PLMS

[MCTM]

At the end of last year I was diagnosed with PLMS. I saw a neurologist who specialised in this condition and he diagnosed Gabapentin (Neurontin). I found that taking 900mg at night transformed my life – I woke up in the morning (even if I had a disturbed night) feeling fabulous, could concentrate more, in short I felt like the Duracell bunny!

Unfortunately after about 3 months the benefits started to wear off. I asked a GP to refer me to a neurologist at the local sleep clinic (the first consultant was in London and I saw him privately). They have refused and have prescribed Pregabalin (Lyrica) at a maximum dose of 300mg per night. I’ve been increasing the dose from 50mg and am now on 250mg and I can say I feel awful! Even though I’m staying asleep (I do tend to sleep very lightly) I wake up in the morning feeling like a zombie.

I’m not sure where to go from here. I will obviously make an appointment with a GP (I don’t say “my” GP as it’s almost impossible to see the same person twice). I also need to talk to my health insurance to see if I can go back to the original consultant but it would be good to see somebody more local. In addition I thought I’d see if anybody on here had any suggestions.

As an aside, my RLS seems to have got worse. Or maybe I’m just more aware of it. I’ve had this on and off for years but never bothered getting any treatment for it (it wasn’t that bad).

Any thoughts or advice?

[Hidden]

Hi MTCM. It might be worthwhile taking the Lyrica earlier so you sleep through the hangover a bit. Say you take the Gabapentin at 10pm, try 8 failing that try 6pm.

Hope that helps.

[MCTM in reply to Hidden]

Yes, that's a good point. I normally take it about 1 1/2 hours before I go to bed. I might try a bit earlier to see what happens. I just hadn't expected such a "hangover" effect. Thanks for this.

[Hidden in reply to MCTM]

No problem. A lot of difficulties with drugs can be sorted with a time change.

Take care.

[marsha2306 in reply to MCTM]

I take gabapentin 3 hours before bedtime and don't get in the bed until very sleepy.

[Hidden]

Hi,

I can't believe they refused your request for a neurologist!!!! That's awful!!!! It sounds like you need one!! ASAP! One who understands this stuff. Nobody can possibly know the hell (I'll revise that - HELL!!!) we go through unless they go through it themselves. Refusing you a neurologist is like saying "oh, it's not that bad". Ummm....yeah, it is.

I was diagnosed with PLMS in 2011. The doctor put me on Pramipexole, but unfortunately I augmented on that 2-3 years ago. Instead of unconscious leg movements at night, I started getting concious leg movements during the day as well. I was referred to neurologist, who diagnosed me with RLS. The first med he put me on was Neurontin, but it didn't work for me. I am now on the Neupro patch.

I'm assuming a polysomnography was how you were diagnosed with PLMS? In addition to my initial one in 2011 I had another one done last year. This one confirmed that my PLMS had worsened (Augmentation). My PLM rate is 60/hour and my deep sleep is 6% (should be at 20-25% for my age of 36)! I am completely and utterly exhausted every day!

My advice: in addition to following the advice of other people here (they are wonderful!), get a referral to a neurologist - one who really understands everything there is to know about PLMS, Augmentation, RLS, etc.

Hope this helps.

Hugs,

[MCTM]

Dear Jess

Thanks so much for your reply. I am making headway I think - my private healthcare have approved my referral to a different neurologist (one who is based nearer to me and has access to the original sleep clinic where they did the sleep study that led to me being diagnosed with PLMS). The next problem is that this consultant isn't really taking new patients (even private) but I'm hopeful that the sleep clinician I saw can persuade her to see me! Whatever happens I need to get off the pregabalin (Lyrica) as it is making me feel awful.

I followed the advice to take the meds earlier in the evening: on Friday I took it at 18:30 instead of about 21:00 (1 - 1 1/2 hours before going to bed). Well by 20:00 I had to watch TV with my hand over one eye as I was getting horrendous double-vision and dizziness. Obviously normally I'm in bed and asleep by then so I wasn't aware of this as a side effect but it's stirred me into greater action.

It's just crazy that I have to spend so much time trying to identify consultants who know what they are talking about and are taking appointments. Hey, that's today's NHS I guess ......

It sounds as though you are suffering much worse than me and I feel dreadful so my heart goes out to you.

Take care

[Hidden in reply to MCTM]

Yeah, it is not cool at all but I'm doing what I can.

Talk about not knowing about side effects!! I didn't know about Augmentation until after I started getting worse. The prescribing doctor didn't mention this side effect. When I started getting worse (my legs all of a sudden started getting antsy during the day) I was scared. I didn't know what was going on with my body.

I am so glad to hear that you are making headway with a neurologist referral! I hope for your sake that your sleep clinician is a good persuader! Do not ignore your feeling that the RLS might be getting worse. Read up on Augmentation. This side effect is associated with dopamine agonists (Pramipexole, etc.). It is a sneaky effect in that it doesn't necessarily manifest right away. It took 4 years for it to manifest itself in my body. Your sleep clinician should know about Augmentation. If he/she hasn't mentioned this (and their persuasive juices alone aren't enough to get you into that neurologist), mention that you think you are augmenting (from what you describe, it sounds like you might) They will have to get you in for that because, if not, they will never hear the end of your complaints

Good luck!

Hugs,