RLS & Sleep Aponea : I unfortunately... - Restless Legs Syn...

Restless Legs Syndrome

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RLS & Sleep Aponea

Peterhyates7 profile image
8 Replies

I unfortunately suffer from both - I take .27mg (.09mg x 3 times) of pramipexole for RLS & 150mg/ 200mg of modafinil for Aponea (I had a bad reaction to the machine).

The modifinil is to keep you awake & the we all know about pramipexole- however unfortunately one of the side effects of pramipexole is that it makes you sleepy - Not brilliant with Sleep Aponea!

I have seen a Sleep clinic professor for the Aponea & a neurologist for RLS but am unable to find anyone who is an expert on both, and who could sort out medication that is not counter productive.

Has anyone with the same problem found a solution? as at present I have to vary the doses of both, depending on whether I am driving a long distance, or going to an evening meeting.

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Madlegs1 profile image
Madlegs1

I thought Sleep Clinics were the best place to go for RLS diagnosis and treatment. That's what DrB runs in SD.

Most rls treatments tend to put one to sleep- that's rather the whole point.!

I'm not sure about Apnoea - but since it only happens when sleeping- and need to get your sleep - why keep you awake. Yes , I understand about stopping breathing and all that- but you have to sleep sometime- so there has to be a better alternative.

You could email the above Dr

rlshelp.org

and put your query to him.

All the best- let us know how you get on- it will help many others here.

Rotigotine might help instead of Prami- it's a slightly different Dopamine Agonist and a patch that lasts a week (I think) and may not have the same somnolent effect. Others will know more about that particular medication- so don't go by me. Or Google its properties.

Good luck.

in reply to Madlegs1

The Neupro Patch ( rotigotine) lasts for 24hrs. :)

Peterhyates7 profile image
Peterhyates7 in reply to Madlegs1

I don't know if you are in the UK Mad legs 1, but my experience in the NW of UK is that you go to a Sleep clinic for Aponea & a Neurologist for RLS, and never the resin shall meet! - if you pay privately you could go to a Sleep clinic in London who say they can do both, but I need to do more research to make sure I don't end up paying a fortune, and coming away with the same medicines I am on at present.

Having looked at rls.org website it appears that Dr B only does consultations in USA, and does not do anything by email.

Will have a word with my doc re Neupro patch.

I find I get the best sleep with half a tablet of 'Nytol one a night' & 1mg of Diazepam immediately before I go to bed.

I trust that might help someone

Madlegs1 profile image
Madlegs1 in reply to Peterhyates7

I'm in Ireland where rls is unknown😅- but research is being carried out by Sleep specialists.

Regarding email- that site is not easy to navigate- but look for a tiny yellow email icon and click on that. That is Dr Bs' direct line.

Cheers.

in reply to Peterhyates7

There are letters from patients with Dr. B's response, so he will help you out if you email him. If you click on "patient letters" there are 116 of them.

If you can't get the icon Madlegs alluded to to work let us know. His icon didn't work for me at first, but then I discovered that that's because there is something wrong with my Outlook.

I only know of people who use a cpap not anyone who takes a med for the sleep apnea. So, you do need help in that and maybe Dr. B might have that answer as Madlegs has suggested.

You know what my doctors did so that they could all be on the same page? They had a meeting together! Maybe you could suggest that? I know this might be easier said than done. I was very surprised (albeit pleasantly) whe my neurologist suggested calling my other doctors in! I think he did that because he was frustrated to have adopted a patient with a host of other things besides RLS.

I suffer from both as well, although I suspect my RLS and PLMD have since taken over the apnea diagnosis

Many years ago my daughter was concerNed with the amount of meds that I was taking so took me off to Melbourne to see a Neurologist who required a sleep study. After said study he informed us that he couldn't discuss medication for RLS until he had my sLeep apnoea under control. What??? Apparently I stopped breathing for 30-40 seconds/minute. What???

Mongrel mask and machine lasted about two years. I reckon if I gotta die ... during sleep couldn't be that bad.

Needless to say he didn't give a rats arse about my RLS.

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