back again and horrendous.

I'm so done with this sh*t

[Madlegs1]

Something has triggered this.

Check back on your food diary to see what might have set it off.

Food, (msg etc). Drink (alcohol etc). Medication ( antihistamines, antidepressants, statins, PPIs etc.

Or try elimination.

Good luck.

[SueJohnson]

In the first year it is common to have to increase your dose of pregabalin so try adding 25 Mg

[Rangers52 in reply to SueJohnson]

The doctors were reluctant to give me 225mg I cant see them increasing it anymore

[SueJohnson in reply to Rangers52]

Why?

[Rangers52 in reply to SueJohnson]

He said its an extremely strong drug and the side effects can be extreme. I told him the side effects I had were gone in a couple of wks but still he wasn't listening.

I don't see the point in taking them anymore when it's no longer having an effect

[SueJohnson in reply to Rangers52]

That's ridiculous! Did you show him the sections of the Mayo Clinic Updated Algorithm in RLS on pregabalin? If it no longer works and he won't give you more your only option is a low dose opioid like buprenorphine. Is he willing to prescribe that? If not it is time to ask for a referral to a neurologist or a change in doctors even if it means going private. Where do you live ? I or someone else may be able to give you the name of a knowledgeable doctor?

[Rangers52 in reply to SueJohnson]

I live in Edinburgh

[SueJohnson in reply to Rangers52]

Dr Colin 0'Leary in Glasgow. Scottie99 saw him.I have no idea how satisfied he was. You might want to message him. He was also mentioned to Swankee by our moderator Kaarina so maybe s/he saw him too. Let us know what you find out.

[Rangers52 in reply to SueJohnson]

Thank you

[ChrisColumbus]

1. How much pregabalin are you on and when are you taking it? The Mayo Algorithm says: "It is recommended to start treatment 1 to 2 hours before usual onset of symptoms. Treatment should commence at 75 mg of pregabalin daily (50 mg in patients older than 65 years) and be increased every few days as needed. Effective pregabalin doses are usually in the range of 150 to 450 mg per day."

2. Did you try stopping taking the artificial- sweetener-containing syrups that you were using?

[Rangers52 in reply to ChrisColumbus]

Yes I've stopped all the artificial sweetener I'm on 225mg of pregabalin and I use the therapulse aswell but even that's not helping anymore. I've checked to see if anything else could have triggered this but I'm at a loss. I'm also experiencing extreme headaches when I wake up but that could be due to not getting to sleep until about 4am

[ChrisColumbus in reply to Rangers52]

As SueJohnson says, and as the Mayo Algorithm suggests in giving the effective dose range up to 450mg, you almost certainly need to increase your dose.

I note that you say your doctor was reluctant to even give 225mg. You might point out to the doctor that (even) NICE now says (as revised Feb 2024) "maximum recommended daily dose for RLS is 450 mg".

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

NICE is unclear about how/whether the dose should be split: my understanding is that splitting the dose through the day is NOT needed or indeed advisable for RLS (unlike for neuropathic pain) but Sue or Madlegs1 may give advice on that.

[Rangers52 in reply to ChrisColumbus]

Ok thank you id been taking 1 tablet at 5pm then 2 at 9pm but changed when it started up again to all 3 tablets at 9pm to see if that would help but it didn't

[ChrisColumbus in reply to Rangers52]

So that's 3x75mg tablets = 225mg, still only half of NICE's maximum of 450mg for RLS. (The maximum for other purposes is 600mg/day).

Pregabalin can be prescribed in the UK to reach whatever dose you need in tablets or capsules of 25, 50, 75, 100, 150, 200, 225 and 300mg each.

[Rangers52 in reply to ChrisColumbus]

I will try speaking to him again

[ChrisColumbus in reply to Rangers52]

Hopefully he's just missed that update to NICE guidance: ideally show him or print out from the link I shared.

[Rangers52 in reply to ChrisColumbus]

I will thank you

[JenniferBut in reply to Rangers52]

Headache makes me wonder about sleep apnea..? Sorry to mention as you have enough going on. I hope it improves for you. Sooo crappy