Insomnia and Relaxis pad questions?

[whiteleye]

My sleep problem for the last ten years has been that I can't go to sleep. I can be very tired or sleepy but just can't drop off. Have been treated for restless leg with dopamine agonists with some success. I am now on Horizant (I do suffer neuropathy in left foot) and hydrocodone 2.5 to 5 mg at night and it usually puts me to sleep.

I decided to try the Relaxis Pad. After first week, I can't tell that it does anything. Carl told me last night to only use it when I have symptoms of restless leg. Last night, I woke up after an hour of sleep with vague symptoms of restless leg and used the pad successfully.

I think that my restless leg situation is mild or moderate at most. The worst symptoms, of course, have been when I have been tapering off the dopamine agonists. The pad will only help if I have restless leg. I guess my questions concern my diagnosis and whether Relaxis pad will help.

Is it insomnia as well as restless leg? Would those dopamine agonists work on insomnia? When I was first put on pramipexole, it was magic, but as all of you know, it eventually stopped working so well. Doc made mistake of taking me off of it cold turkey which really made the restless leg unbearable, and now that I am off of the dopamine agonists, the symptoms have tapered down. Would Relaxis work if the major problem is insomnia?

Sorry, that I can't seem to make my questions concise. And, thanks for the help figuring out if I should send my expensive Relaxis pad back.

[involuntarydancer]

Hi Whiteleye, I have a similar situation to you and I have a relaxis pad. I am not succinct at the best of times so sorry that this is a bit rambling. Also I can't give you a definitive answer to whether you should keep the Relaxis pad but I can pass on my experiences.

I was on Pramipexole for a long time. It worked wonders for my RLS and I slept very well while I was taking it (it did have some down-sides but not relevant for these purposes). I came off it last year and endured the predictable post-augmentation torture that you clearly also experienced. I then entered the merry-go-round fun of finding an effective post-augmentation regime. Prior to the onset of RLS (in my mid-thirties), insomnia was not something I suffered from and while on pramipexole I did not experience it.

After coming off pramipexole I took oxycontin (an opioid) for my RLS and I had substantial problems with 'alerting' (I would lie awake all night - this is a phenomenon recorded by many others who take opioids for RLS and I was warned to look out for it). I ended up taking more drugs (pregabalin and cannabis) to induce sleep (these are only intermittently effective).

I had to stop opioids more recently because they were causing central sleep apnea. At that point I ordered the relaxis pad and started taking kratom. I still have major problems with insomnia and can easily lie awake for long tracts of the night though it is nowhere near as bad as when I was on oxycontin.

I have since discovered that many RLS experts recognise that there is a strong insomnia dimension to RLS in addition to the obvious sleep disruption caused by the urge-to-move symptoms so that even when the urge-to-move is controlled there is still insomnia. They surmise that it is caused or contributed to by raised levels of glutamate in RLS sufferers. I now believe that for me (and possibly you also), the pramipexole counteracted the insomnia dimension as well as the urge to move. I am not sure if kratom causes 'alerting' or whether it is just RLS insomnia that I experience now - I lean to the latter.

I am a member of the US RLS Foundation and they produce webinars from time to time relating to RLS. The last one I viewed included an interesting overview of the various mechanical devices that use neurostimulation to counteract RLS, including the relaxis pad. According to this webinar the relaxis pad has been tested - I think in a double blind test but I'm not sure - and found to have NO benefit to RLS urge to move symptoms BUT (bizarrely) the tests found that the pad does help with sleep.

Regardless of this finding I wouldn't be without my Relaxis pad and find it particularly useful if I go for a nap in the daytime - it really seems to quiet the legs then. However, I would accept that the benefits at night time are inconsistent. Last night I was plagued with insomnia and I put the pad on even though the urge-to-move symptoms were under control. Maybe I do now find it soothing because I actually went to sleep for brief periods.

In summary:

1. There is a recognised insomnia dimension to RLS even when urge-to-move symptoms are under control - added to which the opioids can cause alerting which can make sleep even more elusive;

2. In some people (me anyway), dopamine agonists seem to mask the insomnia;

3. Research suggests that the Relaxis pad is not effective for urge-to-move symptoms (the webinar did look at other devices which were found in tests to be more effective including compression devices that are worn on the feet/legs) BUT did find that the Relaxis helps sleep;

4. I find the Relaxis pad helpful and would be very sorry not to have it - even if the effect is purely psychosomatic;

5. In making the decision whether to send it back you could view the webinar - it is on youtube - youtube.com/watch?v=i-U9tcA...(Not working as expected?) but it is LONG - over an hour.

I would not wish this condition on anyone but it is reassuring for me to hear of someone else who has had a similar experience with insomnia - ie that it was controlled when on pramipexole but is now a major problem. I hope you find a solution and if you do that you will post it here!

[whiteleye in reply to involuntarydancer]

Thank you so much for your information. I was unable to play the youTube video but I have joined the RLS organization and perhaps I can find it on their site. The "alerting" with the opium drugs is new to me, and I have been using the hydrocodone to get me to sleep at night. Oh well, I guess what works tonight may not work tomorrow night. Again, thank you so much for your response.

[Bajatom]

Relaxis reduces RLS symptoms when they wake me, but then I can't return to sleep. Using the pad wakes my wife. I no longer use it. Plant based diet helped the most.