Pregabalin

[VJ29]

HelloAll you very helpful people on this forum.

I'm currently taking 400mg of pregabalin.

Following my previous post on taking sertraline I managed to stop taking it and my rls has improved again saying improved not to the point where I get a good sleep but lots better but it still drives me mad and my husband.

I keep taking to various doctors and there is no way they will prescribe a slow release opiod the best I get is co-codomol 50/500 this is for my back as well but they said can't justify if just for rls.

I don't get enough and run out but again it's like talking to the wall.

They are helpful in offering DA's every time no thank you but I do get tempted.

So I've now increased the pregabalin to 500mg as a trial it again wasn't perfect but again a bit better until the last 3 nights where it's been terrible I've also run out of co-codomol and I'm wondering if that's why?

i.e because I haven't taken the painkillers would they make such a difference?

I don't now know if it's worth carrying on with the increased dose if not making any difference.

Also my feet and ankles are swollen and feet very sore is this the pregabalin? This was at 400mg not because of the increase.

Also another option would be to move back to the gabapentin that also didn't work that great but might stop the water retention and putting weigh on. ?

My ferritin is now 73 so I'm continuing with the iron tablets.

Any help would be appreciated and sorry for the long message.

[SueJohnson]

It doesn't make sense to go back on gabapentin because of having to divide the doses into 600 mg 2 hours apart. Yes pregabalin can cause swollen feet.

Yes running out of the co-codamol is why it was worse.

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.

OR you need a new doctor who will prescribe a low dose opioid. If you tell us what city you live in we might be able to give you the name of a knowledgeable doctor.

[VJ29 in reply to SueJohnson]

Thank you Sue and JoolsI thought it might be because I ran out of the co-codomol it's actually 30/500. But wasn't 100% as I only really get enough to take 4 tablets and I take 2 before bed.

When I spoke to the doctor about my ankles and feet he didn't connect to pregabalin.

My more recent visit the doctor did actually test my ferritin level this time without asking amazing!

But also didn't pick up about my previous visit about swollen painful feet and legs. And agreed to increase my dose I didn't know what else to ask for as opioids were off the table.

I will keep the dipyridamole in mind Sue and look into it , I would try it today if I could.

The doctors just rule opioids out Jools as addictive but don't listen when I say all the drugs for rls are in away as we can't do without them! If I didn't have a painful back issue I would be given the co-codomol at all either.

I live in the UK in Halifax west Yorkshire and would love the name of a rls knowledgeable neurologist please if possible.

Thanks so much it's terrible this and I'm just going from day to day putting up with bad nights to a point then ring doctors again and again!

[SueJohnson in reply to VJ29]

Dr Christopher Murphy - Consultant Neurologist . Runs a Sleep Clinic. Alexandra Hospital, Mill Lane, Cheadle SK82PX. Appointments phone [phone] However you must be very firm and not let him prescribe ropinirole, pramipexole nor the Neupro Patch. You would have to see him privately. He will prescribe opioids. He charges around £250.

[Joolsg]

How infuriating that your doctors are so unwilling to prescribe low dose opioids.They probably think you'll become addicted or develop tolerance because that is what they were taught. However, it's not correct. Addiction and tolerance do tend to occur when opioids are prescribed for PAIN but not when prescribed for RLS.

Dr Winkelman's opioid study confirms this.

Also, Targinact is licensed for RLS in the UK so your doctors should be offering you Targinact.

Can you see a neurologist or sleep specialist who will consider a better option for you? If 400mg pregabalin isn't helping and you have swollen legs, a low dose, long half life opioid (Buprenorphine or methadone) would probably be very effective.

Also, a neurologist would arrange an iron infusion for you.

[VJ29 in reply to Joolsg]

Sorry Jools I've replied above instead of seperate reply to you and Sue together.

[VJ29]

Thanks Sue much appreciated, I'll look at him do you know if he does iron infusion at all?

[SueJohnson in reply to VJ29]

He will prescribe an iron infusion.

[VJ29 in reply to SueJohnson]

Oh great !

[Graham3196]

Ive had about 6 weeks experience with Gabapentin with success. I am on 300mg at night. I have suppressed my RLS for many years with my diet but the diet has been less effective over the last 12 months. My doctor was not agreeable to an iron infusion until she read the Mayo Clinic guidelines so while I was discussing this I started on the Gabapentin and immediately I was sleeping all night which was a great relief. The only side effect that I associate with the Gabapentin is a little bit of dizziness, particularly at night and occasional mis-stepping when walking. In my case neither is serious.

I point out that I am still on my diet so perhaps the Gabapentin had an easier job. For whatever reason a long term problem with gastric reflux seems to have been getting a bit worse in the last 12 months and this was keeping me awake or waking me after an hours sleep. I was prescribed a couple of medicines for this but neither was very effective and I have gone back to an age old fix for this - a level teaspoon of sodium bicarbonate dissolved in about a third of a cup of hot water. Get your heart checked before you take this mixture because sodium is not good for your blood pressure. I suggest that you either get tested for allergies or go on an exclusion diet looking for any sort of food problems. I have intolerance for caffeine ( so no coffee or tea as the decaf versions of both still have some caffeine ) , lactose, chocolate, gluten onion (!) , garlic and other vegetables as precluded from the Monash FODMAP diet. I ate onions once about a week ago and that night and the following night I had real RLS just like I used to have.

I still had the iron infusion but, at the doctor's insistence, only aiming at a concentration of 200. While all this was going on my ferritin dropped to 53. I do another measurement in a couple of weeks.

I should mention that I still have a sleeping problem that I had before I started Gabapentin. Some nights I just don't sleep. No RLS but I'm still awake when the alarm goes off.