Sleep studies and RLS

[restlegs1]

Hello everyone.

What have been your experiences of sleep studies, and how useful have they been in managing your RLS? Have they actually contributed at all to resolving your RLS symptoms?

Or is their benefit just to make you aware of which sleep disorders you have and which you don’t?

I ask because I recently visited a sleep and respiratory specialist with a self-declared interest in RLS and he asked me to do one. This was after we had established I have RLS and RES behavioural disorder, for which there is no cure, and no treatment (and which does not bother me TBH). I am not keen on the idea of a sleep study, partly because the idea of someone watching me while I sleep creeps me out, and also because cases have reported in the local press of sleep technicians sexually assaulting patients while they sleep.

I am also not convinced that data gathered from a sleep study in a clinic will necessarily reflect how I sleep at home. So what use would it be?

[SueJohnson]

It is mainly to determine if you have sleep apnea or PLMS. It is not necessary for RLS but many doctors want you to have it.

And if you have PLMS it is treated the same way as RLS..

You might ask your doctor why he wants a sleep study and what he will learn from it.

[restlegs1 in reply to SueJohnson]

Thanks, Sue. Good advice.

[50568789]

I had an overnight stay in a sleep clinic a couple of years ago. Overall not a bad experience despite the multitude of wires and devices I had to wear all night, even slept reasonably OK, but the analysis was I didn't have full blown sleep apnoea (their main interest) just some evidence of RLS and was prescribed ropinirole. I didn't like what I read about it and left it untouched for several months. Then I finally cracked as RLS was very bothersome and started taking it. Some months later I couldn't perceive I'd had any benefits from it, and my GP felt there were other medical priorities and I should drop it, which I did immediately, and had no noticeable effects.

RLS is an ongoing issue, but looking back I am not impressed that the outcome of the very reputable clinic was to dismiss me with a prescription for ropinirole.

[restlegs1 in reply to 50568789]

Thanks very much for this. It is very useful and confirms my suspicions. The sleep specialist I saw is also an aficionado of dopamine agonists, in particular rotigotine patches, or pramipexole, both of which I refuse to take. Like your guy, his main interest is not RLS, but other stuff.

[SueJohnson in reply to 50568789]

What are you taking now for your RLS?

[restlegs1 in reply to SueJohnson]

I don't take any medications, but am 2 months into a regime of taking iron bisglycinate, one 24 mg tablet every second night, taken as per your recommendations. I also take quite a bit of magnesium, and have done so for years. I am surviving, but it gets tough sometimes. When I get an attack I run up and down the stairs. My record for one night is 96 times, but usually it is just around 70 times. It stops the awful ants in the veins feeling, and I go back to sleep quite fast after a set of 10 or 15 trips. And sleep well for an hour or so till the next attack. The iron may be helping a bit - on the nights I don't take the iron I have only 3 or 4 episodes where I have to resort to the stairs.

[50568789 in reply to SueJohnson]

Nothing specific but I have a small arsenal of diversionary weapons. Magnesium bisglycinate every night an hour before bed. Massage legs with Magnesium oil if feel twitchy. Moved Tamsulosin from evening to morning and ramipril from morning to evening. Halved avorstatin dose from 80mg to 40mg. If twitchy in bed, get up and do some Tai Chi leg stretching exercises for 5 mins. Bought a Therapulse, went through initiation procedures, now only use it if RLS starts, 5 mins each leg. Hard to say which of the above is most effective, if at all, but that's now my regime and it's been working well for me, very few RLS disturbances.

Having said that, last night, feeling hungry, I had a good plate of spaghetti bolognese with salad and a homemade garlic bread, a bit too heavy on the garlic (my wife says). Middle of the night, a proper little RLS do started, so something out of the usual must have triggered it (garlic?). Tried a bit of Tai Chi but too tired to engage properly so strapped on the Therapulse, 5 mins per leg, lying in bed, and everything calmed down, off to sleep. Fingers crossed this all keeps going in the right direction.