Tag Archives: Restless Legs

Update on Relaxis

I have a few more days (or nights) of data, some good, some bad. In general, I think the pad is working, but I’m still a long way from having it perfected.

One of the exceptional things the Relaxis company does is that a representative stays in touch for the trial period. Carl has called me twice since I got the pad (six days ago) and will call again today or tomorrow. These calls are useful. I can explain what’s been happening and he can offer suggestions for improvement or assurances that things are going as they should.

A drawback to this is that he may give advice based on not enough data. For instance, on our second call, after I’d tried the pad for two nights, I mentioned that the pad had reduced my symptoms but that I could still feel them a little. He suggested I try higher settings to see if that worked better, reminding me that I need to experiment with the settings to see what my response is.

That night’s slightly higher setting helped a little more and the next night (Saturday) I tried a little higher to see if it would help more. Umm… no.  Using the higher setting gave me my worst night in a long time. It made everything worse. It was so bad, I was moaning. The nerve sensations reminded me of labor contractions, which I know how to handle. I had five kids without drugs and taught natural childbirth to others. I thought if I handled the RL waves like contractions, maybe I could get through them. But these waves were wildly intense. They only lasted about 4 seconds, but the next one started about 3 seconds after the previous one ended. With labor, at least you know the contractions are doing an important job, and it will all end once the baby is born. But this… there was no point and no end in sight, so in desperation, I took another full dose of Sinemet, then stood up for 30 minutes before going back to bed. I did not use the pad at that point, and happily, the medicine did the trick. I fell asleep around 4:00 and slept until 7:30.

So last night, I put the setting back to a lower level. No pills, just one episode of RL, and the pad made it go away almost immediately. But I never fell back asleep. I’ve been awake since 2:00.

That’s not unusual, although I’m never happy when it happens. That’s typical insomnia – adrenaline and hyper thoughts making me wide awake and ready to fight. But here I have a suspicion: that last night’s episode was caused by – or made worse by – the vibrations. I think this because in addition to the usual adrenaline, my whole body felt vaguely… tingly. Like the nerves were reacting to an electrical field or something. Or maybe that they were still vibrating slightly as an after-effect of the session with the pad.

I will discuss this with Carl when he calls, either today or tomorrow. I hope it’s tomorrow because I’d like to see if it happens again tonight. I’m kind of afraid that this reaction is a game-ender – the kind of side effect that means I can’t use the pad. I hope not, because as I said, I think the pad is working.

We still haven’t tried it for travel and I really want to see if it helps with that. We’re going to my daughter’s in San Jose on Saturday, and that will be our big experiment. Even if the pad helps only with car trips, it’s worth the price. Even better if it helps with plane trips. We won’t be flying for the rest of year, so I won’t have a chance to try that yet.

The experiment continues….

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RL Hope… Maybe

So sorry to keep you all in suspense for two days! I’ve used the new pad for two nights now. That’s not enough time yet to know if it’s going to work or not, but here’s how it’s gone so far.

Night 1: I used the pad once at about 12:30, on almost the lowest setting. The pad will vibrate for 35 minutes, then turn itself off. I turned it off after about 20 minutes, as my legs seemed to have calmed down and the vibration was… well, not a problem really. I just wasn’t used to it and it was keeping me from falling deeply asleep. I was sleeping lightly, and really, that’s better than what I’d be doing without the pad. But once I turned it off, my legs stayed calm and I went back to sleep until about 4:00. At that point, I felt wide awake. No restless legs, but I wasn’t able to go back to sleep. I got up at 5:00.

This is pretty typical for me.

But the interesting thing was that I didn’t take any extra medication during the night. I usually take one full Sinemet before bed and have one more pill, cut in half, ready to take as needed during the night. I didn’t take either half pill. THAT was an amazing thing.

Last night was not as good. I had one episode at 12:30 (that seems to be normal – I guess the bedtime medicine wears off about then). I took one of the half pills, then used the pad for the full 35 minutes. I’m getting used to the vibration and managed to go to sleep before it turned off. I woke again around 3:30 with restless legs and tried the pad again without taking the other pill. I think the pad helped, but I could feel light sensations in my leg the whole 35 minutes. But when the pad went it off, my leg was calmer and I could lay still. I couldn’t get back to sleep though, and got up about 4:45.

