Hi everyone, I am new here, from New Zealand and am newly disposed with RLS. As an RN I suspected but its only 5 months ago with my new partner that I found out that I am moving around, kicking, and basically behaving weirdly in my sleep. He has shown me in some videos, its astounding.
I have been on Sinemex from my GP which was great for a few weeks and then have been given Rampipex, I have only just started it (.25mg) and last night was dreadful, I hardly slept, tossed and turned, I feel down and distressed this morning.
However the worst symptom is biting my tongue in my sleep and my tongue edge is crushed and really painful. Originally the Sinemet stopped this and I was sooo elated. I have a bulky tongue to having half of it removed 20 years due to cancer and the missing bit replaced by a piece of my arm.
I am seeing my GP this morning and feel weepy and upset.
Does anyone else have this jaw snapping thing?
Written by
WendyNZ
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Firstly, strictly speaking from your description you appear to be suffering from PLMD (Periodic Limb Movement Disorder) rather than RLS.
It is possible you may also suffer RLS as well, but RLS is only experienced when awake.
As regards Sinemet. The use of this drug is usually confined to treating Parkinson's Disease, not RLS. It can however be used to confirm a RLS/PLMD diagnosis i.e. if it controls the symptoms then you have the condition. If it doesn't work then you probably don't.
As regards Rampipex, generic name pramipexole, again, if this works, then it may confirm the diagnosis and again, if it doesn't then you probably don't.
I have to warn you that of all the drugs usef to treat RLS/PLMD pramipexole is apparently the worst thing you can take. It is one of three drugs known as dopamine agonists used for the condition. The others are ropinirole and rotigotine.
Dopamine agonists are no longer recommended as a first line treatment for RLS/PLMD because of the severe complications they can cause. Pramipexole is the worst of the three. These are augmentation and Impulse Control Disorder.
The starting dose of pramipexole, when prescribed should be 0.125mg and if it's going to work, then this often works at the start. Since you've been given twice this dose, if its not worked it does suggest that the diagnosis may be inaccurate.
I've also never heard of jaw snapping as part of PLMD although I suppose it's possible.
I'd suggest your best option might be to ask for a sleep study to confirm the PLMD diagnosis.
If you do also have RLS you can confirm this by comparing your symptoms to the diagnostic criteria.
Yes, I do it but I don't bite my to tongue, I clench jaw and clamp and grind teeth. I use a mouth guard now to avoid any more damage to my teeth. I have PLMD and fibromyalgia along with RLS.
Morning Wendy,
I bite, snap, chew, grind, and generally try to eat myself most nights! I'm not sure if a guard would be useful to you if your mouth shape is now different after your op, but it might be that something can be fitted at night for you. Your GP should know.
I'm not sure about these drugs you suggest and what might be making things worse, but plenty of clever folk on here will know, so sure they will help.
But I can send an enormous hug. And I really hope the GP can reassure you and give you a plan to go forward.
Thank you Pesky, the hug is most welcome, hugs back. My GP tends to think that I have RLS during day, PLMD at night and something else for the gnashing of teeth. I am to see an ENT specialist and neurologist asap. Medical treatment is very good here.
He has changed me to Clonezapam .25 and I took the first last eve. I was awake with my antics at about 1pm and decided to take another as was biting hard out, then at some unwise stage I think I decided that wasn't working and took another!! Not sure why, I think I was zonked then. I woke up at 4pm this afternoon, my partner let me sleep. I was absolutely zonked for hours and am now at 9.30pm only just onto it as usual. My partner is keeping the meds shut up now so I cant self medicate.
My mouth is still quite sore so who knows what was happening last night, somehow he managed to sleep through it.
I also have sleep apnoea and am a mouth breather so mouth guards don't help. So far, but looking into a better one maybe.
Thanks to who have read and replied.
Oh bless you. Urgh, it's so, so frustrating when other things are going on, isn't it? You can't fix one thing without it causing a problem elsewhere. If it's any consolation, if I'd taken 1.5 clonazepam I would be out screaming at people in the street or worse. Sends me crazy.
I don't know if I have PLMD or not. It's likely, I suppose. A good friend has it and only discovered it as he visits here and sleeps upstairs and all I hear is him fidgeting all night long!
Your poor mouth. I'm really glad you have been referred. That sounds excellent. Let us know the outcome and what they suggest.
Big love,
Pix
Some further information. The treatment for RLS and PLMD are virtually identical so whether you just have PLMD or both doesn't make a lot of difference as regards treatment.
The recommended first line treatment for RLS is an alpha 2 delta ligand. This is either pregablin or gabapentin. These two were originally used as anticonvulsants, but are also used for nerve pain and RLS.
They aren't quite as effective for PLMD as the dopamine agonists, but they don't have the same complications.
The use of clonazepam for RLS is a little controversial. It is a benzodiazepine and as such has sedative and muscle relaxant properties. It may work for some people. However it is never going to be as effective as other meds as it doesn't affect the two main neurotransmitters that are involved in RLS i.e. dopamine and glutamate.
It's controversial because it's addictive and whereas some doctors allow its long term use, others restrict it.
As you've found, the other problem with clonazepam is that it is long acting i.e. it has a half life (time taken for half of it to be eliminated) of about 30 hours. This compared to pregabalin which has a half life of 6 hours. Hence if you take enough clobazepam to knock you out at night, you will be still knocked out the following day.
The other thing that your doctor should consider, in fact the first thing that should be checked is if you have an iron deficiency. This is a major causative factor.
Blood tests for serum iron, transferrin, ferritin and haemoglobin are recommended. As a rule if your ferritin level is below 75ug/L then starting on oral iron supplement can help raise the ferritin. 50% of people can be helped by raising ferritin to 100ug/L. Ideally it should be 200 or more.
It's also worth looking if there's anything which is triggering the condition. This could include any medications you're taking for other conditions. It could be dietary.
Alcohol, caffeine and sugar are known to trigger RLS/PLMD for example.
Thank you again. Alcohol could be a problem as I have a ‘problem’ with it. Of course the sugar in it 🙄🙄 won’t help.
I’m going to ask to go back into drug two I think, Pregabalin, which wasn’t helping but maybe needed more time. I have an excellent GP who I think has put me on Clozapam short term while getting a neuro appointment for me. I was so distressed seeing him yesterday.
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