RLS update

[Ephemera]

Been to see neurologist today. He is now looking at sending husband to a sleep lab as the Gabapentin does not seem to be working. Most nights he cannot lay in bed because of RLS and PLMD. He is awake until 4/5am walking around and then sleeps for a couple of hours and wakes up for the day. Anyone been to a sleep lab with insomnia?

[SueJohnson]

How much gabapentin was he on? Did he take it in divided doses of no more than 600 mg 2 hours apart? Did he have his ferritin checked? If he decides to come off gabapentin, he should do it very very slowly to avoid withdrawal effects. If he does it slowly enough he will have none. A sleep lab is only going to check if he has PLMD or if he needs a CPAP machine because of sleep apnea. And although those are useful, it won't help his RLS. I assume when you said gabapentin doesn't seem to be working you meant not only that it doesn't stop his insomnia but that it also doesn't help his RLS. If that is the case it may mean he needs to be on a low dose opioid.

[Ephemera in reply to SueJohnson]

Hi Sue. Yes he is taking his Gabapentin 2 hrs apart but as soon as he lays down to go to sleep his leg muscles start feeling like they are knotting up (PLMA) and he has to get up and walk around. This goes on for most of the night. Consultant said ferritin was ok. What would be the opoid. Very weary about any more pills now as nothing seems to work!!

[SueJohnson in reply to Ephemera]

Doctors will say ferritin is OK when it is in the normal range for people without RLS but what is normal for others is not normal for those of us with RLS. Do you know what his ferritin is? And how much gabapentin is he taking? As far as what opioid, I will leave that for others to answer.

[67Waterman]

Gabapentin did not work for me at all ... whereas strangely Pregabalin does ....

[Ephemera in reply to 67Waterman]

Bit nervous about changing pills, been on so many that do not work. Takes so long to wean from one to another. Will have a think about it. Thanks

[DataRN in reply to Ephemera]

Your husband doesn’t have to wean from Gabapentin to Pregabalin. He can switch over right away as they are the same drug category. Pregabalin (Lyrica) worked much better for me. Sadly, my ferritin and transferrin were low. I received iron infusions but learned that they only relieve RLS symptoms for about 50% of patients. Now I’m on low dose Methadone. Methadone has been the best treatment, without any side effects, that I have ever been on. Hope your husband finds some relief!

[SueJohnson in reply to Ephemera]

DataRN is correct. If he wants to try pregabalin divide the gabapentin amount by 6 to get the correct dose.

[Loopylegs]

I feel for your husband, I really do, I was in that predicament. I can only say what helps me as everyone's rls is so different, I tried a sleep consultant who put me on a very high dose of gabapentin, I told him gabapentin did nothing for me, but he knew best! Anyway long story short, I take a low dose pramipexole, I have to take 300mg of gabapentin because the pramipexole causes insomnia, however, the gabapentin doesn't help the rls and I refuse to up the dose of pramipexole because of augmentation, so in order to sleep on top of that I take 60mg of codeine and magnesium malate, I sleep 6hrs on this concoction, waking perhaps twice/three times with thirst or needing the loo, but no rls. I've resigned myself to live with this disease, I no longer drink alcohol or caffeine as this worsens my rls, but I'm happy to be here and thankful for all the advice I've gotten here over the years, hope you find help too.

[Jetto]

go to RLS.org and get him to a RLS SPECIALIST NEAR YOU

[Ephemera in reply to Jetto]

sorry we are in UK, hardly any specialists here