Maybe if I’d taken the second half pill, the pad would have worked better and I could have gone back to sleep. Or maybe not. There are lots of times when I’ll take a Sinemet around that time and while it might calm my legs down, I still don’t get back to sleep.

So the jury is still hearing evidence. I was told that it will take time for the pad to reach its full potential with my body. Two nights is not enough time for real results, so I’ll be patient.

I think I should continue to take medicine as needed. That’s what Carl, the company representative, said I should do for a few weeks. Perhaps the pad will make the medicine work faster, and maybe help the effects last longer. That’s something to work toward. My tendency is to always want to stop taking medication as soon as possible, so I have to keep the goal in mind. Keep taking the meds if I have a problem at night, use the pad, give my body time to adjust. Maybe eventually, I can reduce the meds. But don’t rush it…

I guess this means I have to be patient. Darn!

 

 

Cautious Hope

Wow, am I excited. It’s here! See?

20171031_122936.jpgAnd what, you ask, is that? And are you excited or cautiously hopeful? Make up your mind.

You sound a bit put out. Hush now, I’ll explain.

This… thing… is a Relaxis Pad. FedEx delivered it today, after a day or two of delivery snafus or delays. I was beside myself wondering when it would get here.

Hold on, I’m telling you.

Relaxis is supposed to alleviate restless legs. Now, I absolutely know that there are no guarantees. It might not do a thing for me. But we had a trial run and I’m… cautiously hopeful.

 

 

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Please work. Please, please, please, please….

 

 

Here’s the long story: I’ve had RL for twenty years. The lost sleep cannot even be calculated. The agony, as it has worsened over the last few years, has driven me nearly insane. I hate taking medication, but  I’m never without my Sinemet, no matter where I go. I take that stuff like it’s my True Promise of Everlasting Life.

So recently I was taking a Sleep Improvement Class. I have other sleep issues besides RL, but the RL dictates everything about my behavior and success, or lack of it. And last week, at the last class, the instructor mentioned she’d found out about this thing that might help.

It’s the only non-drug treatment for RL that’s approved by the FDA. It’s only available by prescription. And it costs a fortune, but there’s a 30-day return guarantee if it doesn’t work for you.

Call me skeptical, yes. But I’m not going to pass up a chance. So I asked my doctor about it and she asked the neurologist, who said he’d heard of it but didn’t have much knowledge, but he didn’t think it would hurt to try. So I picked up a paper prescription, took a picture of it, and emailed it, along with an order form, to the company making the things.

http://myrelaxis.com/

Then waited at the extreme edge of impatience for the thing to get here.

Which it DID, today.

The deal is, once it arrives, the patient unpacks it and gets on the phone with a company representative. “Carl” was professional and helpful. He had me sit on the pad and turn it on, then talked me through the controls. It’s not difficult or confusing, but he had some tips, then had me increase the vibrations until it was pretty high. While I sat with the thing grandly shaking, he talked about hard-of-hearing patients liking the high setting because then they could hear it. Then he had me turn it down.

This was a test.

He explained that some people can’t handle vibrations and this time at the high speed nearly always brings that into the open. These people almost never succeed with the Relaxis and they have to return it.

But I passed.

Which means I get to try it out for the next few weeks, experimenting with settings and circumstances to see if will stop the symptoms. I’m not sure what it’s actually doing that a normal vibrating pad doesn’t do – I’ll ask that on Friday when I talk to Carl again. But the idea (I think) is that the frequencies used actually trick the brain into thinking the legs are moving. It therefore stops sending insane signals to the nerves.

The best, best, best part? We got the portable version with a battery. It travels. I was seriously this close to never going to visit my kids again because car rides and plane trips have become pure torture. There is only so much Sinemet one person can take, after all. So my cautious hope is underlain with a solid thread of please work excitement. Please, let me have my life back.

I will report, probably more than you want to hear. Tonight is the First Night.

Let’s do it!